All KINDS of things
>> Friday, August 21, 2009
Um...ok. Well, I see why this CDH thing is a roller-coaster for parents. I know that there are ups and downs with this things. I know that Max is going to have days that are not as fun as the one before, but it still doesn't make it easy. Here is the deal...
Dr. Kays put Max on a weening plan from his ventilator the other day and was projecting that Max would be extubated today. Well, after getting him down to 26 breaths per minute (our goal is 10), Max seems to have hit a little wall. They want his CO2 numbers to be 50 or below and he is sitting at about 66.5 or 67. That is a pretty significant difference, and he is just holding there. I am not sure what the doctors plan to do, but as a dad, it is just frustrating that nothing is happening. I tend to be a bit of an impatient person to begin with so this is hard for me. I know that I need to just wait though.
The doctors did take him off of all his sedation and pain medication so he will be more alert and things in the days to come. He has been looking around more and more and that has been a LOT of fun for Claire and I. We are hoping that Max kicks some booty this weekend, and we can do the extubation on Monday or so. I just want him to get better. On a HAPPY note...this is what I walked into this morning:
Yep! Mr. Max is on his tummy! This was the first time that they have flipped him, and they said that it could help with his co2 numbers. It also is just good for him to be in a different position. Isn't he cute?!? We cannot wait to be home. Well, Max has another blood gas this afternoon. I will update you all then.
5 comments:
Max is so handsome! Sorry you guys hit a wall....temporarily. Yep, CDH sure is a roller coaster...that was my theme song, actually it's my ring tone on my cell phone because of the CDH ride.
Wishing Max good gases from here on out!
Take care of yourselves!
Sheryl
P.S. Jaime has those booties, too! :-)
And, did you notice the shoe on his hand!? Heehee they said he kept trying to pull on his tubes so they had to lock him down! :) ~claire
Max is a cutie! I hope he has good gases! CDH is a nightmare (dont like to called it a roller coaster bc I like roller coasters). Prayers that Max can be exubated sp? soon!
Hi there,
I'm a fellow CDH parent and have been following your blog. I have been so happy to see how well Max is progressing!
In reading your post, just wanted to weigh in with our extubation experience with Jaxson. I'm most impatient and so can relate completely. Jaxson was in the NICU for 37 days, no ECMO and was extubated for the first time on day of life 10! He had been satting really well on O2, CO2, the works, so the docs decided to give it a try. They mentioned going to CPAP first, but in the end just extubated completely, no CPAP.
It was an awesome moment to see Jax's face free and clear of tubes...but it only lasted 4 hours. He was working too hard and had to be re-intubated. It was devastating, more so than everything up to that point that we had dealt with; I was so down. I saw extubation as our ticket out of the NICU and then when it didn't happen that day, well it was disappointing.
The docs admitted they were a little to agressive and had they just waited a few days they could have most likely saved him the reintubation hassle. He was extubated for good a week after that reintubation and rocked and rolled his way out of the NICU. B/C of that experience, my sense is that as impatient as we can be as parents it's better to be conservative with these major changes and give our CDHer the best chance at success for any given hurdle they have to overcome.
Max is doing great, you guys are doing great...stay positive!
Cheers,
Sarah
www.cdhsurvivorjaxson.blogspot.com
Hey Jordan!
I have been following the blog and I am so happy for you and your family. Looks like Max is doing well, really well. We are really happy for you here at the good ole UOP. I have been keeping the zombies at bay but it is really important for you to brief Max on his birthright in regards to zombie killing. If you could bring the game station to the hospital and walk him through killing the Nazi Zombies...I'm thinking we could get him started sooner rather than later. Just a thought. Well...I think that is it for now. I will keep checking on you guys. If you don't hear from me...I might have gone into hiding. The zombie population is growing here in AZ. It's pretty scary. Anyway...take care oh and by the way that is one handsome little guy you two made...good job!
Post a Comment