That's how long we have been here at the hospital. It feels surreal. I remember similar feelings after Bob died, wishing that I would wake up and find out that this has been just a dream, a bad one. But here we are...
I will preface tonight's post by saying that my mood is suffering today. I debated about whether to blog or not because I don't want to be a downer. However, this is reality and this is where I'm at. So if you are reading this hoping for inspiration, I admit - you may not find it tonight.
Today's had some difficult moments. Maia has had periods of agitation/screaming, not sure if they are pain, anxiety, frustration, or what. It's hard when she can't tell us what's wrong. Her food intake has slowly declined since Saturday. This morning, Maia would not tolerate any food in her mouth. I could barely get her to take a bit of the nutritional supplement and the nurse had to give her medications through her feeding tube. It's a significant change from last Friday when she got 1800 calories in!!! Mark barely got some apple juice in at lunch time. She won't let us get a good look in her mouth but when I can peek, I don't see anything out of the ordinary.
The doctors came in and didn't seem to think anything was concerning. I don't want to be one of those difficult parents or someone who overreacts. I also know what it's like to be on the receiving end of a difficult patient and/or family so I try to keep that in mind when I communicate with the providers. On the other hand, Maia did not show any of the typical symptoms associated with shunt problems even when she was fighting this horrible infection. She had the low grade temp for months and every time we expressed concern about it, we were told it was nothing to worry about. I explained that to the doctors this morning, saying that I wanted to be sure that nothing was missed because "there are no concerning symptoms." They seem to think that this may be related to her medication taper. I'm frustrated because I just don't know. I want to trust that the doctors are right, but given the events of the past couple months... I struggle to trust their lack of concern.
In spite of the agitation, Maia did ok with therapy. The therapists are starting to talk about adaptive equipment for home which is also discouraging because it feels like they are scaling back their goals. The original goal was to have her near baseline before we left the hospital and given where we are at today, this seems unlikely. I'm a bit overwhelmed when I consider that.
I spent a little time with Matthew this morning which was nice. We had a picnic at one of the parks and then played for a while before I took him to Nana and Papa's to spend the night. I ran a couple of errands - picking up a few clothes for Maia and buying cat litter. Felt good to do "usual" things for a bit.
Tonight, Mark and I gave Maia a shower. This did not go well. She's had two baths and today's shower since getting to rehab. For a girl who always loved baths, she has done a complete 180 and hates them now. Since she hasn't liked the baths, we thought we'd try a shower. She screamed (yes, literally screamed) for the entire time. On the positive side, she did eat a bit better for dinner and I was able to get an adequate amount of fluid in. Please pray that this improves tomorrow.
I know I'm over tired and that certainly doesn't help my mood so I am going to quit for the night. Thank you to all who read blog and uplift us in prayer. Jacqueline, Pat, and Jane - you guys ROCK! I love reading your comments!!! Thank you so much for all of you who provide ongoing support and encouragement, it makes a difference. I know God is with us in the midst of this storm and He will see us through.