To the hospital that is. Max will be admitted tomorrow at 3:00pm to restart his peritoneal dialysis for about the 8th time. The plan is to start him on 180mL of fluid for 12 hours. If everything goes well with that first run, they will increase his volume to 200mL for 12 hours for Friday night. If all goes well with that he will be discharged on Saturday after his scheduled hemo dialysis.
The hope is that he will come home on the 200mL for 12 hours prescription. This volume is a good volume for the stretching of his peritoneal cavity. They will keep him on this for a week or so and consider increasing the volume by 20mL once a week until they reach a goal of at least 300mL.
If everything continues to go well, they will slowly start weaning him from his hemo dialysis. It is all going to be a wait and see kind of game (we are very good at this game). They will be playing with his PD prescription if he isn't clearing his numbers with the decreased hemo.
Max's phosphorus is VERY high and has been for quite awhile now. If this number doesn't get lowered it could start calcifying Max's vessels. So I met with Dr. Dixon today to kind of go over the plan and this is what he came up with: If Max doesn't tolerate the PD from a lung standpoint. Meaning he is desating and needing oxygen or springs a leak somewhere in his body, then there is only one more thing that we can try to lower his phosphorus. This is another medication called Renagel. This is something that they have never tried before, but their hope is that when it gets mixed with his formula it will pull the phosphorus out of it. If this doesn't work, they will have to transplant. He can't go on too much longer with that number being so high.
Dr. Dixon is optimistic that PD is going to work this time. Unfortunately, I am not too convinced at this point. I hate to be negative, but we have had nothing but bad experiences with it and I am very nervous about it. I am petrified that he isn't going to be able to handle the added pressure in his abdomen and his little lungs are going to struggle. Which brings on even more worry, that I don't even like to think about, let alone write about on here.
Max has also been running a low grade fever (99-100.3) since Sunday morning. We are blaming them on his forth tooth that is trying to pop through. But today he started having higher ones (101-102.3), so of course they doctors ordered several cultures. They took blood, PD fluid and I asked for a urine sample to rule out a bladder infection or a UTI. He has been sleeping since we left the hospital this afternoon at 4pm.
I am awful when it comes to giving up my control to the nurses when we get admitted to the hospital, so I am not looking forward to this at all. I get frustrated with the monitors alarming at me because they're not picking up a heartrate or because it's reading that his heartrate is too high at 150 bpm. I get very frustrated when his feeds and meds are late and get off of our daily schedule. It drives me crazy that I can't get into the cart to get out his meds to give them to him or that we can't use our own feeding pump. I get frustrated when 3 different doctors come in at three different times starting at 5:30am to do the same things. They wake Max up to the point that he is fussing and leave him that way. I hate loosing the control of taking care of my own child. So, here is to patience. Patience and self control. Please God give me the patience to be able to do this again.
Prayer Request:
Please pray that everything goes well with the restart of the PD this week. Pray that Max tolerates it and that we can get him transitioned onto it to buy us a lot of time before having to do the transplant.
Please pray for Max's phosphorus to come down and stay down with the PD.
Please pray for Max to start feeling better and for something to show on his cultures so that we can treat it and move on.
Also, please pray for Tim and I that we have the strength and the patience (especially in me) to get through the next three days in the hospital.
I will keep all of you posted on how all of this goes. Oh! Please pray for success. We need this to work, for Max's health, we need this to work. No pressure.
4 comments:
I will definitely be thinking of Max, you and Tim over the next few days. Thanks for the updates and can't wait to hear the great news about his PD.
Denise
sending my prayers your way!!!! :)
I will certainly continue to keep you and Max in my prayers. God bless all of you! You have both been so strong throughout this past year. God looked for special parents for Max and he found the two of you. Hang in there!!
I am saying prayers for you and Max mama. I know all about relinquishing the control over their care. It's so hard to do. Praying for all around success with the PD. Logan still is not at 300 mL volume. They have stopped him at 250 mL because he's had 2 hernias at 250. They are considering going up to 300 in the near future but he's been on PD daily since Aug. Saying prayers for the phosphorous to go down!
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