Change of Plans

How quickly plans change. Alex was supposed to be admitted to Cook Children's today to prepare for a number of procedures/surgery to be done under anesthesia tomorrow. Yesterday morning Alex woke up with a sore throat, cough and low grade temp. By afternoon his temp was up to 101.7.  We went and saw our pediatrician yesterday afternoon. Alex has strep throat. It was nice to get an easy, clear cut answer. Talks were already in progress that if if Strep, flu and rsv were negative we would need to be admitted to rule out a line infection. I have called the GI, but am awaiting a return call. It was Dr. Benzick and Dr. Koenig's recommendation that his procedures be cancelled, however Dr. O will have the final call.
Alex is doing okay. He obviously doesn't feel well. His temp was up to 103.2 last night. He is dizzy so he can't sit or stand. His nose is really stuffy, so wearing his oxygen is tricky, but he is hanging in there. Hoping a few doses of antibiotics will have him up and playing in no time.
Ali

Side by Side Once Again

Our sweet Hayley and Hershey are once again together. These two incredible puppies who were our first babies. Two dogs with vastly different personalities, but were so close, they could not stand to be apart. Our Hayley- independent, smart, loyal, protective, so well behaved. She was my girl, but she loved Alex. She slept in his room every night except when he wasn't there then she would sleep in our room. Our Hersh- so affectionate, always underfoot, loyal, playful, loud. It is only fitting that 6 days after we said goodbye to Hayley, Hershey joined her in heaven. These incredible pups were so very loved and will be desparately missed.

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