I want to start by thanking everybody for their thoughts and prayers. Whatever you are doing keep it up because our little girl is as good as we can hope for at this point. She is such a strong little girl.
Mom got released late yesterday morning from the hospital so she was able to spend a lot of time with Sofie yesterday. She probably overdid it because she was in a lot of pain last night. Thankfully they have Ronald McDonald Family Rooms here at the hospital so she was able to lay down last night and get some much needed rest.
Well I better get to the star of the show. While I don't think they could find room for another wire or tube on her little body and she has enough drugs going in her to make everybody on Celebrity Rehab very jealous, she is doing really good. The main problem right now is there is air leaking from her right lung that they are trying to get under control. They put a chest tube in not too long after she got here to help relieve the pressure. After several rounds of Xrays throughout the day they thought it wasn't in the best location to be getting everything so they put in another tube last night and her blood pressure numbers are the best they have been since we got here. The doctors have even said that if continues to progress at this rate that they're optimistic that we will be able to make to surgery without having to go on ECMO. Which may be the best news yet.
I think I should start leaving her alone more often because everytime I went in to see her last night they were lowering her settings on the ventilator. The Doctors told us we are on the low end of the range of settings, but it's still good to see everytime they go even lower.
The surgens were in to check on her this morning, which is good becuase the doctors told me when we got here we wouldn't see them too much untill her vitals got into a range that is safer for surgery. They told me we aren't quite there but we are getting closer.
Some of her doctors have begun a study that is trying to help babies that have to take a lot a pain killers. With babies that are on pain killers for a long period of time they begin to develop a tolerance which means the drugs levels have to continue to increase. This also means they have a harder time with withdrawls when they start to come off the drugs. So her doctors want to try a drug that has been used on adults and has been effective but hasn't been studied on babies yet to try and limit the the need to increase her pain medication levels. Our little girl is the study's first participant. So the doctors say if this works she will be legendary to a lot of babies in the future.
Well while it seems like I have been writing forever I sure I am leaving out so much. I need to go down and get Mom so I will sign off for now. Keep those prayers coming. More updates later. Hopfully from Jennifer who is better at this stuff.
Sofie's Dad.
Sent from my iPhone
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7 comments:
Sounds like your little Jayhawk is a strong one! Keep the good news coming!
[You should win some sort of Supder Dad award for typing all of that on your iPhone!]
~ Megan and Family
Way to go Sofe! Kenny, that was a great update. It sounds like things are going well around there. We'll keep praying for more miracles and further improvement. And, like the Cottrell's said, you should get a super huge award for doing all of that on your iPhone! Keep taking care of yourselves! Love, Ryan & Kristi
RE: the pain meds: When Sabrina had her surgery, she was on massive doses of pain meds for both sedation and pain relief, and they were able to wean her quite successfully--first they augmented the fentanyl with methadone and then dropped fentanyl levels until they weaned her off that, and she went home on Methadone and weaned her off that in less than a month following an established protocol. It went well, and she has thrived since then. better to be "addicted" to the pain meds for a while than to be uncomfortable, and babies cannot tell you when they hurt except with their bodies.
Jean N. Sabrina's gma
I am thrilled to hear that she is doing so well. You truly do have a little fighter. I hope that the new medication will work.
Kenny you do get the award for typing all of that on you iphone. It must have taken forever! Thanks for the update though.
Janet N
Hey Kenny,
That was a pretty good update you did. I can't believe you did if from your iphone. What other hidden talents do you have?? Sounds like Sofia is doing pretty good. Cheryl gave me an update last night after she had you guys settled into your room. I hope Jennifer got some much needed rest, she needs to take care of herself, as the Drs will take care of Sofia. So you are incharge of taking care of Jen and getting her to rest. I so enjoyed the pictures Kris sent me. Grandma & Grandpa look pretty proud. Even David said your daughter looks just like you. We are continuing to say prayers for Sofia and look forward to seeing her in April on our way thru KC. Take Care
Love Gail
Wow, Kenny! That was an excellent update and wonderful news that Sophia is progressing well. Obviously, many people have been praying for all of you. You were very courageous to do this on your iPhone.
We look forward to more updates, but please take care of yourselves first.
Jennifer and Kenny: Congratulations on such a beautiful girl! I am sorry I am so late in posting, but you have been in my thoughts and prayers. I love the picture of her smiling--what an amazing gift.
Ryane
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