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December, 2001 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 December 1, 2001 - Day +51 - Rest and Recovery... We apologize for not getting the website updated quickly after the surgery last night. As luck would have it, my modem card stopped working. Thanks to Tanya Utt for updating the page for me. Also, thanks to Tanya for putting together an emergency container that contained a spare modem card. The spare card will allow me to continue to update the pages regularly. Last night was very stressful for all of us. After seeing Kacie go through three brain surgeries due to the meningitis, we thought she was well on her way to recovery. It was a real shock to learn that she had to have an emergency surgery last night. We thought that the surgery started at 8:00 p.m., but after waiting for two hours we discovered that the surgery didn’t start until 10:00 p.m. When the neurosurgeon finally came out to discuss the results, we were very relieved. He said that everything went extremely well. Basically, they replaced and repositioned the shunt into her ventricles. They relieved pressure (it was up to 27.5, normal is 15 or below), and took samples of the cerebral spinal fluid to send directly to the lab. The cerebral spinal fluid came back as no bacteria found, which was good news because if bacteria were found then they would have to put another external drain in the ventricle. The neurosurgeon then replaced the valve that controls the shunt and helps it drain. Kacie was in recovery for a little bit and when finally made it back to her room at around 1:30 a.m. The nurses had to wake her every 15 minutes for a couple of hours to test her neurologically. Then they started testing her every half hour, and now it is once an hour. This made for a very long night, so she was very sleepy today. Even though she was tired, she was a lot more responsive today. She giggled and watched TV with us. The CT scan results from today looked better than the one yesterday. The ventricles appear a little smaller, the edema (inflammation) is less, and the shunt placement looked good. There were signs of a little bleeding, which is not unusual, so the neurosurgeons have already ordered another CT scan for tomorrow. We are very exhausted and will try to get to bed earlier tonight, although it is already 9:00 p.m. Our hearts are so filled with joy at knowing that so many people are praying for Kacie’s recovery. This journey has definitely been difficult, but through your love, support, and many prayers we are holding strong. Thank you and please continue to pray for her. She still has a lot of recovery to go. Smiles & Giggles, Donald, Kathi, & Kacie December 2, 2001 - Day +52 - Another Turn In the Roller Coaster... After examining Kacie and reviewing the CT scan from yesterday, the neurosurgeon decided to get another CT scan today. The left ventricle had come down in size, but the right ventricle had increased since yesterday’s scan. They also noticed that she has a cyst in the ventricle; which may have been the reason they couldn’t get the left side to drain. The neurosurgeon went ahead and ordered another CT scan for tomorrow. The plan is to determine if there are any changes in ventricle size. Their hope is that the cyst will dissolve and drain with the other cerebral spinal fluid. If the right ventricle gets larger, they may have to perform yet another surgery to install another shunt. If that happens, they would connect the two shunts into a “Y” so they will drain through the same tubing into the abdomen. All of this information is very confusing and once again we are asking for your prayers. Kacie has been through enough surgeries in such a short period of time and we can only pray that everything will heal through the night. Since Kacie has been running high fevers for several days, they decided to do CT scans of her sinus, chest, and abdomen while she was having a CT scan of her head. We are still waiting on results back from these scans. Please pray that she doesn’t have any infections. I have to tell you about a wonderful family that we have gotten to know while up here in Minnesota. Amy and Steve Glover have been great friends to us. Their son, Caleb Glover, has fanconi anemia and had his bone marrow transplant about 10 days prior to Kacie’s transplant day. When we called them to let them know that Kacie was having emergency surgery the other night, they immediately said they would be right over. As they were getting ready to come over, they noticed that Caleb’s temperature had gone up. Any temperature over 100.5° F means that they have to readmit the child back in the hospital. His temperature had spiked, so they had to admit him. Even though they were going through their own challenges, Amy came to the surgery waiting area to pray with us. The Glover family is very special to us. They also have twin daughters that are a lot of joy. Both of Amy and Steve’s parents are missionaries and they have been providing a lot of support as well. Please keep Caleb in your prayers, especially pray that the fevers go away. On the brighter side of things, we are trying to keep our spirits up and we played Christmas music while decorating Kacie’s room for Christmas. Hopefully, Kacie will feel better tomorrow so that we can start making some ornaments and decorations for the walls. Please pray that Kacie’s fevers go down, her blood pressure comes back down to normal, that the CT scans show no infections, and that she doesn’t need another surgery or procedure. Thanks many times over for all of your love, support, and prayers. Smiles & Giggles, Donald, Kathi, & Kacie December 3, 2001 - Day +53 - Just A Spoon Full Of Sugar Makes The Medicine Go Down... Our prayers have been answered once again. Kacie had another CT scan done at 5:00 a.m. today and it looks the same as the scan from yesterday. Basically, the neurosurgeons and neurologists believe that the ventricles are trying to equalize. They believe she is not feeling well due to the high fevers and other issues that are related to the bone marrow transplant process rather than the meningitis. This is great news, since they feel surgery is not necessary at this time. They want to continue to watch her neurological status and if we notice any changes, then they’ll repeat the CT scan and determine the next treatment. We are hopeful that the shunts are working properly and that she won’t need any further surgeries. Kacie still had fevers today. Hopefully, she will start feeling better soon. She started having problems taking any of her oral medications. As soon as we give her the medicine, she holds it in her mouth without swallowing. This made it very difficult, since she has several medications that she needs to take orally. The doctors believe her throat may be sore due to having a tube in during the last few surgeries. Kacie’s CT scans of the sinus, chest, and abdomen all looked good. The sinus showed some thickening, but not a lot. She is already on the proper antibiotics in case she is developing infections in these areas. Please pray that Kacie starts feeling better tomorrow. Pray for a reduced fever, lower blood pressures, no infections, and overall health restored. Thanks once again for all the many prayers! Smiles & Giggles, Donald, Kathi, & Kacie December 4, 2001 - Day +54 - Beach Party In Snowy Minnesota... When Kacie woke up this morning, she started vomiting. Then her fever appeared to break, down to 99.7° F. This was the lowest we’ve seen in several days. Overall, today was a very good day for Kacie. She seemed more alert in the morning and she even watched a Christmas movie. Later in the day her fever went back up to 101.3° F and she got sick again. She started sleeping a little more. Kacie is still having a lot of difficulty swallowing any oral medications. She will hold them in her mouth. After talking with several doctors, they believe her throat may be sore from the tubes used during the surgeries. We have to tell you about a really creative gift that Kacie received. Some good friends thought that we might be homesick from the warm weather and the beaches, so they sent a care package to help us out. They had been to St. Pete Beach in Florida, so they sent a beautiful postcard of St. Pete Beach, a bag of sand, and a bag of seashells from St. Pete. It also had a couple of puppet animals in the package. When we opened the package, all of us just started laughing. It was so good to receive something that brings the thoughts of home here to the snowy state of Minnesota. Another creative gift that Kacie received was from First Baptist Church in Newport News, VA. The Girl’s In Action group had each made cards for Kacie, then they each printed their pictures for her, and the best part was they made a video sending their best wishes to Kacie. Kacie really enjoyed watching the video. It was great to have photographs of the girls so that she knew who drew each of the pictures. Kacie also received a really nice Christmas advent card. The best part is that it has a funny joke for each day until Christmas, and you all know how much she likes telling the doctors and nurses jokes. Kacie’s Grandma Normie (Norma Faulkner) is flying in tomorrow morning and will be here for a week. Donald will be picking her up from the airport about 10:20 a.m. cst. This should be a great visit for Kacie. Hopefully, Kacie will start feeling better and will enjoy Grandma Normie’s visit. Please pray that Grandma Normie has a safe trip. Pray that Kacie’s health continues to improve. Pray that her throat starts feeling better so that it is easier for her to take her oral medicines. Smiles & Giggles, Donald, Kathi, & Kacie December 5, 2001 - Day +55 - Grandma Normie's In Town... Kacie was hallucinating last night, plus she was still vomiting some, so they decided to do another CT scan this morning. The radiologist called and asked if we could come on down at 5:00 a.m. before they got to busy. So, the nurse woke us up at 4:30 a.m. We keep having early mornings and late nights. The CT scan showed the same as the last two scans that were done. This means that they don’t notice any additional pressure. The neurologist has decided to schedule in MRI of her spinal column to determine if there is any nerve damage since she is still having problems moving her feet and toes and she still has bladder spasms. Grandma Normie (Norma Faulkner) came in this morning. Kacie was so excited to see her. Kacie told her several of her doctor jokes. She really had a good day today. The doctors have scheduled for the speech therapist to come and try to help Kacie swallow. She is still having problems swallowing. She is still running high fevers, and she has been having problems swallowing the Tylenol, so we bought her some different flavored chewable Tylenols in hopes that she can take them. Kacie had a very busy day. She had to sit up on the side of the bed for physical therapy. And she made a Christmas link chain for the occupational therapist. Today was the first day in a while that she could work with her schoolteacher. The teacher read her a story for a few minutes and Kacie was so tired that she fell asleep. Please continue to pray that Kacie shows improvements everyday. Pray that the MRI results are good, fevers go down, blood pressure is normal, swallowing is no longer an issue, and that she gets stronger and starts moving her feet and toes. Smiles & Giggles, Donald, Kathi, & Kacie December 6, 2001 - Day +56 - "Kacie's Miracle Gift"... Kacie had a very busy day again today. She had physical therapy and occupational therapy two times each. Kacie had an MRI done of her spinal column and her head. This test took a long time since they had to change the equipment for each exam. They also did the same tests again with a contrast solution given through her central line. Kacie did extremely well. She listened to Christmas music during the MRI tests. We have spoken with the neurosurgeon and the neurologist concerning the MRI results. Kacie’s situation is very complex and we have been told that we just need to wait and see how well she progresses. We still have the issue of her vomiting, the high fevers, headaches, and blood pressure controls. Our family has decided to help spread joy and happiness to others throughout the holiday season. Please visit ”Kacie's Miracle Gift” to help Kacie and our family achieve our goal of helping others. This is a very important and ambitious goal, but this is the one gift that we believe will help a lot of people. Please share this information with everyone so they can join us in reaching our goal and feel the true meaning of Christmas by helping others in need. Again, we want to thank everyone for your many prayers and we ask that you continue to keep her in your daily prayers; she has a long recovery yet. Please pray for no fevers, no vomiting, no headaches, and that her blood pressure is normal. Please also pray that she has a peaceful and restful night tonight. Smiles & Giggles, Donald, Kathi, & Kacie December 7, 2001 - Day +57 - Kacie's Gaining Strength... Kacie had a very restless night. She finally fell asleep at 1:00 a.m., but woke up several times with stomach pains and leg aches. She was very uncomfortable all night and I repositioned her at 1:00 a.m., 2:15 a.m., 4:00 a.m., and 6:00 a.m. Needless to say we didn’t get much sleep. Today was another stressful and emotional day due to a lot of information that we received from Kacie’s MRI tests from yesterday. It appears as though we keep learning about different words that end in “itis”. First, we learned that Kacie had meningitis, then ventriculitis, and now we have learned that she also is dealing with mastoiditis and arachnoiditis. To explain what all of these medical terms mean, it is easier to first understand that any of the words ending in “itis” mean inflammation. So meningitis means inflammation of the meninges; which are the membranes (or lining) that cover the brain and spinal cord. Ventriculitis is inflammation of the lining of the ventricles of the brain. The new term that we just learned is mastoiditis and is inflammation within the mastoid bone; which is the bone immediately behind the ear. The other new term that we just learned about is arachnoiditis; which is inflammation that involves the arachnoid (middle) layer of the meninges surrounding the spinal cord. Another way to describe the arachnoiditis is that it is inflammation of the nerves that are surrounding the lower section of the spinal cord. We feel like we are going through medical school, since every day has brought about new challenges and learning experiences in medical science. It is very overwhelming with all the information and especially since Kacie has been afflicted with so many different issues that are extremely complex. She is our miracle girl! Presently the doctors are watching her clinically to determine if she is getting better. The ENT (ear, nose, and throat) specialist will come by tomorrow concerning our treatment of the mastoiditis. Today the dermatologist specialist did a procedure for a skin biopsy since Kacie has been having rashes on and off. The doctors wanted to go ahead and determine if she has a form of graft vs. host disease. It is not uncommon to get a small case of graft vs. host disease on the skin. We should get results back tomorrow. Kacie also had to have a lumbar puncture (or spinal tap) today so that they could determine the pressure of the cerebral spinal fluid and also to determine if there are still bacteria. She did great during this procedure and the gram stain showed negative for bacteria. They will continue to culture the fluid for several days to make sure there is no growth. It appears as though all the meningitis is gone. Kacie’s day was very busy and I can’t finish today’s website entry without mentioning the greatest moment of the day! Kacie actually sat up for 45 minutes on the side of her bed without someone holding her up. She laughed and joked with everyone and was feeling good. It is great to see that she is starting to get some strength in her upper body. Kacie’s fevers were down for most of the day as well. Overall this is the best day that we’ve seen in several days time. As we mentioned in our journal entry yesterday, please click on this link, ”Kacie's Miracle Gift”, to determine how you can make Kacie’s Christmas brighter by helping us achieve our goal of helping others. Please pray that Kacie improves each and every day. Pray that she recovers from all of the “itis” diagnosis, the meningitis, ventriculitis, mastoiditis, and the arachnoiditis. Once again, thank you for helping us in these difficult times. It is great to have so many supporters that we can lean on. Smiles & Giggles, Donald, Kathi, & Kacie December 8, 2001 - Day +58 - Kacie Went Cruisin'... Kacie had another restless night. However, her day was fantastic!!! Kacie went cruising the 4th floor hallways of Fairview University Hospital. What an exciting day!!! This was the first time that she has been able to get out of her room in over 60 days, with the exception of all the times they had to take her for tests. All of the other times she always went in her bed, but this time she rode in a cool wheelchair. She was so beautiful! She is definitely a princess angel! We dressed her up in pink flannel angel pajamas with a pretty pink barbie hat and her fuzzy purple slippers with smiley faces. She rode around for an hour! She looked great and she had such a wonderful time. She waved to all the nurses as she rode past them. We plan to try and schedule a wheelchair ride twice a day since she did so well. Kacie’s little friend and next-door hospital neighbor, Maddie, wants Kacie to get better so they can race in the hallways. When Maddie saw Kacie out of her room, she had to come out too! This was a lot of fun for both girls. Maddie is four years old and such a cutie! Kacie will be having surgery on Monday. The ENT (ear, nose, and throat) surgeon wants to put a tube in her right ear to help drain the fluid that is behind the middle ear. This should help the mastoiditis. They will also culture the fluid to determine if there is any infection. He will also perform a sinus tap to get fluid from the sinus cavities to culture and make sure there is no infection. Please pray that Kacie continues to have GREAT days and shows GREAT progress!!! Smiles & Giggles, Donald, Kathi, & Kacie December 9, 2001 - Day +59 - "Wheeeee!!! Wheeeee!!!"... Our family would like to thank everyone who has clicked on ”Kacie's Miracle Gift”. We have started getting several email messages about all the great ways that you’ve been helping others. If you haven’t visited that page, please click on this link, ”Kacie's Miracle Gift”. Please continue to let everyone know about this project so that we can help brighten other people’s lives. “Wheeeee!!! Wheeeee!!!” shouted Kacie as we wheeled her through the hallways. She decided that she wanted to go on a wheelchair ride. We took her to see several of the nurses that had taken care of her in the past. We also took her to the cafeteria so that she could look out the windows at the city. Kacie did extremely well and really enjoyed her ride. Grandma Normie, who practiced nursing for 44 years, has been amazed at all the advances in the medical field. She said that she wished they had all the amount of knowledge and expertise back then that the medical professionals do now. She feels that research has played a big part in the many advances to medical and surgical treatment. I forgot to mention that Kacie’s skin biopsy came back with no signs of graft vs. host disease. This was great news! She has been vomiting and a few high fevers today, but overall she has felt pretty good. Please keep Kacie in your prayers, as tomorrow she is going to have surgery to put a tube in her right ear and she will also have a sinus tap. The operation will probably be in the afternoon because they have to wait until the operating room becomes available. Smiles & Giggles, Donald, Kathi, & Kacie December 10, 2001 - Day +60 - Frequent O.R. Pass?... The doctors woke us up early this morning. They had an opening in the operating room, so they wanted to go ahead and start Kacie’s surgery. When we got down to the pre-op area, they explained that they would be putting tubes in both ears and culture the fluid that is behind the right middle ear. They also were planning on doing a sinus tap, flush the sinus cavities, and culture that fluid. Then surprise . . . the doctors had also decided that they would do a bone biopsy since she would already be under anesthesia. Kacie is on day +60 today and that is the normal time when a bone biopsy is performed for patients under this fanconi protocol. Everyone in the operating room now recognize us since we've been in there so many times recently. One of them even asked if we have a "frequent O.R. pass" because they've seen us so much. Our hopes are that the only time we will go back to the O.R. is for friendly visits and to tell everyone goodbye. The fluid that was taken from behind the middle ear and also the fluid from the sinuses all showed negative for bacteria infection under the microscope. They will continue to culture them for several days to make sure that nothing grows. As far as the bone biopsy, it will take several days before we get the results that determine the percent of donor cells. If you recall, Kacie had 100% donor cells through a blood tests that was done on day +21 so we are praying that is still the same. Kacie had a very busy day. Hopefully, this surgery will start making her feel a lot better and will help the fevers to go down. If she still has persistent fevers, then they will do a special CT scan later in the week that will focus on the mastoid bone (bone behind the right ear). Thanks for the many prayers! Please pray that Kacie starts feeling better and the fevers go down. We didn’t get much sleep last night, so I’m calling it an early night at 9:00 p.m. Many thanks and God Bless!!! Smiles & Giggles, Donald, Kathi, & Kacie December 11, 2001 - Day +61 - Lots of Discomforts... Kacie had a rough time last night because of a lot of pain in several different areas of her body. She was complaining of headaches, back ache, aches around the ear, leg pains, and tummy pains. It made for a very long night. I’m learning how to get by on very little sleep. Several of her aches and pains were due to the surgeries that she had yesterday. The bone biopsy made her hip area very sore, and since she isn’t moving around much her leg pains are worse. The surgery on putting ear tubes in and the sinus tap may be the cause for the headaches and the ear aches. Kacie had a lot of bladder spasms in her tummy, plus she was vomiting quite a bit during the night; which made her very uncomfortable. Today Kacie was very restless due to the same discomforts that she had during the night. The doctors decided to have ultrasounds done of the abdomen area and CT scans done of the head and also the mastoid bone (bone directly behind the ear). We should have some results later this evening or in the morning. We wanted to send our thanks to everyone back at VIMS (Virginia Institute of Marine Science) for their support. Several people volunteered their time and talent to holding a very successful “Everything Sale” in support of Kacie. We wish that we could have been there. Kacie has finally drifted off the sleep, so I’m going to do the same. Please keep sending up those powerful prayers! Smiles & Giggles, Donald, Kathi, & Kacie December 12, 2001 - Day +62 - A Special Visit From The NorthPole... Kacie had a very special visit from Mrs. Santa Claus and Brenner the Elf. We dressed her up and wheeled her out in a wheelchair so that she could spend some time with them. Mrs. Claus said that Santa has gained weight this year and she had to move his buttons over on his jacket and pants. She also told Kacie that Santa would visit her in Minnesota! Grandma Normie had to fly back to Virginia today. She was able to spend time with Kacie while visiting Mrs. Claus and Brenner the Elf before she had to leave. It was great that Kacie got to spend some time with her grandmother; especially the wheelchair rides! Kacie had another rough night. Her temperature was 103.5° F and she was very uncomfortable with pain. This morning, she was able to roll over in bed, which was great! The results from the ultrasound of her abdomen came back normal. The CT scan of her head showed that the ventricles are still the same size, and the CT of the mastoid showed fluid in that area. Hopefully, antibiotics will help clear up the fluid so that she doesn’t have to have surgery on the mastoid bone. The fluid that was cultured from the sinus cavity has started growing with yeast. The infectious disease specialist will be testing a drug sensitivity level to determine the proper antibiotic to help clear the yeast infection. Kacie’s respiration has gotten rapid since the last surgery. The doctors ordered a chest x-ray. This x-ray had not changed since the one performed yesterday, other than the vascular system is more prominent; meaning Kacie is holding more fluid in her vascular system. They have increased the amount of lasix that she is receiving so that it can help take off the extra fluid. Kacie had several very painful abdominal cramps today, so the doctors ordered an x-ray of her abdomen. We are still waiting for the results of that x-ray. Please pray that Kacie’s fevers, blood pressures, and respiratory rate all decreases and goes back into normal range. Pray also that all of her aches and pains with her head, abdomen, legs, feet, and toes all start disappearing. It has been two weeks of consistently high fevers and blood pressures, and lots of pains within the head, abdomen, and leg areas. Thanks always for your prayers and support. Smiles & Giggles, Donald, Kathi, & Kacie December 13, 2001 - Day +63 - Lots & Lots Of Tests... Kacie had a very difficult evening last night. She was screaming out in pain from her abdomen area. The doctors increased her pain medicine and approved her to get the medication every two hours instead of every 4 hours. They have been hesitant in giving her a lot of pain medication (narcotics) since they need to monitor her neurological status. The ENT surgeon feels the meningitis may have started from the mastoiditis (inflammation behind the ear). He plans on getting another CT scan of the mastoid on Monday. If the fluid is the same or more, than he will probably have to do surgery and will scheduled that for Monday evening or Tuesday. Hopefully, the fluid will be less. Kacie’s respiratory rate has been increasing, so they did another chest x-ray. The one from yesterday and the one today both looked the same. They have noticed extra fluid in the vascular system, so they’ve increased the amount of lasix again tonight to help pull the fluid off. The x-ray that was done of the abdomen yesterday was good. Because of all the abdominal pains, they scheduled a CT scan of the entire abdomen area today. Everything looked good on the scan. They also had a special test done on the pancreas to make sure it wasn’t having problems. The results of the pancreas test were normal as well. Kacie had a bladder test done today, called a uro-dynamics test. The urologist was able to pull off 375 cc of fluid from her bladder. This was a lot considering that she has a foley. So the urologist thought that the muscles were having problems keeping the foley in the bladder and that may be causing some of her abdominal pains. The other part of the test indicated that she is having problems with the bladder functions, probably due to the arachnoiditis (inflammation of the nerves around the lower part of the spinal column). They put another foley in today and we’ll have to see how she does tonight. Please continue to pray for Kacie’s full recovery. Also pray for our patience. It is difficult watching her in so much pain, plus watching her go through all the many surgeries, procedures, and tests. Smiles & Giggles, Donald, Kathi, & Kacie December 14, 2001 - Day +64 - Peaceful Evening... Kacie had a pretty good day! She stayed up until midnight telling me how she was going to redecorate her bedroom when we get home. This was the longest conversation that we’ve had in a while. It was great to be able to sit up in bed talking about things she wants to do. We even talked about running through the hallways in the hospital at midnight to keep the doctors and nurses busy. This would be so much fun! Kacie finally fell asleep around midnight and slept well throughout the night. She hasn’t complained as much with the abdominal pain. This made for a peaceful evening and allowed all of us to get a little more sleep. Kacie made up for the lack of sleep today because she slept most of the day. We worked on decorating her room for Christmas. It is amazing how creative you can be when you are stuck in a room for so long. We covered some basins with wrapping paper and bows to hold Christmas candy and other craft items. We wrapped up paper cups to hold her fingernail polish and lip-glosses. Everything looks so festive. We even painted some tongue depressors and used them in several of our crafts. Another creative idea was that we cut and are using the mylar balloons to wrap some candy and made a candy garland. Towards the evening Kacie had dry heaves and was coughing. All of a sudden her nose started bleeding. We were able to stop the bleeding. Thankfully, her platelets were at a high level. Physical therapy brought in a special chair so that we can start working with Kacie to have her sit up more on her own. Jennifer, the physical therapist student that has been working with Kacie, brought her a gift today since it was her last day on this rotation. Jennifer’s mom is a writer and has asked if she can write a story about Kacie in a devotional journal magazine. What a blessing to have so many people wanting to help in so many ways. A group of children came by today and played Christmas carols on their violins. They are part of an ensemble group. They played such beautiful music. We I asked one of the little girls how long she has been playing she told me 6 years and she is only 9 years old. Watching these children bring so much joy to everyone on the unit was very emotional. We are longing for the day when Kacie will be fully recovered and our family will be back together. Thank you to everyone for standing by us in our time of need. Please continue to pray for Kacie’s full recovery. We’d love to see her running up and down the hallways ... smiling and giggling! Smiles & Giggles, Donald, Kathi, & Kacie December 15, 2001 - Day +65 - Wheeling Down The Hallways... What a great day! Kacie and I slept until 9:30 a.m. and Kacie felt good when she woke up. She had some problems with her foley last night at 1:00 a.m., so they had to reposition the foley. She has several blood clots in her urine, but the doctors feel it is due to irritation. Kacie’s temperatures have been very good today. They have all been between 97° F and 98.5° F. This is the first day in about sixteen days that her temperatures have been in the normal range. Also, Kacie has not complained of the abdominal pains today. Hopefully, they have this under control as well. We forgot to mention, but the doctors are also treating Kacie for another “itis”, called polyneuritis. Polyneuritis is inflammation of multiple nerves and the doctors felt that it may be contributing to Kacie not being able to move her feet and toes. They started her on another medication, called IVIG, which she’ll get for five days. Today, Kacie moved her toe a little and she kept telling us that her foot was tingling. We are praying that this is a sign of improvement. We were able to find a wheelchair that is just the right size for Kacie. We wheeled her around the hallways so she could see everyone’s doors that are all decorated for Christmas. We’ve decided to keep the wheelchair in her room since it was hard to find one small enough. “Chevy Chase’s Christmas Vacation” is on tonight and Kacie wants us to watch it together, so I’d better go. Keep praying for Kacie’s full recovery and that she has great improvements every day. THANKS!!! Smiles & Giggles, Donald, Kathi, & Kacie December 16, 2001 - Day +66 - Day Of Thanks... Kacie had another great day today!!! Her temperature stayed in the normal range all night. It went up to 101.5° F today, but overall her temperature is staying down. The doctors, physical therapist, and neurologist all thought that she had better tone in her feet today. We are hopeful that the new medication, IVIG, is helping her to improve. I found a small chair that will fit Kacie so that she can start sitting up and touch the floor with her feet. Christmas is right around the corner and we are so fortunate to have a wonderful care partner. Kate came over and watched Kacie so that Donald and I could get some Christmas shopping done. We were able to get most everything done. We are trying to make sure the girls get a few of the things that they want. Neither one of the girls have asked for anything, except both of them want to be together as a family. It has been difficult these past few months with not being together. We feel extremely blessed that so many people truly care about Kacie’s situation. All the many things that everyone is doing, the care packages, the thoughts, notes, and prayers are so encouraging. MANY THANKS!!! Smiles & Giggles, Donald, Kathi, & Kacie December 17, 2001 - Day +67 - 100% YEAH!!!... Kacie stayed awake until 2:00 a.m. because she couldn’t sleep. She probably is having problems keeping her days and nights straight. We had to get up at 7:00 a.m. for another CT scan of her mastoid (bone behind the right ear). This scan looked a little better than the last scan so they don’t plan on doing surgery on the mastoid at this time. We love hearing great news! The bone marrow biopsy results came back today and it still shows 100% donor cells. This is excellent news and we are so excited! We’ve also been receiving messages and gifts from her donor. It will be wonderful when they get to meet each other. Kacie had another wonderful day today. Her teacher came by and they read stories. She had occupational therapy and physical therapy twice each today. Molly came by this evening and they watched a movie together. The physical therapist has suggested an orthopedic physician evaluate Kacie’s legs and feet so they can fit her for ankle braces. She feels that Kacie needs the braces while we are trying to work with her to get her to stand up, this way she won’t injure her ankles. Please continue to pray for Kacie’s continuous progress. Each day brings special moments of joy in watching her improve. Smiles & Giggles, Donald, Kathi, & Kacie December 18, 2001 - Day +68 - Kacie's Miracle Gift - 1000 GOAL REACHED!.. Kacie had another wonderful day today! After trying to catch up on all the email messages, we started calculating the number of volunteer hours that everyone has been contributing to help with Kacie’s Miracle Gift. We are very excited to announce that we are over 1000 hours of volunteer hours. Thank you to everyone who has helped Kacie and our family reach out to help others during the holidays. Let’s not stop at 1000 hours though, let’s strive for another 500. We know that it can be done! Kacie had a very busy day with occupational therapy, physical therapy, her schoolteacher, and the neurologist all working and evaluating her progress. They even had her try to stand on the floor. Her legs and feet are so weak that it was very difficult. Tomorrow we will be taking her to the physical therapy room to work with the therapist. Kacie’s temperature seems to be staying down in a good range. She rarely complains of abdominal pains or headaches. She has been awake most of the day laughing and telling stories. She can’t wait until her sister, Erin, comes out to visit. Please continue to pray for Kacie’s full recovery. Pray especially that she starts gaining a lot of strength in her hips, legs, feet, and toes. Smiles & Giggles, Donald, Kathi, & Kacie December 19, 2001 - Day +69 - Just A Swingin'... Another wonderful day! Kacie had a very busy day. She went to the physical therapy room this morning. They had a really cool inner tube supporting swing that she was able to swing in for a while. She really looked comfortable and she loved swinging while listening to music. Then we tried her on the tilt table. This is a table where they would strap her down and then slowly tilt the table up until she is standing. She had a lot of trouble with laying straight on her back with her legs out straight. She kept complaining that her stomach muscles were hurting, so the therapist just let her get use to the table. We decided we would try again tomorrow. The orthopedic specialist came in and fitted Kacie for ankle braces. Basically, he molded a synthetic type cast around her calf and foot, then cut the mold off. The mold will be used to design specially made calf/ankle braces for Kacie. The really neat part was that Kacie was able to pick out a special design for her braces. Guess what she picked? The design that she picked has flowers with smiley faces in the center of each one. It is definitely the right style for Kacie since she loves smiley faces. Kacie had to have another chest x-ray done today because she sounded coarse in her lungs. She sat up in a chair without back support to have the x-ray done. She did great and the x-ray was normal. We decorated Kacie’s door on the inside and outside. She received a beautiful ribbon decoration with angels on it from Brownie Troop #1187 in York County, Virginia. We hung it on the outside of her door and everyone keeps coming by to read all the messages. Thanks Troop #1187! Kacie’s been receiving a lot of Christmas cards and we hung all of them on the inside of her door where we can read them to her. Thanks to everyone for all the cards! Both of Kacie’s doors look so beautiful! Please continue to pray for Kacie’s full recovery. Each day is another step closer to her recovery. Smiles & Giggles, Donald, Kathi, & Kacie December 20, 2001 - Day +70 - Plop, Plop, Fizz, Fizz... The last few days Kacie has been complaining of abdominal pains. Usually the pains can be controlled with heat packs; however, last night she started having extremely bad pains and she moaned most of the night. Of course, I had them page the resident at 2:00 a.m. so that he could see the pain that she was experiencing. She has had abdominal pain since day +5 and she is now on day +70, so that is 65 days of abdominal pain at different degrees. As you may imagine, our threshold of patience is wearing thin. It is very difficult watching her in so much pain, but not having an answer as to the source of the pain. Because of her severe pains, Kacie had to skip occupational therapy and physical therapy today. Hopefully, she will be able to start both of them back tomorrow. Kacie had an ultrasound of her entire abdomen area today. They are still unsure as to why she is having so much pain. She has been passing blood clots for the last several days. The urologist came by this evening and irrigated her foley. This didn’t seem to help much, but a blood clot did come out. The doctors have ordered a blood test of her pancreas. She had this done last week, but they feel they need to repeat the test since she is in so much pain. The doctors are discussing the plans for tomorrow, probably a CT scan with color contrast of the entire abdomen. In the meantime, they have doubled her pain medication. The doctors ordered for “Kacie to have a peaceful night with good rest”. I certainly hope that she does sleep well, since we didn’t get much sleep last night. Thanks to Aunt Deb & Uncle Dan (Deb & Dan Feick) for watching Erin the last few days. Grandma Honey (Jeanette George) was admitted into the hospital Tuesday evening for some kidney issues. Please pray that she has a very speedy recovery. Pray that Kacie has a very restful evening. Pray for the doctors to have the wisdom to determine Kacie’s abdominal pains so they can be resolved. And please continue to pray for Kacie’s full recovery. Thanks again to everyone for your continued support and prayers! Smiles & Giggles, Donald, Kathi, & Kacie December 21, 2001 - Day +71 - Yet Another Test... Kacie had another very long night. The doctors doubled her pain medication so that she could sleep comfortably; however, she woke up every two hours needing more pain medicine for the abdominal pains. Her doctor ordered a CT scan to check her abdomen and pelvic areas. Kacie had fevers during the night of 103.3° F and her respirations had increased quite a bit. She also had complained of her head hurting a little, so the doctors added to her CT scan. They decided since Kacie had been diagnosed with several issues, it would be better to go ahead and scan everything while she is already down in radiology. To sum it all up, they did a CT scan of her brain (to check the ventricles and edema or inflammation), sinus (to check to see if the sinusitis is better), mastoid (to check the bone behind the right ear to see if the mastoiditis is better), chest (to check the lungs), abdomen and pelvic areas (to check for what is causing Kacie so much tummy pains and to check the positioning of her ventricular shunt). We probably won’t get the results back on the sinus or the mastoid until tomorrow. The scan of the brain showed that the ventricles had both gotten smaller!!! That means the internal shunt should be working. They weren’t able to find anything abnormal with the abdomen or pelvic areas and the neurosurgeons felt the ventricular shunt in her abdomen looked fine. This means we still don’t have an answer as to why Kacie is having so much abdominal pains. Then the doctors explained that we have another new situation. The scan of her lungs show a spot in the right lung. Kacie’s doctor notified the pulmonary specialists and they scheduled her for a procedure, called a bronchoscopy. This procedure will allow them to look at the lungs, clean the “spot” out, and then culture the specimen to determine whether it is an infection or what. Kacie got her new ankle/foot braces and they appear to fit her well. She really thought they were cute with the smiley face flowers. We need to go buy her a new pair of tennis shoes to wear over the braces. It will take some getting use to and to brake them in. I finished making Erin and Kacie each their own Christmas blankets today. Now it is midnight and we still have to wrap gifts. We’d like to have the girls’ gifts wrapped before Erin gets here tomorrow. Grandpa (Sam George) will be flying out with Erin tomorrow. Christmas is a special time of the year for our family. We have been especially touched by all the love and care from everyone, even people we’ve never met. To even describe our emotions would be very difficult. Please accept our sincerest thanks for standing by us during these difficult challenges. We are still in deep prayer that Kacie will have a full recovery. Please keep her in your prayers. Each new challenge just makes us realize how precious every day is to us. Pray that Kacie can overcome each of these new challenges. Smiles & Giggles, Donald, Kathi, & Kacie December 22, 2001 - Day +72 - Erin & Grandpa Arrive... I believe we will be having a White Christmas! When it started snowing today, the flakes were larger than any we’ve ever seen. It was so beautiful watching all the snow coming down. Kacie had a surprise visit from Santa! And I wrapped presents for the girls while Donald went to pick Erin and Grandpa (Sam George) up from the airport. Due to the weather, their flight was delayed by a little bit. The airlines have implemented a lot of restrictions; one of the restrictions is they weren’t allowing wrapped Christmas presents on board. So Grandpa stayed up late last night unwrapping all of the presents so that it wouldn’t hold them up at the airport. But they had a real surprise when Erin’s carry-on luggage went through the scanner and several detectives came over and pulled them aside. Erin had packed her planner notebook from school and unbeknownst to Erin or Grandpa, the planner had a large pair of scissors in it. They confiscated the scissors and of course all of this held them up at the airport. We got a big chuckle out of hearing Erin tell the story, but we’re sure Grandpa wasn’t happy at the time. Oh, the innocence of a child! This morning I had decided to have the nurse wake me up at 6:00 a.m. so that one of the aides could watch Kacie while I go down the hall and get a quick shower. I have learned to take very quick showers and I told the nurse that I’d be back within 15 minutes maximum. I quickly went to the shower and noticed that the shower-head was lying on the floor broken. I went over to the nearest nurses’ station and asked about the shower and they told me someone had broken it and the technician would be up later to fix it. To give you a good picture, here I am in my pajamas standing in front of about eight doctors and nurses, pleading for them to give me some tape so that I could fix it myself. A couple of them said that someone else had already tried to fix it with tape, but it didn’t work. All I wanted was a shower! Anyway, one of the nurses felt sorry for me and handed me a roll of tape. I taped up the shower-head, took a very quick shower, and made it back after being gone for about 30 minutes. I felt really bad, but looking back at the situation it was pretty funny. The doctors started Kacie on another antibiotic that is good for bronchial infections. She had an x-ray of her chest first thing in the morning so they can compare it to an x-ray after the bronchoscopy. She also had an echocardiogram of her heart prior to the bronchoscopy. The echocardiogram showed a small amount of fluid around the heart, but this was not abnormal. During the echocardiogram they also tested the ejection fraction; which is used to determine the strength of the heart and it was very good at 70. They did the bronchoscopy procedure in Kacie’s room. The pulmonary specialist used a salt solution to help extract clear blubbly secretions. They did a gram stain and the results came back as positive gram cocci; which is a form of bacteria. Now we have to wait (approximately 24-48 hrs.) for the culture results to determine the type of bacteria so they can identify the sensitivity levels on the antibiotics. Hopefully, the antibiotic that they started last night will show up as a good antibiotic for the bacterial infection. The results from the sinus and also the results of the mastoid both showed as no real change from the last CT scans. At this time the doctors will be focusing on resolving the bacterial infection that is in the lungs. After clearing the infection, if she still has high fevers then they will rescan the sinus and mastoid to determine if those infections are getting any worse. Kacie has several infections within her body and she still needs special healing. Thank you for keeping her in your daily prayers. Smiles & Giggles, Donald, Kathi, & Kacie December 23, 2001 - Day +73 - Pneumonia... The nurse woke me up at 5:00 a.m. because Kacie’s temperature had gotten up to 104.7° F. She was still in pain from her bladder and she has more bleeding in her urine, so they did another ultrasound of the bladder. They noticed a blood clot at the neck of the bladder where the foley goes in. The doctors decided to keep flushing the bladder and kidneys with extra fluids. They increased her fluid intake and also increased the diuretics to help the fluid pass through the kidneys and bladder. Kacie’s creatine level of her kidneys was up, her potassium level was down, and her INR (blood clotting factor) was down. The doctors changed some of her medication around and increased her hemoglobin level to 10 instead of 8. This means anytime her hemoglobin level is below 10 she will get a red blood transfusion. The doctors also decided to give her fresh frozen plazma to help with blood clotting. They diagnosed Kacie with bacterial pneumonia. We still have not gotten the culture results back to determine which bacteria are growing. We hope that she is on the right antibiotics to help with her recovery of the pneumonia. She is restricted to her room, so we weren’t able to take her on a wheelchair ride today. Kacie’s respiratory rate has increased, she’s been in a lot of pain from her bladder, and her temperature is high. She has been pretty miserable all day. We kept asking for pain medication; which normally makes her very sleepy and she slept for a long period. Donald took Erin Christmas shopping to get a few gifts. They had a wonderful time together. Grandpa (Sam George) and I stayed with Kacie. Kacie had a special visit from a very kind man and his daughter who were bringing a gift to all the children on the unit. When I asked who the gift was from he just stated that it was from him and his daughter. I found out later that they always drop a gift off for each child at Christmas. There is so much kindness all around us even from those we’ve never met. Grandpa (Sam George) will be leaving early in the morning. He plans to come by to see Kacie around 6:00 a.m. before he has to leave. It is difficult not being with all of our family during the holidays. We greatly appreciate that Grandpa brought Erin out to be with us during Christmas. We know that it will help Kacie to have Erin around for a few days. As we always end all of our updates, please continue to pray for Kacie. She is a special child and has endured so much. Pray for her healing from head to toe. Pray for her strength. And pray that she is well enough to enjoy the time Erin has to be with her during Christmas. Smiles & Giggles, Donald, Kathi, & Kacie December 24, 2001 - Day +74 - Difficult Entry To Write... Today’s website entry is very difficult to write. Every time I have started to write any of the events, I have broken down into tears. Here we are on Christmas Eve, far away from our family, watching our precious daughter struggle to live. Kacie had a difficult time all day yesterday and it was very late when I finally got to sleep. I had only been asleep for an hour, when I awoke in a panic. The resident and two nurses were telling Kacie to breathe. I jumped up and immediately was by her side. She was extremely restless and the resident was ordering the nurse to hold Kacie up so she could breathe. Kacie started kicking and hollered at the nurse to “let go of me”! The nurse wasn’t able to hold her up, so I grabbed Kacie and started hugging her and telling her to please breathe. She looked at me with pleading eyes that seemed to say, “Mommy, please help me”. I felt very weak and helpless and was praying that God would show us yet another miracle. I kissed her and told her how much I love her and how much her daddy and sister and everyone else love her. Her oxygen was decreasing fast and she was arching her back as if to catch another breath. Please God, give Kacie another breath, and another, and another. Please breath fresh life into her and comfort her. Everything seemed like such a blur and I felt very numb. Lots of doctors were rushing in the room and everyone had a major role in helping Kacie. The ICU doctor was extremely calm and was excellent at directing everyone to do what was necessary for saving Kacie’s life. She held Kacie’s head back and put a breathing apparatus over her mouth and nose and started pumping oxygen into her. She was able to get Kacie’s oxygen level up to 90%, but she was having a hard time keeping it up that high. The doctor quickly explained that she needed to intubate Kacie and put her on a ventilator. Tears just flowed from my eyes. About that time the anesthesiologist came in the room and he asked if I wanted to stay while they do the procedure. One of the nurses offered to go out of the room with me. How can this be happening? Hasn’t she been through enough already? Donald and I really didn’t want her to be intubated and yet here we are faced with the need to put her on the ventilator to save her life and we have no choice in the matter. I asked one of the nurses to call and let Donald know what was going on. More and more tears just kept flowing as the doctors started the procedure. Donald, Erin, and Grandpa (Sam George) came over in a hurry. This was very difficult for all of us as we stood outside Kacie’s room while they were intubating her. There were no dry eyes around. The ICU doctor finally came out, after what seemed like an eternity, and said that Kacie was doing fine. Kacie needed the ventilator to relax her and help her to breathe. The doctor explained that Kacie had a lot of fluid in her body and it was also in her lungs; which was making it difficult for her to breathe. She explained that the fluid in Kacie’s body was leaking into the capillaries. As it was getting near the time for Grandpa (Sam George) to get to the airport, we had another difficult decision. Grandpa wanted to stay because he felt we needed him here, yet Grandma Honey (Jeanette George) was recuperating at home after being released from the hospital on Saturday. Plus another difficult decision was whether Erin should stay under these circumstances. We all discussed the whole situation and determined that it was best for Grandpa to go back home to take care of Grandma Honey, and we decided that Erin should stay with us here in Minnesota. It was extremely emotional telling my dad (Grandpa) goodbye and it was very hard for him to leave as we watched Kacie lying in the bed so helpless. It is 11:00 p.m. and we’re all exhausted. I have a lot more details because there were other events that occurred during the day, but I’ll have to update you on the events later. At this time, Kacie is stable and doing a little better. I’ll try to post more information tomorrow. Please pray for Kacie. She is in definite need of some more miracles. God has healed her in so many ways already and we know that he can provide more miracles and healings. This is not the update that I had in mind today. I should be describing all the spirit of Christmas through my children’s eyes. Watching the glimmer in their eyes from all the excitement. Hearing the joy and laughter from their voices. We are very blessed this holiday season that we are together and that we have so many people showing their love and support for our precious daughter. Thank you and God Bless! Have Yourselves A MERRY CHRISTMAS! Remember the reason for the season is Jesus! Smiles & Giggles, Donald, Kathi, & Kacie December 25, 2001 - Day +75 - Christmas... If you didn’t read yesterday’s journal entry, you may want to go to the archives link and read it first so that you understand all the changes in Kacie’s medical status.
Part 2 was added at midnight...
Part 1:
It is now Christmas morning. I don’t hear the excitement in my girl’s voices, wanting to run downstairs to see if Santa came. I’m sitting in Kacie’s room with her and the ICU nurse is busy giving her medications. I’m trying to hold back the tears. I keep thinking that I just woke up from a very bad dream. Here come the tears or more like a flood of tears. Why is all of this happening to our little princess angel? Yesterday, Kacie went back into surgery to take out the hickman catheter that is in her chest and replace it with a larger one. As we sat in the surgery-waiting lounge, we realized that the room was mostly empty. Everything starts to run through my mind. Again, the tears are flowing uncontrollably. This surgery was to prepare for dialysis. They were planning to start dialysis last night, but as the night went on we found out that they wanted to wait until the morning. Now I’m sitting here waiting as I’m watching my precious child laying there suffering. They are keeping her pretty much sedated, but her body is ballooning up from all the fluids. She has gained over 10 pounds in fluid since Saturday morning. The fluid is in her cells and tissues and out of her vascular system. What has to happen is they need to get the fluid out of her cells and tissues and back into the vascular system and pulled out of the body. It was described as her capillaries are leaky. Kacie did great during the surgery. They brought her back to her room and throughout the rest of the day and during the night they were able to decrease some of the settings on the ventilator. It is good that the settings are being decreased. This means her lungs are doing better. There was a lot more to yesterday’s events but I must not be thinking to clearly because a lot of the details are a blur. Again, I’m crying. Here I’ve woken up on Christmas morning praying for Kacie to survive this major medical challenge. The doctors have tried to give us hope. Her lungs are doing better and the challenge at this point is to get the fluid off. I’ll update later this evening on the days events. This is not the type of updates that I was looking forward to writing on Christmas Eve and Christmas morning. What I really had planned to write is how thankful and blessed our family is for having the wonderful love and care that everyone has been giving us during this very difficult situation. Thank you for everything. The packages keep arriving and we can’t express enough our gratitude for everyone trying to make our Christmas pleasant. God Bless Everyone! Merry Christmas and Happy Holidays from our family to yours! Please hug your children and enjoy your day together.
Part 2:
Even though it is very difficult watching our little girl in this situation, her medical condition did improve today. Kacie had her first hemo dialysis treatment today. It took a while for them to set the dialysis equipment up and then it ran for four hours. Their goal was to pull off 2.5 kg (or 5.5 lbs) of fluid, and they were successful in getting this amount off. We could actually see that she wasn’t as puffy. The doctors explained that her creatine level was increasing and the level had reached 2.2. This level is used to determine the function of the kidneys and to determine how hard the kidney has to work to filter toxins and fluids out. Also, her bun level, which is a level used to test the proteins within the body, was increasing. According to the renal doctor, her kidneys are only performing at 10%; which means 90% of the kidney function is failing. The renal doctor believes she will recover kidney function again once they get the fluid under control and ensure there aren’t any more infections. Kacie had another chest x-ray this morning and the lungs looked a little better compared to yesterday’s x-ray. She had an ultrasound of her bladder and it showed blood clots in the bladder, plus it showed that the spleen was enlarged. We also had learned yesterday that Kacie has hemorrhagic cystitis; which are when the lining of the bladder is inflamed and the bladder is filled with clots. They are irrigating the bladder and she is on a continuous fluid drip going into her bladder to flush the bladder. When they started the flushing, the fluid was very red coming out and had lots of clots. The fluid has gotten clear with occasional blood. The flushing is used to help heal the bladder wall. We also learned yesterday that Kacie had skin graft vs. host disease. She has a skin rash all over her body. They are treating it will high doses of steroid lotions. Kacie has been having several changes to the ventilator all day. All of the changes are positive improvements towards getting off the ventilator. Her oxygen level has been decreased to 30. Normal oxygen that we breathe is 23, so she is getting close to that level. There are a few over pressure levels that they monitor closely and she is getting close to the desired levels on them as well. Her blood gases are also improving and showing great results. The blood gases are what they use to determine whether they can make changes to her ventilator settings. There has been so much information in such a short amount of time that it is hard to remember everything, but hopefully we have highlighted the most important issues. To sum up the events within the last two days, Kacie is improving! Praise God! Santa did find his way into Kacie’s hospital room and filled her room with lots of gifts. A lot of extra gifts kept appearing under the tree, I believe they came from families of previous bone marrow transplant patients and other caring families that live in the area. We plan to leave all of Kacie’s gifts in her room and will celebrate once she is able. Our family received a wonderful gift from God in that Kacie is showing improvements from yesterday. Each day is another miracle and we are thankful that Kacie is getting better. She has an ICU nurse around the clock again to monitor everything. I counted six IV poles in her room today, not to mention how full each of the poles were or the amount of additional equipment that is needed. Please continue to pray for Kacie’s total healing. The last two days were very critical to her survival and she still has a long way towards full recovery. Please also pray for all the children and their families that are going through severe medical situations. Thank you for all the words of encouragement and the many prayers. May God be with all of you. Smiles & Giggles, Donald, Kathi, Erin, & Kacie December 26, 2001 - Day +76 - 13 POUNDS!!!... If you didn’t read the journal entries the last couple of days, you may want to go to the archives link and read them first so that you understand all the changes in Kacie’s medical status. Yes, thirteen pounds! It normally takes most people several weeks to lose thirteen pounds. Kacie had her second dialysis treatment and they were able to pull off another 4 kg. (or 8.8 lbs.). When we weighed Kacie she had lost thirteen pounds from the effects of the two dialysis treatments. She lost a lot of the extra puffiness in her body and she looks a lot better. Her skin graft vs. host disease is also looking better since they started putting steroid lotions all over her body four times a day. Kacie has made a lot of progress since going on the ventilator. They have been able to wean the settings down so that she can start to try and take some of her own breaths, rather than the machine doing all the work. They are starting to reduce her sedatives so that she will be able to interact more. Hopefully, she won’t require the ventilator much longer. Her chest x-ray this morning looked a whole lot better. When we asked the doctors whether it was 50% better, they said they felt that it was significant and they felt it was more than 50% better. Her creatine level (to determine kidney function) went down from 2.2 to 2.0 today. It is heading in the right direction. A level of .7 or under is the optimal level they would like to see. The dialysis treatments are not what will help this level, Kacie’s kidneys have to recover on their own. The hemorrhagic cystitis, or bladder lining irritation, is probably getting better because the flushing is mostly clear. Every time Kacie coughs it causes some redness, but then it goes back to clear. Our prayers are being answered. Kacie still has a lot of healing and recovery to go, so please keep sending up the prayers. Thank you for your continuous love, support, and prayers! Smiles & Giggles, Donald, Kathi, Erin, & Kacie December 27, 2001 - Day +77 - Beautiful Eyes!!!... If you didn’t read the journal entries the last couple of days, you may want to go to the archives link and read them first so that you understand all the changes in Kacie’s medical status. Kacie’s chest x-ray this morning looked even better. The doctors are very pleased with her progress from the lungs. They’ve decided to be pretty aggressive in getting her off the ventilator. Hopefully, this will happen before Erin leaves to go home. Kacie has begun to initiate her own breaths; which is excellent! The doctors have started reducing the sedatives that Kacie is on so that she can respond more. She kept her eyes open several times today. It was such a blessing to have her looking at us. She was also able to squeeze our fingers. Erin kept going over to Kacie’s bed and talking to her. It is wonderful watching the love that they have for each other. Erin truly cares a lot for her sister and it has been very hard for them to be away from each other for so long. Kacie had dialysis again today. They were able to pull off about 2 kg. (or 4.4 lbs.). She is really starting to look more like herself now that she isn’t so bloated. Her creatine level came back at 1.8 tonight. The neurologist has decided to have a nerve conductivity test done tomorrow. This test will help them determine the issues surrounding the fact that Kacie doesn’t have full control over moving her feet and toes. They had discussed this test once before but didn’t want to do it because she needed to be sedated. Since she is on the ventilator, they believe it would be beneficial to go ahead and perform this test. The physical therapist was very impressed with Kacie’s legs today. She had less resistance than before and she was stretching her legs all the way out. On every Thursday they have a Kid’s TV show for all the children on the various units. They play bingo, tell jokes, play trivia games, etc. The children can call in to the program and they are live on the tv. Erin called in three times, once to tell a joke, another time to determine a fuzzy picture item, and a third time to guess part of a movie clip. She won several gifts, and of course, she picked out gifts for Kacie. When the nurse turned Kacie to her side this evening, Kacie’s oxygen level started dropping down into the 80% range. They tried suctioning her out and pumping more air to bring up her stats, but it wasn’t helping much. They had to call the doctors in and they laid her on her back and arched her head back to help get her oxygen level back up. They were able to bring it back up. They thought that the tubes may have shifted, so they had another chest x-ray done. The x-ray showed that the tubes were in the right place, but she had a lot of secretions in the left lung. They said that she probably has atalectasis; which is where there is mucous or secretions that are in the alveoli of the lungs that keep the oxygen and other gases from flowing properly. So they are suctioning her lungs out more often and trying to get her to cough so that she can get the secretions out. As if that wasn’t enough to scare us, Kacie’s foley had clotted up and she started leaking around the foley. They tried to irrigate her bladder, but she had lots of clots that couldn’t get through the foley. The foley that is in her is a three-valve foley that allows for the saline solution flush. They finally decided to pull the foley and replace it with another one. Then she was able to clear out the bladder again and several clots started coming out. This probably made her feel a lot better. Please keep praying for Kacie’s recovery. Pray that her lungs heal and she can get off the ventilator real soon. Pray that all the edema and infections leave her body and her kidneys start functioning normally. Pray that the skin graft vs. host disease heals. Please just pray for overall healing. Thank you once again for all of your support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie December 28, 2001 - Day +78 - Irrigation Day!!!... If you didn’t read the journal entries the last couple of days, you may want to go to the archives link and read them first so that you understand all the changes in Kacie’s medical status. Kacie had an extremely busy schedule today. They had to reschedule her dialysis treatment until the afternoon since she had other tests that had to be done. The urologist came in to examine Kacie and decided to suction her bladder out. They use a much larger catheter so they can be more successful in getting the blood clots out, and he was able to get a lot out. He suctioned the bladder out until it was clear. After about an hour after he left, Kacie stated having more clots. The nurses had to suction her through the regular catheter two more times during the day. She even got very agitated and sat up with bad cramps. The doctors are still working on reducing her ventilator settings and her medications so they can wean her off the ventilator. They will be working on these settings throughout the night. She has been a little more awake this evening. Her chest x-ray looked better too. The doctors performed a nerve conduction test and an EMG to determine why Kacie is having problems moving her feet and toes. The results of these tests showed that she has polyradiculopathy. Basically, there are still nerves that go all the way to the foot muscles though it is fewer than normal. According to the doctors, the nerves recover by growing more nerves. Kacie’s skin graft vs. host disease (gvhd) is a little worse today. They have been treating her with steroid lotions, but decided to start her on steroid medicines as well. Her skin is very red, almost like a burn with a rash. Kacie also had an ultrasound done of her bladder and kidneys. The bladder still has blood clots so they will continue to irrigate the bladder. The kidneys did not show any signs of bleeding. They did describe the kidneys as being echogenicity; which is a medical renal disease. Please pray that Kacie does well throughout the night. Pray that they can continue to wean her off the ventilator and that she is taken off the ventilator in the morning. Pray for her continued overall health. Many thanks for all your prayers and support. Smiles & Giggles, Donald, Kathi, Erin, & Kacie December 29, 2001 - Day +79 - Grandpa & Grandma Honey Arrive... If you didn’t read the journal entries the last couple of days, you may want to go to the archives link and read them first so that you understand all the changes in Kacie’s medical status. We apologize for not updating the website last night. The sleep deprivation is starting to kick in. We decided to get a good night sleep, or our bodies decided that for us. Grandpa and Grandma Honey (Sam & Jeanette George) arrived by plane around 10:00 in the morning. It is great to see them again. They were very excited to see Kacie and to hear that the doctors are trying to wean her off the ventilator. They are also decreasing her sedatives. She was more awake and turning her head to look at us. Her chest x-ray also looked better. Kacie had dialysis and they were able to net 1.3 kg off. She finally looks more like herself and not so bloated. I’m sure she is feeling better as well. Erin has made a few friends here at the hospital. They are brothers and sisters of some of the other patients. Erin loves being here close to her sister. She has been very helpful. The nurses are teaching her how to help Kacie. She has learned about putting steroid lotions on her and how to do her mouth cares. These things are not easy since she has a lot of tubes and she is on the ventilator. We are so proud of Erin for helping out so much. Please continue to pray for Kacie’s recovery. We are praying that she will get off the ventilator before Erin, Grandpa, and Grandma Honey have to leave on Monday. Smiles & Giggles, Donald, Kathi, Erin, & Kacie
If you didn’t read the journal entries the last couple of days, you may want to go to the archives link and read them first so that you understand all the changes in Kacie’s medical status. Kacie started breathing on her own today. She is doing extremely well and her chest x-ray looked good. The doctors took her off the ventilator, also known as being extubated. Her respirations are a little fast, so she has to breath into an incentibe spirometer to help strengthen her lungs. It will be very important for her to take a lot of deep breaths and to cough as much as possible. Hopefully, she will slow down on her breathing and will continue to show good progress. Her blood gases also look very good. Kacie had dialysis again today. They took off a net amount of 1.3 kg. She weighed in at her dry weight; which is very good. Finally, Kacie had all of her stitches in her head removed. She had the stitches in over a month. It was funny watching the neurosurgeon looking all over her head to make sure that he didn’t forget to take any out. She had so many different surgeries and each time she had new stitches added. Several of the nurses and doctors nicknamed her “Patches” because she was also pulling off the patches on her head. Donald called me early this morning to invite me over to the apartment for a home-cooked breakfast. He made scrambled eggs mixed with sausage, hash brown potatoes, bacon, toast, home-made biscuits, blueberry muffins, orange juice, and coffee. This was the best meal I’ve had since we’ve been here. It is great having a home-cooked meal! Hospital food and take-out meals just aren’t the same. Grandma Honey spilt a hot cup of coffee all over her. She doesn’t even drink coffee; she was holding Grandpa’s coffee for him. It was very hot and thankfully, she didn’t get burnt. I loaned her a pair of pants, of course the pants were too big on her, while I washed her pair. There is a washing machine and dryer at the hospital for the patients use if needed. We are so thankful that Kacie is off the ventilator. Maybe she will start to talk and can spend a little time with Erin, Grandpa, and Grandma Honey before they have to leave tomorrow. They are planning on coming over early in the morning to see Kacie. If Kacie is doing well in the morning, we will probably have Erin help Kacie open a few Christmas gifts. Please continue to pray for Kacie to improve each and every day. Pray that she does well off the ventilator. Pray that her bladder and kidneys heal. Pray that the graft vs. host disease is cured. Pray for Kacie from head to toe. Pray for her full recovery. Thank you for all of your prayers and support. We gratefully appreciate all the love and support that you have shown Kacie and our family. Smiles & Giggles, Donald, Kathi, Erin, & Kacie December 31, 2001 - Day +81 - Looking Forward to Brighter Days... The entry for December 31, 2001 was updated late since there were problems accessing the network. If you didn’t read the journal entries the last couple of days, you may want to go to the archives link and read them first so that you understand all the changes in Kacie’s medical status. Another chest x-ray was done this morning and it was better than the previous one. Kacie’s respirations and blood gases are doing great! She is breathing on her own, with only occasional oxygen given to her. Kacie had another day of dialysis. She lost another kilogram or 2.2 lbs. She is below her initial weight of when she came in the hospital by .4 kg. We’re just excited that all the extra fluid has been taken off. Kacie had an excellent day! She really worked hard with physical therapy! Today she was able to push her legs all the way out and then pull them back up. This was the best she has moved her legs since around day +6 and she is now on day +81. This happened just a little bit before Erin, Grandpa, & Grandma Honey (Sam & Jeanette George) had to leave to go back to Virginia. I believe Kacie wanted them to see how well she is getting. As always, she was trying to make all of us smile! Before I went to bed last night I had told Kacie to raise her hand if she needed me and the nurse would get me. When I woke up in the morning, Kacie had her hand raised. I immediately went over to see her. She tried talking, but it is hard to understand her since she is mainly moaning when she talks. Her throat is probably sore from the ventilator tubes. Kacie is still having bladder spasms. Every time she coughs or moves in bed, she has bleeding and sometimes more clots. We are trying to keep her sitting up in bed to help with the bladder spasms and to help with her lungs. It was very sad to see Erin, Grandpa, & Grandma Honey leave. Erin was very upset to go, she really wants to be here with her sister. We were hoping that Kacie would be doing much better before Erin had to leave so that Erin could help her open her Christmas presents. We still have her room all decorated for Christmas and we will wait until Kacie is better before opening her gifts and taking the decorations down. Erin always has some funny stories. Remember our story on December 22nd where Erin was stopped by the airport security? Well, they confiscated a pair of scissors from her notebook that day. Today, on her way to checking into the airport she was questioned again by airport security. This time it was because in the same notebook, she had a protractor. They had to confiscate the protractor. They will be flying into Virginia right at midnight. What an exciting way to ring in the New Year. Well, it is time to look forward to a better year! Kacie has been through a lot of challenges in 2001. Even though she had a lot of challenges, she is our miracle girl, because she has also been through a lot of miracles. We are looking forward to brighter days in 2002. We pray that the challenges are now behind us and each new day brings more happiness and joy for our family to make memories together. Please pray for Kacie to have brighter days ahead. Pray for her full strength and healing. Have a safe and wonderful New Year! May God Bless and Enrich You! Smiles & Giggles, Donald, Kathi, Erin, & Kacie
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