Okay, so little man didn't have a great night. Cody called this morning and Rhys' oxygen was over 90% and they had made changes to his oscillator again. We got dressed and went to visit. As we were walking into the NICU we ran into his primary neonatal doctor. He told us that they switched him back to the old ventilator because Rhys wasn't responding so well to the oscillator. He said in the long term this isn't good for his lungs because of the pressure, but in the short term if that is what he needs then it is "manageable". That might not sound like a great report, but this doctor is very no nonsense, so if he deems it manageable, to me that means it isn't horrible and I will take it!
He was at 50 breaths per minute (BPM) when we got there and about 90% O2. The RT (respiratory therapist) knocked his O2 down to around 80% and his saturation was still at the upper end of his 85-95% range (good thing!). The nurse took a blood gas right before we left and told us it was very good. They decreased his BPM to 45 and were going to take another blood gas at 3pm. We are praying this doesn't mess him up again, as that is what happened the last time they took him below 50 BPM and he ended up being moved to the oscillator.
On another note, we had to sign a general release last night for any procedure they might deem necessary. Of course we signed, but it is hard to hear them detail all the possibilities (even though you knew it before they mentioned it). I heard words like "sick" and "chronic" used to describe my son's condition and I have to say I didn't like it. Yes, I understand my baby needs oxygen right now, but chronic lung disease to me is someone who has smoked for 50 years and has no lungs left! I guess that is something we have to let not bother us. It is a technicality as far as I'm concerned since he fits the definition.
UPDATE: Rhys has had TWO good blood gases - he is still at 45 BPM, but they lowered his pressure. Please let us maintain this progress. Rhys also had his first poopy diaper, which made daddy unbelievably happy. This does not necessarily mean he is ready to start eating, but it is a fantastic thing that all his stuff is connected and working properly.
8 comments:
So sorry to hear that Rhys had a bad night. Those are so hard. I'm am happy to hear that he is tolerating the conventional vent again! That's amazing!
I remember like yesterday signing the consent for Coy as well. I, too, did NOT like hearing all the things that "could" happen. It was horrible & made me feel hopeless.
Hang in there guys. You are doing an amazing job. There were many days when Coy was maxed out on the ventilator with 90-100% oxygen with terrible blood gases. But God pulled him through.
And we were told that Coy would have 80% of having "severe" chronic lung disease...he's been home 4 months and is already off the oxygen! (It's not as bad as it sounds!)
Ann Marie Kolkhorst
prayforcoy.blogspot.com
I'm praying for the Lord to encourage you as He holds baby Rhys in his arms and heals him.
Dodie Osteen (Joel's mother) encourged me when Coy was born-she told me to picture Coy walking, talking, getting dressed, going to kindergarten, playing baseball, graduating from High School and college, getting married, etc. Picture Rhys as healed and perfect- No longer dependent on the respirator but breathing on his own with his lungs cleared of fluid and "chronic lung disease".
Never doubt what God can do. Believe that healing is possible for with God nothing is impossible.
Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will make your paths straight. Proverbs 3:5-6
Praying for all of you.
Blessings,
Kathy Kolkhorst
Sweet Baby Rhys, Uncle Jimmy and I love you and are praying for you and your Mommie & Daddy. And I know that when you're older you will be terribly embarrassed when you read this blog and see that we were all so very excited that you made your first poopie diaper :)
Open those little eyes; There's so much to see!!!!!!!!!!
God is so good! Look at your circle of support growing.
Cody, you have just experienced the finer joy of parenthood, the exciting first poop.
You guys are strong. Baby Rhys has a wonderful Mommy and Daddy! We are definately praying for Rhys and you, Candice and Cody. I hope last night was a better night for the "little pirate". We love you. I'm so excited to hear about his poopy diaper, too! :) We love you!
Baby Rhys you have been on my mind and in my heart today - I'm so happy to hear about your update! Tonight most of my family, at least 30+ of us, will have dinner and sit down afterward and pray together for your continued strength and positive progress. We will also pray for the courage and strength of your amazing parents. We have been praying as a family the last Sunday of every month for the last 17 years. During the past 17 years we have seen awesome things happen through our prayers. God has listened to our continued petitions and blessed us over and over again. You and your family are so very loved my many people and are truly a blessing to those around you. Keep fighting and growing and we will keep praying and thanking God every day for you. Stay strong and keep up your fight! We love you - The Myers Family
Found your blog off another preemie site. My trips were born 16 week too soon as well in March 07. I have one survivor Nina who is 16 months old and doing fabulous! When I was in your shoes, I went nuts "googleing" for other parents in my situation. Check out our site when you have time.
I will continue to check on your little one and keep in my prayers.
Candice -
Everyone at WaMu is thinking about you! We will continue to pray for strength for you, your family, and baby Rhys. Please let us know if you need anything.
- Kristin
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