Sorry it’s been so long since we’ve updated, but there hasn’t been much to report.
Yesterday was a difficult day, no, it sucked. Well, the first half of the day did, the second half of the day was decompression followed by coma/sleep.
Things happened very quickly. Natalie was happy on Sunday, eating corn on the cob and hanging out at the pool with friends. She started getting sick that night, and progressively got worse throughout the evening. Heidi brought Natalie to the hospital on Monday because she wasn’t feeling well at all. She hasn’t been sleeping (maybe 2-3 hours a day total, naps included), and has been uncomfortable and miserable. They first admitted her to the recovery floor, but later moved her to ICU. After many tests & observation, they concluded that her heart function is decreasing more rapidly than they expected. After further testing, they found that the heart was not doing enough to keep her liver and kidneys healthy, and they were starting to experience the beginnings of failure. Her heart was working so hard to make her lungs work that it didn’t have enough left to give her liver and kidneys what they need to function. You could see it by looking at Natalie, she was extremely puffy from fluid and was extremely uncomfortable. She gained almost four pounds in 36 hours, which was all fluid.
The solution they thought was best was to intubate (put in a breathing tube) so that her heart wouldn’t have to work to make her lungs work, then it would be able to give her liver and kidneys what they need to function properly. Dr. Amedori had talked about this on Wednesday, and they began discussing it as a team. I flew out on Thursday.
They discussed it with us on Friday morning, and we could tell that there was some apprehension among her surgical team. We’ve been through some major surgeries and decisions, but we knew this one was different. The intubation carried with it some very major risks because of her lowered heart function. They weren’t sure that her heart would be able to tolerate the sedation. If it didn’t, the only option was to put her on the heart/lung bypass machine (ECMO), but the chances of her surviving that would have been slim. They had the surgical team for the bypass machine waiting outside the room in case they were needed.
So, we had to make the decision of whether to proceed with the intubation or not. If not, we would have had to just hope that they could make her heart function with medication long enough for a heart to come so she could have a transplant, which was highly unlikely to be successful. At this point, her liver was too sick to accept a heart until it healed. It was the hardest decision we’ve made yet, and in the end, we decided to go ahead with the intubation.
After all the stress, tears, praying, and worrying; the intubation took about 10 minutes and she pulled through like a champ. We could tell that even many on the surgical team were amazed that it went as well as it did. Praise God.
Her liver function numbers were looking better last night already, and they’re looking even better this morning. We hope they continue to fall, as they still aren’t low enough for them to perform her transplant, but they’re trending in the right direction. We’re hoping that those liver function numbers improve so that she’ll be able to have her transplant when a heart comes available. We’re not out of the woods yet, but we’re in a much better spot than we were 24 hours ago.
These top 3 pictures are from Sunday at Mark & Micki’s house. Fun times.
This is Thursday evening, you can see how puffy she is.
Right before the intubation on Friday afternoon.
Right after the intubation
We want to make sure to say a special thanks to family that spent the day with us yesterday. We owe more than we could ever repay to Paul, Barb, Steve, and Nancy. It was more helpful than any of them could know to have them here to pray with us and help us through this decsion. Steve and Nancy have allowed Heidi & Natalie to stay with them while we’re in Minneapolis (and me when I come out on the weekends), and Nancy spent most of the day with us here yesterday and Steve came by as well. Paul and Barb drove all night from Billings, and into the lovely rush hour Minneapolis traffic to be here with us yesterday and be with us through this. Thank you also to Nadine for being here throughout this trip, and also to Mark & Micki. We have more friends and family on the way today. We’re very thankful to have family and friends to help us through all of this. It’s a little more than we can endure on our own. Mostly, we thank God for being with us and with Natalie. Without our faith, there is no way we’d be able to do it. He has given us comfort, strength, and everything we need to endure this storm. We pray it is over soon and that Natalie can have a happy childhood and life.
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