Ok, really though there isn’t enough time in the run of a day. I just started my CCNP course  on Monday and all i do is read, read and read some more. But I can only handle so much cardio and resp assessment that I’m taking a break.

So the rest of the story. So when we arrive there like i said we were bombarded by Dr. after Dr. They were worried that her condition would eventually progress to TENS. Look that one up too for a full description. The only thing that they have found that MAY work is IViG. Which even in the end isn’t proven to help, just it may boost the body’s immune system and set things back on track. The dermatologist told us at that point if she was sick enough to be in that room, she was sick enough to need it. So we signed the consent form for this since it’s a blood product. But it was later in the evening so they didn’t hang it that night, according to all the protocols and whatnot. They agreed that they’d do it in the morning. Around 8pm the dermatologist came in and suggested we let him do a biopsy just in case they didn’t know what was going on, at least the skin was still intact and they could turn to that if there was nothing else left to do. So i agreed and he did that. She didn’t mind it too much, she got one stitch in her arm.

After that the night nurse came in and did her assessment. Ava fell asleep at this point. The nurse told us we should go and try to sleep that the next day would be busy and that she’d give us a pager and page us the second she woke up. We went to our parent room in the hospital and there i pumped my brains out and went to sleep for a bit. I of course had to pump every 4 hrs as nolan is still feeding quite frequently through the night.  Anyway, i called to check on her at 5am and she was still sleeping so around 6am we went back to the room with her.

She woke up around 7am and saw some stars painted on the wall and started singing twinke twinkle little star like she always does, i sang along with her. i was sooo relieved to see some of my old ava back. I even told hubby i thought she looked better, that she wasn’t as red, he saw it too. The drs again started coming in one after the other to check on her to see how her night went.   They all agreed to hold off on the IViG and to see how she progresses, if she continued the way she was going she wouldn’t need it at all. She continued to get better and better as the hours went on, there was no worsening and she was much like herself. Her output started to pick up too, so around 3pm we were given the ok to be transferred to a medical floor. Before going to that unit the opthamologist had to check her eyes, since they are involved with SJS and can become damaged. Well that was something i’d never want to witness again. He had to use this machine and had it directly on her eyeball. I know a lot of readers have small children so picture them letting a complete stranger gowned and gloved come in and stick a machine on your eyeball! At that point the other resident ordered versed for her to try and relax. The nurse gave it to her iv push and she was a little calm for that part then she giggled hysterically for a minute then she SCREAMED for the remaining 15min. They gave it to her again and the same reaction. I had had enough at that point of watching them continuously poke at my baby. I could only imagine what her little mind was thinking! 😦 After the eye exam which showed her eyes were perfect we moved up to the medical floor. There we stayed for another 5 days. They had to monitor her skin to make sure no blisters formed and led to breakdown, since this can commonly happen. She was so lucky that only her face was involved in blistering and it has now healed since. She’s still completely reddened from head to toe, itchy most of the time and looks awful but she’s back to her old self.

The first picture is what we woke up to that morning. Keep in mind that her whole body was this red, it hadn’t spread that far at this point.

And of course the second one is her now. Still recovering but cute as ever.

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11 Comments (+add yours?)

  1. Chas
    Apr 22, 2008 @ 19:15:32

    Oh dear, poor little thing. That first picture hurts just looking at it. I’m so happy she is all better!

    Reply

  2. liz
    Apr 22, 2008 @ 19:41:56

    oh my goodness. i agree with chas, just looking at that first photo makes me ache. i would’ve been TERRIFIED to see my baby like that.

    sounds like she got good care, though. and i’m so pleased that she’s much much better now.

    Reply

  3. merr
    Apr 22, 2008 @ 23:53:10

    Oh wow poor thing. I am so glad she is feeling better. How freaking scary!

    Reply

  4. twinsRus
    Apr 23, 2008 @ 01:14:07

    Oh I can imagine the agony that u guys went thru during the eye exam! It must have taken everything to keep u calm during that…I bet u were out of your mind….I am so happy that she is recovering….Sounds like u have a plateful… ttyl heather

    Reply

  5. Valkyrie
    Apr 23, 2008 @ 04:19:48

    Thank you for sharing this incredible story with us. I’ve just learned something new – and at least with your pictures as well, I know what to look out for should it ever happen to us. You must be SO relieved that she’s on the mend now!

    Reply

  6. Tina
    Apr 23, 2008 @ 08:06:55

    Poor little love. I can’t imagaine what you must have been going through. How frightening.

    Glad to hear she is on the mend.

    Reply

  7. Whitney
    Apr 23, 2008 @ 10:38:53

    Bless her heart! I’m SO glad she’s all better.

    Reply

  8. Becci
    Apr 23, 2008 @ 18:21:03

    I would have freaked the freak out if that had been my baby girl! Poor thing!!! I am so glad everything turned out ok.

    Reply

  9. whimsicalchaos
    Apr 24, 2008 @ 06:25:46

    wow… so what do you guys have to do now to keep her sfe so this doesn’t happen again?

    But, I am so thankful that she is getting better! Hugs!

    Reply

  10. erin
    Apr 28, 2008 @ 23:12:04

    I am SO GLAD that she is getting better. Seeing the pictures of her brought tears to my eyes again, I hate that she had to go through all that the poor little thing 😦 Thank God she’s ok.

    Reply

  11. my4kids
    May 03, 2008 @ 05:52:39

    That picture does just hurt looking at it! Poor baby… She looks so much better in the second but still doesn’t look comfortable. I’m glad she is on the mend and doing better now.

    Reply

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