Wednesday December 5, 2007 <O:P>
</O:P><O:P>Several months ago Cindy coined the phrase, "Home by Hanukkah," which we laughed at, because it was so far out in the future, we just knew in the back of our minds that there was no way we would be here that long. Well . . . </O:P> <O:P><O:P>Sorry for the late update, but Poppa stayed with Maddie last night, so Cindy & I could get away from the hospital for the night. Here's the catch up. The ECMO circuit change came off without a hitch and has resulted in a minimal inflammatory response. Based on tidal volumes between 5 & 7 and a decent x-ray picture, she was able to forego the bronchoscopy. She is currently being weaned on her ECMO and ventilator settings and is expected to come off ECMO altogether in the next few days. Also, her urine output has increased slightly. More later on the Thursday entry! </O:P></O:P>
Thursday December 6, 2007
Today was a day of rest for Maddie. She started the day without the need for a bronchoscopy again, as her x-ray and tidal volumes have continued to improve. She was given a hefty dose of diuretics which kicked her kidneys into high gear, producing some serious pee pee. She slept for a good part of the day, and then woke around 5 PM, ready for play time. For a kid on life support, she is pretty amazing. She cannot speak, but she can certainly interact, and she did for several hours. However, by 10 PM she had not slowed down. Her happy, interactive mood turned into bizarre behavior. Her eyes were wild and wide open and we are pretty sure she was hallucinating. The poor thing looked genuinely frightened, despite our efforts to calm her. Finally, we had no choice but to give her some heavy sedation to basically knock her out. I don’t know how long it will last, so I am signing off now to catch a few winks while I can. It could be a long night.<O:P><O:P></O:P></O:P>
Friday December 7, 2007
Last night was a long one. Miss Madeline remained WIDE awake until 5 AM, when she finally ran out of juice. They gave her enough drugs to drop a horse, but her tolerance is so high, it just did not affect her. Sleeping all day yesterday didn't do her any favors either. We are hoping she will be a little more active during the day today, so that by bed time she will actually want to sleep. I'm sure the night crew would appreciate it!
She has been tolerating the wean off of ECMO. Presently she is at a flow of 90 cc's/Kg/minute, which is down from the original 150. A flow of 50 is about as low as she can go before she comes off altogether. The current plan is to bronch her tomorrow morning to get one last look at her lungs before they trial her off ECMO. (Of course, once the donor heart shows up tonight, all of this will be moot!) I'm still proclaiming that today is the day. - hope God is humored. In any case, we are directing our prayers that Maddie would successfully separate from ECMO, that her kidneys would resume full function, that she would receive a heart and that God would be glorified through it all.
Okay, so God is probably shaking His head at me right now saying, "When will you ever learn? My ways are not your ways." Yeah, I know, but wouldn't it have been really cool if a heart had shown up tonight. Sort of a name it and claim it thing. I am not the slightest bit disappointed, because I have every confidence that we will eventually look back on today and say, "It's a good thing that heart didn't come then because . . ." I am pretty sure that God will provide all things at just the right moment. In fact I am sure of it.
ECMO was weaned further down to 80, but Maddie did not tolerate it very well and her sats dropped a little bit. She may need more time for her lungs to heal, or she could still have some cast material down there. A bronch could be on the schedule for tomorrow. She has slept 2 of the past 24 hours, and is still wide awake (at 11 PM). If you read this tonight, please get on your knees and pray for this little girl to sleep. Her body needs rest in a big way.
Saturday December 8, 2007
Just in case there was any confusion, Maddie did NOT get a heart yesterday. Oops and oops if yesterday's entry was misleading, but we are still praying hard for one!
If you said a prayer for Maddie to get some sleep last night, praise the Lord, because she did (and still is, as of noon).
The ECMO trial did not go as well as we had hoped. Her blood pressure stayed up, but her oxygen went down, which is basically what we expected. That means her heart function is okay, but her lungs are still crummy. There is nothing else on the agenda for today. Tomorrow will most likely bring a bronch, but it is doubtful she will come off ECMO this weekend.
Please continue to pray that her lungs will clear, and that as the doctors put their heads together they would arrive at the right decision.
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My heart goes out to you and your family along with my prayers. GBU. Love your sister in Christ, Verna
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