Friday, July 11, 2008
Friday update
Last night Daniel's blood gases seemed to be improving. This morning the gases were still not where they needed to be. One of Daniel's doctors and a pulmonologist came and did a "scope" on him. Their was a bit of an air leak around Daniel's tube so they went down with a scope to position a new tube. The new tube has a cuff and will keep the air from coming out the sides. The positioned the tube more in the right main stem of the lung. A hole was put in the side so air would get to the left lung. The right lung is the side with the compression so hopefully this custom tube will help keep him ventilated. He is STILL having the EEG done because yesterday he was seizing a lot. They made a change to his medications yesterday and again today. The seizures have slowed and they are still trying to determine what medication will help him the most. His blood pressure has been low so he is still on dopamine. The nurse practitioner said today has been better than yesterday for Daniel. Please pray that everyday continues to get better.
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6 comments:
Daniel continues to be in our prayers and so do you and your family! Nurse Cayse
Dear Laura & Jason,
I am again saddened by the news that Daniel had to go back on the oscillator. I understand how serious things are when the vent is necessary, and the oscillator only emphasizes things 100 times more to me. Did you ever think you would be happy to hear that he JUST needs the vent again?
I hope and pray that with continued EEG testing, doctors will be able to find the right cocktail to stop Daniel’s seizures so his body can get the rest it needs to heal whatever it is he is trying desperately to fight off.
I hope and pray that this customized ET tube will get the air to where it needs to go so the compressed lung can re-inflate itself and oxygenate the blood like it is intended to do. This will allow the CO2 levels to return to a more “normal” level and give less room for germs to grow which hopefully will reduce the risk of infection. Where else but CCHMC could Daniel have gotten a customized ET tube??? It makes me even more confident that you made the right decision to return to Cincinnati, no matter how hard I know it must be for you all to be torn apart as a family. You all are so strong, and you have been through so much in the past 6 months. If there was an award out there for the best parents, you would be getting the gold medal!
Be sure to tell your older children we are praying for them, too! How difficult this is for them! I’m sure they have the same feelings of helpless you must feel yourselves, and how they must want their mommy & daddy & baby brother back home with them. We will be praying Jason gets that job transfer, and that you all can find a house to make your new home out there in Ohio.
Once again, thank you for taking the time to step away from Daniel to continue to give us updates. We understand how difficult this can be at times, especially when your child is so critical. But please allow yourself sometime to step away. You need your rest, too so you can stay strong for Daniel. We’ll be praying for all of you!
~Maggie Boyce
I just found Daniel's blog for the first time today. As I read through I could see how strong your son is. I will pray for him and your family.
Vicki
mom to Jack, LCDH & ECMO
www.babyjackjensen.blogspot.com
CP Name: JackJensen
Hey there Laura and Jason,
I have been reading your updates and felt a little sad that so much is going on for you both as well as your little engine that CAN and WILL. You have a great faith and the best Dr's in the world so he is in great hands in many ways. We are always thinking of you all the way from New Zealand and wish we could be much closer to be of more support for you all.
*hugs* and warm fuzzies
Chrissy and Eydge and Ash and Isyle
Jason and Laura,
We just wanted to let you know that we are praying for you. Dnaiel is always in our thoughts. Let us know if there is anything we can do.
The Wickliffes
Jason and Laura,
I was recently sent the link to Daniel's Page and was able to read through the recent postings of Daniel's progress. I am obviously saddened by the tough road Daniel has had to travel in his early life and the challenges your family have been facing. Daniel is such a beautiful baby as evidenced by all of the website pictures and the slideshow you've created. I just wanted to let you know that Alix I and the boys were thinking about you guys and the strength Daniels has exhibited. Stay strong and know that Daniel is in our thoughts and prayers. We hope to see you soon.
- Mark Shutello and Family
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