Erin is really having difficulties today. Sheila and I went for lunch around 12:30, and were back within 30 minutes. During that time, Erin had a reaction that they are attributing to the blood transfusion, which they immediately stopped. When we returned from lunch, they were also preparing to change her IV line from her left arm to her right. They had called in a specialist who is an expert in putting IV lines in infants. Infants with cardiac problems tend to have very fragile veins, so this was a big deal. It was our first instance of watching our child really suffer, and the specialist tried to find a vein. She was a trooper throughout the process. It was probably harder on us, having to help hold her down. Sheila was great, showing why she is such a natural at motherhood.
She is having tremors which is causing her a great deal of agitation. Her heart rate is spiking as high as 220, and her breathing is greatly elevated. Her PGE was increased to see if that would help, but it seems to exacerbate the problem.
One of the side effects of PGE can be tremors and a fever, and she seems to have both in spades. Her fever reached a high of 39.1, which translates to about 102.4 Fahrenheit. Sheila and I held her in her bed throughout the afternoon. With each tremor, her heart rate would spike to well over 200, and she would have agitated crying jags. I have never felt so helpless, watching her suffer and knowing there was nothing we could do. At 4:30, she was given a Tylenol suppository (that certainly elevated her mood even more!), and by 5:30, the crying jags were less and her stats were improving slightly. Her oxygen is the highest it has been since yesterday afternoon at 86.
Nothing seems to be working at this point. We have done extensive blood tests to check for an infection, as well as a chest x-ray. Everything looks within normal ranges, and her x-ray was fine. The next step is to catheterize her to see if she has a urinary tract infection.
Something must be causing the agony she is in, but damned if anyone can figure it out. It is heartbreaking. It is looking like an all-nighter.
1 comment:
Jim and Sheila
We hate to hear Erin is having setbacks. We continue to send our good thoughts your way. How are he 2 of you holding up? It must be excrutiating for you. We hope you have lots of support there. Please know we are praying for you.
love
Dave and Christine
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