So Kelptyn woke up this morning and had himself a good poop (this was considered the treat for the day), then after breakfast this morning he violently threw up. Mommy had to change her clothes three times and Daddy came home from work to go to the hospital clinic with us. Kelptyn attended his morning clinic appointment with blood labs and as it turned out he needed another tranfusion. That's happening now...transfusions take about 4 hours to complete on a tike as small as him. In the mean time our Hematology doctor paged our Neurology doctors (who Mom spoke to just last Friday about KJ's shunt and CT scans) since Kelptyn threw up so much this morning (a sign of shunt malfunction). So now we will be admitted back in to the hospital again as soon as his transfusion is complete so that they can check his shunt again with a CT scan and if necessary he might be going to surgery again tomorrow for a shunt revision. So it looks like the trick is definitely on us and maybe just maybe we'll be spending all the holidays in the hospital this year. BOO! Seriously, BOO!
Definitely, a TRICK!!!
So Kelptyn woke up this morning and had himself a good poop (this was considered the treat for the day), then after breakfast this morning he violently threw up. Mommy had to change her clothes three times and Daddy came home from work to go to the hospital clinic with us. Kelptyn attended his morning clinic appointment with blood labs and as it turned out he needed another tranfusion. That's happening now...transfusions take about 4 hours to complete on a tike as small as him. In the mean time our Hematology doctor paged our Neurology doctors (who Mom spoke to just last Friday about KJ's shunt and CT scans) since Kelptyn threw up so much this morning (a sign of shunt malfunction). So now we will be admitted back in to the hospital again as soon as his transfusion is complete so that they can check his shunt again with a CT scan and if necessary he might be going to surgery again tomorrow for a shunt revision. So it looks like the trick is definitely on us and maybe just maybe we'll be spending all the holidays in the hospital this year. BOO! Seriously, BOO!
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When babies are first born I believe they have a sixth sense about them, though their vision isn't completely clear yet they seem to look at us and all around us. I call it angel vision. When Kelptyn was first born, I would ask him if he was looking at the angels...since he was still so fresh from heaven. As he grew those first few months he began to look out windows, stare at ceiling fans, mirrors, and our faces just before he started to look at angels again.
Today we learned that the damage to Kelptyn's optic nerve is pretty severe since he first had compression from Hydrocephalus and then pinching of his nerves because of skull growth linked to Osteopetrosis. His doctor thinks he can see light. Perhaps one day with medical advances he will be able to see more with the help of stem cells, but for now he is closer to heaven then we've ever known as he continues to look at angels and laugh with us. Our Happy Star is taking us on a road less travelled and what lies ahead is nothing short of an adventure. Thank you to all our family and friends that continue to be by our sides on this wild ride. Well, turns out Matthew and I are both 5 out of 10 matches for our son...well duh...but we had to check anyways. We are waiting on infectious disease testing on one potential adult donor (9 out of 10 match) and for a back up adult donor and/or cord blood donor testing. Yes, we have to have 2 donors (one for backup) just in case anything happens to one of them. We don't want to start Kelptyn on Chemotherapy and not have a back up! So we continue to wait...
On another note, Kelptyn had a sleep study performed this week and as you can see in the picture below there were a lot of wires all over him. I don't know how anyone actually sleeps during a sleep study. I didn't get much sleep that night, but it was definitely interesting breast feeding Kelptyn with all that crap on him. We won't know the results of the sleep study for a little while they said. I figure "no news is good news". A bit has happened since they sent us home a week ago. Kelptyn's arm has healed enough to get his splint/sling off, which he is so happy about, and he had the staple in his head removed today without tears. His stitches should dissolve over the next couple weeks and his purple butterfly eyes are fading back to snow white again. He is healing well on the outside. He is pretty happy by day, but does not sleep well at night. He wakes up fighting mad every hour throughout the night. Tylenol helps sometimes, but we have a sleep study scheduled for next week.
Today, Matthew and I went in to get our blood work done to see if by strange chance we would be a HLA match for our son. The good news is that the bone marrow registry was able to find 4 adult unrelated 9 out of 10 matches. They are requesting confirmatory testing on all 4 since 2 out of the 4 live in Germany, 1 is in Poland, and 1 is in the United States. We are hoping for the best! They also requested confirmitory testing on the cord blood matches (some are in France). The doctors said Kelptyn was stable and could go home today. It's strange to take your baby home from the hospital and know that he is not cured. It's also strange to know you'll be going back to the hospital soon. We don't know when we will be going back to the hospital yet (maybe as early as the beginning of November). It depends on the HLA (bone marrow) match results which we should have sometime next week. It turns out that the priliminary results weren't the best and that Kelptyn has a very unique map (even for a white boy). We're hoping to get an unrelated adult donor, but cord blood might be our best option. We'll find out next week. In the mean time, we have several weekly follow up appointments and nurses that will be coming to our home to take care of KJ's PICC line & take labs. On the days that we don't have medical appointments you best believe we will be filling them with fun times for our Happy Star. Kelptyn continues to amaze us and somehow I think he is guiding us more than we know.
Thank you everyone for your continued prayers, messages, love, and support. We could not do this without all of you. Much Love, Sarah, Matthew, & Kelptyn |
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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