I just want to cry. Avery had a pretty miserable day. Alot more of the panic attacks. One nurse relieved another and they were just about in tears to see him like that and feel so helpless. Since I had nursing coverage today, I was just starting to enjoy my cup of java while at the bookstore after work today, when........ Rick called and said I needed to come home b/c Avery's episodes were much worse. His o2 was also dropping down in the low 80s and he needed some supplemental o2. His o2 is fine but his heartrate was going anywhere from 80-220 (his normal is in the 140s). So now it is 7 and he is still not sleeping even after increased dose of ativan, methadone, and we just added morphine per his Pallative Dr. I have been speaking to them just trying to figure out what is going on with him. She heard him over the phone and was concerned. We are really trying to avoid going into the hospital b/c not really sure what they can add to the picture and it will probably take 5 days there to figure out nothing. We are also questioning if it is the darn port. Remember while he was in the hospital there were concerned about how deep his port was and causing issues. We are thinking that maybe it is a port issue. The dr. was thinking it could be tickling in his atrium possibly causing these anxiety attacks. So we would need to be worked up AGAIN and ultimately need the port pulled back if that is an issues. So sounds like at least another week stay. GRRRRRRRR.
Some good news though. Make a Wish called today and granted Isaiah his wish. They will be building his playhouse near the pool in the next few weeks. Yay. They will not put the tv in which is fine so we will have to get him a tv and put an AC in it. We are thrilled for him. He and Avery will get to hang out near the pool and still watch their tv.
Let's all hope we don't have to go the the hospital tomorrow. I will be soooo bummed. I will let you all know.
3 comments:
Hey guys, good luck tonight. I hope Avery settles, and he and you all get some relief from this constant stress. Poor little guy. It must be so stressful to watch him go through.
Thanks for the call. We'd love to call, but I think I may be in England with the baby for my grandmother 100th (!) birthday. Not positive, 'cause I don't have Amelie's passport through yet, but if it arrives in time, I'm going to try and go. I haven't been home for about 3 years now. Scott said he wanted to try and bring Celia and Sophie though, if that's OK, and I'll let Tracy know. Actually, here's her number, just in case you want to call her. c. 1617 306 7089 and h.1603 893 5346. Did i give you my email last time? Just in case it's helpful to have, it's alisonhodge@care2.com. I went and left you number on my answering machine at school, although I feel bad calling, 'cause I know you must usually be pressed for time. I'll give you our other numbers too though, if calling is easier:
h. 617 469 3458
Alison c. 617 892 2535
Scott c. 617 892 5042
OK. Hope you guys have a good night. God Bless. Alison.
I meant 'we'd love to come', just in case that wasn't clear!
Ugh, Nicky. I hope Avery finally settled and had a better night. I would be concerned about the heart rate issue too. I hope you can do some outpatient tests to help determine if it's the port or not. Neither of you need another admission any time soon.
As you know you are not alone. We are right with you on the edge of admission too.
I'm glad to hear that the outside room for Isaiah will be built soon. I hope both boys enjoy it.
I'm missing P2P and all the updates. Here is my email address feel free to email if you want.
debbiewhite23@hotmail.com
Debbie White
Ontario, Can
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