August 26: Day +55

Wow. You are all amazing. Thank you so much to all of you that took time out to post a comment, no matter what you said, and no matter how long it was. Today was dreamlike reading your words. To hear what you've been feeling and praying for on our behalf... without those comments, we don't get to see just how many people are thinking about Bella, and praying for her daily. It was no coincidence I was able to handle the day at hand with such happiness.

The day started out with Angelique calling in sick with a cold. It came on outta the blue yesterday evening, and she spent the entire day today in bed. So, after a half hour in rounds this morning (seriously) to bring the new attending BMT doc on board and wrestle with the many issues on hand, I was off to the pharmacy to get cold medicine for my sweet wife.

After dropping that off back at RMH, I got back to the hospital and we did a dressing change since we were changing the dialysis circuit today. We had a wound care nurse come to look at the back of Bella's head. Not good news. Bella has developed a decubitus ulcer, or a bedsore. This is the most common hospital-acquired injury out there and is taken very seriously. Reports had to be filed, pictures taken, the whole bit. Long story short, back in July, RT gave her a harness for her breathing tube that was neoprene with a hole in the back. It was a chin strap that was turned around backward so the hole was behind her head. Even despite copious amounts of protective dressings, when she got really fluid overloaded in July (the first time), her head swelled through the hole in the strap and the skin broke down. Then, due to her prisma line being soooo tenuous that a diaper change caused problems, we were unable to really get at the wound very well except for quickly while we had 3 people roll her over. Well, given where the ulcer is, it was really hard to see clearly. Today, we rolled Bella over in the opposite direction while she was off her circuit and we finally got to see the true nature of the wound.

Now, I'm going to say what I'm going to say, and please don't rush to my aid with your comments to make it better. As the person in charge of her skin care, I felt like such a failure when I saw the extent of this injury today. How did I let this wound get so bad? Again, just let me hang out with that... it's okay. I know what the circumstances were, and while they were simply beyond my control for the cause, I'm just amazed the wound lay undetected for so long. I understand why... we simply couldn't see it, given her lines and prisma, but at the end of the day, it was and still is my responsibility to care for her skin. Everyone on the treatment team knows this and defers to me on her skin care.

Anyhow, having said all that, the wound care nurse was extremely complimentary on the job I was doing, and liked the way I had been treating the wound up to this point. The only thing we are going to do differently is roll her over every day and dress the wound with a fresh dressing. Up till now, we only changed the dressing once every 4 days when we'd change prisma. Well, it'll take 3 people a day now to do it, but we have to treat this very seriously as it is a 2 cm long hole in her head that gets no daylight, lots of body heat, and moisture from sweat... see where I'm going with this? Major priority now.

In other news with Bella, we dropped her precedex to next to nothing today. This is one of the sedation drugs that has been masking how Bella is really doing. Bella is clearly going through withdrawals; she is shaking like a leaf on a tree. She is swollen to the point where I don't even recognize my little girl any more. I won't show pictures today because honestly they are extremely upsetting. However, her blood pressure hasn't looked as good as it does today in a LONG time, so we are all very, very happy about that. It seems we found the right amount of vasopressin to support her blood pressure. We are starting her on methadone to help her with her withdrawals, and we are going to wean her as fast as she'll let us off as much as she'll let us to try to find the kid who came in here two months ago with a swollen airway.

Just before going back on prisma, we got the call that the docs all wanted to get a CT scan of Bella's head, chest, and abdomen in an effort again to see if they can spot any infections anywhere in her body that they've missed so far. She had a fever last night for the first time since chemo, so there is a concern that there is an 'occult infection' sneaking around in there that is not showing up on cultures, but continuing to be responsible for the soft blood pressures. So, we headed to CT today around 2 and did our thing. Never a dull moment.

Once back up on prisma, it was time to get back to RMH. I had to go to the store to get fruit for a school party for Ali tomorrow, then pick her up from school and meet momma back in our room at RMH. We hit dinner and bingo, and came back up for playtime at RMH.

There are so many issues on the table that are going to take a whole lotta time to undo. That's okay. I got nothing BUT time. Right now, there is nothing I want to do more with my life than completely rehabilitate my little girl. I watched parents drop their kids off at U of M today. I love this time of year. It holds such promise, such possibility. As I walked past the dorm, the hospital loomed overhead. I looked up toward Bella and promised her I'd drop her off at college one day. I don't care what it takes from me to make that vision a reality. There is nothing in my life that is worth more than dedicating my life to this little girl. I used to have dreams of financial wealth and abundance. Now, I dream of Bella. I know that God will continue to provide my family the means to allow me to dedicate all my time if necessary to being full time dad/physical therapist/occupational therapist/music therapist/wound care specialist... caregiver, whatever it takes. Now, if I could just sell a few more books... :P

So, all in all, there is still a very positive feeling in the air about "solving Bella." One thing that is happening is A LOT of communication and brainstorming, and that is a good thing. One new thing that is on the table is that Bella may need a tracheotomy. The breathing tube is beginning to cause more problems than solving, and so Dr. Tolar is spending a week talking to EB experts in Colorado and Cincinnati to discuss the possibility. It is completely reversible and is done for ICU patients when they know they will be intubated for more than a month normally. The problem in this case (why they haven't done it sooner) is that with a BMT patient, you have to wait until they are fully engrafted, and even then, they usually don't feel comfortable doing this procedure before day +90.

Remember last week, when we had to picture open heart surgery as an option for her outflow obstruction that magically disappeared? This is the nature of being in the ICU. This week's nightmare? Tracheotomy. Not that there's anything wrong with putting one in. We did the G/J tube fully expecting at some point to go back to a G, and eventually get rid of that. It's just that it is a rather invasive procedure that we never in a million years thought we'd have to wrestle with as RDEB parents. Our JEB parents in the EB community have to wrestle with this choice more than we do since JEB involves the lungs and RDEB doesn't. With RDEB, the debate is usually over G tube or not. So, we're now getting to bounce this one around as well.

Honestly, it's just another conversation. I am hoping Bella rallies so we don't have to go down that road in reality. We're getting used to going down scary roads in conversation. We've had to do that since the day she was born. Yes, it is stressful and scary, but it is also just the nature of the beast. We can't "wish" we didn't have to think about such things. EB requires us to deal with things as they are, not as we wish they would be. It's a powerful metaphor for life in general. Life is much easier to navigate through when you are relating to what is instead of what you WISH would be, or better, what you think SHOULD be. That's pretty useless. It's easy to do, don't get me wrong; I'm first in line for the award for having a 'flair for the dramatic.' That is why I am so blessed to be married to one of the most grounded people I've ever met. Angelique has taught me the simple (but not easy) practicality of dealing with the matter at hand, not the matter in my head.

Alright, I've gone on for long enough here. Thanks for indulging me. What I am reminded of each day here is that we are far from alone. There are parents fighting for their kid's lives every day in every children's hospitals in everywhere day after day after day, and some win, and some lose. I eat dinner among heroes every night of the week at RMH. When you hear the struggles another family is facing, it puts it all into perspective, and above all, despite it all, it reminds me of HOW ABSOLUTELY BLESSED I AM, AND HOW BLESSED MY WHOLE FAMILY IS. I give thanks every day for exactly how it is, right here right now.

Good night.

Fabulous socks of the day...