They had Maddy weaned of the vent by Sunday morning. Natalie was there a little before me and Maddy was sitting up doing her breathing exercises. She looked really good and was comfortable. By the time I got there the pain had caught up with her and she was asking for more pain medication. Dr. Rolf said he would give her as much as he could but he can’t give her too much because then she wouldn’t be able to breathe. He told her to take the day off and rest, which he never does. He let us know that her chest X-ray showed more fluid on her lungs, which is not surprising right after they remove the vent, so they needed to spend the day trying to get her to shed that fluid. What happens is the positive pressure of the vent keeps the off the lungs, when you remove that pressure the fluid can move back in. They were using Lasix again and her output was good.
So we set about keeping her calm and comfortable for the day. She was in a lot of pain but resting. After talking to Melissa, who was having trouble getting a sitter, we set up a rotation so someone could be there for Maddy to keep her moral up. Natalie had been there all morning so she went home and I stayed to wait for Melissa. Maddy was able to nap all afternoon, she was having a little trouble keeping her O2 sats up so the put her on a BiPAP machine to help push more air in when she breathed so she didn’t have to work too hard. By 2:45 she was starting to have even more trouble and her pulmonary artery pressure started to go up again. They brought in the ventilator so the could give her the Nitric Oxide again to help dilate the blood vessels in her lungs and get her PAP down and her sats up. By the time they had that machine hooked up she was working so hard you could see she was in a lot of pain and she said that she couldn’t breathe. Even thought her numbers looked good she was short of breath and obviously struggling. They had boosted her O2 and the Nitric and her PAP was still too high. Dr. Rolf was on the phone the whole time this was going on and made the call to intubate her again.
Did I mention that as this all started happening Melissa got there and I was going to head out to eat for the first time that day? It was a little crazy because she went from being just fine and napping to needing to be on the ventilator again within minutes. It all just started collapsing in and one problem seemed to roll right into the next. As I look back at my text updates to family it was about two hours between Maddy’s numbers dropping and the doctor getting there to intubate her. Back to the story...
Tony, Maddy’s nurse let me know they were going to intubate but didn’t want to tell Maddy until Dr. Rolf was there because he didn’t want her to stress any more. While we waited for Dr. Rolf to get there you could see how hard Maddy was working for every breath, I could also hear her lungs rattling with every breath. Melissa and I stood by and kept her calm so she could rest. The doctor got there and let her know what was going on, she seemed upset and relieved at the same time. Melissa and I went to the waiting room hoping this set back was not as terrible as it seemed.
After about 40 minutes we got a call from Tony saying everything went well. He needed to straighten everything up before we could come back into the room but he didn’t want us to worry. Dr. Rolf would be around to talk to us soon. After about another 15 minutes Dr. Rolf came in and said that Maddy sure was not making it easy on us. Yeah, she is not much for taking the easy way through anything. He got the tube in and put her on the vent without any problems. He did a bronchoscope while he was in there and said there was blood in her lungs. He said whats happened is her lungs are spasming, which causes the spike in pulmonary artery pressure this causes the little capillaries in her lungs to weep out blood. The good news is that blood in the lungs is reabsorbed very quickly. He has seen this kind of thing before and it’s not uncommon, it doesn’t happen a lot but it happens. The last one her remembered was about 4 years ago with another young girl with CF. That girl just finished organizing and running the lung clinic’s annual 5K. Maddy will need to be on viagra to help keep those pulmonary pressures down and we will have to watch out for spasms.
Maddy will be on the vent for the next 48 hours so she can recover and heal. They have her sedated again and she slept comfortably last night. This morning she woke up in pain and had to be put under heavier sedation because when she is up and aware she struggles a little against the vent and her sats drop. Hopefully this will be the last setback. Natalie, Melissa and I are taking turns being there so that if anything happens there is always one of us around to comfort her and call the others.
Thats all for now.
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