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March, 2002 This web site is dedicated to helping everyone learn more about what a special girl Kacie is and to educate everyone about the disease that she is fighting.
Diagnosis and Beginnings Kacie did well through the night. They still have her sedated enough so that she remains comfortable. If she was more awake, then she might try to fight the ventilator. The pulmonary specialist decided to do another bronchoscopy today. They wanted to compare today’s results with the results from the other day to determine if there is any active bleeding within the lungs or if they could see infection. They are going to culture a sample of the tissue that they obtained to determine the species of yeast. They didn’t see any active bleeding, but there was some inflammation or irritation. They used a large screen monitor to view the entire procedure. It was pretty awesome to watch the scope going through the various areas within the bronchial tubes. The physician commented that her bronchial tubes were different than the average persons; the branches start branching off sooner than average. We know that Kacie is a “one of a kind” and she is a special design from God. This difference in the bronchial tubes is not a problem though. They ordered an echocardiogram to take another look at her heart for fluid buildup and to look at the hickman catheter for the blood clot that they had originally seen. The results showed there wasn’t any fluid and the blood clot had dissolved. This is excellent news! The preliminary results of the skin biopsy that was done yesterday did not show signs of graft vs. host disease (GVHD). The dermatologist concluded that Kacie had a drug reaction; which caused her skin rash. This is also excellent news because we’ve already stopped the medication that was suspicious for causing the reaction and her skin looks a whole lot better today. The eye exam results did not appear to have any signs of infection. This is also excellent news! The doctors also ordered several other tests for different viruses that can harbor within the secretions in the nose. These tests were done today and they will be sent for cultures. Dr. Charnas, the neurologist, checked Kacie’s eyes because of the concerns with them being asymmetrical. He felt that the ventricles in the brain are fine and they will continue to examine her eyes. Kacie had dialysis again today. Her blood pressure did a little better than yesterday. They were only able to pull off about 1.3 lbs. They still had to give her medications and fluids to keep her blood pressures high enough to pull fluid off. The renal specialists believe that her vascular system is getting dry and they need to go slow to pull off fluid so that they can get the fluid to shift from the tissues into the vascular areas. Kacie’s fever has gone back up to 104.5?F and her heart rate has been high. Please continue to pray for her full recovery and all the other children on this unit. Praise God for all the miracles and little steps towards improvement that Kacie and Caleb have been making. Smiles & Giggles, Donald, Kathi, Erin, & Kacie March 2, 2002 - Day +142 - Hot, Hot, Hot...Think COLD Kacie had a restless night last night. Her temperature had gotten up to 105.5?F at around 4:00 a.m., so the resident was called in to examine her. They used cold compresses plus Tylenol to bring down the fever. They also had to change her ventilator settings to make her more comfortable. She started breathing more heavily and she was stacking her breaths (which is described similar to hyperventilating). The doctors increased her sedation to help make her relax. She had dialysis again today. Her creatine has been decreasing each day; which is a real blessing. Today it was at 1.7 and we’d like to see it below .9 in order to believe that the kidneys are starting to function properly again. She still looks like she has fluid within the abdominal area, but her weight is in the right range of what they believe is her dry weight. The gram stain test from the bronchoscopy came back as no organisms seen and no white cells in the sample. We are still waiting for the culture results to determine whether she has yeast infection within the bronchial tubes. She is on antibiotics to treat the yeast, but if something cultures they plan to add additional antibiotics that are sensitive to the species of the yeast that she may be carrying. The doctors are scheduling a head to pelvis CT scan for Monday. They have to wait until Monday, unless it becomes emergent, due to needing specialist people in the room to help with ventilating her during the test. They will be looking at the ventricles in the brain, the sinuses, the mastoid, all the organs in the chest and abdomen areas, and the pelvic kidney. They are looking at scheduling the special bone scan on Tuesday to check for infections within the bone. If they don’t see a source of infection for the high fevers, then they will start looking at each medication that she is on. This is harder to determine and can be more dangerous by taking her off of medications that she really needs to cover her from infection. It is late in the evening and Kacie’s temperatures have risen to 105.5?F again. We have tried to cool her off with ice packs. They also ordered a cooling blanket to help with bringing her temperature down. They did go up on her sedations to help her relax more and she looks a lot more comfortable. Please pray that her temperature breaks and that she is comfortable through the night. Pray that her lungs strengthen, all of her vitals improve, and that if there was infection within her body that it disappears due to all the medications that she is on. Pray for all the children needing healing tonight. Thank you once again for your faithfulness in prayer for Kacie’s full recovery. Smiles & Giggles, Donald, Kathi, Erin, & Kacie March 3, 2002 - Day +143 - Sprinkling Miracles... Today has been a day full of a flood of tears, emotions, frustration, anger, and then a sprinkling of miracles to help strengthen our faith once again. Kacie had another rough night filled with high temperatures, low blood pressures, and difficulties with the ventilation settings. Several times throughout the night, I was awakened with several doctors discussing the correct ventilation settings to help sustain Kacie and make her the most comfortable. They finally determined the best settings would be to have her on pressure support, and once they made the adjustments Kacie appeared much more comfortable with her breathing. The renal specialist decided to hold off from doing dialysis on Kacie today. He decided that he should give her a break; especially since her blood pressure has been low and they were thinking they had reached her dry weight. It is difficult because she still has fluid in the tissues and they are trying to get the fluid back into the vascular system so that dialysis can help pull off the extra fluid. We were concerned about them not doing dialysis since she had gained 2.2 lbs. through the night; however, we were told it would be best not to keep pulling fluid off when the blood pressures were so low. The bone marrow transplant (BMT) physician wasn’t very positive today, painting a very gloomy picture. However, all the other physicians, specialists, and nurses are providing us hope and positive outlooks. We are determined to only allow God to make the decisions concerning Kacie’s overall health and we only want positive thoughts in her room. Please pray for our comfort and patience, and pray for Kacie’s full recovery. Kacie has been on blood pressure support throughout the night and during today. They are giving her medications to increase her blood pressure. They need to get the blood pressure under control in order to have good dialysis treatments. The infectious disease specialist has reviewed Kacie’s previous CT scans of her lungs and is anxious to get another CT scan tomorrow to compare the two. Preliminary results of the bronchial test show low yeast growth. The infectious disease specialist had commented that he would be adding another antibiotic to help against the yeast infection. Now I’ll try to explain the sprinkling of miracles that have been sent our way to help lift us up. We had very little energy today, but Donald called our pastor Dr. Richards to give him an update on everything concerning Kacie’s medical condition. Dr. Richard immediately got the prayer chain (from Seaford Baptist Church) in motion. Soon after we got off the phone with him, we felt a lot of burden lifted from our shoulders. All of a sudden Kacie’s blood pressure was stabilizing and they started weaning her off the blood pressure support medication. Her temperature and heart rate started decreasing. The miracles of Kacie’s medical conditions improving and the blessings of our peacefulness provided us hope at a time when we were struggling emotionally. Our thankfulness and appreciation goes well beyond words for the support of our church family. Praise God for the miracles and blessings that we may have a more comfortable evening. Every 24 hr. period, every hour, every minute, and every second is a critical moment in the improvement of Kacie’s overall health. We know that God will continue to pour in the miracles and blessings. Please pray that Kacie’s blood pressure, temperature, heart rate, kidneys, lungs, and all the other organs all return to normal. Pray for our strength and faith. Pray for all the other children as well. We’ve received several letters asking for Caleb’s website, so we must have forgotten to add it to our journal entries. You can access his website at www.calebglover.com/journal.html Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 4, 2002 - Day +144 - Prayers Being Answered...
Thank you for the many prayers. Prayer is powerful! Kacie’s blood pressure started stabilizing last night. She was on medication in order to keep her blood pressure up; however, she did so well today that she didn’t need the medication even during dialysis. Her dialysis run went very well and they were able to take off 3.5 lbs.
We decorated her room with a banner that hangs from the ceiling that has many colorful butterflies hanging across the room. She has been opening her eyes a little and we wanted to make sure that she has something beautiful to look at. We’re also going to hang her smiley face lights across her windows. We believe that having it cheerful in her room really helps her to feel better.
The cultures from her bronchoscopy now show moderate yeast growth. The chest x-rays this morning looked hazier, but it is probably due to the extra fluid that she put on since she didn’t have dialysis yesterday.
She had a CT scan from head to pelvis tonight, so we won’t have any results until the morning. They had the resident doctor, the nurse, and the respiratory specialist all went to radiology for the scan to ensure a safe trip. The resident had to bag Kacie to provide her oxygen during the trip down and back up to her room. They were able to hook her back up to the respirator during the CT scan; which made us feel a lot better. It is difficult watching them bag her for a long period of time. She did extremely well for the scans.
Kacie has opened her eyes several times today. We read an email message that her sister, Erin, sent and we were in tears because it was so special. We are so proud of Erin for everything; especially her bravery. Erin is the best big sister ever! We really miss her.
Please continue your prayers for Kacie’s full recovery; especially pray that the yeast infection in her bronchial tubes go away, pray that her kidneys return to normal, and pray that she continues to improve and nothing else appears. She made some improvements today and we know she will continue to make improvements. God hears our many prayers and has shown us many times miraculous blessings for Kacie.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 5, 2002 - Day +145 - Turbo Vent...
Kacie had a good night last night. Her blood pressures remained stable throughout the night. Around 5:30 a.m. she spiked another fever. She had fevers most of the day.
The ICU physician and the respiratory therapist have been trying to tweak Kacie’s ventilator settings. She wasn’t very comfortable with the settings, so they were able to change her ventilator to a newer model that allows for more sensitive vent settings. She appears to be a lot more comfortable with her breathing.
Her chest x-ray this morning looked better so the doctors were very pleased. The CT scan results showed that the ventricles in her brain, sinuses, mastoid, heart, kidneys, liver, and spleen all looked good on the scan. The lungs showed two collapsed capillaries in the back area of her lungs. The doctors believe the fluid is within the spaces in the back of the lungs; which isn’t allowing enough air to fill it back up. They also noticed white space within the right lobe of the lungs. The white space could be infection or fluid. The doctors have doubled up on Kacie’s antibiotics against yeast infections to ensure that she has good coverage.
Kacie had dialysis again today. The doctors believe she may be producing urine, so they have stopped her continuous bladder irrigation to be able to monitor. Her creatine level went down from 3.4 to 2.3 today; which is very good since it is heading in the right direction.
We spent some great times with Caleb’s parents, Amy and Steve, and with Brady’s parents, Carolyn and Andy tonight. The guys went to a local Mexican restaurant and brought back dinner. We sat in the family lounge eating and just sharing stories. Kacie, Caleb, and Brady are all in ICU status, all on ventilators. Please pray for all of these children to have full recovery.
Pray that Kacie’s lungs fully heal and the antibiotics that she is currently on will destroy whatever infection is within her body. Pray for continued strength and recovery. We are so fortunate to have all of you praying for our little girl. Thank you!!!
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 6, 2002 - Day +146 - False Alarm...
Kacie had a rough evening last night. Her temperature had risen to 106°F. This is an extremely high fever and we were very concerned. We had to ice her body down because the Tylenol wasn’t bringing it down. There is another medication that they can use to bring down fever; however, it is bad on the kidneys so they didn’t want to use it on Kacie. I had stayed up most of the night waiting for her fever to break. Her fever finally had decreased down to 102°F; which allowed me to relax some.
She had problems with her blood pressure again today. Early this morning, it was a little high so the nurse had to give her blood pressure medication to bring it down. Then midday, her blood pressure decided to start dropping and she had to have medicine to bring it back up. It is so scary that we had to use medicines to control her blood pressure. Once her blood pressure was stable, she was weaned off of the blood pressure medicine.
Kacie did great during dialysis. Her blood pressure remained stable. The dialysis nurse only took off ¼ lb., but they were more concerned with getting the toxins out rather than taking off extra fluid.
When the doctors came around today, they were very concerned about Kacie’s fevers and her blood pressures. They said that they would be aggressively searching for whatever could be causing her to be septic. Septic is a condition where there is usually an infection within the blood system that can cause high fevers and blood pressures to drop. They immediately ordered an ultrasound and x-rays of her entire abdomen area. They also contacted a surgeon to start reviewing Kacie’s medical history just in case Kacie might require emergency surgery.
The fellow came in soon after the radiologist read the ultrasound to explain that they found something. Now we have an answer to her high fevers and her blood pressure drops. He proceeded on to say that they found what looks like an abscess in her pelvic kidney. This is the area of Kacie’s tummy that she has complained about with pain for quite some time. On one hand we were upset to hear this news, but on the other hand we were elated because it sounded as though we had a diagnosis; which means they could define a treatment plan. They explained that a CV Radiologist would do a CT fluoroscopy on her and if they felt it safe, then they would take a needle into her kidney and insert a tube to drain any fluid from the abscess.
As we were writing this update, the CV Radiologist came out to let us know that there wasn’t any sign of an abscess. They examined both kidneys and they were enlarged, but there weren’t any signs of abnormal fluid or abscesses within them. We were shocked! Here we had our hopes up at the fact that the doctors had finally found the source of infection, only to have our emotions let down because now we are still in a search mode. Where is this infection?
The CV Radiologist proceeded to explain that they were going to tap into her abdomen area to draw some fluid out in order to culture and run tests. The one puzzling question is whether she is having problems with the shunt drainage. Kacie has a shunt in her ventricles within the brain that drain through a tube into her abdomen. We are concerned that the cerebral fluid may not be absorbed through the abdominal walls and that may be the cause of infection. Here we go again, it is called “hurry up, and wait, and wait, and wait”. It is very exhausting every time we are in the mode of waiting for yet another answer to very difficult medical situations.
Please pray for the doctors to have the wisdom to discover what is causing Kacie’s medical situations. Pray that if there is an infection, that they discover and resolve the infection quickly. Pray for her continued improvement in her overall medical situations. Pray for her full recovery. We are so grateful for all of you! Thank you for being with us in prayer.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 7, 2002 - Day +147 - God's Gift...Kacie's Donor...
Kacie’s temperature has remained lower throughout today; however, it is starting to rise a little this evening. Hopefully, the cold washcloths and Tylenol will keep her temperature down during the night. She has started showing signs of a rash. Please pray that it isn’t graft vs. host disease (GVHD), especially since she is not on any medication to prevent GVHD. It appears that the rash is just a reaction to one of the medicines that she is taking.
There was another drop in white blood count. It dropped to 1.1 and .9 for her absolute neutriphil count (ANC). Her creatine level dropped to 1.5; which probably means the kidneys are trying to recover.
Kacie had to get a splint cast for her arm and fingers. Her fingers are starting to bend inward, so the splint is suppose to help straighten and strengthen her joints within the fingers. They were only able to make one for her right arm since the left arm has an arterial line in with a splint to hold her arm straight. The physical therapist brought in knee immobilizers to use for straightening and strengthening her knee and leg joints.
The chest x-ray of the lungs this morning looked about the same as yesterday. All of her ventilator settings are set pretty low. The doctors want to keep her on the ventilator until they are confident her lungs have healed, plus they want to have the extra fluid issues within the abdomen under better control. Kacie also had x-rays done of the abdominal area. We haven’t gotten the final results back yet. The doctors were concerned that she might have leakage of free air within the abdominal area, but the initial report from the x-ray didn’t show any signs of free air.
Kacie’s weight had increased again today. Her abdominal area was a centimeter bigger than yesterday; which probably means that even though they pulled off fluid from her abdomen last night, it has filled back up with fluid. She had dialysis and they pulled off about 3 lbs. of fluid.
God has blessed us with another miracle! Kacie’s donor is scheduled for a physical tomorrow and if all goes well, she will be scheduled for a bone marrow harvest next Thursday or Friday. This means that Kacie will receive a boost of donor cells either Thursday or Friday next week. We are ecstatic at this news! Kacie’s donor is a true gift from God with a loving and caring heart.
Caleb was extubated today! What an exciting time! Please keep him in prayer as he recovers and his little body starts to strengthen.
Please pray that the doctors obtain the wisdom to understand whatever infection may be harboring within Kacie’s body. Pray that her lungs and kidneys continue to heal. Pray that the fluid within her little body goes into the vascular system and then can be pulled off with dialysis. Pray that her lab and chemistry results all return to normal. Pray for every organ and cell within her body, and pray for her full recovery. Pray for our very special friend, who is within our hearts daily, Kacie’s donor.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 8, 2002 - Day +148 - Kacie Needs God's Healing Arms...
We cry, we pray, we cry some more, and we pray some more. Tonight’s journal entry is very difficult to write, as our emotions are being tried in so many ways. We clearly don’t understand why Kacie has to endure so many medical challenges. We pray that God’s blessings on Kacie will be a benefit for all that have grown to love her. Kacie is working extremely hard to help combat her many medical conditions.
The other day Kacie had fluid drawn out of her stomach so that they could culture it to determine if there is any infection. So far the cultures have not grown anything. The puncture into her abdomen was very small, but she kept bleeding from the site so the CV Radiologist had to “super glue” the puncture to get it to stop bleeding.
Kacie has a skin rash again, so they had to do another skin biopsy today. We should get the results back within a couple of days. Hopefully, it is just a reaction to medication and not graft vs. host disease (GVHD). They had to put a couple of stitches in and we are hoping that it doesn’t start bleeding.
The chest x-ray that was done this morning of Kacie’s lungs was the same as before. Her blood gases have been good and the ventilator settings are set low. They even went down in her respiration settings. Her temperature was good all day, and then as evening approached she had a fever of 104.4° F. Between lots of Tylenol and by covering her in cold wet cloths we were able to bring down the fever.
Kacie had dialysis again today. They were only able to take off around 1-½ lbs. She was having problems with her blood pressure during dialysis; which probably means that her vascular area is dry. Unfortunately, she has a lot of fluid built up in the peritoneal area (or area within the abdomen). Her body should be reabsorbing the extra fluid, or it should be going back into the vascular areas; which would allow for dialysis to pull the fluid off. It appears as though she is accumulating more fluid than she is taking in, so the doctors have ordered an ultrasound Doppler study to be done to evaluate the blood flow between the various organs. This will be done in the morning.
A surgeon was contacted in order to start evaluating Kacie’s medical history and recent CT scans and test results. He came by to examine Kacie as well. The doctors felt they needed to consult with a surgeon just in case anything shows up on any of the scans or tests that may require emergency surgery.
Kacie had CT scans with a contrast solution from her head to her pelvis area. The CT scan results of her lungs and other organs and abdomen area all were fine.
Earlier in the morning I had noticed that Kacie had a large bulge on her head where the valve for her ventricle shunt is located. Once the doctors examined the area, they contacted the neurosurgeon to come and examine it. According to the doctor’s examination and the CT scan results, the shunt is having problems draining into the abdomen area. The abdominal area is so full of fluid that it has caused the shunt to back up with cerebral fluid within the ventricles. The CT scan also showed that the ventricles are now enlarged. Without going into a lot of details, Kacie may require emergency surgery to fix her shunt problem. They will be checking her neurological status throughout the night; otherwise, they will do another CT scan in the morning and make their decision on the best method for solving this problem.
One of our ICU nurses had a massive heart attack last night and went to be with the Lord. Bryan is a very special nurse and he was Kacie’s nurse yesterday. We had just talked with him about his love for nursing and how much he loved helping these special children, plus his love for his own daughter. Please keep his family and friends in prayer. Pray for all of the families and staff on this unit, as we are grieving loss over a very special person.
Again, this entry was difficult to write. Tomorrow will be very busy and at this time is unpredictable. Please pray that God keeps his healing arms around Kacie throughout the night and our eyes are opened to many miracles when we awaken in the morning. Pray that God intervenes and miraculously cures Kacie’s many medical challenges so that she doesn’t have to visit the operating room again. God bless you and your families.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 9, 2002 - Day +149 - Tugging On Our Hearts...
This has been a very long and exhausting day. We will try to update first thing in the morning with the details. Sorry for not updating tonight, but we need to get some sleep. Kacie is stable; however, she needs a lot of prayers and special healings from God. Please pray that the fluid in her abdominal area starts to be absorbed within the body. Pray that whatever is causing her little body pain gets resolved. Pray that her body will be healed without any further surgeries or additional complications. Pray for our strength and endurance as we pour out our love and support to ensure Kacie will have a full recovery.
Sent on Sunday 3/10/02 at 9:00 a.m. c.s.t.:
Today was filled with lots of tears. Oh, how we want to just hug our girls and hold on to them tightly. Erin is many miles away, so we send hugs and kisses over the phone lines. While Kacie lays still on a large hospital bed, with lots of tubes coming out of her body and dependant on lots of medication and equipment to help support her through these medical challenges. We dream of the day when we can all be back together as a family.
Kacie had a CT scan of her brain to check the size of the ventricles. The scan results were the same as last night with no change on the size of the ventricles. The neurosurgeons discussed needing to move Kacie’s shunt drainage from the abdominal area into the main artery of the heart. They have decided to wait until Monday to get her more stable. They plan to give her several doses of fresh frozen plasma (FFP) and keep her platelets and red cells higher.
Kacie had a Doppler ultrasound done of her abdominal area to determine the blood flow within all the vessels. They also looked at the flow to her legs and feet because during the day one foot was very cold while the other was warm. The ultrasound results showed proper blood flow through the vessels and among all the organs.
She had dialysis again today. Her blood pressure was staying low, so they decided not to pull any fluid off. They just pulled toxins out of the blood.
Kacie’s abdominal area is very swollen with fluid. The doctors decided to insert a peritoneal tube into her abdomen to drain some of the fluid. This procedure has to be monitored very closely because as fluid shifts within the body it can cause the blood pressure to drop. When they inserted the tube they thought that it would come gushing out; however, the fluid came out at a good rate. They kept the tube in for six hours and were able to get off 1000 cc of fluid. We also measured her abdominal area and it had decreased one centimeter. They didn’t leave the tube in due to the increased risk of infection, so they “super glued” the puncture. The doctors have discussed putting another tube in for several hours tomorrow to drain off more fluid.
Her chest x-rays still look the same and she still has fevers. We constantly are covering her in cold wet cloths to keep her temperatures from rising anymore. There are a lot of specialists involved in her care and her daily schedule is very busy.
Kacie needs us to continue to lift her up in prayer. God is providing us strength, hope, and encouragement. Please pray for the doctors to have the wisdom to resolve these medical challenges that Kacie is facing. Pray that Kacie’s abdominal area clears out the extra fluid, pray that her ventricular shunt is able to drain properly, and pray for her continued healing until she has a full recovery.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 10, 2002 - Day +150 - Special Healing Needed...
Awesome! Kacie is on day +150 and even though she has been through a lot of struggles, she has been touched multiple times by God’s healing hands. We were hoping to be back in Virginia by this time. We are looking forward to the day when we start traveling back home.
It is amazing how popular and loved Kacie is on the bone marrow transplant unit. Several nurses have been requesting to be assigned to Kacie. She is a very busy patient, and at this time she is the most critical patient; however, the nurses love taking care of her. She is also very popular among all the other families on this unit. We have developed so many wonderful friendships, and it is like having an extended family. Everyone has shared so much love, concern, and prayers. When we are having difficult times, they are always right here to help lift our spirits back up.
Please pray for one of our friends, named Rachel, who also has fanconi anemia. She is on day +32 today and was released from the hospital. Keep her in prayer that each day brings restored health. Caleb is recovering and still needs our prayers. The infection within his lungs is healing quickly and hopefully within a little bit of time, he will be heading home. Brady is still on the ventilator and needs special healing. Also, keep Connor and Kiara in your prayers as they are still recovering from a lot of difficult days. Please pray for all of the children on this unit, including the ones that are now going to clinic and are released from the hospital.
Kacie’s dialysis treatment went very well today. They were able to take off 4.4 lbs. They had to use medications to keep her blood pressure up so that they could pull more fluid off. It was easier to pull fluid off since they took fluid out of the peritoneal area last night. Measuring her tummy, she has lost about an inch in size. The only problem is the fluid shifts and then she regains fluid back into the peritoneal area.
This morning we noticed that the area around the valve to Kacie’s ventricular shunt was smaller. Since the doctors were able to drain fluid out of Kacie’s peritoneal area (abdominal area), it left room for the cerebral fluid to drain properly. We were hoping the ventricles would also reduce in size. The CT scan that was done today of her ventricles showed the same as the last scan.
The chest x-ray of her lungs remained the same as the one from yesterday. The doctors also ordered another Doppler ultrasound. This ultrasound is to look for the blood flow within the neck and heart. They needed to check for any blockages prior to her surgery tomorrow.
Kacie is scheduled for surgery tomorrow afternoon. She will be having her shunt tube redirected from the peritoneal area into the main artery of the heart. Hopefully, this will allow the peritoneal area to heal. It would be wonderful to wake up in the morning with a miracle that the fluid within her peritoneal area reabsorbs within the body and that they have to cancel the surgery.
As in all of my journal entries, we still ask that you please continue to pray for Kacie’s overall medical challenges and for her full recovery. God performs miracles and we are asking once again for his healing arms to wrap around Kacie. Please pray for her strength and for God’s guidance in any decisions concerning her medical care. May God bless each and everyone.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 11, 2002 - Day +151 - God's Medical Miracles & Healings...
We requested, in yesterday’s journal entry, that everyone pray for God to provide the doctors with the guidance in any of Kacie’s medical decisions. We also mentioned how wonderful it would be to wake up to a miracle healing where they have to cancel the surgery. There is nothing so great that God can’t handle. He knows what is on our hearts and with his healing arms wrapped around Kacie he continues to show his existence in every way. Praise God for giving us a wonderful day!
Kacie’s temperatures have been good all day. She has maintained good control over her blood pressure. Kacie was a lot more alert today and they are having problems keeping her comfortable with sedatives. She is on heavy doses of sedatives and they keep increasing the doses.
They started early this morning by having chest and abdominal x-rays done. Then the dialysis team started Kacie on dialysis. She was scheduled as an add-in for surgery and they thought it would be after noontime. Around 10:30 a.m., the surgical team called and wanted to go ahead and prepare to take Kacie to the operating room. Everything started happening so quickly. One of the neurosurgeon residents came to explain the entire procedure. They will be redirecting Kacie’s ventricular shunt from her abdominal area into the main artery in the heart. He wanted us to sign the consent forms; however, we refused until we could meet with Dr. Lam, the neurosurgeon, and the radiology surgeon who will be performing the surgery. The dialysis nurse had to stop Kacie’s dialysis run early. He was able to net about 1-½ lbs. of fluid off.
Dr. Lam came up and discussed the entire surgical procedure; to include, his concerns and all the risks involved. We signed the consent forms at that time. We mentioned that x-rays haven’t been taken of the entire shunt; which is required for the surgery and Dr. Lam mentioned that he would have them done while in the operating room prior to the surgery.
We immediately called our parents to let them know that Kacie would be in surgery within about 15 to 30 minutes. We hurried down to see Steve and Amy, Caleb’s parents, and ask them to pray for Kacie.
Everyone started rushing around to prepare to take Kacie to the operating room. Two anesthesiologists had come to help transport her. They had taken her off the ventilator and had started bagging her to provide oxygen during the trip. Everyone was in the room ready to leave, her sliding glass doors were opened, and we had just unlocked her bed when Dr. Lam reappeared.
Dr. Lam came in and started tapping on Kacie’s tummy. He had just spoken with Dr. Peters, the bone marrow transplant doctor, and discovered that the ultrasound done yesterday didn’t show as much fluid in the peritoneal area. He looked extremely puzzled. We asked if he felt they might want to do another ultrasound to see how much fluid is within her peritoneal area and he said that was what he was thinking.
They ordered an emergency ultrasound. The radiology technician was there within minutes and then the whole events of the day suddenly changed. Several doctors watched as the technician scanned Kacie’s entire abdominal area. There was only a little fluid within the peritoneal area. Her organs were enlarged, but there weren’t any large areas of fluid that would indicate the shunt needed to be moved.
Dr. Lam explained that Kacie’s ventricles should be draining off about 500 cc. of fluid each day. It was two nights ago when they drained the fluid out of her peritoneal area, so she should have refilled that area with about 1000 cc. of fluid. Clearly the ultrasound did not indicate that as the case.
Imagine the look on everyone’s faces as they witness yet another miracle in Kacie’s life. Now, imagine the tears of joy as Donald and I are relieved to hear this news. Of course, the doctors are still confused because they still have to figure out what is happening in Kacie’s little body. Tomorrow they have scheduled the gastro intestinal (GI) doctors to perform an upper and lower GI examinations. They will probably biopsy within these areas as well. They will be looking for any infections or graft vs. host disease (GVHD). Kacie has been bleeding more within her mouth, stomach, bladder, and in her stool. Some of this may be due to her blood clotting factors aren’t at the proper levels. They started giving her fresh frozen plasma (FFP) several times to correct the clotting factors.
Please continue your prayers. God is listening and constantly amazes us with many miracles. Pray for Kacie tomorrow as they perform these tests. Pray for the doctor’s wisdom to know how to treat Kacie. Pray that God continues to pour blessings on her. Praise God for showing us these blessings. Pray for Caleb, his CMV test results have come back and he still has the virus. He will start rigorous treatments tomorrow to help combat this virus. Pray for all the other children on this unit. Please pray that God continues to wrap his arms around them and continues to bless them each and every day. Praise God!
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 12, 2002 - Day +152 - Joyful & Blessed Day...
Another day filled with joy. Kacie is taking baby steps towards her full recovery. Her temperatures and blood pressures have remained normal. She even looks more comfortable. They still have her on lots of sedatives, but occasionally she opens her eyes and moves around a little bit.
Kacie had upper and lower GI tests today. They brought in two very large screens to view the entire procedure. The upper GI indicated that there is still inflammation within the esophagus, stomach, and small intestinal areas. There was a spot within the stomach that had been bleeding, but it had clotted on its own. The doctor didn’t notice any active bleeding within the entire upper GI tract. The lower GI also indicated inflammation. Four different areas within the lower GI tract were biopsied to determine if she has graft vs. host disease (GVHD) within this area. We should receive the results on the biopsies tomorrow.
The respiratory specialists and ICU doctors decided to turn down some more of the settings on Kacie’s ventilator. Her chest x-rays still look the same and her lungs sound clearer. These are all great signs towards getting her ready to be extubated. Hopefully, that will be real soon.
Kacie had dialysis early this morning and they were able to take off about 3 lbs. Her weight is more stable within the last couple of days which is exciting because it probably means her kidneys are starting to function again.
Please praise God for the miracles that we’ve been able to witness. Continue to pray for Kacie to amaze everyone with God’s healings. Pray for Kacie’s full recovery. Pray for all the other children that we have become so close too. Pray for Caleb’s medication to help and not hinder his little body. Pray for Carley, she is now on a ventilator and needs her lungs to open up. Pray for Brady to continue to recover so he can come off the ventilator. Pray for CJ that his fevers break so they can go home. Pray for Kiera that she improves and can return home. Pray for all of these children and pray for God to guide the doctors in every decision they make. Pray for God’s love to be present all around us.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 13, 2002 - Day +153 - Elvis Sighting...
There is an Elvis sighting in Kacie's room at Fairview University Medical Center. Actually Carl, who volunteers time with Kacie, is also an artist and he is painting Kacie's doors leading into her room. Since Kacie always told the doctors and nurses, "Thank you, thank you very much", we thought it appropriate to have Elvis on her door. Everyone was admiring Carl's great artistry. Thanks, Carl!
Kacie’s chest x-ray this morning was a little better than the previous x-rays. Her temperature has remained normal throughout the day. She is breathing well on the ventilator and the settings are at low levels. The ICU doctors believe that she is progressing well and hopefully she won’t have to remain on the ventilator long.
They were able to take off 2.2 lbs. of fluid during dialysis today. However, her weight still remains higher than normal. Every day they give her lots of fluids, whether it is medications, nutrition, or blood products, so she increases in weight. Once her kidneys start working properly, they will be able to help pull the extra fluid off, until then she has to have dialysis on a daily basis.
Kacie had a follow up CT scan of her ventricles. The scans showed that the ventricles haven’t increased in size; which is great news. Hopefully, they will start to decrease and return to normal size.
We haven’t gotten the results back on the upper and lower GI tests. They were expecting the results of her biopsies to be back today, but they haven’t gotten them yet. The skin graft vs. host disease (GVHD) looks a lot better since she has been on steroid creams.
Her white blood count (WBC) is at 1600 and her absolute neutriphil count (ANC) is at 800. Kacie really needs more cells. We were told today that there is a scheduling conflict with Kacie receiving her boost of donor cells, so it will be next Friday. Thanks to God Kacie is starting to do a little better. Keep praying for her progress. Pray for her donor who so graciously has consented to giving once again.
Please pray that Kacie’s kidneys start to function again and pull off the extra fluid, that her WBC and ANC increases, that the yeast and other infections are cleared from her body, and that her biopsies come back negative for GVHD. Pray that her ventricles return to normal, that her lungs are strengthened so she can get extubated, and that her swollen organs return to normal size and the extra fluid drains off. Continue to pray that her blood pressures, temperature, and oxygen saturation all remain stable and that she has a full and complete recovery. Please pray for quick recoveries for Caleb and Brady. Pray for all the children on this unit that we will see miracles in each of their lives.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 14, 2002 - Day +154 - Oh, What A Night...
Good news, Kacie’s white blood count (WBC) rose up to 2000 and her absolute neutriphil count (ANC) went up to 1300. Every little bit helps. She really needs those cells to climb higher until she can get a boost next week from her donor. Kacie’s temperature has stayed down all day again today. During dialysis they were able to pull off 2.2 lbs. of fluid. Her blood pressures have been stable and she didn’t need medication to help control it. The doctors are extremely pleased with her temperature and blood pressures.
The chest x-ray of her lungs this morning looked a little better. They were able to make a small change on her ventilator settings. They did an ultrasound of her abdominal area to determine if there is a lot of fluid retention, but the results only showed small areas of fluid. Her organs are still enlarged though.
We still haven’t gotten any results from the GI test biopsies. The results were already due, so maybe we’ll get the results back in the morning. Please pray that she doesn’t have graft vs. host disease (GVHD) within the abdominal area. Her skin GVHD seems to be under control with the steroid creams. They have increased her IV steroids in case they do determine that she has GVHD in the abdominal area. They will decrease them if the results come back otherwise.
Late this evening, as we sat down to write this journal entry, we noticed that Kacie’s shunt valve was swollen again. The resident contacted the neurosurgeons and they came to examine Kacie, plus they ordered an x-ray of her head. The skull looked good. They also did a chest x-ray to re-examine her lungs and they looked the same as this morning. At this same time we realized that Kacie wasn’t flowing from the foley catheter. The nurse went to replace the catheter, but during the process Kacie was coughing and large clots came out. We measured her abdomen and it was smaller by a half a centimeter. Looking at the shunt valve it appears that it may be a little smaller. The resident decided that she wants a CT scan done to make sure that her ventricles haven’t enlarged.
As if that news wasn’t enough, we noticed on the computer that another one of her test results came back showing that she may have the Epstein-Barr virus. This virus is also known as mononucleosis. We will have better answers in the morning once we discuss these results with her bone marrow transplant doctor and the infectious disease doctor.
We are having a very busy night, so this update may not even make any sense to you. Please continue to pray for Kacie’s health. She needs special healing and more miracles. Pray for every organ in her body to heal and pray that all infections are cleared up. Pray that she continues to improve each and every day. Thank you for following her progress and giving your support by your many prayers.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 15, 2002 - Day +155 - No GVHD In The Gut!!!...
Kacie had a busy evening last night. Once everything settled down, she slept well and had a great night. Her temperature stayed down, her blood pressure remained normal, and her heart rate and oxygen levels were good. Kacie had dialysis again and they were able to take off 3.3 lbs.
When we checked the shunt valve this morning, the swelling had gone down. The CT scan results showed that her ventricles hadn’t increased since the last scans. She is responding to our voices and occasionally opens her eyes and turns her head towards us. She also raises her hands anytime she wants our attention.
No GVHD in the gut! The biopsy results came back and there is no evidence of graft vs. host disease (GVHD) in the lower GI tract. This is exciting news!!! We have been very worried since she was having so many problems in her abdominal area. She still has the skin GVHD, but is being treated with the steroid creams. The doctors have decided to keep Kacie on the IV steroids for a few more days since she has now been diagnosed with the Epstein-Barr virus.
We learned quite a bit of information about the Epstein-Barr virus today. In most people, it is thought to be responsible for mononucleosis. However, in those who are immunosuppressed it is associated with post-transplant lymphoproliferative disease. Basically, the virus shows up in the B-cells of the lymphocytes. The doctors will be monitoring all of her lymph nodes closely. This virus is probably part of the reason why her organs are enlarged. The doctors will be sending out blood results to retest the virus on Monday. They plan to send blood samples to two different labs (one is in Virginia!). If the number of strands of this virus is greater than the results now, then they will start a medication that will kill off the B-cells. The B-cells are responsible for antibodies against viruses, so they will have to give another medication called IVIG to help with antibodies.
Please pray that the Epstein-Barr virus goes away. Pray that Kacie’s white blood count goes up, her lungs heal, her organs return to normal, and that she continues to improve in all her medical conditions. Pray for our friend, Caleb, and his family. He had to be intubated again this evening. Please pray for all of the families and children on this unit. Pray for all of our strength and faith.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 16, 2002 - Day +156 - Apnea?...
Mental, physical, and emotional exhaustion has finally hit me. Last night around 8:00 p.m. I was so tired that I decided it was better to go to sleep rather than update the journal entry. Sorry this is so late getting out, but we felt it would be better written with a fresh mind.
Kacie had another good day; filled with normal temperatures and blood pressures. Her chest x-ray looked about the same as the previous day. They were able to take off close to 3 lbs. during dialysis. Until her kidneys start working normally, she continues to gain weight from all the fluids and medications that they give her daily. Then dialysis takes the extra fluid and toxins out of her body.
Kacie’s nurse mentioned that Kacie has periods of apnea; which is where she will stop breathing for moments. The nurse has noticed that it has been happening more frequently, so she notified the doctors. Kacie has been known to have apnea in the past as well, but they want to monitor it closely. Some children have apnea when they are sleeping or on sedatives. They decided to have an EEG and MRI done. With the EEG they were trying to determine if she was having seizures, but also to look at the pattern of the brain waves. The preliminary results of the EEG showed that she has slowness in the brain waves; however, it was explained to us that it is more than likely due to the amount of sedation that she is currently taking. During the MRI she seemed to be moving around quite a bit. It took about an hour to complete the MRI. We should get the final reports on both of these tests soon.
Kacie’s ventilator tube had to be readjusted three times. The tube is taped tightly around her mouth and it had gotten really loose so the tube had slipped out some. They took an x-ray each time to determine if the tube was in the right place. Each time it only had to be adjusted a little, but it is difficult because they have to take all the tape off, readjust, and then re-tape it back. When the tube wasn’t in the right place, it would make her cough a lot.
The pediatrics ICU doctor examined Kacie and her ventilator settings. He decided to turn down another one of her settings. At midnight they turned down her peep to 6. The peep will have to be turned down to 4 or 5 before they will consider extubating her. They are pleased with the progress that her lungs are making and they are slowly weaning her down on the settings. We want to make sure that her lungs are strong prior to them extubating her because we don’t want to be in the situation of having to intubate her again. Erin is coming out for spring break and we really would love for Kacie to be extubated and be able to have a good time with her sister.
Please continue to pray that Kacie’s lungs heal, the Epstein-Barr virus disappears, all her organs return to the normal size and become healthy, and pray that she continues to improve until she has a full recovery. Pray also for the other children who are ICU status due to their current medical situations; they are Caleb, Brady, and Carley. Pray for all the other children on this unit as they recover and return to health.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 17, 2002 - Day +157 - Happy St. Patrick's Day!
Happy St. Patrick’s Day! Did you remember to wear green today?
Kacie’s temperature stayed down all day. At around 9:30 p.m. her temperature went up to 100.5?F. This is the first fever in about six days. Her blood pressure has also been high today. They will culture her blood again to determine if there is an infection.
They were able to pull off over 1-½ lbs. during dialysis. The renal doctor didn’t want to pull off a lot of fluid because he wants to give the kidneys an opportunity to start working. Her drainage appears to indicate that the kidneys may be working some.
The doctors believe the EEG results are good considering all the sedation medications that Kacie is on. The neurologist didn’t see any signs of seizure activity either. The MRI results were the same as the last MRI that was done, so they were pleased with the results.
Kacie’s ventilator tube had to be readjusted again this morning. The chest x-ray showed that it was still in too far. She had started coughing and raising her hands up to her neck area. They did another chest x-ray to confirm that the tube is in the proper place.
The pediatrics ICU doctor decided to turn down the peep on the ventilator to 5. He also turned down the tidal volume to 190; which is good. After the setting changes they checked her blood gases. The blood gases are good!
A lot of the families on this unit got together for dinner tonight. We had a feast of barbecue sandwiches, potato salad, cole slaw, corn-on-the-cob, chicken, and donuts. We know that donuts normally aren’t served with barbecue, but several of us have been craving donuts lately. One family even had visitors that brought homemade “St. Patrick’s Day” cookies. We have developed some great relationships with each of these families. It was good for us to get together for dinner. Everyone is great support for each other.
Several people have written and called asking about the spaghetti dinner, the Pampered Chef, and Kacie’s “Smiles and Giggles” cookbook fundraisers. Please check out the “How-To-Help” section of Kacie’s website for information on each of these fundraisers. We will be updating all the information within that section by tomorrow night.
Please pray for Kacie’s temperature to come back down to normal and her blood pressure to stabilize. Pray that tomorrow will bring forth some positive improvements in her overall health. Pray for her complete recovery. Pray for all the other children on this unit and their families.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 18, 2002 - Day +158 - Oh Where, Oh Where Have Kacie's White Cells Gone...
Kacie’s white blood count (WBC) has dropped to 800 and her absolute neutriphil count (ANC) dropped to 300. These numbers are very low. The doctors have decided to not only give Kacie two doses of the GCSF, but also to add GMCSF. Both GCSF and GMCSF are growth factors for white blood cells yet they respond differently; one is used for immature cells while the other is used for mature cells. By adding the GMCSF they are hoping that her white blood cells get a boost. Kacie is still scheduled to receive a boost of donor cells from the donor on either Thursday or Friday.
Kacie had a bone marrow biopsy today. The doctors decided that it is important to determine the cellularity of her bone marrow. Since day +21, every bone marrow biopsy has shown only 5% cellularity which is the volume of cells. They should get results tomorrow on the cellularity and then in about a week they will have the results of the donor status. So far she has been at 100% donor cells and the doctors believe she will still be at 100%.
Kacie has maintained a good temperature and good blood pressures throughout the day. She still tries to move around a little and opens her eyes every so often.
The ICU doctor has turned down a few settings on Kacie’s ventilator. He turned down the peep to 4 and turned down the respirations to 14. These are in great range for preparing to extubate. The ICU doctor believes she may be ready for extubating on Saturday. It would be a wonderful gift for Donald and I to have Kacie extubated on Saturday, since it is our 17-year wedding anniversary. We would love to see Kacie smile and hear her giggle again.
They did an ultrasound of her abdominal area again today. Her organs are still enlarged, but there is only a little bit of fluid in the peritoneal area. She had dialysis and they pulled off about 2.2 lbs. today.
Kacie’s calcium level has been high so the doctors ordered a test of the parathyroid to determine if it is working properly. They also sent blood to the two different labs concerning the Epstein-Barr virus. We should get results from one of these labs within a day.
This was a very busy day. Please continue to pray for all the children here. Caleb had to be put back on the oscillator tonight, so please keep him and his family in your prayers.
Please pray for Kacie’s donor. She will be going in daily for GCSF (growth factor for white blood cells) shots to help boost her bone marrow, then she will be giving her peripheral stem cells on Thursday. Pray for Kacie’s blood counts to rise, pray that her bone marrow improves, pray that her lungs and kidneys heal, and pray for her overall complete healing. Praise God for all the miracles that he keeps sending her way.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 19, 2002 - Day +159 - The Waiting Game...
Kacie had a good day with normal temperatures and blood pressures. She had a great dialysis run that allowed them to pull off a little over 4 lbs. This was the best dialysis run that she has had in several days. Hopefully, the fluid is shifting back into the vascular system so that it can be easily pulled off with dialysis.
Kacie’s white blood count (WBC) decreased a little to 700 and her absolute neutriphil count (ANC) doubled to 600. Her blood counts are still very low, but are improving. The last time Kacie was on GMCSF it took about three days before she got a big boost on her counts. Hopefully, each day we will see an increase in her counts.
The preliminary results of the bone marrow test show that Kacie still has low cellularity. We are still waiting for the final result on the percent of cellularity. We are also waiting for the results on the percent of donor status; which may take as long as ten days.
We are learning patience as we are waiting on lots of lab results to come back. Not only are we waiting on the bone marrow biopsy results, but Kacie’s parathyroid test results aren’t back yet either. We are also waiting on the two labs concerning the Epstein-Barr virus. The lab at this hospital was just introduced to testing for the Epstein-Barr virus, so they took more blood from Kacie today so this lab could examine and test for the virus. This is exciting because it should help in the turn-around time for testing Epstein-Barr.
The ICU doctor made some more ventilator changes today. Kacie has been having high respirations with a lot of swallow breaths. The doctor changed her to a different mode of ventilation that would make her breathing pattern more consistent, thus allowing her to breath easier. On this mode, he also changed her peep to 5 and her respirations to 15. Even though it appears that he went back up on these settings, the way he explained it to us is that these settings are equivalent to the other settings that she was on when on the different mode. He still is very pleased with her progress and is working towards extubating her on Saturday.
We had a really delicious spaghetti dinner tonight. There is a restaurant named, “Tower of Pizza”, that some of the guys went and picked up dinner. There is so much stress each day for all of us that we’ve enjoyed being able to share in time together during dinner.
The friendships that we are making are extremely special relationships and the bond that we have will last forever. There are so many wonderful families on this unit. We all cheer and pray for every child. We would like to ask that you continue to pray for all of these children and their families. Caleb needs special prayers, as he is requiring a lot of oxygen support on the oscillator. Caleb’s parents, Amy and Steve, were told that the next 24 to 48 hours would be very critical for him.
Please pray for Kacie to continue to improve each day. Pray for every organ, every cell, and all her bone marrow and blood counts to improve to full health.
Thank you to everyone for all your wonderful support and prayers. We love the emails, letters, notes of encouragement, and care packages. We especially love the homemade cards from all the children at different churches and organizations, plus the homemade videos that allow us to hear and see our friends back home. Please check out the link How To Help to learn about the many different fundraisers that everyone has been organizing to benefit Kacie. Thanks to everyone for all that you do! We love all of you!
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 20, 2002 - Day +160 - B-Cells, T-Cells, It's All So Confusing...
Kacie was awakened this morning as usual for her routine morning chest x-ray. We turned the “Scooby Do” cartoons on so that she would have something to listen to. We either try to play music, turn on a familiar video, or turn on cartoons that she knows. Her white blood count (WBC) stayed at 700, but her absolute neutriphil count (ANC) dropped to 100. These are extremely low and we can only pray that her counts will start to multiply. She is still on schedule to receive a boost of donor cells either Thursday night or Friday.
She had an excellent dialysis run that allowed them to take off 4.4 lbs. of fluid. She looks so much better with all the extra fluid off her little body. We had problems with weighing her on the bed scales because they were broke, so we had to use a holster scale to lift her out of the bed to get her weight. Her abdominal area has also decreased by about an inch in size after the dialysis run.
The doctors ordered a post-dialysis chest x-ray so they could determine the status of her lungs. Her lungs did look better; however, there is still some shading on the x-ray so they have scheduled to do another bronchoscopy tomorrow. They want to make sure that the yeast infection within her lungs is better. Kacie has been breathing at 97 to 100% saturations so the ICU doctor made even more changes on her ventilator settings. He reduced the respirations down to 8! According to the respiratory therapist, she believes he will be decreasing the pressure volume tomorrow. All of these changes are necessary in order to prepare her to be extubated. The ICU doctor also ordered for the nurses to decrease her sedation medications to be ready for her to get off the ventilator.
The pathologist report on the large blood clots from the other day came back as just blood clots; even though it appeared there were tissue cells in the specimen. This is exciting news!
We received the results on the bone marrow biopsy cellularity. It is difficult to explain, but the doctors said that Kacie still shows about 5% cellularity with the type of cells that are needed. But they explained that she had additional cells that showed up in the bone marrow that are called plasma cells. The plasma cells are virus fighting cells. The best way the doctors could explain it is that they believe the extra virus fighting cells appeared because they are fighting a virus within Kacie’s body. They even explained that if they were to do a biopsy of Kacie’s spleen, liver, or other organs that the organs may also show some virus fighting cells. The doctors believe it is the Epstein-Barr virus, but they are not positive.
The bone marrow transplant (BMT) attending physician contacted the other BMT doctors to discuss the best approach for treating Kacie’s overall conditions. They were in total agreement that they need to start Kacie on a medication to deplete the B-cells. The B-cells are necessary for antibodies within the body, but the Epstein-Barr virus attaches itself to the B-cells so in order to destroy the Epstein-Barr virus they have to get rid of the B-cells. This treatment started tonight and Kacie will receive the medication once a week for the next four weeks. It is just a little bit of medication, but they had to give it over four hours and watch her closely to make sure she wouldn’t have a bad reaction to the medicine. We are still waiting for the results of the Epstein-Barr virus, but the doctors feel they need to be aggressive in treating it just in case it has started to progress.
Kacie has also had a few bloody stools so the doctors are still concerned about whether she may be at the beginning stages of graft vs. host disease (GVHD) within the abdominal area. The medicine, MMF, which she is taking to help prevent GVHD has a rare side effect of possible bloody stools. The doctors decided to take her off the MMF and put her on a different medication, called ATG. The ATG may reduce her T-cells, but the doctors will be monitoring the amount, plus she will be receiving more when she gets the donor cells on Friday.
All of this information is very confusing. We have put our trust in the Lord to guide the doctors in making the right decisions on Kacie’s medical care. Kacie is looking better and her temperature and blood pressures have been stable. We thank God for every blessing that he provides to Kacie. We look forward to witnessing even more miracles along the way to her full recovery.
Tomorrow will be another very busy day. Kacie is scheduled for a CT scan of her abdomen area at 6:00 a.m., regular scheduled chest x-ray, dialysis, and then the bronchoscopy.
Please continue to pray for Kacie and the other children here. Kacie is in need of a lot of healing. Pray that God will provide the doctors the wisdom to make all the right decisions, pray for Kacie to get rid of the Epstein-Barr virus, pray that she doesn’t have GVHD, and pray that the yeast in her lungs have disappeared. Continue to pray for Kacie’s complete recovery. Pray for Caleb and his family. He made small baby steps today, but he needs a lot of healing as well. Pray that God will heal these children so that they start running up and down the hallways laughing and giggling. Pray also for all the other children that are struggling with very serious illnesses. Thank you for joining us on this long and difficult journey.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 21, 2002 - Day +161 - Yeast In The Blood?...
We tend to lose track of time. We arrived in Minnesota in the fall, stayed through the winter, and now we are here to watch spring come in. Yesterday was the first day of spring, but it is hard to believe since there is so much snow on the ground and it is very cold. We can hardly wait to get back to Virginia so we can enjoy the warmer weather and see the beautiful flowers blooming.
Our morning started early. At 6:00 a.m. this morning Kacie had a CT scan done of the chest and abdominal area. The scan of the chest showed that the lungs looked more improved; however, it shows two areas that aren’t inflated all the way. According to the ICU doctor, this occurs because Kacie has mostly been lying flat on her back, which hasn’t allowed her lungs to inflate properly. The ICU doctor is still working towards getting Kacie off the ventilator on Saturday. He said that once she is off the ventilator, sits up, then coughs her lungs should expand back to normal. The results of the scan of her abdomen still shows that her spleen, liver, and kidneys are enlarged, but there is very little fluid buildup in the peritoneal area. They were also looking for any enlarged lymph nodes, but thankfully there weren’t any enlarged nodes found.
Kacie’s white blood count (WBC) dropped all the way down to 100 and her absolute neutriphil count (ANC) was wiped out to 0. This was very upsetting news for us since we have been told that she needs these counts to increase in order to help fight off bacterial, viral, and fungal (including yeast) infections. The doctors explained that the medications they have her on to decrease the B-cells and T-cells probably contributed to this decline in cells, but they assured us that with the new donor cells being given tomorrow that her cell counts would recover. They also explained that she would probably have low blood counts for two to three weeks.
Kacie had 2.2 lbs. of fluid pulled off during dialysis. She has been waking up more and blinks her eyes at us. She also squeezes our finger. It is wonderful to see her responding some. The doctors have been decreasing her sedation medications to prepare her for extubation from the ventilator. They’ve also been decreasing the settings of her ventilator. Her respirations were decreased down to 6 today.
The last two nights, since Kacie has been receiving the ATG medication, she has spiked fevers. They believe the fevers are related to her reacting to the ATG. They are culturing her blood again.
We received some of the results back on the Epstein-Barr (EB) virus. They sent cultures to three different labs. The results from one of the labs showed negative, but then they ran a more sophisticated test and determined that there were 345 strains of the EB virus. The results from the lab in this hospital showed negative to the virus. We are still waiting for the results from the lab in Virginia. This is the lab that found 5700 strains of the virus last week, so they want to be able to compare this weeks result. Based on the results from these other labs, they believe the results will be better.
Kacie had a bronchoscopy today. We were able to watch on a large screen the entire procedure. As the doctor went through the bronchial tubes, it was definitely improved from the last bronchoscopies. She had very little secretions and no signs of infection and inflammation. The pulmonary doctor used saline solution to try and suction a sample from the lungs so they could culture the fluid within the lungs. He also commented that the fluid was very clear so he feels that is a good sign.
Here it is 10:30 p.m. and we’re trying to complete this journal entry. The resident just came in to inform us that the lab just called concerning one of Kacie’s blood cultures. The blood culture from yesterday started growing yeast. This means that they are now seeing yeast in the blood. Kacie is already on the proper medication against the yeast infections. The lab will be determining if this is the same species, candid utilis, as the previous yeast infections that have been in other areas. They are also getting more blood samples tonight from every line so that they can culture them and determine if the blood draw from yesterday may have been contaminated or not. They also are trying to determine if one of her lines is infected instead, and if that is the case then she will need to have the line replaced. Mentally and emotionally this is draining.
When I talked with Erin tonight, she read me the poem “Footprints In The Sand”. She was so excited about this poem. She has an English assignment where she is suppose to define what message the author is trying to convey in the poem. Then Erin read me her interpretation of the poem. It was the most beautiful writing that I’ve ever heard. We are so proud of Erin. This journey has been extremely difficult for her, yet it is great to know that she has the Lord to lean on. I’ve always loved this poem and this poem keeps coming in my mind each step of this journey. God keeps carrying us through these difficult times.
All of you have been so wonderful to continue to follow Kacie’s journey. We’ve become so numb to all this up and down information that we keep hearing. We have set our hope and faith in God and we will continue to every day. Please pray for Kacie. Pray for her blood counts to improve, pray for all her organs to heal, pray that she gets rid of the EB virus, pray that she get rid of the yeast infections, and pray for her overall health. Pray for her strength, pray that infections stay away, and pray for her courage and faith. Pray especially for Kacie’s donor, a very special girl whom we will always love. Thank you for being here for us especially during such difficult times.
For those of you who have been following Caleb’s progress, he is making some progress; however, he still needs our prayers. Please pray for Caleb and all the other children on this unit.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 22, 2002 - Day +162 - "Happy Boost Day!"...
Today is another very special day for Kacie. We have so many reasons to be thankful. Her donor agreed to go through a week of daily shots, and then she went through the process of giving peripheral cells in order for Kacie to have a chance to boost her own bone marrow. Kacie needs her blood cells to multiply and by receiving this boost it should help improve the overall status of her bone marrow. Kacie is so blessed to have this very special donor who unselfishly has given a part of herself to Kacie so that she may be given the chance of a healthy life.
Each day is a day to celebrate life. Today is just another step towards Kacie’s recovery and we decided to celebrate with everyone on the bone marrow transplant unit. We ordered a beautiful cake from a local bakery called Wuollet so that everyone could help us celebrate Kacie’s “Boost Day”. We took several pictures and video taped the entire process of her receiving her donor cells. Kacie’s nurse, Sasha, even bought her a really cute and soft pink bunny named We prayed for the cells to be strong and multiply, giving her a full recovery.
Here is a picture of the cake that we ordered. We just love the angelic design and butterflies on the cake. Not only was the cake beautiful, but it was also very delicious. We will have many more celebrations once Kacie is feeling better and once we are back together as a family. We can hardly wait for next Friday since Erin will be arriving.
Kacie lost 3 lbs. during her dialysis run today. They are having an easier time of taking fluid off; which means the fluid is getting back into the vascular areas. It appears that her kidneys are starting to function. Hopefully, she won’t have to stay on dialysis much longer.
Kacie had a cystogram; which is where they inject dye into her bladder and then take x-rays to determine if her bladder has a hole. The doctors wanted to make sure that her bladder wasn’t leaking into her peritoneal area. We were able to view the entire procedure on a large monitor screen. We watched the dye fill up in the bladder and then waited to determine if it would start leaking. Thankfully, there weren’t any leaks!
We discovered that Kacie is having a reaction to the ATG medication that she’s been receiving the last few nights. Each night her temperature has gone up a little, but she started breathing faster. Normally, her respirations are in the 20’s but after the ATG medication it has increased into the 60’s. The ICU doctor came by before leaving for the night and determined that Kacie was wheezing (asthmatic). He ordered a nebulizer inhaler treatment to help with the wheezing.
Please continue to pray for Kacie’s complete recovery. The ICU doctor told us that he still plans to extubate Kacie tomorrow. Please pray that Kacie’s lungs are strong enough and that she will be able to breathe without the ventilator. Pray for all of her organs, all of her cells, pray that there is no more yeast in her blood or the rest of her body, and pray that the new donor cells are enriched with many cells that will only continue to multiply as they are finding there way throughout Kacie’s body. Pray for Caleb’s lungs to expand and improve. We pray each day for his body to heal. Pray for all the other children as they are recovering from very serious illnesses. All of these children are very special to us and we look forward to seeing each one of them improve to where they can live healthy lives.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 23, 2002 - Day +163 - Anniversaries Bring Memories...
Time flies by quickly. Enjoy every moment and make lasting memories everyday. We’ve been married for 17 wonderful years. Since we’ve had the girls we normally celebrate our anniversary as a family. We have always included our girls in everything. Have you ever thought about the memories that you are creating for your family? A memory doesn’t have to be elaborate, nor does it have to be expensive. One of our fondest memories is piling up a bunch of blankets on the floor in front of the T.V., popping popcorn, and cuddling up together as we watch two or three movies back-to-back. We have so many wonderful stories and memories of special moments together and with our girls.
Dr. Cornfield, the ICU doctor, was planning on extubating Kacie on our anniversary; however, he changed his mind when Kacie started having reactions to the ATG medicine. She had been wheezing and asthmatic for over 8 hours, she had fevers, respirations increased, and blood pressure was high. We were concerned as well because we don’t want her extubated and then have problems breathing, which might require her to be re-intubated. They are planning on extubating her on Monday since her last dose of ATG is Sunday evening. They were giving her ATG over a 3 hour period, but the last time they increased it to be over 5 hours, plus they gave her more pre-medications to help with reactions. This appeared to reduce the level of reaction.
Kacie had a great dialysis run, taking off 3 lbs. of fluid. Again, it looks like her kidneys are starting to function. Each day we are seeing a little bit of improvement.
Sasha, who is a very special nurse that knows Kacie very well, was assigned as Kacie’s ICU nurse tonight. We were excited to have her assigned as Kacie’s nurse so that we could feel comfortable to be able to go out to dinner. Sasha even bought us an anniversary gift. She is so sweet and we are so fortunate that she gets to take care of Kacie. We had a very special dinner at Red Lobster. Dinner consisted of miniture lobster tails, scallops wrapped in bacon, clam strips, and mushrooms topped with lobster and crab meat covered with a zesty cheese sauce. M’m, m’m good! Then we topped it off with shrimp, lobster tails, and crab legs that were absolutely delicious and it sure beats hospital food. Are you hungry for Red Lobster yet?
We don’t get a lot of time to just be together and it turned into a very emotional time as we were reflecting on the last few months. Both of our girls have had to endure so much over such a short period of time. We are very proud of them and or proud to be their mom and dad. God has truly blessed us with very special girls.
One of the funniest memories of our anniversaries was our first anniversary (March 1986). I waited all day long for Donald to wish me a happy anniversary. I had envisioned him giving me a hug and kiss before rushing off to work. Well, that didn’t happen, and there were no flowers or candy delivered during the day to me and no plans for a candlelight dinner. I waited until 5:30 p.m. before I finally called him to confront him with the fact that he was rude for not remembering our anniversary. So I gave Donald an earful over the phone for 15 to 20 minutes as he listened calmly and unconcerned about my feelings. I even threatened to have the wedding annulled if he was planning on being unsentimental for our future anniversaries. I couldn’t believe that he didn’t even remember it to say “Happy Anniversary”. After I was exhausted from fussing at him, he calmly said, “Honey, our anniversary is two days away on the 23rd not the 21st and I’ll be happy to celebrate and wish you a happy anniversary then”. I quietly said, “Forget this phone call ever happened, I’ll see you at home”. Ever year we are reminded of this funny incident, but I know Donald will never, ever forget our anniversary.
We got together for a prayer meeting with Caleb’s parents, Amy and Steve, their pastor, Mark, and Brady’s parents, Carolyn and Andy. All three of our children have been through so very difficult times and our new friendship has just blossomed. We are so thankful to have these families so that we can share in lifting each other up. We are also so blessed to have met Mark and to have him here to help encourage each of us. We prayed for all of the children, for each other, and for the doctors and nurses.
Please continue to follow in Kacie’s journey. We are grateful for all your prayers for her recovery and we want you to join in the rejoicing as each miracle unfolds. Thank you for your encouraging messages and thank you for your love, support, and prayers. Even though we haven’t met all of you, we are blessed to have you in our lives.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 24, 2002 - Day +164 - Twas The Night Before Extubation...
Kacie did really well through the night. They were watching her closely due to the reactions that she’s been having with the ATG medication. She did much better since they ran the medication over 5 hours instead of 3 hours. She had a small reaction, but nowhere near as bad as the reactions that she was having.
She lost over 3 lbs. of fluid during dialysis. She still requires dialysis, but her kidneys are showing signs of starting to function.
Kacie’s chest x-ray of her lungs was better. Her ventilator tube was very loose, so the respiratory therapist had to adjust it again. The therapist had a difficult time getting the tape to hold the tube in the right place because Kacie has several sores on her cheeks underneath the tape. They re-taped the tube so that it didn’t cover the sores so they could heal. Kacie is allergic to adhesive tape and since she has been intubated for a month her skin started developing sores.
The doctors have been decreasing all of her sedations so they can be prepared to extubate her tomorrow. They are still planning on taking the tube out tomorrow if she still is having good results with her breathing. We are very excited, but also nervous.
We played “The Sound of Music” video so that Kacie could hear it. She woke up more and seemed to be responding more. This is a very good classical movie. Kacie probably loved hearing all the beautiful music. Joy, our nurse today, brought us a copy of an Easter play, “The Life Giver”, performed by a local church “Redeeming Love Church”. We plan to watch it sometime this week with Kacie.
Last night “Kacie’s Krusaders Band” was a smashing hit! Thanks to all the band members for devoting their time in putting on such a great concert. We are looking forward to receiving the videotape of the concert; however, we wish we had been there to hear it live.
Please pray that tomorrow will be full of many blessings. Pray that Kacie does well when extubated and her lungs expand so that she has full breaths. Pray that her organs are strengthened and her bone marrow and cells are multiplied. Pray that all infections stay away from her body. Continue to pray for her full recovery. Pray also for all the other children and their families that they will see improvements every day.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 25, 2002 - Day +165 - Anticipation...
We woke up with excitement, excitement at the possibility of getting Kacie off the ventilator. We’ve been apprehensive about her being taken off the ventilator because we want to make sure that she is ready. The doctors have been weaning her down on the sedation medications and her nurse today felt that she might be having withdrawal symptoms.
Kacie has been more awake today. She had 3.3 lbs. of fluid taken off during dialysis. Her face is so tiny and back to normal size. She now looks more like herself rather than being so puffy from the extra fluid. Each day she seems to be gaining less and less extra fluid. Hopefully this is a sign that her kidneys are starting to work properly.
A different ICU doctor came on service today. She had never worked with Kacie before today. Since Kacie had dialysis this morning, the doctor didn’t come by to see her until around 3:30 p.m. She didn’t quite feel comfortable about taking Kacie off the ventilator today since it was so late in the day. They had extubated a couple other children today and they wanted to make sure that enough ICU doctors would be available in case of emergencies. Kacie also had spiked a fever of 103.1? F at the time the ICU doctor came in to examine her. We actually felt better about waiting until tomorrow because we want to make sure that Kacie is able to respond more, plus the ICU doctor that will be on duty tomorrow night is the same one that intubated her and knows her well. It will probably be late tomorrow since they have to wait until after dialysis. The doctor did a test on the ventilator settings to change Kacie over to a mode that requires her to breathe on her own. Then they ordered a blood gas test and Kacie did extremely well. They plan on testing her again in the morning for a couple of hours. We feel much better that they can test her breathing prior to extubating her. The first time she was intubated we were anxious to get her off the ventilator, but this time we are more cautious since we have seen so much happen already and we want to make sure she is strong enough to breath without this support.
We received the results back from Virginia on the Epstein-Barr virus. The last time the test was done, there were 5700 strains of this virus; whereas, this time the results came back at 5500 strains. This is still a high number, but this last test was done prior to them giving the ATG medication and the other medication to destroy the B-cells. They have sent out another test result today and will probably get the results back next week.
Kacie had a great team of nurses today. Her primary nurses, Patty and Jill, took care of her during the day and tonight. Next one of her favorite night nurses, Kate, will be taking care of her during the night. And then another one of her favorite nurses, Sasha, will be taking care of her all day tomorrow. What a great team!
Our care partner, Kate, brought us dinner. We enjoyed a very delicious dinner with Kate and with Caleb’s parents, Amy and Steve. We had turkey, ham, mashed potatoes, gravy, corn, macaroni and cheese, fried apples, and corn muffins. It reminded us of a good “southern” meal.
Tomorrow night, at the Oasis Restaurant in Hampton, Virginia, there will be a benefit spaghetti dinner hosted by the Sorokos family. For more information, please check out the link How To Help.
Please pray that Kacie’s health continues to improve. Pray that she does well once they extubate her. Pray that her blood counts start to climb. Pray that the Epstein-Barr virus leaves her body. Pray for her overall health. Pray for Caleb that his lungs will be strengthened and he can be weaned off the oscillator. Pray for Brady since he was extubated today. Pray for Carley’s lungs to improve so she may be extubated soon. Pray for all of these children that are in ICU status and pray for all the other children on this unit and those that are still recovering from serious illnesses.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 26, 2002 - Day +166 - Still Tubing...
Kacie’s white blood count (WBC) doubled from 200 up to 400. This is very exciting since we were told in may take over ten days after the boost before we start seeing her counts increase. They don’t even count the absolute neutriphil count (ANC) until the WBC is above 500. Hopefully, her counts will increase again tomorrow.
Kacie’s chest x-ray of her lungs looked better today. She is taking larger and stronger breaths. The ICU doctors changed her ventilator settings to a mode that allows them to perform a trial test of her breathing. Her blood gases have come back with good results all day. She has been waking up more from the sedatives.
Her weight didn’t go up as much today and the doctors believe her kidneys are showing some improvements. They were able to get 2.2 lbs. of fluid off during dialysis. They are planning on starting dialysis early in the morning.
The environmental specialist installed a reflector over the air vent above Kacie’s bed. The air vent blows right over top of her bed, so they had to make a reflector to help blow the air in a different direction. We’ve been concerned with the air blowing directly on her. We had bought a banner of butterflies that we hung to help with the airflow.
The ICU doctors came by this morning to decide whether to extubate Kacie. They were concerned because she was still very sedated, so they weaned her sedation down more. They stopped by later in the day and she was still not awake enough. They were pleased with her x-ray, her breathing pattern on the ventilator, and her blood gas results. However, they really want her to be more awake. They are still planning on coming back this evening to check on her and decide whether to take the tube out tonight. If not, they will reassess her condition tomorrow and hopefully, extubate her after dialysis.
We heard the spaghetti dinner at the Oasis Restaurant was delicious. Thank you to the Sorokos family and all the extremely hard helpers that put on this benefit dinner, and thanks to everyone who was able to join them for a great evening. Wish we could have been there.
Please pray for Kacie to wake up enough to get extubated, pray that her lungs are strong and she breaths on her own, pray that she doesn’t have withdrawals from weaning the sedations, pray that she can respond to commands when the doctors are trying to examine her, and pray for every organ, cell, and every inch of her body. Pray that she continues to improve with every breath of air. Pray for the other children that God helps them improve each and every day too.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 27, 2002 - Day +167 - Sleeping Beauty...
We apologize for not writing last night. It was a very stressful evening on this unit. We are just now getting around to updating this journal entry.
Kacie was still too sedated in order for the doctors to extubate her. The doctors want to make sure that she can follow some commands; such as, squeezing their fingers and moving her eyes to follow them around the room. They have decreased her sedation medicine again today, but it takes time for the sedation to leave the body especially since her kidneys are not fully functional.
They were able to pull off about 2½ lbs. of fluid during dialysis. Her weight is back down to about what they feel should be her dry weight. Her creatine level was down to 1.1 today.
Kacie spiked a fever of 101.8?F so they cultured her blood. She has been running a low-grade fever for the last three days. So far none of the cultures have shown signs of infection. We received the test results back on the parathyroid and the results were negative, meaning that the parathyroid is functioning properly.
Our friends, Carolyn and Andy, gave their son, Brady, back to the Lord early this morning. Brady is 2½ years old. Brady started hemorrhaging early in the evening last night and was rushed to the operating room. It was a very stressful and emotional time for all of us. Early this morning he went to be with the Lord. Please pray for comfort for Carolyn and Andy. Pray that God will be with them during this very difficult time.
Pray for Kacie as she is waking up from all the sedatives. Pray that she will continue to improve and show progress each and every day. Pray that the doctors are confident in their decisions on all of her care. Pray that her body strengthens and pray for every cell in her body. Please pray that God provides guidance and strength to our family and all the other families on this unit. Pray that he will continue to watch over Kacie, Caleb, Carley, and all the other children as their bodies are healing.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 28, 2002 - Day +168 - Extubation?...Maybe Tomorrow...
Kacie’s white blood count (WBC) increased to 500 and her absolute neutriphil rose to 100. This may be a sign that her counts are starting to multiply. She really needs her blood counts to continue to multiply in order to help her fight off infections and to get better.
The doctors believe her chest x-rays look good. All the doctors believe that Kacie’s lungs are doing well enough to take her off the ventilator; however, they want her to wake up more before extubating her. She was more awake today, but she still isn’t able to squeeze our finger when we ask her. They weaned her sedation this morning and are planning on weaning it again this evening. She started shaking and having fevers, as high as 102.6° F; which the doctors believe might be a sign of withdrawals from the heavy sedation medications.
They were able to pull off 1-½ lbs. during dialysis. Kacie continues to have occupational therapy and physical therapy. Basically, these therapists stretch her arms and legs to help strengthen her muscles.
Kacie started having a little more blood show up in her urine. She is still on the continuous bladder irrigation (CBI). The doctors also have her platelet parameters set to be over 100,000. They are also are giving her fresh frozen plasma (FFP) during dialysis to help with the blood clotting factor.
Kacie received a beautiful handcrafted Jesus doll from a very special family. Laura is a 17 year old that was hospitalized due to bone cancer. She is a very brave girl and has always had a Jesus doll whenever she was hospitalized. Her mother and grandmother brought Kacie a Jesus doll tonight. The doll is such a special gift from a very special family. Please pray for Laura’s full recovery.
Grandma Honey, Grandpa, & Erin are suppose to arrive at the airport at 10:15 a.m. We are hoping that Kacie will be awake enough so that she can be extubated tomorrow when everyone arrives.
Pray that Kacie continues to get stronger, pray that she wakes up enough to be extubated, pray that her fevers go away, and pray that her blood counts multiply. Pray for the children and families here that are dealing with very difficult situations. Pray for Caleb’s lungs to heal so he can get off the oscillator. Pray for Brady’s family, especially for his mom and dad (Carolyn & Andy), as they are grieving for their son. Please pray that God will provide the comfort that they need during this extremely difficult time.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 29, 2002 - Day +169 - Kacie's Grandparents & Erin Come To Visit...
Grandpa, Grandma Honey (Sam & Jeanette George), and Erin arrived today. Their new plane, only 3 days old, was an hour delayed in Atlanta. We were so excited to see them when they arrived. Kacie opened her eyes when she heard their voices come into her room. If she didn’t have the tube in her mouth, she would have been talking non-stop.
Kacie continues to sleep a lot and she is still trying to wake up from all the sedatives. The doctors have to wean her off the sedatives very slowly so that she doesn’t have withdrawals.
Her fever peaked at 103.7° F today. We had to put cold wet cloths on her to help break the fever. She is so weak, but she has started to move one of her arms and her hands.
The ICU doctors examined her and felt that she is still too sedated to take her off the ventilator. After examining her they contacted Dr. Charness, the neurologist, to have him examine Kacie to determine if an MRI would be necessary. Dr. Charness has been following Kacie’s care since when she was first diagnosed with meningitis. He knows her very well. Dr. Charness was in meetings all day, but he took the time to come examine Kacie this evening. He believes Kacie is so weak and still needs to wake up more from the sedatives. He believes it could take up to four days before she will be awake enough to extubate her. He also felt that an MRI is needed; however, he didn’t feel it had to be done as an emergency. It is very difficult to have an MRI done on a patient that is on the ventilator because someone has to bag her (manually provide oxygen). As I was writing this entry the resident came in to write orders for the MRI to be scheduled for tomorrow morning.
Kacie had 2.2 lbs. taken off during dialysis. Her measurement across her abdomen is smaller this evening as well. Hopefully, the internal organs in her abdomen are starting to decrease in size.
Pray that Kacie wakes up more tomorrow. Pray that she continues to improve and get stronger. Pray that the MRI results are good. Pray for her temperature to come down and pray that her blood counts to multiply. Pray for all the children and families that are here.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 30, 2002 - Day +170 - Change Of Events...
Sometimes we feel as though we are going in circles. Sometimes we feel as though we are on a roller coaster ride that just keeps going and going. This has been another day of challenges.
When we first got up this morning, we noticed that Kacie had been bleeding from her bladder again. The nurse said that Kacie wasn’t flowing from the catheter even though she is still on the continuous bladder irrigation. So, she had advanced the foley catheter to try and get her to flow again, but she started bleeding from the catheter. When one of her primary nurses, Patty, came in Kacie was still having problems flowing from the catheter so she put in a new one and she stopped bleeding.
Kacie had a MRI this morning, with and without contrast. After the MRI was completed, Dr. Charness (Kacie’s neurologist) was paged to read the results with the neuro-radiologist on duty. Our BMT doctors, Dr. Baker & Dr. Thornley, called us into a conference with Dr. Charness to discuss the results. Our hearts sank as we once again are facing another difficult situation. The doctors explained that the MRI results look a little different and there are two areas that indicate brightness on the MRI, especially when the contrast pictures were taken. They went on to explain that they are concerned that she might have either a bacterial infection, a yeast infection (which she has had in other areas of the body, including the blood), or it might indicate post transplant lymphoma disease (PTLD). Dr. Charness took the time to pull up the images on the computer and explain each of the different sections of the brain and the areas that are of concern.
The doctors went on to explain what they will focus on first. They have contacted the neurosurgeons to have them review the MRI. They’ve also asked that the neurosurgeons tap her shunt to pull off a sampling of cerebral spinal fluid (CSF) and culture it to determine if there is an infection. They’re also talking about possibly needing to do a biopsy in the areas where they are concerned.
During dialysis, they were able to pull off a little over 1-½ lbs. They are planning on doing dialysis again tomorrow. Most people only have to have dialysis a few times a week. Kacie still has to be dialyzed daily, either because of the extra fluid or the toxins in her body.
Kacie was very sleepy this morning. They’ve been decreasing her sedatives to help get them out of her body so that they can determine how well she will respond. She was more awake this evening and even moving her arm up towards her face. She held onto Grandma Honey’s finger for a long time and didn’t want to let go.
We had a wonderful lunch today. My mom had made pinto beans and fried corn bread. It was delicious! We were glad to have a really good home-cooked meal like what we were use to back in Virginia.
Thank you to everyone for all the special Easter baskets and care packages. We greatly appreciate everything that everyone is doing. Thank you Aunt Deb (Deb Feick) for helping Erin with her schoolwork every night. It certainly has helped her to stay focused and keep good grades. Thank you to all the special people who have organized fundraisers. All of you mean so much to us. Thank you to everyone for the many prayers!!!
Tomorrow is Easter Sunday and we are so grateful to have Erin here with us. Thank you mom & dad for bringing her out so that we could be together. We are grateful to have all of you out here with us.
Please pray that Kacie wakes up more as they reduce her sedations. Pray that there are no infections or post transplant lymphoma disease within her brain. Pray that she gains strength and can get off the ventilator soon. Pray for her overall health and for complete healing. Pray for Caleb that he can be taken off the oscillator and put onto the ventilator. Pray for all the other children on this unit.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
March 31, 2002 - Day +171 - Kacie Needs White Blood Count To Rise...
Happy Easter! For our family, Easter marks a time of miracles and reaffirmation of our faith. We thought that we would be home during Easter, but we are thankful that we were able to be together as a family. My parents, Grandpa & Grandma Honey (Sam & Jeanette George), had to leave today. We were glad that they were able to come visit and bring Erin to stay with us. They had a delay in Minnesota, then changes in flight time while in Atlanta, and then they had rough weather when flying through South Carolina back to Virginia. Thankfully, they made it home safely and at a decent time so they can get some rest before having to return back to work early in the morning.
Again, Kacie’s chest x-ray looked good. They were able to take off 1.3 lbs. of fluid during dialysis. Her weight isn’t going up as much each day, so hopefully this means her kidneys are trying to work.
Today brought about a lot of emotion. First, having to tell Grandpa & Grandma Honey goodbye. Our hopes were that Kacie would be off the ventilator so that she could speak with them. About 45 minutes after they left, Kacie had a seizure. I had to take Erin out of the room. Lots of doctors and nurses came in to examine her. They had to give her more sedation medicine in order to stop the seizure. While the room was full of people, Donald arrived from taking my parents to the airport, and he was extremely concerned. By this time they had Kacie sedated and she was doing well.
During the normal visit from the ICU doctors and BMT doctors, we were discussing the seizure that she had earlier. Kacie’s shoulder was quivering, so I motioned for the doctors to watch her movements. The ICU doctor wasn’t able to stop Kacie from quivering, so she asked the BMT doctor to try, and he was unsuccessful in stopping the quivering. They were discussing whether it could be another seizure, but decided to have Dr. Charnas, the neurologist, paged so that he could examine Kacie while this was happening. Dr. Charnas examined Kacie and determined that it wasn’t a seizure because he was able to get her to respond to him and also to hold her arm up. If it had been a seizure, then she wouldn’t be able to hold up her arm.
Kacie’s white blood count dropped below 100. Her temperature went as high as 104.4?F. She also was having problems with her blood pressure dropping to 80s/60s then rising to 150s/100s. This could be an indication of a bacterial infection so they started her on another antibiotic.
Later in the day Kacie had another incident where they thought she might be having another seizure. The ICU doctors decided they don’t want them to give medication to stop the seizure until it appears that the seizure is longer than four minutes. At the time that she had symptoms of a seizure, she was also having lots of secretions within the tube from the ventilator and lots of secretions in her mouth. It might be that she just was having problems with the extra secretions. Once they were able to suction her, then she appeared to do well.
Kacie started moving her eyes to look directly at us. She also started raising her arms, even her right arm which has been so weak. It shakes a lot when she raises them, but it is probably due to weakness. The nurses have even caught her trying to pull at her ventilator tube in her mouth. All of these are good signs that she might be trying to wake up more.
The neurologist, neurosurgeon, and the neuro-radiologist are supposed to meet sometime tomorrow to discuss Kacie’s MRI results. At this time there is some disagreement as to whether there are noticeable differences in the different MRI scans of her brain. The neurologist has requested an EEG (brain wave test) to be done. The BMT doctors are ordering a CT scan of her chest and abdomen to continue to look for any signs of infections.
Even though we had such an emotional day, we were able to continue with our plans to share in an Easter dinner with Amy and Steve, Caleb’s parents. Please pray for Caleb’s lungs to improve. He has been having problems with his electrolytes; which is causing his blood gases to be lower than what he needs in order to wean him off the oscillator.
Kacie really needs a lot of prayer. Please pray for her white blood count to increase dramatically. Kacie needs the white blood counts in order to help with any infection within her body. Pray for every organ and every cell in her body. Pray for her mental and neurological status. Pray for her strength. Pray for her temperatures and blood pressures to return to normal. Pray that she arouses more and shows that she is improving. Please pray for her continued healing and pray for her total recovery.
Smiles & Giggles,
Donald, Kathi, Erin, & Kacie
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