About mid-morning, I received a phone call from the pharmacy responsible for my recent stress level increase. They informed me that Gavin's pump had to be ordered, but it had arrived and was going to be delivered today. I'm glad it's going to be here today, assume it arrives because it hasn't yet. The frustrating part remains though. When it's known that something is this important and it won't arrive when promised, a quick phone call would have alleviated a great deal of stress from the last week or so. Shit, for that matter a returned phone call would have worked as well. At this point, as long as it arrives today and Gavin can do his infusion in the morning without having to worry about the pump dying on…

I left a third message at the pharmacy that supplies Gavin's IVIG infusion supplies. You can't just get these anywhere, as they are considered specialized items or something to that effect. The pump that Gavin's been using for his IVIG infusions is going bad. It's about five years old. It's successfully delivered nearly five hundred infusions for Gavin but it's on its last leg. It no longer applies consistent pressure and that makes for a difficult infusion. I called on January 2nd to have a new one delivered. I was promised it would be here by last Friday, in time for Gavin's infusion that day. It never arrived and they never provided an explanation as to why. As I stated above, I've left three messages this week alone and not…

We officially put Christmas behind us this evening and began the sorted journey of getting back to our normal routines. In Gavin's case, that meant he had to do his IVIG infusion, which he does every Monday and Friday. Unfortunately for Gavin, his IVIG infusion didn't go so well. He started the process about 6 PM and immediately hit a few bumps in the road. The first infusion site needed to be replaced because it wasn't working and the second infusion site was leaking. Both of these scenarios are nightmare scenarios for Gavin because it involves more needles and more pain. To make things even worse for him, the procedure ended up taking almost 6 hours. This put Gavin several hours passed his self proclaimed bedtime and that had him…

For the third night in a row, Gavin has struggled to go to sleep because he isn't feeling well. Last night it was a stomachache and headache. Tonight is was a stomachache again. I think we need to get him into his gastro again and this time look at gastroparesis. Lizze has this, it's genetic and it's a large part of what makes her so miserable everyday. We do have a mark in the win column tonight. Gavin did his infusion on his own once again and did a great job. I don't think his condition at bedtime was related to his infusion, but who knows. There weren't any obvious side effects and he didn't have any complaints about how it went. We do however, need to order a new…