Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Agnes is Home, Again

on September 10, 2013

100_1768We weren’t sure Agnes would really be coming home today when we showed up at the hospital with all her bags and the stroller. The room was full of nurses and physicians, and they were all surrounding Agnes’ bed while the monitor flashed and beeped that her sats were low and her respiration rate was high. “We’ve tried everything,” they told us. I guess they even did chest x-rays overnight, which tells you how at-a-loss they were as to what the issue was. Agnes’ pulmonologist decided to give Agnes a different size trach tube to see if that helped to get Agnes’ sats up. “But,” Dr. Toder said, “she has to be fantastic after we change the trach because I don’t feel comfortable sending her home so touchy.” So we changed the trach tube. I did it, and I had an audience of at least three or four people. Agnes took a while to calm down, but she did calm down and Dr. Toder came back and conceded that she “feels a bit more optimistic than this morning” and suddenly everyone was working furiously to get Agnes’ butt discharged from the hospital. We hooked her up to the portable oxygen tank and the rental pulse-oximeter. We put her in the car seat. We wrestled her and all her gear (four bags full!) out to the car that had been baking in the hot, hot sun all day. We drove Agnes home. I suctioned her in the car (might as well get the first time over with and out of the way). Agnes puked as soon as we got her home. So we changed her trach ties. She was mad as heck, so we dialed up her oxygen a couple times. During her first feed at home, she puked again. I didn’t bother changing her ties again. They didn’t get very messy. We suctioned Agnes many times. Agnes was mad as heck. During her second feed at home, my mom held her upright for the entire hour-long feed, plus twenty minutes after the feed ended. As soon as we put Agnes back in bed, she puked again. Only in the last hour have her sats come up and stayed up. The docs want her to be at 95% oxygen saturation all the time, and that has only happened within the last hour. Hopefully soon we can turn down the oxygen concentrator to where it is supposed to be. I won’t rush to do it until it looks like Agnes is settled.

I’m really scared about having Agnes home. I feel like she was better off in the hospital and I should take her back because they let her come home before she is ready. The first few hours she was home, I felt like everything I did made her condition worse. I’m sure those first few hours are the hardest for everyone, but they were really hard! I sincerely hope they were the most difficult, because if that is the way my life will be like all the time from now on, I think I would rather not.

Agnes finally fell asleep after the last puke, and we’re starting another feed, so fingers crossed she likes it this time. The home care nurse will be arriving any minute to get oriented. I better go, I think she’s here!

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4 responses to “Agnes is Home, Again

  1. JeneaSwainston says:

    She’s just testing you…trial by fire! Sounds like you handled the situation great! I know I know nothing of what you are going through, just trying to be encouraging…Love you all, Aunt Jenea

  2. woodra01 says:

    Great picture! I hope everything goes well. My thoughts are with you during these stressful days.

  3. Kathy Schwager says:

    That does sound like a scary day! We will continue to pray for all of you.

  4. Amy Seymour says:

    Yikes! I can see why you think that they released Agnes too soon! But have God will see her and you both through all this and one day all the difficulties will be a distant memory.

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