We were also reassured that if treating it with medication does not seem to work, there is yet something more that can be done surgically to help his brain gain more room that is not as risky as his previous procedures. Time will tell and Kelptyn will continue to be our leading star. So Kelptyn will say "bu bye" and walk out of the hospital to go home today. And we'll follow him out once more as he teaches us what it means to carry on.
It's been an interesting past 6 days. Early Sunday morning the tough guy flying was quickly grounded and screaming through severe head pain as his eyes bulged once again. Kelptyn's BMT doctor was a hero as usual and admitted Kelptyn to the hospital to give him pain meds right away. I'm not sure anyone can fully explain why Kelptyn's body had yet another ICP episode, but today he is seeming more like himself on a higher/stronger steroid dose. This is not a long term solution, but we've had many experts weigh in this week on his case and we have decided to continue with an extremely slow steroid wean to see if it buys Kelptyn enough time to get through his rapid brain growth period (maybe that's why they call it the "Terrrible Twos") and give his skull some time to catch up as he remodels bone.
We were also reassured that if treating it with medication does not seem to work, there is yet something more that can be done surgically to help his brain gain more room that is not as risky as his previous procedures. Time will tell and Kelptyn will continue to be our leading star. So Kelptyn will say "bu bye" and walk out of the hospital to go home today. And we'll follow him out once more as he teaches us what it means to carry on.
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The first week of summer has been a blast. Kelptyn didn't have to visit any doctors for a whole week! If all goes well, he won't see one until next Friday. And things have been going oh so well. We haven't seen Kelptyn THIS happy for quite some time. This week we had a lovely Father's day at home, picnicked at the beach, played at the park, visited Papa at Sea World, went to Rockin' Toddler time, and walked to the beach a couple times to get sand in our toes. Kelptyn's rash is looking better and his chimerism shows 86% Tcells, 0% Mcells from last Friday's blood draw. It has been 6 weeks since his most recent surgery and we are hoping for 6 more weeks just like this one. He is unstoppable and keeping us very busy as a toddler should. Keep flying Kelptyn. Kelptyn continues to recover from his latest surgery. He has been taking Decadron (HIGH dose steroids) for the past 20 days to reduce brain swelling and minimize ICP/surgery issues. Tomorrow he will return to Prednisone and it should take 3-4 days to get the dinosaur out of his body.
He has been experiencing REALLY bad withdrawal side effects over the past week as we've been weaning his dose. He's gained 4 pounds over the past 2 weeks from eating (mostly cheese) 24/7. He's had night terrors, sweats, and can't manage to sleep more than a 2 hour stretch at a time. His inner dinosaur has been roaring at us and doesn't like walking. He likes to sit and play with toys or be held, ALL day long. We will gladly open the door to let the dinosaur out of our house this coming week. However, we are a bit nervous to see if the surgery has alleviated Kelptyn of his ICP. Time will tell. If he can go 6 months without ICP, we will be more comfortable. We've learned that the human brain is 25% adult size as an infant, 80% adult size around ages 2-3, 90% adult size around age 5, and fully developed around late teens. No wonder he needs more room. Two bone marrow transplants mean his bones will remodel VERY slowly and they just can't keep up with that kind of brain growth, so we are hoping we can get him through this period surgically. On another note, his blood work continues to tell us that the donor cells continue to take up residence in his body. In addition to, GREAT blood production, we got the results of the bone biopsy from his surgery. The pathologist tested bone that was removed from his skull and she found that he had 8% female cells in his skull's marrow. That's good news. We are now waiting to find out if she can test an osteoclast to find out if it is male (Kelptyn) or female (donor). This is not a test that has been performed before at this hospital. Thank you for your continued thoughts, prayers, and well wishes. Kelptyn continues to teach us that when you meet a challenge in life and you think you gave enough...that's when you give a little more....because life is worth fighting for. Kelptyn's surgery was pretty textbook for a posterior fossa decompression. It was uneventful and a well practiced procedure. The surgeon removed about a thumb's width of bone (no vertebrae), so Kelptyn should have more room back there if he doesn't lay down the bone too quickly again. He is recoverying well. He currently has a painfully stiff neck and is on a HIGH dose of steroids still. We have started the very slow process of weaning them once again. Kelptyn's surgery did not begin until just after 10pm yesterday. I asked the anesthesiologist prior to the surgery if they could talk to the ICU doctors before hand and lift the NPO order (nothing by mouth) before the surgery. The cafeteria closes from 11pm-7am. I knew Kelptyn would be hungry long before a breakfast tray would arrive the next morning. Much to our surprise the anesthesiologist went above and beyond his job that night. After he carefully cared for Kelptyn during the surgery, he then checked on him in recovery around 12:00am, and then he went out of the hospital across the street to the Ronald McDonald House (flashed his badge to get in, since it was after hours).....he told them about Kelptyn being in recovery and told them he had gone 25 hours without food or drink. The anesthesiologist then returned to us and handed me a complete set of 12 dinner sweet rolls. I could have cried. This act of kindness was a huge gift of relief for Kelptyn because....when Kelptyn woke up from surgery he screamed and screamed all the way back to his room until FINALLY at 1:00am he got his first bite of bread. Kelptyn then slept and ate all night long. He finished 3 dinner rolls and a cold leftover piece of pizza before his breakfast tray arrived in the morning. A special thanks to this doctor who brought our son moments of peace on his very traumatic journey. We continue to be blessed and amazed by the angels all around our son. THANK YOU everyone for your continued prayers on this journey. Kelptyn will be returning to the operating room again tomorrow afternoon around 2pm for a posterior fossa decompression. The surgery should take about one hour. Basically, the neurosurgeon will be removing bone from the lower back part of Kelptyn's skull to give his brain a little bit more wiggle room. We are once again hopeful that this procedure will complete the trilogy of surgeries to bring a balanced state between the skull and brain. Tomorrow will mark the 40th day that Kelptyn has had to be NPO (nothing by mouth) from midnight until after his surgery. We are once again letting go and letting the Holy Trinity take over.
Kelptyn has been experiencing sleepless and restless nights regularly for about the past 6 weeks. He falls asleep each night as he normally does and awakes initially around 1:00 am complaining of discomfort off/on every 30 minutes. His discomfort would subside by about 9:30am each day and he'd play hard the rest of the day, until yesterday. Kelptyn would not stop screaming from 1am on and it got more and more troublesome.
When we brought him to the ER, he was quickly assessed and brought back to the trauma room when he was pale, not responding, and brady (his heart rate was in the 40s, they consider chest compressions below 60 for his age). His oxygen and blood pressure looked okay so we quickly got him a CT scan and x-ray series. However, this is not the first time Kelptyn has had a brady. We knew what this meant. The ICP is back. Oh crap! What is Kelptyn trying to teach all of us this time? Maybe that we haven't fixed the problem entirely. Kelptyn is in the ICU currently. The doctors have brought him temporary relief once again with the magic of medicine. We've added 3%, HIGH dose steroids, and diuretics to his cocktail regimen. We have consulted with one of the neurosurgeons and his regular Hematologist/Oncologist. We are awaiting the return of the director of neurosurgery (he's out of the country until Sunday) to consult on his case. We understand at this point in time that there may be an experimental surgery that may or may not help. It's extremely risky. So we are waiting for now and trying to keep Kelptyn as comfortable and happy as possible. Thank you for your continued thoughts, love, and support. You lift us up each time our heart drops to the floor. THANK YOU. It's been a wonderful whirlwind of a week, full of so many heartwarming emotions. Kelptyn had 3 doctor appointments and he is recovering great. He now prefers to walk all over the house without holding our hands. It's like he has his own sonar system or something. We are starting to wean his steroid dose and he just started a new immunosuppressant to manage his GVHD of the skin. His skin is beginning to clear up. He is showing 54% Tcells and 0% Mcells, currently. However, we BELIEVE Kelptyn is holding on to what he needs to in order to make functioning osteoclasts.
We just received Kelptyn's donor contact information today. But on Wednesday morning, I received a surprise email from Kelptyn's bone marrow donor. This was a day I had wondered about for so long. Her name is KRISTIE! After sending her a response, we were able to talk on the phone and I've been overwhelmed with emotions ever since. As I read about her journey as a bone marrow donor and then after talking to her, some incredible emotions ran through me and continue to do so. Kristie is a wife and mother of 3 children. She is an AMAZING artist and she has a blog of the beautiful murals she paints. She lives a busy life and took the time to give completely of herself for Kelptyn. I was blown away by the generosity of her entire family. Grandma had to stay with the kids, while her husband took her to the hospital to donate, and she had so many people praying for Kelptyn at the exact same time we were praying for her. This was another reminder that life seems to be a perfect balance between science and prayer. On her blog, there is a small profile picture of her. I found myself looking through her blog, but I kept returning to this small picture of her face. All I kept thinking was this is the face of the woman, the Wonder Woman, who loved our son without knowing him. Then I felt a complete embrace of God's love and was reminded of the ultimate sacrifice of Jesus' blood. I thought of how heroic her donation was and how she walks in Christ's likeness. She gave her blood so our son could live. There is no greater gift. When I put Kelptyn to bed that night, I told him that those donor cells he has been internally fighting with have a name....her name is Kristie. I told him all I knew about her and I told him that he needs to be friends with her inside his body because she will help him grow strong. Some how in the calm of his day, right before bed, I think he understood what I was telling him. We look forward to our families parallel lives being intertwined and connected. We hope this is just the beginning of a lifelong friendship. Kelptyn's surgery went well. His recovery seems pretty typical so far (only a little bit of blood on our sleeves this time) and he has a great team of doctors taking care of him. One surgeon mentioned that Kelptyn may have been very irritated by the jackscrews more recently because he had developed a fluid filled cyst near them. We are glad they are out. A HUGE THANK YOU to the hospital medical director and the head of Pathology for hearing a bit of our son's story and allowing us to keep 1 out of 2 distractors and 1 out of 4 plates. We couldn't keep the screws because they were too sharp. Kelptyn's blood pressure has been doing okay with the increase steroid dose. He has hours when we are chasing his pain with pain meds and moments where he is a monkey jumping on the bed. The nurses are impressed by our walking 2 year old with eyes that are completely swollen shut. I guess what may be disabling to a sighted child is typical for Kelptyn who is guided by something far greater than eyesight. We are hopeful that he will be able to come home tomorrow. Thank you for your continued thoughts and prayers. Today's doctors' appointments went well. We send our thoughts and prayers tonight to our clinic neighbor who coded while we were there. We are ever so grateful to have Kelptyn happy and at our house with us. Today was another reminder of how hard these kids fight and that we are blessed every time we can leave the hospital with our son, no matter how many times we have to go there.
Kelptyn's blood counts continue to look "normal". No transfusions or infusions today. The nurse drew blood for another chimerism test. Kelptyn's hands and cheeks are still pretty pink. We are stopping 3 meds to see what happens with his skin, if anything. Two of the meds we are stopping he's been on for 15 months. With these new med changes he will now only be taking 7 meds in the morning, 1 in the afternoon, and 3 at night. Below are images from Monday's CT scan. This was Kelptyn's 18th CT scan and he was SO brave, no sedation as usual, just Dada by his side. He is still slated for the OR on Tuesday, April 9th at 1:40pm to have the braces, plates, & jackscrews removed. The doctors will also possibly do some reshaping of the bone (shaving down, filling in gaps with cadaver bone, etc). We have another pre-op appointment next week with Neurology....all I want to tell them is to please make sure the surgeons are careful with his shunt. We don't want another shunt revision a month after this surgery...PLEASE! On another note, we reminded the nurses to follow up on our bone marrow donor contact paperwork that we filled out back in December. We would love the opportunity to thank Kelptyn's Be The Match donor personally. We continue to think of her, the blood donors, doctors, nurses, and Kelptyn's army of angels every time Kelptyn learns a new trick that he just couldn't do before without everyone's help. He is an absolute joy to be around. Dear Family & Friends,
We are happy to share a BIG WOO HOO! It's official Kelptyn made it a whole 2 weeks without a single doctor's appointment! This hasn't happened for more than a year and a half. His blood work today, brought even more good news. He demonstrated a normal white blood, red blood, and hemoglobin count. This we have not previously seen stable for this long of a period. We were reminded that while his chimerism tests show us some things, they don't show us how many functioning osteoclasts he really has. There is currently no medical tests that can measure osteoclast function. So we are taking his great blood counts as a positive indicator that he is beginning to stabilize functioning osteoclasts, especially since this is the longest period of time he has gone without a blood transfusion. We are remaining hopeful that he can maintain enough osteoclast function so that he won't need more surgical procedures in the future. Kelptyn's next goal is to make it 2 1/2 weeks without a doctor's appointment. We continue to be optimistic. Kelptyn continues to sleep through the nights peacefully and is so joyful during the day. Thank you for all the love and support on this long journey. Much Love, Kelptyn's Proud Mama |
AuthorI am the mother of a child with a spirit that's larger than life. Each day I am reminded of what a gift the present is. Archives
July 2015
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