Wondering, Waiting and Worry

Brianna shows off a sweet little Marie Osmond doll named Brianna that was sent by one of my sweet friends and her daughter from Pennyslyvania. Oh to see that smile again. Soon, we are told, soon the tube will come out.

The waiting, wondering and worry is an ever-present state in our lives. Brianna's sedation has been tapered down enough that she is waking and definitely there, answering questions. Of course, she is gagging and coughing a lot due to the tube. Well I knew the Tuesday extubation was premature. I'm actually upset that they even mentioned it, because they obviously didn't think it through. She has not been extubated and from our Patient Care conference on yesterday, it probably won't happen until early next week - a week after they said it would!

So the biggest issue they saw was that despite the fact that Brianna's lungs are in good enough condition to breath without the ventilator and with a little help from an oxygen mask, her muscular strength is not where it needs to be in order for her to protect her airways. In other words, if she vomits or coughs up something, will she be able to move her head so that she doesn't choke on it. We most definitely want to be on the safe side and wait, but it seems like they jumped the gun.

So for the past several days, Brianna has been awake and moving more with each passing hour. She is still coughing and gagging, but is also answering questions yes and no and giving a weak thumbs up. She is very slow, mind you, but again, I would think that would be the case with anyone if they were in a bed for seven weeks, fighting the worst of infections and not getting all the nutrition needed - even becoming catabolic for a few days. On top of that, every doctor that walks in is asking for her to wiggle her fingers and toes. She just stares at them like, "What am I a show dog?"

But an electroencephalogram (EEG) was ordered as was an MRI, after the neurology team came in and examined her. They felt she was not as responsive as they would have liked and felt that maybe she was having seizures "subclinically." Or, having seizures without any outward physical signs.

The tech for the EEG came around 5 pm and hooked Brianna's head up to 30 tiny electrodes. She had to wash 30 little areas of her head, squirt on conduction goop, sick on the electrode and then tape over it so it would fall off. The test itself was only 20 minutes, but the whole preparation and clean up before and after took a long time.

What it told us was that she had "diffuse slowing," meaning she's on a lot of drugs. The MRI is being done tonight to rule out any damage to the spinal cord or brain stem from blood clots or past seizures. Because she is VRE positive, meaning she had an antibiotic vancomyecin resistant entereocaucus, they have to take her as the last case. Last means 11 pm tonight. Most of the doctors think everything will be fine, but they want to rule it all out.

In the meantime, she has become more and more aware of her physical limits and that she's on a ventilator. She has cried several times thinking this is all permanent, even though we tell her it is not and she is just weak and the tubes will be out soon. Soon for the doctors is early next week. I just hate seeing her so tortured by the tube in her throat. On the other hand, I am so thankful that we at this point looking back at where we started in the PICU.

The other issue the doctors were concerned about is that since her kidney function had been greatly reduced, how quickly were the drugs clearing from her system. Probably not very well, we all suspect. So the renal team was called in to see what could be done to bring her Urea Nitrogen (BUN) and Creatnine down. They were at 154 and 1.7. The thought was that since her BUN was so high, she could also be suffering from something called uremia. It causes confusion. Their plan was to give her more fluids and thankfully over the past few days, her BUN has dropped to 102 and creatnine is now 1.5. Not a lot, but the trend is definitely headed in the right direction. (Now, I sound like one of the doctors using their typical rhetoric.)

She has had several fevers too and that worries me. They have cultured all her IV lines and nothing has grown out, thankfully. So they are being watched, but nothing specific is being done about them.

I had a very tough weak, with all the worrying about possible brain damage or spinal cord injury. Then the sight of her struggling with the tube in her throat and her extreme muscle weakness. In some ways the beautiful pictures of her I've taped on her room door are wonderful and sad. I put them up so that all the medical team could see they were treating a beautiful young woman, even though she didn't look like her pictures at the moment. But I'd see these pictures and wonder when I'd see my wonderful daughter like that again. Soon, I know, it's just so hard living these days.

As I have said before, we have come so far, and we have so far to go. Every month, I get a free parking pass from admitting. I use it everyday and the expiration date is written on the plastic card in black sharpie. I look at that date and wonder what it will hold for us. I thought for sure that by June 15, we'd be back in 2 north on the transplant floor and out of the ICU. Now, I'm not so sure, since she will spend several days after extubation in the ICU for observation. So many times I've looked at that date and thought "Oh, we'll be going home by then." I am still learning I have to live day by day, and it is a challenge when you have hopes and dreams of seeing your child well again soon, only for those hopes and dreams to be dashed.

We are all so happy to see Brianna's gorgeous blue eyes looking at us, and know that soon, very soon, we will be back on the transplant floor. Soon, just isn't soon enough sometimes for me.