Max turned 13 months old on Friday and he got the best gift of all! His labs were the best they've been in a very long time! So good that Daddy and Max were able to skip his Saturday hemo dialysis treatment!!! Now we just have to keep our fingers crossed and say a few extra prayers that we have found the right medication regimen and that the labs continue to go in the right direction.
The peritoneal dialysis continues to go well, with an alarm here or there. We are considered to be lucky as far as the alarms go. There is a 2 year old little boy who is on the PD and his parents get woke up 3-4 times a night because of low drain volume alarms. Of course it's just because he is laying on the tube and kinking it, but it's still exhausting. Needless to say, we're not complaining about our one every other night.
Let's see. We have Max's urology appointment with Dr. Sheldon on Friday to discuss the transplant. There are a lot of questions that need to be discussed at this meeting. Tim and I are at our wits end as far as not knowing whether the transplant will happen next week or 4 years from now. We are going to push to have them set a goal for where they want him to be. He has already hit the first goal of 10 kilos. We understand that they want him to be bigger for the simple fact that it's a lot easier to transplant into someone who is 20 kilos rather than 10. But it's also not fair to us to not know whether they are wanting to wait until he is 2 years old or 4 years old. We can't have our lives put on complete hold until then. We will go completely insane. I am already going nuts not having any goals or plans in place. I am a planner, so this is killing me. So I am going to push for these answers whether it be from Dr. Sheldon or I have to get in contact with his primary nephrologist to get them. I have to get some answers.
We have a few life decisions that need to be made and we can't make them without having more information about what the plan is for Max. I'll keep you all posted as we get more information.
Also, I am working on getting birthday pictures and video up, so stay tuned :o)
2 comments:
That sounds like a great plan! It really is hard to just not know what to plan for. And I'm so glad that Max's labs were looking so great!
Sounds like ya'll have had a great couple of days. Yay!!!
Post a Comment