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Preemies
Bobby Update
We were medevac-ed to Children's Hospital in Philadelphia on Saturday since Bobby was declining dramatically. He was on 100% oxygen with maximum airway pressure, and his oxygen saturations were only in the 60's. We were told there was nothing more that could be done for him at Chester County, so they wanted to fly Bobby to CHOP to try nitric oxide treatment. It hasn't been used much in preterm infants for his condition, but they wanted to try him anyway since we were out of options. The only thing about transport is they had to bag him with oxygen the entire way since they couldn't take the oscillator or a standard vent on transport and they'd have to bag him from the NICU to transport anyway. They didn't want to challenge him by switching too much in such a short time, so he'd need to be bagged the entire way. The most troubling thing, though, was that he was so unstable, we weren't sure he'd make the trip. It was our only hope, though. The first helicopter arrived and the flight doctor came to the unit to meet us and talk about Bobby. We were so relieved to see her but were soon crushed when we were told that they were having problems with the transfer isolette and it wouldn't come out of the locks on the helicoptor. The problem with this is that if they did get it out and come to the NICU to get him and transport him to CHOP, they were worried they wouldn't be able to get the isolette out once they got there. Then they started talking about taking him via ambulance. We weren't going to consent to that because he was not stable enough to make it and we couldn't tolerate the thought of losing him on the ambulance and not being able to be with him. Then they came up with a new solution of getting a new helicopter and flying it to CHOP to make some modifications to fit another isolette and sending that aircraft to pick him up. That worked, and about an hour later, Bobby was loaded for his 10min ride to CHOP (versus the 45min ambulance ride). Once he arrived, the amazing doctors here were able to stabilize him, and he's had 1 on 1 nursing care and amazing numbers of doctors evaluating him and working with us since. He was put on the jet ventilator with nitric oxide for a couple of days and now is back on the oscillator at 80% oxygen (down from 100%) with no nitric oxide. They also think they've identified an upper right lobe pneumonia which is great because now we have a treatable cause for his rapid decline. His lung expansion is somewhat improved, but we're ecstatic to be stable! He's a little fighter and everyone seems so impressed with his progress.
It's been a whirlwind 3 weeks, but the days since Saturday have truly seemed like a nightmare. We were staying in the sleep rooms in the NICU the first few nights on foldout chairs to be near Bobby, but yesterday we got a nice room at the Philadelphia Ronald McDonald House. It's really nice to have a place to call ours and not feel like a bag lady carting our belongings all around the hospital with us!
We're still in a really critical situation, but we're so thankful for progress...we had nowhere to go with Bobby just 5 days ago and were so terrified we'd lose him any second.
It's been a whirlwind 3 weeks, but the days since Saturday have truly seemed like a nightmare. We were staying in the sleep rooms in the NICU the first few nights on foldout chairs to be near Bobby, but yesterday we got a nice room at the Philadelphia Ronald McDonald House. It's really nice to have a place to call ours and not feel like a bag lady carting our belongings all around the hospital with us!
We're still in a really critical situation, but we're so thankful for progress...we had nowhere to go with Bobby just 5 days ago and were so terrified we'd lose him any second.
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Re: Bobby Update
Thank you for updating. I just want you to know that you are very much in our thoughts and prayers. May the transfer be just what he needed...
Sounds like you've got a stubborn one...too cool for his previous digs? ;-)
Seriously though, sending many positive thoughts and prayers for continued improvement and strength!!!
Goodness gracious. Your post made my stomach churn with nerves. You poor thing.. I wish we could do something to help.
I'm so proud of Bobby for fighting so hard.. I'll keep praying!
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Thank you so much for updating us. I've been thinking about little Bobby and your family pretty much non-stop since your last update.
It sounds like CHOP is pretty freaking amazing. I hope little Bobby improves rapidly and you're able to take a deep breath of relief.
glad to hear he is doing better! prayers for your whole family.
((hugs))
Ditto. I don't frequent the Bump much anymore, but ever since I first read your story, I've been checking back every day for updates. Bobby is in my prayers. It sounds like you've got quite the little fighter and a lot of people are thinking of him.
Thank you so, so much for updating! I have been praying for Bobby constantly- I am so glad to hear he has improved, and will continue to pray for him!
(HUGS!!)