His pressures are about the same. Which is really confusing as his BNP is perfect. There is no leaking in his valves. His EKG has been improving. He’s gaining weight. All signs were a go for some good news.
There is also an issue with how well his body is oxygenating itself. Parker’s lungs look good on the films and videos they took. So they can’t figure out what is going on.
The anesthesiologist had some issues with Parker’s trach and leaking. He was pretty acidic. So we are most likely looking at a cuffed trach next. And a new drug, a drug like lipitor, has shown some promise in kids with PH as well as Ds.
Emphasis on some.
We will also be meeting with Parker’s lung specialist soon.
I can’t tell you how much my heart hurts right now. It’s like I was getting used to the idea of my kid getting healthy, and the universe just sent us a big ‘ol “sorry, but that ain’t how it is going to be going down after all” message.
I KNEW I should have gotten that stinkin’ Valium prescription filled.
Aww I am so sorry you did not get the hopeful news you were looking for. (((hug)))
Just wanted to let you know that I’ve been thinking about you and Parker all week. Know that there are many of us in the woodwork here who are thinking and praying for you, Parker, and your family.
Oh no Tammy, I am so sorry
I thought for sure it would be good news this time. I am still praying…
Love to all,
Amy
Praying for your family right now.
~hugs~
I looked for you last night. Parker was in pacu and they said you were probably down in the cath lab. Why do they think he’s not oxygenating well? Are his blood gases bad? What are they saying?
Hugs Tammy. Keeping him in our prayers. I hope things improve soon!
You know my heart aches that the news wasn’t much, much better. I for one still believe Parker is on his way to healthy, and I keep praying.
ox
Don’t worry – there will be ups and downs. He’s gaining weight! That’s good! As long as there are indications of improvement, you hold onto that. Focus on that, and let the other go for now. Hold onto the faith!
I don’t have any Valium to share, but I DO have Lexipro.
*hugs* It never fails. As soon as you start getting happy and things are running smoothly you get another bad doctors visit. Im sorry this happened and I know the feeling all too well. I hope there is better news in the future.
i’m still praying daily , even if i don’t comment often. i’ll try to do better. ~hugs~
dang it – I was praying for better pressures
I’m glad he is not doing worse though. Praying and hoping you can get some answers as to why his body isn’t oxygenating well and I truly believe that one day, Parker will be even healthier – because I think he is looking great, gaining weight, growing, and progressing. There are answers out there, and if anyone can find them, you can and I know that one day Parky will be able to run and play and go out in public and be all the he wants to be. Hugs!!!
OK, so here’s my question. Could he be more acidic because they sedated him differently? Can’t they just check a blood gas randomly and see if it shows he’s still acidic? I know putting them under can mess up their system. Expecially if everything else is still good. How frustrating.
Twitter: kadiera
Sep 27, 09
Oh, that sucks. I wish you’d gotten better news.
Sending you an email, btw.
I’ve been thinking about you and Parker and the rest of your crew. I’m sorry to hear that the results weren’t what we were all hoping for. Wishing more health for Parker, soon.
Hey Tammy and Parker,
I was thinking of you all day on Friday and praying for you. I am sorry that things didn’t go better . . . cause I am sure seeing alot of progress! Hold onto of the good news — there is A LOT of that! :0)
Keep your chin up, you are doing amazing things with and for him!
Andrea
Twitter: therextras
Sep 28, 09
Praying for Parker. And Tammy.
Parker is in our prayers!
Thinking and praying for you. Hoping you get some good news.