Thursday, May 7, 2015
ER Update
ER update: pretty much a routine ER visit if anyone has brought in a
baby with a fever. Blood culture, IV fluids, and antibiotics. We will
know his CBC culture and electrolyte count in the next hour or so, any
other cultures run for infections take 24 hours for results. William is
comfortable, getting his 9:00 feeding and falling asleep. Oh and his
fever is lower already, before antibiotics, go figure.
Just another day. Because he still has his central lines, he does not
need to be stuck with an IV, all blood draws and fluids go through the
lines
Day 102 - ER Visit :(
Post transplant day 102: our first ER visit post transplant.
William was running a temperature and his doctors wanted us to come to
the ER to get checked. He seems otherwise OK, just sleepy. His doctor
called ahead and we got in a room right away due to just recently having
a transplant and still having a central line. We are waiting for his
doctor to come take a peek at him. Chances are they will be giving him
prophylactic antibiotics. Poor baby. Say a little prayer please.
Post Transplant Day 97
Post-transplant day 97. We are really getting excited to head West.
There is talk about having his central line removed the week of May 11,
he has already started his day 100 blood testing and are now only being
seen once a week as outpatient. He is getting all of his nutrition
through his g-tube, although he takes some food by mouth (sweet potatoes
remains a favorite.) He spends a good amount of time playing in his
stander and going on walks with Papa and Gogo in his KidKart. Saturday is a big day for us here: it's Papa Ron's birthday AND William's 100th day post-transplant!
Papa Ron and Gogo Marcia will be taking off soon and coming back closer to departure date which is still 4th week of May, to help us move back.
Thank you for all of your support, as always. I'm so excited to start our new life. I hadn't even finished unpacking from the move to Utah!
Xo, The Branches
Thank you for all of your support, as always. I'm so excited to start our new life. I hadn't even finished unpacking from the move to Utah!
Xo, The Branches
Saturday, April 25, 2015
Post transplant day 93
Past due update on William:
We are currently on post transplant day 93. William's platelets are considered "normal" now, along with his red blood count. His white blood cell count went down for a day last week, so they ran blood cultures for viruses; he wasn't otherwise showing any signs of illness. When they drew blood again on Friday, his white blood cell count was again normal. His virus panel came back negative, as well. The doctors figure he had a virus that they didn't test for and it ran its course without problems. It stinks he maybe had a virus, but awesome knowing he can fight them off on his own! Otherwise, things have been going pretty well. William is up to a hefty 9 kg now (almost 20 lbs); he came here at a tiny 14 lbs. His weight has to be closely monitored due to his disease - they want him around the 10th percentile, but have you seen my husband or me?! Its not that easy! Robert is still flying back and forth from Salt Lake City and Pittsburgh for work. My mom Marcia and Dad Ron have been here for the past week and have been a tremendous help, as always.
We are still going to outpatient visits twice weekly to test his blood and monitor is weight. Our next appointment is Tuesday, along with an ECHO test. That test is just part of the Day-100 testing that will be completed.
Initially, I was under the assumption that if all was going well, meaning William was healing and didn't show any signs of donor cell rejection (graft-versus-host-disease), that we would be heading home soon after post transplant day 100. Unfortunately, I wasn't correct - I was really hoping though! William is on certain medications that need to be safely weaned before we can leave. They also want to make sure he is completely well before we leave, also taking into consideration, in Utah, we live 3 1/2 hours from the nearest major hospital. So, the doctors are saying the end of May is looking good for dismissal. Sigh...its been 4 months and we are ready to go home! But also relieves some anxiety that they will only dismiss us if they are completely certain he is ready.
William is still getting used to his stander. I don't think he is uncomfortable in it, I just think it takes some getting used to. The Ronald McDonald House apartment has a full-length mirror - he loves looking at himself when hes in the stander! He also uses his KidKart for transport now instead of a traditional stroller. I really miss that jogging stroller, but the KidKart is good for positioning and alignment.
I think that's about it for now! Children's Hospital of Pittsburgh is being very good to us and we are excited to get home. Our one-bedroom apartment is getting a bit cramped (its amazing how much space one little baby can take!)
Thank you for your support. It means the world to us. I honestly don't know what I'd do without it. Its definitely carried me through some hard times here in Pittsburgh! So glad we are on the other side of the transplant. I can finally breathe...
Much love, The Branches
We are currently on post transplant day 93. William's platelets are considered "normal" now, along with his red blood count. His white blood cell count went down for a day last week, so they ran blood cultures for viruses; he wasn't otherwise showing any signs of illness. When they drew blood again on Friday, his white blood cell count was again normal. His virus panel came back negative, as well. The doctors figure he had a virus that they didn't test for and it ran its course without problems. It stinks he maybe had a virus, but awesome knowing he can fight them off on his own! Otherwise, things have been going pretty well. William is up to a hefty 9 kg now (almost 20 lbs); he came here at a tiny 14 lbs. His weight has to be closely monitored due to his disease - they want him around the 10th percentile, but have you seen my husband or me?! Its not that easy! Robert is still flying back and forth from Salt Lake City and Pittsburgh for work. My mom Marcia and Dad Ron have been here for the past week and have been a tremendous help, as always.
We are still going to outpatient visits twice weekly to test his blood and monitor is weight. Our next appointment is Tuesday, along with an ECHO test. That test is just part of the Day-100 testing that will be completed.
Initially, I was under the assumption that if all was going well, meaning William was healing and didn't show any signs of donor cell rejection (graft-versus-host-disease), that we would be heading home soon after post transplant day 100. Unfortunately, I wasn't correct - I was really hoping though! William is on certain medications that need to be safely weaned before we can leave. They also want to make sure he is completely well before we leave, also taking into consideration, in Utah, we live 3 1/2 hours from the nearest major hospital. So, the doctors are saying the end of May is looking good for dismissal. Sigh...its been 4 months and we are ready to go home! But also relieves some anxiety that they will only dismiss us if they are completely certain he is ready.
William is still getting used to his stander. I don't think he is uncomfortable in it, I just think it takes some getting used to. The Ronald McDonald House apartment has a full-length mirror - he loves looking at himself when hes in the stander! He also uses his KidKart for transport now instead of a traditional stroller. I really miss that jogging stroller, but the KidKart is good for positioning and alignment.
I think that's about it for now! Children's Hospital of Pittsburgh is being very good to us and we are excited to get home. Our one-bedroom apartment is getting a bit cramped (its amazing how much space one little baby can take!)
Thank you for your support. It means the world to us. I honestly don't know what I'd do without it. Its definitely carried me through some hard times here in Pittsburgh! So glad we are on the other side of the transplant. I can finally breathe...
Much love, The Branches
Thursday, April 16, 2015
3 month follow up with Dr. E
Day 84. Three month post transplant appointment with Dr. Escolar today. All noninvasive tests such as hearing, vision, physical therapy, occupational therapy and speech. Possibly a CT scan. We can compare those results to his initial tests he had in November. I can't believe we've been here since January 2! More to follow.
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