Well, we hit our first rough patch yesterday afternoon when Nicholas came down with a high fever - enough to concern them to do a blood culture (results in a few days) and begin a broad spectrum anitbiotic. They also gave him tylenol to control the fever and wished for the best as his immune system right now is nearly non-existent. Very Very scary time for us. It really brought the reality of his condition to the front burner. Not that we aren't already living it day by day, but even though we are here, he seems so healthy. It was easy for us to think that maybe we would be able to get off easier than most, but reality reared its ugly head yesterday and sent us into a tailspin. He became very hot and lethargic and we were told that if it was a viral thing that he would just have to fight it himself. This left us panicked since he basically has no immune system to fight anything right now.
When he wasn't responding as quickly as they anticipated him to after they gave him the antibiotics and tylenol, they transferred his care to the pediatric intensive care unit for more one on one care through the night. His heart rate was extremely high, so they began pumping him with more fluids to slow it down. Fortunately Nicholas now started to show some signs of his regular self and I started to relax, but then PICU still ordered a chest xray (nothing was found) and felt he should be on a montior for heart rate and oxygen level for the night. During this we were told that his blood pressure was returning to normal, but since his blood pressure was high without the fever, that wasn't a good thing and they needed to bring it back up (odd, but they needed to do that to keep him stable). They drew more blood for labs and determined he needed more platelets and another blood transfusion, Monitors and pumps were beeping all night long. The nurse was so loud in and out of the door - it was horrible. We only got to sleep from 4:30 - 7:30. I thought I would lose my mind.
I was told that the residents on duty, the PICU attending and Nicholas's doctor were on the phone every hour. With this course of action, his fever broke during the night, but was back up a bit high this morning. When to doctors rounded they were no longer concerned and were happy to see him coming around. They said that this type of incident will happen regularly will require a hospital stay each time it happens. For now, he will continue the antibiotics for the next 7 - 10 days. Our hopes of getting out of here by Friday have been scrapped. This was the first of many bumps in the road.
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3 comments:
Donna, I'm going to give you the same advice you gave me...Stay upbeat and take care of yourself. I know it is so hard when you watch your child lie there and you feel helpless, but as mommy you are strong and Nicholas can sense that. I am praying for you all and I wish I could give you a big hug. Am sending you good PICU vibes from the NICU. :)
Donna, I know that this must be a ride with many bumps along the way, but like you said, day by day. You also got your first big one out of the way. You are in for a good fight, but will prevail! Stay positive and know you are all loved and prayed for. I LOVE this site and the video with Marshall was priceless. Looking forward to more better days than not so good ones. Be well!!! Love, The Trainors
Donna, Nicholas has a little buddy named Colton. The high fever scare with doctors trying various tactics sounds just like Colton. Those are two tough guys just giving their Mommies a wild ride. Better days are ahead-hang in there!!
Many hugs,
Judi
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