Yesterday was a long day of appts. I was in bed by 9pm which is early for me. These appts. just take so much out of you. I think Avery is still recovering from it.

The first one was pulmonology. It was a new dr. for us, one I had met on an inpt. basis and really liked so I decided to switch to. The funny thing is when we started the appt. he had asked if I called or emailed the old pulm. dr. to let her know we switched to make things smooth. I said I did not but will do. Well halfway into the appt. doesn't the old pulm. dr. walk in with a resident she was apparently training. She seemed like she had no idea who we were or never acknowledge it. She was asking your run of the mill questions. The new dr. was beat red (poor guy). So in my eyes, there is no need to inform her b/c she obviously had no idea who we were anyway.

Not much had changed in terms of interventions for Avery. But we did discuss doing things more on an outpt. basis rather than running into the hospital and spending a week there unless we need to. Not sure how realistic it is but when he seems like he is brewing something (which ironically is right now). I can call him and get a script for an antibiotic and if that doesn't work than we can head in. I really do like this guy. I also discuss a trach and why this is not an option in our book. Rick and I have decided that we WILL not do this with Avery. Just our decision and what is best for him. He totally understood.


Next appt., immunology: So overall Avery's immune system is not horrible but he does have some classic low levels that would cause him to have continual infections. Mainly the yeast/fungus that grew which is the most dangerous for him. Because of this he will start the IVIG infusions in 2 wks. This is a blood product that is infused via IV/port over about 4 hrs. and his basically boosts his immune system temporarily. He will need this about once a month, sometime more frequent. So it is like filling his gas tank. This is something we hope works to keep him out of the hospital and keep some infections at bay.

Like I said he was been working on alot of secretions the past few days and really stressed about it. His O2 requirements have increased. So we know something is brewing. I will be calling the dr. tomorrow to see if they can call in something and hopefully stay home. The crazy thing is he only finished his respiratory IV antibiotics a week ago and he is already brewing something. SO that tells you how weak his immune system is right now. It will be interesting to see how much of a differents these infusions make.


Some prayers are need for the handsome boy Jakob you saw in the pool pictures. He is back in the hospital b/c he needs a new central line. It is also his mom's birthday tomorrow :( Just pray that he gets his line placed on thurs. so he is able to get back home to enjoy the rest of his summer. He has been through so much already.