Well, one more week till we head home!
One more week till the infamous DAY +100... that's the pot at the end of the rainbow, or so we thought, where everything would be just magically better! LOL. Wow. After being in the hospital for 100+ days now (we were admitted on June 22) and watching many kids come and go through here with not only EB, but ALD as well, the 100 day mark is just a line in the sand. It isn't the end of anything. This rant may have a negative tinge to it, but any family who has been through BMT knows EXACTLY what I mean. Any family considering BMT needs to know that Day +100 isn't any more final than any other day. It's just a marker to measure progress, but it is by no means the finish line. This is the part they really don't hammer home for you as you go through work-up. I'm sure they'll tell you they do, but what you hear when they go over everything is, "God willing, my child won't have any of those problems." At least that is your hope and your prayer. No one plans for complications, but I think in fairness, maybe you should. All I know is that we're not going anywhere for quite a long time. Other kids do the BMT shuffle... they get discharged, then they spike a fever, head to the emergency room, and earn a 1-3 night stay back on 5D, then they go home, and some time later, they spike a fever, and they earn themselves another hall pass. It goes on and on.
Now, to be fair, this is not the case for many kids. They tip-toe through the mine fields of BMT somehow and slip through and out the door the other side better for it. However, this is not an overwhelming majority. It is a majority, but probably only 6 out of 10, as one doc told me. The other 4? The BMT shuffle, or the ICU shuffle, or worse. This is the reality of BMT. Don't let anyone fool you into thinking otherwise.
You might be saying, "Wow, Tim, what side of the bed did you get out of today? This doesn't sound like you." That may be true. I mostly try to present the positive in every situation. Today, I just feel like telling it like it is, and letting you decide how you'll handle it.
What set this rant off? Nothing, really. We had a wonderful day, and Bella won her game, this time, the score was 4-1. (The Arsenal score was 0-2 to Chelsea today unfortunately. GREAT game, though)
Points for Bella:
They wanted to get 60 mL off her by the end of the day, and looks like we'll hit that.
We weaned her methadone today, and she has tolerated the wean schedule quite well over the past 72 hours, with little to no tremors and hardly any PRN doses of sedation.
They turned down her PEEP on her ventilator to 5. This is the lowest support setting they go to before extubation. The next step for Bella will be a "Trach Dome" which warms and humidifies the air going into her lungs for her since her mouth and nostrils have been bypassed. The key difference here is that she will be doing ALL the work, no more gentle help from the vent. This should be fine because...
Bella's three pressure support trials a day are now 2 hours each. So, she is already breathing 25 % of the time on her own and she is doing great at it. I think it's a little tiring for her, but not too much that she can't handle. It is actually helping with the sedation wean, because she is now a little pooped out from all this work, and it's enough so she doesn't waste any energy with the shakes.
They had to go up to .0007 on the vasopressin from .0006, and that again is just to maintain the minimum acceptable mean pressure of 45-55. Seems like those 100 over 70s days are gone for now. In reality, this is a better spot for her heart to pump at, so it's all good.
Ah, the ebb and flow that is Bella. Again, it is important to take the win even if we were scored against. We are still ahead of the game. Today, when I sat Bella up to change the dressing on her ulcer, she was alert, eyes open a little, and very calm. The respiratory therapist and nurse helping out just talked to her while I worked on the wound, which really is looking a lot better. The nurse was amazed how strong Bella is physically still, given how long she has laid on her back. I agree. Today, I tried straightening her right arm to clean it and she didn't feel like that would be fun. I had to really exert way more force than I imagined necessary to 'urge' the arm to straighten. That girl has some GUNS still! I am so proud of our little OX!
This afternoon, we took a nice drive out to an absolutely LOVELY town along the St. Croix river called Stillwater. Holy cow, it's right out of a movie it is so quaint. Then, we drove over to our friends' home, the Moorelands. Lonni Mooreland founded PUCK, a charity dedicated to assisting the research going on at the U for ALD, FA, and EB. Their daughter Sarah passed away on the day of transplant in June of 2008. PUCK was the first partner organization that we donated proceeds from Bella's Blessings: a Humble Story of Providence to.
We had the most wonderful time playing in the leaves in the front lawn that Jay was raking when we got there. Let's face it, I was jumping up in down in my seat as we pulled up, because I was going to introduce Ali to jumping in piles of leaves, a pastime from my childhood! We had so much fun. I will definitely be sore for a couple of days! A nice neighbor couple, Liz and John, came over also and brought their kids, Kate, Weit, and Blake, as well as their dog, Hershey. We all had lots of fun! Thanks again, Lonni and Jay!
Thank you to all who have taken the time to come out of the darkness and share about your selves and your families. I feel like we're getting to know each other better! Even Bella's nurse, Lori, recognizes the names and comments from some of you! We are a community, and as we learn more about each other, and as we are known, our bond strengthens. As our bond strengthens, our ability to make manifest our prayers, wishes, intentions, and thoughts strengthens. Up until now, there has been a hub (us) and spokes (you). Now, we are indeed creating a web. A web that not only emanates in and out from the center, but also around (the country) and around (the globe). What an exciting thing to be a part of! Thank you for being a part of Bella's web. Thank you for being a part of Team Bella.
P.S. Please go visit and say a prayer for Baby Elle. She is in Daylon's old room in the ICU two doors down from us and having an increasingly rough time of it. She is a doll, as is her family. Please go send them some love and support. Thanks.
Ali and Bella's ANGEL of a nurse, Lori...
One day, Bella WILL look back and say, "Yeah, I was born with this rare condition, but when they brought me home from the hospital, it went away."
Ever wonder how to balance your yogurt cup on your spoon? Consult the great Ali...