He's definitly still not out of the woods. He's still intibated. He keeps fighting the vent though. The RT says he bears down and won't let a breath go in. He keeps asking me if he does that at home like my answers going to change if he keeps asking, "NO!" They also thought he might be developing asthma on top of his chronic lung disease, but now they've ruled that out. One of the docs said that asthma was common in WS. Is it because I really didn't think chronic lung or asthma was really a commom characteristic. I know that his heart problems contribute to the chronis lung disease and the pulminary stenosis wasn't helping things. Or could it be more common in WS individuals that have a more severe heart condition and/or pulminary stenosis to have asthma or chronis lung disease. That's what I'm leaning towards. Quick question for anyone who's reading. Did your child have to have oxygen, why and for how long. So far I haven't heard of any one on the blog or any where else.
Now for the good news even though his vent settings aren't low enough they're going to extibate him tomorrow. Why because he keeps fighting it. He needs high flow but hates the tube. The docs say he's not following the typical path of just slowly letting them wean him off the vent. The cardiologist told me today he's going to try to extibate tomorrow. (i wish they'd do it today, now he's going to be fighting all day and night) He thinks he'll have 60% chance of staying off the vent and on high flow nasal canullas. Yippie, he said he usually wouldn't do this but Blake just seems to have a bit tempermetal. He actually said something along the line of isn't that how WS kids are (meaning BIG TEMPER) and maybe we'll just have to do things his way. I know he'll stay off the vent. I know he's trying to tell them, 'Hey this thing down my throat sucks, I'm gonna need oxygen regardless when you pull it so why not just give me the nasal cannulas now so I can have my pacie!?'
Okay so everyone cross your fingers he gets off the vent tomorrow and STAYS OFF, I might get to hold him. Whoo-hoo!!!!
Oh I finally figured out how to put your links to your blog on my blog. If you don't see you link don't be mad at me :( and think i'm leaving you out I'm in the process. Right now though shift break is over so I'll get the rest of everyone's addresses the next couple times.
Hope everyone's having a great day.
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14 comments:
Thinking of you and hoping that Blake gets off that VENT!! To Blake, VENT is definitely a four letter word!! :)
I am tearing up. I am thinking of you and I so hope that you can hold your little miracle soon
I really hope that he gets off and stays off the vent. That would be great news!! I know that the drs had alot of trouble with Abi too and talked about just having to do it her way instead of their way. Sometimes it is good to be stubborn :)..he must know that mom gets to hold him...
I don't know of any other WS kids on oxygen but I also don't know many ( that aren't blogging) that have any of the health issues. there is one girl I remember who lives in California who has a trach tube to help her breathe.The major health issues are not all that common so we are in uncharted territory alot of the time.
Thinking of you!
Noel
I hope he gets off the vent and you can hold him.
Always thinking of you all.
I hope he gets off the vent tomorrow so you can hold him. I don't know about the oxygen thing. I am still learning more every day. I also don't know if I buy into the fact that our kids have temper issues. I think if typical kids went through some of this they would be the same way.
whitney,
I am a friend of your sister Suzanne we work together and when she told me what was going on I called my church and had him put on the prayer chain. I kind of know how you feel being a mother too. I am in the same boat you are too with my son just something differnt. The doctors think my son has Leukmiea but they are not for sure. They are saying its in the pre states of it.We love and miss you all. Be brave and keep your head up sweetie. Love Kami Kessinger from Indiana.
God bless you, Whitney. I know only too well how stressful it is to mark time in a hospital. Not to mention how EXPENSIVE it is; have you been to the UofM cafeteria??? I found the best stress buster to be the long walks around Taubman Center.
I am praying for your beautiful baby. He deserves more than this. And so do you.
Love and best wishes,
Kim
Yes the temper is common, I think! My other 2 kids are super laid back, so I'm going with a yes on that one.....sorry Julie, I know there are exceptions to that rule. I'm not sure about the asthma though.... Never heard that one. Caleb was hospitalized at about 3 weeks old because he had a cold and a lot of fluid in his lungs. His oxygen levels were low, so they put him on it overnight. He was out later the next day, but that was it! When he was younger he always seemed to get a chest full every time he got a cold.
I hope Blake can get off the vent today! Who would like a tube down their throat? Praying that Blake is out of the woods and on the mend and you can all go home asap!
xoxo, Heather ps. I like your new blog :)
Im praying Blake is off the vent really soon, you are all so strong.
love to you all,
xxoo
You impress me so much Whitney, your strength is never ending. Blake, aw Blake, yes that wonderful WS temperment seems to be kicking in, which I think is a good sign! When Avery was born, her pedia. said she was a spit fire at less than 24 hours old!
xoxo
Amy
SSSSOOOO hoping you get to hold him!!!! Still thinking of you and praying for you
xoxo
Tara
I hope Blake does get extubated tomorrow and happier for you! Clare always hated being on the vent once they let the paralytic and sedation wear off. Not fun!
Thank you for faithfully keeping us updated. I know how busy life gets with a baby in the hospital. I am always thinking of you guys!!
Thinking of you guys over here~ Lots of prayers are going your way. :):):)
Whitney, I hope it is all going well I'll talk to you soon....Love you all
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