On the morning of August 31st Sophia's night nurse noticed that her G-tube had fallen out in the night. There was a hole in the balloon that is supposed to keep it in. Her stomach closed the site before I could get another g-tube in there. We took her right away to the pediatrician's office and they could not get it back in. We took her to the pediatric floor of the hospital and had a temporary tube placed in her nose and down her throat :-( She HATES that one :-( Then we took her to the surgeon who placed her G-Tube originally and he could not get it back in. She was scheduled for surgery the following morning to re-open the site :-(
After the surgery Sophia seemed a little uncomfortable, but ok. We brought her home and her pain was increasing more and more as time went on. I was texting with her pediatrician and we decided to use the hydrocodone prescribed by the surgeon. Hydrocodone, for a baby, now that just made me sad :-( Despite the medication she was still very sensitive and fussy. She didn't sleep much and neither did we. Her HR was high. Asleep it was in the 170's and awake it was pushing 200 constantly. At 3 am she developed a fever. At 5 am she still had a fever and her pediatrician (who by the way is amazing and constantly responding to my worries day or night) told us to go to the hospital :-(
Sophia was in a TON of pain. Her whole face was contorted and her body stiff as she screamed relentlessly. Her HR was staying around 200. On the drive Sophia calmed down and I thought it might end up like the last time I took her to the ER (by the time we got there the problem was over). We were admitted to the ER and she started back up. She was worse. They gave her morphine. It did nothing :-( They did a cat scan, a urine test, an x-ray and a blood draw (for which they had to poke her several times in the head and arms before they finally got a good vein in her foot). The ER doc noticed that her skin was red in a wide oval around her g-tube. That and some of her labs came back. Her white blood cell count was extremely high. He called it a "rip roaring infection". He said she had cellulitis.
She got worse. If she calmed down for a moment, and someone so much as spoke, she would wrench and scream again. They started her on IV antibiotics. She wasn't getting any better. They admitted us to the pediatric unit and she was still the same. Now the redness around her tube was darker, purplish, and the skin was starting to split. And her HR had been at or above 200 for almost an entire day.
That's when I became terrified. Truly. I realized in that moment this could be it. This could be how she dies. Maybe it wouldn't be peacefully in her room like I imagine. Maybe she wouldn't slip into a coma. Maybe it wouldn't be like her sister. Maybe we wouldn't see it coming. I suddenly remembered that the NORD says these kids often die from complications. Oh my gosh. That is what this is. A complication. I was scared. And so was Jason, which scared me more.
The angel nurse who was admitting us saw the purple skin splitting too. She called the pediatrician and they started her on a different antibiotic and Jason and I asked for ativan to calm her, which they gave. Within an hour she was sleeping. She started doing better on the new antibiotic. Thank goodness. We were relieved for a miracle and relieved to rest as we hadn't slept in almost 2 days. The pediatrician came by to look at the site and it wasn't purple or splitting anymore.
After this Sophia got better and better and we were able to take her home on Monday, late-morning, on oral antibiotocs. We are SO glad she is home. It is SUCH a relief. And she is back to her wonderfully perfect smiley self :-) No extra complications :-)
Sophia today...
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