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Oct 11 2008

When we almost lost him

Published by butternugsquash at 9:45 pm under Down Syndrome Edit This

I wanted to share about the time we almost lost Henry. It was the most horrible week of my life. In March of 2004, Henry was 4.5 months old and he got sick. At first, we just thought it was a cold. but he got worse. On Tuesday night, the 2nd, he ran of fever of 102.9. The next morning, I took him to the doctor. He looked awful - lethargic and extra-floppy, labored breathing, hot, coughing - the whole 9 yards. All I got from the doctor was that I needed to get my hands on some breast milk and give it to him. I KNEW he was wrong. I KNEW it was worse than that. He was about to send me home with a phone number for La Leche League, when I realized that he was very, very sick. I said, “y’know, he’s just not right. He’s SO lethargic and with the high fever last night…”

The fever finally registered with the doctor and he said I should take to Children’s Memorial downtown right away. By the time we got him down there, his fever was 104. In front of my eyes, the ER went into overdrive with him - his oxygen sats were in the 60s and they rushed him back to get him on oxygen, take blood and all that stuff. They were in a panic to get him into a room - I remember the doctor going on and on about it and asking over & over if the room was ready. Finally, it was & they rushed him upstairs to the PICU. he was in an isolation unit at the end of the hall with his own nurse. His tiny, floppy body was all naked with tubes and monitors on him & a big, huge, cast-like thing on his arm with the IVs to keep them from pulling out. He kept biffing himself in the head with it.

hospital4b.jpgThey then put him on a BiPAP machine so he could breathe.  It was so big & he was so small that it wouldn’t stay on properly. He’d let out these little mewling kitten cries from inside that were all muffled and pitiful. We were able to get his pacifier in under the BiPAP, which helped, but due to all the tubes & wires, I couldn’t hold or comfort him at all. I could only stroke him & talk to him from his cribside. I can now admit that I was terrified. Even with the BiPAP, his oxygen sats weren’t going up at all. They kept saying, “We’ll keep trying, but we may have to intubate.” which scared me so much.

On night 3, as I was sleep on a cot in the waiting room, I was awakened at 4 am by, “Mrs. Sturm, you need to come…” I SHOT out of bed, jammed on my clogs and ran behind the nurse, trying to clear my head. She tried to calm me by saying it wasn’t an emergency, but in my befuddled mind, you don’t wake somebody up at 4am unless it’s an emergency.

When we got through all the automatic doors & down to his room, the doctor explained that he was just working WAY to hard to breathe & was so tired that they’d decided to intubate him so he could rest & get the oxygen he needed. Unfortunately, I couldn’t be there with him while they did it, so I had to wait in the hall. It all caught up there. I started sobbing. Thankfully, an amazing aide stopped to talk to me about it all - explaining that it didn’t mean he was getting worse, but just that this would help do the work for him so he could rest. She took a good 20 minutes to talk me down & I’ll always remember that. Once he was done, I could go in & see him. He was SO tiny & helpless, I just wanted to hold him & make it all go away.

hospital1b.jpgHe stayed like that for several more days & I just walked through the days; reading, watching TV, and going down to the cafeteria. He was sedated through all of it, so there wasn’t anything I could do for him. Just waiting. Finally, on the 8th, he was doing well enough that they could take him off the BiPAP & we could start feeding him the next day. I finally got to hold him again. My Squishy. I was so thankful.

During all of this, one song kept going through my head. I had woken up one morning and started singing, “You give and take away…You give and take away….” over and over. When I realized what I was singing, I started crying. It was as if God was saying to me, “You have to be prepared to accept whatever I’m going to give you here…” I immediately got angry, but the song continued to reverberate in my head. I needed to accept that God was wonderful - no matter what the outcome. I needed to bless Him even in my desert places, when I’m possibly going to lose my son. I just repeated these lyrics over and over - reminding myself that how I responded to this was a CHOICE. So…I chose to bless Him, even as I faced the worst possible scenario. I sang that song to myself so many times that week. Wonderfully, everything turned out okay. Henry recovered and is almost 5 now. But I’ll never forget how I almost lost him.

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11 Responses to “When we almost lost him”

  1. amyon 11 Oct 2008 at 10:33 pm edit this

    Wow. I have a 5 month old. Very touching story that makes you think and remember all of the blessings of life.

  2. Shannon B.on 11 Oct 2008 at 11:35 pm edit this

    Oh Christy - Too choked up to even know what to write. I just know I admire you even more (didn’t know it was possible!!) and I love Henry a little more too (didn’t know that was possible either!!)

  3. melodyon 13 Oct 2008 at 8:42 am edit this

    im crying as i read this. i couldnt imagine the pain and torture you must all have been thru. and the last bit when you were saying about the song got me all sobbing. God is indeed good but he takes what he gives. its part of the cirle of life. hope henry wasnt in to much pain when he went through all of that.

  4. Signeon 13 Oct 2008 at 3:44 pm edit this

    You got me crying too! (deep breath) That is so scary. I have a 4-month-old and thinking of him in your son’s place….wow. I’m so happy for your family, that your little guy made it and is such a blessing to you. Kids are amazing.

  5. Keelyon 13 Oct 2008 at 8:56 pm edit this

    Oh…that was beautifully written and painful and made me cry. Thank you for sharing it so openly.

  6. PaulsHealthBlog.comon 14 Oct 2008 at 6:04 am edit this

    That’s one of the best posts I’ve read in a long time.

    My wife and I have a little toddler who is now 18 months old. We have had our own health issues with him, that required outpatient surgery, and that was not fun at all.

    Thanks again for sharing. We take so much for granted, don’t we?

  7. mrsbear0309on 14 Oct 2008 at 10:07 am edit this

    How terrifying. Especially since he was so young and tiny and fragile. So glad your little guy made it through okay. Thanks for sharing.

  8. savvysuzieon 14 Oct 2008 at 5:39 pm edit this

    Wow. I had to wipe a few tears away and go kiss my boy’s sleeping head before I wrote a comment…I don’t think there’s anything worse than a mother feeling helpless to protect, fix, or help her child…but what a great reminder that song is too, that God walks those roads with us, and that we have to trust His will no matter how hard it may be. I have found myself singing that song in some of my darker moments as well - blessed be His name in joy and suffering!

  9. Kellyon 14 Oct 2008 at 6:19 pm edit this

    I have tears in my eyes. I can only imagine how terrifying that must have been.

    It’s good that you pushed the doctor. A mother knows when her baby is not right.

    I’ve seen adults intubated and it is scary, but on an infant….

    when my uncle nearly died last summer, I had to surrender it. I’m not a super religious person, but I am very spiritual and I know I am not in control here. I had to surrender it and my prayers turned from please save him to, your will shall be done.

    ~Kelly
    http://www.30somethingandsearching.today.com/

  10. mariaon 14 Oct 2008 at 8:07 pm edit this

    Oh my Goodness. God bless you for getting through that and for the angel that was sent to help you in the hall. Thank God you had the strength to push to doctor a bit. If you had just taken him home under doctor order and not said anything…

  11. erin taleson 16 Oct 2008 at 2:13 am edit this

    thank goodness you trusted your instincts!

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