The highlights of Kelptyn Jack's day: getting my IVs off and singing pirate music with Daddy in a boat.
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So after a rough night with discomfort, Kelptyn was NPO again today from 6:30-4:20 because he had a PICC line put in. Thank the Lord he got a PICC line! This way the nurses can draw the daily blood labs without poking his tender body multiple times and digging around for his veins (most of which have been used/blown). I think I'm still suffering from Post Tramatic Stress Nightmares related to his multiple pokes while he's screaming. Seriously, an awful experience. However, we're moving on. I told Matthew, my husband, that we've done walks for breast cancer, autism, triathlons for ovarian cancer, and bike rides for MS....but that today I had to walk for Osteopetrosis....I walked out of my baby's intensive care room, I took a shower/nap, and I walked back. Sometimes I just have to make myself walk.
The good news is his pain seems to be under control for now and he is sleeping peacefully. We received the genetic test results back today from the lab in Pennslyvania and they confirmed the diagnosis. Again, we weren't surprised. They have also mapped his HLA (bone marrow) type, so now we can move forward with the priliminary search to find a donor match. The best part of today was when Kelptyn was able to open his eyes a bit...I think this made him less scared. His swelling is starting to go down. :) Thank you to everyone for the continued prayers and support. It seems like our rock bottom keeps slipping out from under us. It's two steps forward, one step back. Kelptyn's surgery went well yesterday, doctors say he should be pretty swollen/ eyes shut for a couple days and we won't know his visual potential for several months. Doctors did say that he won't be able to smell because of how all the bone crowded around his nerves. We are working with a team of doctors and nurses to manage all his different layers of care and his pain. We were blessed with some amazing nurses last night, Janet and Deb, who have treated him with loving care. We can't thank them enough. It seems like just when you think your heart can't break into any smaller pieces someone helps pick up a piece for you and that's what the nurses did for us last night/this morning.
Below are two photos of our Happy Star and Fighter, pre-and-post surgery. Well, Kelptyn's CT scan showed what we expected, based on his diagnosis, his skull is growing rapidly and putting pressure on his vision and hearing nerves. The neuro-surgeons want to operate on Monday to relieve pressure on his optic nerve and preserve what vision he does have. The hearing will have to wait until later because both procedues would be too much for him to recover from right now. The crazy part is that if he did not have hydrocephalus and a shunt put in weeks ago...his skull would have more than likely fused together too quickly and would have put pressure on the brain earlier on. Whoa! He is one complicated little boy. We are hoping for the best procedure/recovery and praying that this will help Kelptyn keep what vision he does have. It sounds like he might look pretty beat up after the surgery and more than likely won't be able to open his eyes due to swelling for a little while. It's crazy to think about how many things our happy star is teaching his doctors and us. Please send us good thoughts and prayers on Monday afternoon.
So we have all kinds of doctors working on Kelptyn's team expect for two specialities: Renal & Infectious Diseases. It's crazy to think of how many Big people are fighting for our little star. It's even more strange when you walk to different areas of the hospital and know more & more of the doctors/staff. Then I think about all of the people outside these walls that are praying for us and I am renewed and strengthen by a presence beyond me.
Today Kelptyn was NPO from 12-12:00, he enjoyed songs with his Daddy and then guitar music from a kind man named Carl. It's hard to watch your baby lose his vision slowly, but it's a blessing that today he could enjoy music and dancing. We'll see more specialists tomorrow (Neuro-opthamologist, BMT doctor). Hopefully, we'll find out the results of today's CT scan too. Today Kelptyn was NPO (nothing by mouth from 9-3:00) because he had to have a hearing test. The blessing for the day is that he passed the hearing test and all hearing functions appear to be within normal limits for now. We have about a team of 20 doctors collaborating on his care and tomorrow he will be NPO starting at midnight so that he can have a high resolution CT scan tomorrow. The neuro-surgeons want to check the hearing and vision pathways to make sure there are no skull obstructions. Tomorrow we will more than likely meet with the BMT doctor who has been collaborating with doctors back east on a treatment plan for Kelptyn. This is all so surreal.
Kelptyn has been admitted to Rady Children's Hospital in San Diego for the 5th time in 7.5 months. He has rebounded, from two brain surgeries just about 6 weeks ago, with a laugh or a smile. It's taken many doctors and several weeks to discover the underlying cause, Osteopetrosis. This is an extremely rare recessive genetic disease that affects 1 in 200,000-500,000 births. There are about 20 cases discovered across the U.S. each year. The only cure for the disease is a bone marrow transplant. Kelptyn's labs will be drawn tomorrow and it should take about 10 days to find out his bone marrow/blood map. Then we will move forward to find the best match for him. We are fighting for his vision, his hearing, his everything, and above all his life! Time is looking like our worst enemy right now. This disease can be very progressive in infants and even with a BMT we have about a 50/50 chance (doctor's say). Kelptyn's Grandma says "well then it looks like it will take 50% science and 50% prayer". Our Happy Star is starting his voyage into a perfect storm, but he is the son of a sailor.
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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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