Alex and Maddy

Alex and Maddy

Monday, February 4, 2013

Frustration

One of the most frustrating parts of Mito to me is when something is off, but we don't know what! We are in that limbo right now. In the past, whenever Alex has started TPN, we have seen this incredible burst of energy and he looks and feels great. Unfortunately, we have not seen any of that spark this time around. Alex has been on TPN 3 weeks and he is sleeping as much as usual, if not more. For those of you that don't know, Alex sleeps about 10-11 hours a night and takes a 4-5 hour nap every day. He is really quick to get upset and get mad or cry. He is complaining of being short of breath multiple times a day. He is running low grade temps. Just a bunch of odd things that are painting a clear picture. We have done a chest xray. We are watching labs closely. We have given a few doses of a diuretic to make sure he isn't fluid overloaded. So far we still don't have any answers. I just want my boy to feel really good. In the past the ONLY thing that makes the risk of TPN worthwhile was seeing these huge improvements clinically. It is really hard to justify the risks with no apparent reward! Otherwise, Alex is loving little Mia. She has been the perfect little puppy for him. She is so loving and cuddly! Mia and Hershey have become best buddies. They love to rough house and play together when Hershey is feeling good. Hayley is still not so sure she likes having another girl in the house. Please pray for my Bug to start feeling better. I miss the sparkle in his eye and the joyful laughter of feeling good. Ali

1 comment:

  1. Aw - hope you can get things figured out and have Alex back to himself soon!

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