Good and bad. The last week has been an emotional up and down that seems to come in like waves that wash over me. One day will be amazing, the next will be not so amazing. Some days are normal, the next they become anything but normal. Instead they are our new normal. I find myself exhausted by the good and the bad. I think its the emotional strain of knowing what lies ahead. If I could forget what we are up against, if I could imagine it away, or pretend it wasn't going to happen then believe me when I say I would.
How is Ashley? I am asked daily how she is. I have my token answer knowing that everyone who asks really doesn't want or need to here anything else than "she's happy". Its an honest answer. She is happy. What else is really important in those brief run ins with others? They want to hear good news when they ask, and all I want to share is good news. There is no need to go into her current struggles, health issues, and scares. The answer seems to satisfy most and it satisfies me too.
So...how is she? Well, she's happy, but I'll share more with you guys because I know you've been around long enough to really want to know the details. Looking at Ashley's labs this week, I fear the "traffic jam" has begun. Actually I'm thankful that it has taken this long to start. When she was a baby and her liver was sick the easiest way our doctors could describe what was taking place inside her body was to use the words "traffic jam". It seems that when the liver struggled then all those systems that relied on it to do its job so that they could effectively do theirs began to get backed up. Things like, bile flow, enlarged spleen, low platelet count, etc., etc. We are noticing the effects of the sick liver in other areas at this time. Its not just a liver issue. Its lots of issues when your liver is struggling. She is also maintaining a pretty high BUN. It has been high for 4 weeks in a row. This means she is dehydrated, but other than the elevated BUN she looks as though she is not. Its been an ugly cycle of fluid loss. She of course loses fluid through her ostomy bag. She also loses fluid through her g-tube that is left to drain into a bag 24 hours a day. Then you have to add in the fluid losses from her constant vomiting. We run IV fluids round the clock in one of the lumens of her line, but we never seem to catch up. She is urinating well and her creatinine levels are still in range. They have been inching up each week and are now at the top of the range, but they are hanging in there. There is nothing that can be done other than IV fluids so an admission into the hospital would do nothing more than frighten her. The only way to rehydrate is to run fluids and we are doing that. Her constant vomiting seems to be a side effect of her new anatomy. Her stomach is unable to drain anything into her remaining few inches of small intestine. The contents of the stomach are identical in color, consistency, and odor as those of her ostomy. It is more than uncomfortable to have that backing up and exiting out her mouth and nose. It breaks our hearts to watch her struggle with something this awful. I won't go into any more detail. I think you can understand what she is vomiting by that description. Just another reason why my token answer is "she's happy".
We've had a few scares this week. Her abdomen area is not really "fit" for dressing central lines any longer. She's been left with quite a mess of incisions that intersect at all the wrong places. In addition to this problem her ileostomy is very, very close to her g-tube making the fitting of her ostomy bag almost impossible. So when you take all of these issues and combine them you sometimes have quite a mess on your hands. Her ostomy bag can not seal on the midline side of her body because there is a trench that has been left from the transplant and explant. Her central line is situated on the opposite side of this trench making it difficult to fit her tegaderm dressing. Keeping it intact and sterile is proving to be a nightmare. Twice in the last 3 days we have undressed her to find leakage from her ostomy in her central line dressings. Its so scary. Knowing the dangers of infection and the disaster that would pose for her. It has left me shaking, scared, and nauseated more than once this week. There are no good ways to fit all of these dressings on her body.
Her liver numbers have seemed to stabilize the last few weeks. Not continuing to get worse. That has allowed us to breathe deeply for a moment or two. If it remains stable then we have more time and more time is what we need. The FDA continues to drag out the Omegavin battle. We received an e-mail yesterday requesting more of the same. So we will continue sending them all they ask for and hope at some point they are compassionate enough to grant us use of the drug.
We have heard nothing about the financial approval requests that have been made. At this time we sit back and stay out of it while the financial department of transplant works with the insurance company. They will notify us when a decision has been reached. Like I've said before this is step one.
This morning we are headed over to Shreveport for her doctors appointment. I don't expect much to happen. They take a peek at her insicions, her foot(which is healing nicely:), and go over her lab work. Then we are on our way home. She enjoys the drive and I enjoy getting her dressed up to go out. She doesn't leave the house much anymore so it gives me an excuse to fix whats left of her hair(I can't even discuss this without crying so I won't. I thought about posting pictures, but it makes me cry so I won't).
Our holiday decorating is in full swing. I will share some pictures of some of the trees since so many are asking. I don't know when, but I will. I think we have decided to do some traveling on Thanksgiving and are staying home to spend Christmas here with our kids. We all talked about it and home seems to be where they all want to be. I think that sounds good to me since home is where I'll be dreaming of on those long nights in Nebraska.
The kids are as busy as ever. Allie has switched from volleyball to basketball and is still playing some soccer. She has one more season game and then an upcoming tournament as a guest player. Blake continues playing baseball and spending time with his friends(one in particular:). Dave and I are enjoying our evenings at home with all the kids. We are taking things one day at a time, soaking it all up, and doing our best not to lose sight of the moments we are being given. We know hard times and decisions are ahead of us, but we are really trying not to forget about the here and now.
Hope you all are well. I'll try to be more present here this week. We plan on being in town this weekend and that means I'll have more time to blog. Take care and God bless. Trish