He is showing a bit more marrow activity today but still no ANC to report, he is sitting up more, beginning to sing again, and eating like a champ. Today he was very hungry for breakfast and just wanted to "snuggle with eggs and bacon". No more IV nutrition and after 4 weeks of explosive diarrhea, he has had 3 days in a row with just one poop per day. It should be interesting when we can finally put him back in underwear. He is just barely tolerating standing and shuffling his feet at this point, but we work on it every day. We are grateful for all this progress and we're looking forward to him getting well enough to eventually go home.
Kelptyn had a CT scan from his neck to his groin last Thursday which revealed a blood clot in his inner jugular (neck), hopefully the last of his major clotting issues. This is being treated with antibiotics and will be re-checked with an ultrasound in mid-August. Doctors think he might need the antibiotic 3 times a day for up to 4-6 weeks. They say we could potentially go home with his IV meds, if everything else looks good, we are still waiting for more blood activity to recover.
He is showing a bit more marrow activity today but still no ANC to report, he is sitting up more, beginning to sing again, and eating like a champ. Today he was very hungry for breakfast and just wanted to "snuggle with eggs and bacon". No more IV nutrition and after 4 weeks of explosive diarrhea, he has had 3 days in a row with just one poop per day. It should be interesting when we can finally put him back in underwear. He is just barely tolerating standing and shuffling his feet at this point, but we work on it every day. We are grateful for all this progress and we're looking forward to him getting well enough to eventually go home.
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The past 3 weeks have knocked the wind out of Kelptyn's sails multiple times. First, with an EBV confirmation of the mono virus that then seemingly turned into a ridiculously brutal blood war within him as he developed Post-transplant Auto-immune Hemolytic Anemia and needed daily blood transfusions. This lead to crazy blood clotting issues and two transfers to the ICU. He has had an external lung drain attached to him for the last week and has taken all these blows on with a silent suffering I cannot describe. He is smaller than most and has encountered more than most, but each time his spirit preservers through a humanistic hell that we all touch at some point in our lives. His body gets bent, twisted, poked, aches, oozes, bruises, and bleeds all the while his spirit gets a little higher. The silver lining today is that his mono virus has dropped off significantly (almost to a not detectable level in the blood anymore), Kelptyn has not needed any blood transfusions for 6 days, the sores in Kelptyn's mouth look a little bit better, and today he will finally get the lung drain pulled out. We are hopeful that the week that lies ahead will continue in a forward momentum as the chemo treatment continues to calm his battlefield. Kelptyn went in to the cath lab yesterday morning when his clotting and swelling escalated again. The cardiologist was able to place a stent and skillfully save his port line. Good thing too because after his procedure they tried 3 times to get an additional IV on him and failed. So Kelptyn is getting all his blood and meds in his port and one very finicking PIV on his left wrist. They also attached an external drain to drain the fluid built up in his lungs.
Today Kelptyn is happy to have gotten off the ventilator and the first words out of his mouth were "Las Olas" as he was requesting his favorite cup from his favorite restaurant. He is still pretty grumpy since we cannot pick him up to "snuggle dance" because he still has his lung drain attached to him. Hopefully he'll get his drain off tomorrow or the next day. Tomorrow, Kelptyn will start some chemotherapy (since he is not responding to the steroid regimen) to hopefully knock down some lymphocytes which create the antibodies in his blood that are the most probable cause of all his clotting issues and his poor white & red blood cell production. His doctor sent more antibody tests out to the San Diego Blood Bank today to see if they can more accurately identify the specific antibody in his blood. We are hopeful that with this confirmed information we have a plan to help him over the next several weeks with the weekly chemo treatments. Well, after my last post it was confirmed that Kelptyn does have the mono virus, however, we are still uncertain about a couple of things his blood is showing us in the daily labs. It might take a few days before it because clear what his bone marrow is or is not doing.
After Kelptyn's port was surgically placed in his heart on Monday. We discovered a problem 3 hours into a blood transfusion on Tuesday which made his body turn purple-blue and swell from the chest up. Kelptyn was transferred to the ICU that night and further tests the next day demonstrated obstructed blood flow in the heart. On Thursday, he went to the Cath Lab where the amazing cardiologist removed several clots, ballooned open his vessels, and also removed 200 mls of fluid from his lung cavity. As a result of Kelptyn's clotting issue, he will need to have two shots a day, every day as long as he has the port in his heart. Today, Kelptyn is back on the hema/onc floor and it will take time to get the whole picture of what Kelptyn's blood is doing. We have no idea how long he will need the port, but we are grateful that it is working because he is bruised all over from the multiple attempts to get blood and/or gain IV access to his delicate body. For now, Kelptyn is very tired, lays around all day, does not want to play with his toys, and does not want to eat. We are hopeful things will improve with time. |
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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