Sorry I never updated again! I am trying to get our life back into order!
Thursday we were up super early and glad to see our team was already hard at work on our discharge paperwork. I had the car loaded at 7 AM. Unfortunately, we had to wait for a pump from our home health company and he had to have several medications before we could get on the road. We were very fortunate that Christine (our beloved music therapist) came and spent some time entertaining Alex (or maybe it was the other way around!). We also got to spend some more time with our new friends Sarah and Cooper.
An aside here...Those of you that know me, know that I am about as outgoing as possible. I love people and to be surrounded be people. At the hospital as much as I love the nurses and formed some good friendships with many of them, they have to work and thus cannot entertain me! I have been very fortunate to meet friends along this journey. This time we got to know Sarah and Cooper whowe had met once before. Cooper was just diagnosed with mito and was admitted a day after us. I was so thankful to have Sarah around to have meals with and chat when things were slow. We miss you guys!
Ok, back to Thursday... Cooper and Alex played in the playroom and Sarah and I chatted while we waited for our meds to be done. We got on the road around noon. The ride home was rough as I expected. Alex pain is better when he is lying down. So sitting in a car seat is not comfortable. Add to that the 3 accidents that slowed us down and it was a hard trip. We were so happy to be home. Our supplies arrived shortly after we got home. Unfortunately when Alex is on TPN (IV nutrition) it is A LOT more work! Add to that his medications are all IV and some of them have to be run over an hour. So I was not done getting Alex settle until 11 pm. At which point I crashed! I didn't even unpack my suitcase which is unheard of for me!
Yesterday, was more of the same with laundry, mail, medications, unpacking, etc. You get the point. I am starting to get somewhat settled.
Alex is doing okay. He has periods of pain. He doesn't like having to carry his TPN as it is REALLY heavy and hard for him to carry, but he is hanging in there. We are getting back into our routine today with school. We have a week until we are back down to Houston so we are going to get through as much as we can.
I cannot thank you enough for all the phone calls, emails, and guestbook entries. They keep me going on hard days.