Day 24

As with every day in the hospital day 24 was eventful. Last night Linda needed a break and it was time for me to step in, so we traded out the night shift. Maliyah stayed up later than normal, but for the most part it was an easy night.

Yesterday and today have seen some activity with us actually going to the play room and her walking on her own without tears. Maliyahs fever spikes have dropped from critical to concerning, which means she’s been slightly more energetic. Its evident after almost 4 weeks of in-activity that she’s lost a fair bit of muscle mass. As much as we want to say the worst is behind us, this isn’t a quick fix and it could get worse according to the doctors.

This afternoon, Maliyah started complaining about her arm hurting, which turned out to be a problematic IV. So back into the procedure room to get the IV removed and replaced. Poor little girl cried her eyes out for almost an hour and then napped the next four.

After over 3 weeks in the hospital, Maliyah is DONE with all the movies, the games get a passing glance, and the puzzles and coloring books last about 5 minutes each. When her temperatures are down she’s semi-active and wanting to play with the toys, but as the temperatures fluctuate so does her energy. Thankfully the playroom still piques her interest.

After the morning meeting with the doctors, they are starting to have an optimistic outlook. They have taken her off one of the medications along with putting her NG tube on hold to see if her stomach will start digesting the excess fluids. It’s a waiting game at this point and the road is starting to feel like driving through Kansas at 3 a.m.