Hi everyone - so sorry I haven't blogged this week, but well, let's just say we've been settling back in and little man has been making that process kind of difficult so I haven't had a lot of free time. Can you say "edgy?" Man, he goes from fairly happy and smiling to screaming bloody murder in seconds flat. I leave the room and he loses it. I hand him to Dusk and he melts down. I think, in addition to some fairly massive headaches, we may also be dealing with some trust issues. ;-) The good news is that after 4 days straight of alternating Motrin and Tylenol during the day and Tylenol w/Codeine at night, we were able to go ALL DAY TODAY without any drug intervention needed! He was much more like his old self. From what I understand it's usually 2-3 weeks before these kiddos are back to their usual selves, but most turn the corner from being so terribly edgy at about a week and a half or so. Since today was post-op day 9, I'm really really really hoping we turned the corner today. Please pray that's the case! In other good news, it's absolutely true when they say that kids grow better post-Glenn! Bodie's eating about the same over the course of the day as he did pre-Glenn, but he's doing it by eating larger quantities less frequently. Praise God!!! (that means I'm spending a lot less time sitting down on the couch and feeding him - yay!). He's also gaining better - he's gained 10 ounces in the 4 days he's been home from the hospital! (his cheeks are totally filling out even more - it's so cute!). We had an unscheduled visit up to CHLA yesterday since his incision site was getting a little red - the NP looked at it and decided it's probably not infected, but we just don't want to take any chances with Bodie, so she prophylatically prescribed an antibiotic. Hopefully we'll only be on it until his post-op appt Friday. And speaking of appointments, he has his surgical post-op Friday (when they'll remove his remaining sutures) and a cardiology appt with an echo Monday (please pray that goes well - that will be his first post-Glenn echo, so I'm kind of nervous and praying we find all is well).
I was even able to catch a cute pic of him being happy and laughing at me:
We had an opportunity to snap a few pics of Bodie's first day home from the hospital (while my in-laws were still here - YAY!):
3 generations Popo Alan and Gigi Jan with Sierra and Bodie
Take that, HLHS!One of the first times Bodie has been with BOTH mommy and daddy in a few days (I just love how he's reaching back for Dusk)
And finally, Mr. Townes has had a ROUGH week. The good news is that, after an unsuccessful extubation Saturday followed by a reintubation Monday, his extubation yesterday appears to have been successful! But there is still a little lung deflation, he's starting to sound "junky" (common post-extubation, but it's hard to cough it out when you're really weak) and his chest tube drainage is still more than they'd like it to be, so he could definitely use some prayers for that. Now, the big issue - SEDATION. They are still working on this, but thanks to the super diligent work of his amazing mom Sara, it appears very likely that all of the craziness they've seen over the past 10 days has been due to drug withdrawal (he is on some VERY heavy duty drugs), so they're now trying to strategically wean him down on the drugs to see where he's really at. PLEASE PRAY that the weaning goes well and they discover that there is no brain damage or lasting effects of all of the drugs he has been on. Please also pray for his dad Aaron and his mom Sara, who is 7 months pregnant! Please pray that she is able to rest some and sleep some and take care of herself. This whole process of watching her sweet little boy go through some really rough detox is so emotionally draining - I cannot imagine how difficult this has been for both Sara and Aaron. Pray for strength for the both of them - and for sweet Townes, whose body has been through A LOT in the last 10 days and is pretty weak. If you'd like to stay abreast of Townes's situation, his Care Page site is http://www.caringbridge.org/visit/townsendhale.
He looks so good! The headaches and trust issues will pass...wait and see. The next journey is AMAZING. He will grow so much and you will be able to 'breathe' again (at least a little better). I am looking forward to reading about how well he is doing at home and how much he is growing and doing.ReplyDelete
Townes is always in our thoughts and prayers...along with Bodie.
We'll keep the prayers coming for Bodie and Townes!ReplyDelete
Amy thanks so much for your blog. We will continue praying for Bodie at Learning to Live Fellowship!ReplyDelete
Praising God because He does ALL THINGS WELL!!