Happy 4th of July everyone! Well, it's now the 5th of July, but you get the message! Daylon condition right now, from a medical stand point is great. Dr. Tolar just did rounds and said Daylon is doing "shockingly well". His cell count is 3.0 (or 3,000) and his Absolute Neutrophil (infection fighting cells) count is 2.0 (or 2,000)!! This is so great! It's normally that high several weeks in! I really think that it's Caleb's cells getting to work! We jokingly call Caleb an X-man because he has super healing strength. He heals quicker than any human I have ever seen. This is especially good for Caleb since he's quite the dare devil and tends to get injured fairly often. We've been hoping that somehow it can pass to Daylon through the bone marrow! It's just wishful thinking, more of a joke really, but who knows! Daylon's weight was up again yesterday, but then down again today by a tenth a kg. His Creatinine levels are rising more and more each day showing that his kidneys are not handling the extra fluid and meds well. It's kind of a catch 22 because the med that is harming his kidneys the most is the Bumex (the diuretic). Once again, we're trying to find the balance. This morning Dr. Tolar told us that he will more than likely need dialysis in the near future, but it won't be today. I guess we'll be grateful that he's good enough today. He's had several platelet and blood transfusions and his counts still linger on the border, but at least it is taking. The doctors have told us that transfusions can happen daily for months after transplant. Thankfully, it's not that bad. We've had a hard time over the past 24 hours trying to keep him sedated...again. His body metabolizes medicine so quickly. At the moment, he's resting peacefully.
Yesterday the respiratory therapists came in to change his head gear for the breathing tube. It was less than a pleasant experience. I stood at the bedside (which they weren't thrilled with) and made sure the bandages were placed properly to protect his skin. When it was all removed we could see that his mouth was filled with secretions and they decided to suction him. They didn't like the silicone suction that we've been using (it has a weak suction) and replaced it with a larger, single holed plastic suction. I reminded them that he has EB and their response was "we know". I reminded them that his tongue and mouth blister easily and the tube can't move and again they said, "we know". Yep they know. That's why the suctioned his mouth and tongue until they realized it was sucking little perfect circles of skin off. He was unnecessarily bleeding and I was mad. They wiggled his tube around and eventually taped it at the measurement it's supposed to be, but in the process, they hurt him. I watched his pulse climb and climb and all though he lay there eyes closed and silent, his eyes began to water. Tears streamed so quickly down his face. It broke my heart. I brought it to the nurses attention and she gave him a bolus (shot) of Morphine. It reminded me of an article I read on lethal injection. Apparently, it's a painful process but they first give the prisoner medicine to paralyze and silence them. They are unable to cry out, so for the onlooker, things aren't too bad. Now, I don't really care about lethal injection because they're serial killers and rapist, but this is my Innocent baby. Lines were crossed and I'm officially in battle mode. I talked to Dr. Tolar this morning after rounds and he's joined our force. He's having another seminar about EB for the R.T. since they're obviously not where they should be with the EB kids. Oh, and ps- his breathing was HORRIBLE after they left from wiggling the breathing tube!
Okay, ending my rant now.
The fourth of July was kind of unusual, but fun for us. My parents surprised us with a visit! They flew in on Friday and will leave Tues. I've wanted to post a picture of the two of them, but they've been less than co-operative. Anyway, Brian and I went on a date Sat. night which was soooo nice. It's a very crucial thing in maintaining sanity...or at least when you have 5 kids. Anyway, yesterday my mom let Brian and I pick anything we wanted for dinner and we picked Albondigas. She makes the best Albondigas hands down. It wasn't your typical dinner for the 4th, but we loved it. Afterwards, my parents went up to the hospital and sat with Daylon so Brian and I could be together with the kids and watch the fireworks. We decided to watch them from the 8th floor of the hospital. Right as we were crossing the street in front of the hospital Ang and Ali (Bella's mom and sister) were leaving the hospital. Keira and Ali tackled each other in the biggest hug! Our kids were so excited to see Ali! I'm so glad that we're up here with the Ringgolds. Ali is right in between Keira and Caleb in age and she's the kind of kid that I don't have to worry about. I know she won't be teaching them how to freak or be oogling over the Jonas Brothers. My kids are the Strawberry shortcake, Mickey Mouse Clubhouse watching, sleeping with a stuffed animal kind of kids. I like it that way. Our lives are kind of parallel with the Ringgolds. We live in CA 20 minutes apart, share the same specialists (both here and in CA), the same hospital (CHOC), the hospital's EB nurse, Tanya, and now we're going through the transplant together. Daylon and Bella are 6 weeks apart in age (Bella's older) and 8 days apart in transplant age (Daylon Day+11 and Bella's Day +3). Yesterday, Bella's mucositis caught up with her and she was placed on a breathing tube and sent down to the PICU just 2 door down from Daylon. We're back together again! You can find Bella's story at http://www.careforanabella.com/
Back to the 4th of July: We watched the fireworks with Ang and Ali and the kids had a blast. Then we went to the PICU and Keira and Caleb were able to see Daylon for the first time. It was a good experience for them. They want to know why we need to spend so much time up at the hospital and I think things got a bit clearer for them.
Next, we all headed back to the RMH for s'mores and bedtime. Brian and I were able to go back up to the hospital and spend time with Daylon after the kids were asleep.
...Ok. So, the Fellow just left and she said that Daylon's liver ultrasound came back positive for V.O.D. or Vascular Occlusive Disease. It's a side effect of transplant. The vains in the liver become too small for blood to pass through and it gets blocked up. It can be fatal but they feel like they caught it in time. A different doc. will be coming up to explain to us about some new drug they have to treat it. I guess it's passed the giving it to mouse stage, but it's still semi-experimental. It's the only option, but it's had good results so far. Uhhhh. Please continue to pray for Daylon. Pray that his cells continue to come in strong, that his liver will heal and the medicine will work, and that his kidneys will recover quickly. It's a lot to pray for, I know, but thank you.
Hope everyone's holiday was a happy one!