Really?

We're finally back on line here at the hospital. I got the computer working again this morning, we got busy, and before I could post this afternoon, it froze up again. But... hopefully, it will stay working while I finish this post.

It's been a full day. Maia did not sleep well last night. Maybe 3 or 4 hours at the most. She alternated between agitation and just lying there with her eyes open, fighting sleep. She did not tolerate her tube feedings well (they just stayed in her stomach) so the feedings had to be stopped a couple of times during the night. Due to this, the decision was made to put a new feeding tube into her small intestine so that she would receive more nutrition because she is just not getting enough to sustain her.

The neurosurgeon came in this morning and told me that the plan was for Maia's shunt to be replaced next week, probably Wednesday as her spinal fluid cultures had continued to be negative.  He did admit that Maia is not responding from a cognitive standpoint the way he expected and he is not sure why. She did seem a little more alert this morning and appeared to be focusing on SuperWhy - her favorite tv show.

Infectious disease team came by and said that Maia would remain on antibiotics through the rest of her hospitalization, but would not need anything after she went home. I was feeling optimistic about this!

The medical doctors and neurology group have been working together to try to treat this agitation; not being sure if it's pain, anxiety, a combination of both, or something else. Maia's scheduled Oxycodone was decreased and scheduled Ativan (for anxiety was added). At this point, I think it is too early to tell if we're doing the right thing with these changes or not.

So, we went for the NJ (feeding) tube placement around noon. Even though Maia got the Ativan before the procedure, it was still uncomfortable for her. By the time we got back to her room, my sweet girl was exhausted. We had some visitors and then she did finally fall asleep and slept for about two hours. I was able to catch a short nap during that time as well.

When we woke her up to cath her (empty her bladder),  Maia was NOT a happy girl. I could not calm her down. It seemed like she was having pain so I did ask the nurse for extra pain medication which Maia got. This at least took the edge off. Although she didn't fall asleep, Maia was resting quietly while we watched Cars, her favorite movie.

Dr. B, the neurosurgeon, came back to see us and asked me if Infectious Diseases had been in to see us this evening. Nope... Well, Maia is growing another bacteria in her spinal fluid cultures. This is my "really??" This makes SIX different bacteria!! I don't even know how it is possible for this to happen. Where did she get all of this junk in her system? UGH!! Poor kiddo! Well, it is likely that Maia will need an additional antibiotic in addition to the three she is already receiving. This is also going to delay replacement of her shunt. :-(

I admit, I'm discouraged. It's so hard to see these periods of agitation and not be sure what is causing them, as well as feel helpless to do anything about them. I try to calm and comfort her, sometimes it works - sometimes not. I want to ease the suffering Maia is feeling. It hurts to see her uncomfortable. It hurts that she is not able to communicate with us and that things are so different than her baseline functional status. It hurts me to see her get weaker and think about the long road of rehabilitation that she will face. And it's hard to think about a delay in the replacement of the shunt. Although the current drain is working fine, it carries it's own risks and these increase the longer in remains in place.  I'm trying to stay positive and upbeat, but my heart is aching for my sweet girl!

My heart also aches for Matthew. Although he is not suffering (AT ALL) by being with Nana and Papa, I miss my boy. He's going to spend tomorrow and Sunday with Grandpa Jerry and Grandmama which he is looking forward to. I try to explain to him what is going on, but it still doesn't feel right. Matthew has had enough abandonment in his life, I worry about his perspective on this.

Mark has an abcessed tooth. He went to the dentist this morning and is now on antibiotics/pain killers. He is miserable and I don't say that lightly because my sweet hubby rarely lets on that something like this is bothering him. So the fact that he wanted to go to the dentist tells me how bad it is. 

Ok... so that's enough of my sadness for the evening. Maia is resting comfortably now. Praying that she is able to sleep tonight. Would you pray for that also?

And please pray for my two precious guys - Mark and Matthew.  Thank you dear friends, your prayers are what is sustaining us right now.