We got discharged Monday night with a feeding tube to protect his lungs from aspirating. He is allowed to eat for 20 minutes on a preemie nipple from a bottle, then we do the rest of his feed through the feeding tube. Since the NG tube is something new, we had a home health visit from a nurse. During the visit, she took his blood pressure and it was high (136/92). Yes, this is high, but that was the same pressure that they discharged us with the day before. So taking our cue from the docs who discharged us, I was not worried. Unfortunately, everyone else was. The home nurse called around and it turned out that they should not have discharged us with that high blood pressure....that might possibly be my worst fear ever, sending us home when it is unsafe. The doctor who discharged us called and said that we should come down immediately to the ER. He also let me know that he had thought of dealing with the blood pressure before discharging us, but had decided to wait. Thomas is on a steroid medicine that is infamous for raising blood pressure so they were thinking once the steroids were done and cleared his system his blood pressure would normalize. Unfortunately, the kidney doctors were not consulted on this decision because they disagreed and wanted to get a blood panel run to see if kidneys were ok. So back to the hospital we went. Went through our ER process and got another CT scan and x-Ray to check shunt and Chiari - this kid better get a super power from all the radiation he is getting - all images were normal so that was reassuring that at least this visit wouldn't end with another surgery. They took blood and sent it out to nephrology to check and decided they wanted to admit us while everyone tries to figure out what is up with his blood pressure....so back we went to good old A 7 on the neuro floor, but this time we have a recently updated room - living in luxury up here!
Blood work all came back normal for his kidneys, which is wonderful! They think the blood pressure is from the steroids causing him to retain water, so they put him on a diuretic to help flush it all out and hopefully manage blood pressure until the steroids are out of his system. We have to stay in the hospital until they see the blood pressure trending the right direction, then we can go home on the meds and monitor from home.
The other good news is the FEES got moved to tomorrow (Thursday) so we will get to see if he is aspirating when breast fed. Originally they told us it would be November 24. If he is not aspirating, then we can get rid of the feeding tube and just breastfeed again!!! Also tomorrow, he gets his stitches out from his shunt site and his decompression site.
The lesson to take from this trip is if we hear ANYone have a concern about any aspect of Thomas, we need to make sure the right people are consulted before we hit the parking lot. It was wonderful to go home and see the other boys and sleep in our own beds for a night, but it was a pretty defeated feeling coming back and getting admitted again in less than 24 hours. Of course we will do anything for Thomas and if that means being here again, then let's do it, but this time lets talk to all the right people before we leave.
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