Then it happened. Just as soon as I posted that we were getting closer to dialysis sure enough it happened just a few hours later. Since putting in the PD catheter a week ago Friday, we have been hoping that his numbers would continue to get better and not have to start dialysis right away. We also knew that the time would come that we would have to give in but we were hoping to get two weeks so that the catheter could fully heal. Well, we got 1 week and 3 days.
Blake's potassium levels had the final say. We have been chasing that number for over a week and no matter how they tried to control it, nothing worked. In the end it was like we were playing a game that had a vicious cycle that wouldn't end, waiting for the right time and that time was 1 am on Sunday, May 1. We woke up to feed Bowen at 2 am and we both had a missed call and voice mail from the hospital, kind of a scary feeling! Aaron checked his phone and the message said that they would be moving Blake back to Bay 1 and would have dialysis started by 8 am.
Aaron went to check on Blake around 8:30 and he had been on the cycle for 2+ hours. Currently he is getting 35 ml that goes in every hour and then is drained off, so it is 24/7. It is all done manually right now until he can tolerate 60-65 ml over a longer period of time but we aren't going to rush to that point yet for a few reasons. First we want to make sure that the catheter can take the pressure on the entry incision and second just in case we need to place a g-tube for feeding they may need to back of dialysis for a day or two or keep it low pressure. The goal for a baby his size is to be able to handle 100-120 ml at a time and if that happens it will also only take the night to run those cycles through a machine and then Blake will be unhooked for the day.
According to our kidney doc today he foresees that to be 2-4 weeks. That time will be spent gradually giving more fluids, figuring out how much he can eat in a bottle, seeing if we need a g-tube, and training the parents on how to run and deal with all of this. It is going to be a process for sure but we know that in order for us to bring him home we have to be able to handle it and we are going to be just as strong as he is so that we do!
Hopefully the next few postings will be a bit more positive but hang in there with us, we are going to get this right!
4 comments:
We will hang in there with you for sure!!
Well, shoot but don't be down you have so much to be thankful for and we will keep in there with you and praying for you. I know it is sooo tough right now and the end of this crap seems so far away but soon it will be a distant memory. I remember when the doctor said hopefully they will be home by Christmas and I was like OMG that is over a month away and then Christmas came and went, so one advice is try not to think of him going home tomorrow or next week because the roller coaster may swing you for a loop and get you down. I am sorry you guys are going through this but you and blakers are so strong!
Hi Everyone! Well perhaps the medical news wasn't what you wanted but the good news is that both boys are doing well,big sister and big brother are great helpers and Mom and Dad can handle it all! We have great faith in all of you and know that although each day may present its struggles you will get through it! We keep you in our thoughts and prayers! Always Diane and Dennis
I remember when the doctor said hopefully they will be home by Christmas and I was like OMG that is over a month away and then Christmas came and went
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