July 31, 2008



Everything is still going great! Max has been on dialysis for a week and a half now and is still doing wonderful! He should be able to be switched over to the machine that will do the dialysis for him either next week or early the following week. Once he is on that, it will be another 2-3 weeks before he gets to come home.

Right now the biggest argument going on between the nephrologists and the attending physician is whether or not to move him to the floor where the nurses are experienced with the machine or to leave him in the RCNIC where the nurses know him best. Dialysis isn't seen very often in the RCNIC, so of course that is a bit of concern considering they would have to put all of his nurses through a quick training session. Tim and I want him to stay where he is for two reasons. First, like I mentioned, his nurses know him best. The same ones have been following him since he was admitted and they would know if something wasn't right with Max. The second reason is that we have become very attached to his nurses. They have become Max's adopted mommies and we don't want to say goodbye to them and get attached to another group of nurses and have to go through that again. I for one am having a very hard time even thinking about discharge day and having to say goodbye to our second family. Of course I want Max home, but I can't even think about not seeing his nurses every day. Ugh, I am moving on now :o(

Another reason why the attending physician wants him to stay in the RCNIC is because he has pretty bad reflux. He has absolutely no interest in taking the bottle and he has been gagging a lot followed by some spit up (which has gotten a lot better with his increased Prevacid). He is still gaining weight, but they're still not too happy with the reflux symptoms. We were also informed that he may not ever go to a bottle, which would mean that he would have the feeding tube until he is about a year old. The risk of this is oral aversion which could result in a G-tube. Kids with kidney failure, for some reason, tend to not like to eat and spit up more often than normal, so this is not too much of a surprise.

Not too much to report! OH WAIT!!! I was interviewed for an article that will be published in a newsletter that Children's sends out quarterly called, "Young and Healthy." We will also be doing a photo shoot on Monday, August 11. They will be posting the story on their website as well, so once I get the link to it I will post it for everyone to see. It's for the fall mailing so it may be a little while before I get it. Rick Neltner also came and got another set of pictures. Stay tuned for the video...

3 comments:

Anonymous said...

I feel your pain about leaving the NICU and missing all of his nurses. It has helped me to keep in touch through email and going up to the NICU for visits and pizza parties to meet new parents.

I am so glad Max is doing well on dialysis and you can see the light at the end of the tunnel.

Keep it up Max and you are one handsome boy!

Denise

Logan said...

That is so great for Max! I'm so happy you finally did another post. I was getting anxious. He is such a cutie. That's awesome about his patient story. Logan also had a patient story and it made Children's Homepage for a month and still on the website in the patient stories but it was for a bad car accident we were in. Max is getting a story for being a special baby, he's a star! Hang in there and stay strong! Beth and Tim, you are wonderful parents. Congrats again and can't wait to hear about the day when Max can come home.
Harmony, Eric, and Logan

Anonymous said...

That is such a beautiful slide-show. I found out about it at TAB's website message board and have watched the vid on YouTube several times with family members b/c I was so touched. Just wanted to say thanks for sharing and congrats for being picked by God as the perfect parents for Max! Much Love...