We have been in the hospital since Monday morning and there is no light at the end of the tunnel.
Max's surgery went very well on Monday afternoon and he pulled through like a champ. We tried out the catheter on Monday night with confidence that it was going to work and that we would be discharged on Tuesday. Well it didn't work. We are having the same problems that we had with the last catheter- it fills beautifully, drains well until you get half the volume back and then stops. So we had to end his therapy early, again. It was 3am by the time we got him disconnected and I was able to finally get some sleep. 6am comes around and a surgery resident comes in, turns on the biggest and brightest light that the room has to offer to look at Max's site. Well good morning to you too jerk. We were thankfully both able to fall back asleep for a couple more hours.
Tuesday was possibly the worst day thus far. Everyone wanted to try a manual PD but because it takes a lot of man hours, the nurses on the floor can't do it. We had to go to the PICU. I told the doctors that I knew how to do it since Max went home on it for a week when he was 5 months old. They all said that I couldn't do it because of what the policy says. So they put the orders in for us to be transferred to the PICU. Four hours later we were on our way. we got to the PICU and all hell broke loose. The nurse immediately started throwing a fit because there wasn't a nurse with Max and because he wasn't on any monitors. Then she threw a fit because Max was screaming and holding is breath because he had just woken up and was in a new environment with a new nurse who he had never seen before. So when she hook him up to the monitors, his sats were in the 50's. She freaked out and called the response team. I told her that he does this and that he will come up on his own. She refused and started shoving the mask in his face. I told her that the mask pisses him off even more and she wouldn't listen. I took it from her and told her that I would do it. I held it near his face so that he was at least getting a little oxygen and he ended up coming up on his own. This nurse was just flat out rude to both Max and I. She was then telling Max to sit still while she tried to get a blood pressure. I wanted to freaking punch her. What screaming two year old is going to sit still for a blood pressure? She went straight into the rules of the PICU- the parents aren't allowed to do any of the care, we aren't allowed to do the dialysis, vitals every hour, assessments every two, no food, only 3 visitors at a time, etc. I was fine with the "rules" but the way she said them made me even more ticked off. Just flat our rude! She then proceeded to tell me that she doesn't even know why we are here because they don't know how to do the manual dialysis either. I looked at her and said you have got to be freaking kidding me. By this point I was on the verge of tears. She finally said that she was going to leave us alone and let Max calm down. It's a damn good thing so left us alone for a bit. I needed to calm down myself.
The manager eventually came in and said, "So I hear that you have had a rough transition." You think? She apologized and told me that they were looking for the policy to see if we could go back to the floor and have me do the manual dialysis. About an hour later they came back in and said that the policy is a mess and needs to be rewritten. The first paragraph says that the nurses on the floor can't do the manual because of the man hours it entails. The paragraph right below that says that they can if they have the resources. In this case, I am the resource. I am infuriated at this point. WHY wasn't the policy pulled out and read before we went through the trouble of being forced to the PICU with this extremely rude nurse? I was absolutely infuriated at this point. The decision was finally made for us to stay in the PICU for the night on manual dialysis and we would be transferred back to the floor on Wednesday. Fine. We can deal with one night. Tim decided to let me go home and sleep since I was running on about 4 hours total. Thank you Tim.
Manual dialysis went beautifully throughout the night, so they wanted to try him on the cycler before we got moved back to the floor. We hooked him up to a four hour cycle and it too went beautifully. Max slept through two of his drains and it still worked. That was my biggest concern, since that is when we have the most problems. We were then transferred back to the floor with the nurses that we have grown to know and love. We got situated, again, and took Max for a walk. It was absolutely gorgeous yesterday so it was very nice to get him outside to enjoy it for a bit. We got back to our room and waited for the orders to be put in for the dialysis. I got to go home again to sleep while Tim stayed with Max.
That brings us to today, Thursday. I called Tim this morning to see how things went and he said that they had to stop it after his third cycle. The first drain is what ruined the treatment. The first drain left him with a negative UF of 114. His second drain went much better, but was still negative about 10. The third drain went just as well as the second but because he was already at a high negative UF the machine couldn't go any further. It's a safety mechanism that prevents over fill of the fluid.
I have been here since 7:45am and I am yet to see or hear from anyone with what the plan is. It's so frustrating that it takes them hours to decide on what to do.
I will update as soon as I know what the plan is.
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