July 17, 2008

Max may not be coming home as soon as we thought. Tim and I are faced with another complicated decision that we will have to make for Max. Let me start by explaining that kids with chronic kidney failure have a risk of having a delay in their cognitive and motor skills. There have been studies that have shown that if dialysis is started within the first three months of life, that there is a chance that he may not have as much of a delay if any at all. Although, there isn't enough data to say that it will definitely work. So, we have to decide if we want to bring him home for a few weeks and then take him back in where he will then be re-admitted or if we want to go ahead and keep him in the hospital and start it sooner rather than later. As far as his kidneys go, it is still not an emergency that they get it started.

The other thing that we are being faced with is that Max had a few cultures taken yesterday. A blood culture, a fungal culture (blood), a culture of the fluid in his dialysis catheter and a fungal culture of the PD cath fluid. The fluid from his PD cath showed an elevated white blood cell count which indicates that there is an infection. The rise in his WBC rose even though he has been on an antiobiotic for 11days. As of this evening nothing had grown on those cultures telling us what kind of infection, but the nephrologists went ahead and ordered him a dose of a different kind of antibiotic that will treat another type of bacteria that the antibiotics that he has been on doesn't treat.

If all of his cultures come back negative and if we decide to go ahead and start the dialysis he should, hopefully, begin it sometime next week. If everything goes well and we don't run into anymore speed pumps with the dialysis, he should be discharged in about a month and a half once we get it started. At this point in time though, everything is pending until we get the results of his cultures.

Now that I threw all of the "ugh" info out, I am going to throw out that Max is doing WONDERFUL! He has hit the 9 pound marker and is growing beautifully. They have been condensing his feeds so that he has a point where he will feel hungry. He started on a continous feed. They then took him down to feeding for 2 hours and off for 1 hour. He then went to feeding for 90 minutes and off for 90 minutes. Today he got moved to feeding for an hour and off for 2 hours. Max is a spitty baby, so for him to make it to the one hour is a big step for him. He gets the feeling of being very full and feeling pretty hungry by the time it is time to "eat" again. He is still eating through his NG tube, but has been doing okay with the bottle as well. They are only giving him one window of opportunity to try from a bottle though. If Max is sleeping and you try to give him a bottle, you might as well forget it. HIs nurse is going to bring it up in rounds tomorrow to see if we can get a few more opportunities so that he can get the practice.

I think that is it! Phew, that was a lot. I hope no one minds my rambling on. I am using this blog sort of as my "journal" as well so that we can have a record of what all Max had to go through in his early months of life. I think it will be neat for him to see, when he gets older, how much of a fighter that he is :o)

Have a great weekend everyone!

3 comments:

Anonymous said...

Tough go, as I'm sure you are all anxious to have him home and finally away from the hospital and the hassle and inconvenience that goes along with it.

As I told Grandpa Livingston the other day when we were watching the Mustangs practice prior to departure for Daytona Beach - In a few years Max will be running around here with all of the other kids, none the worse for his expereinces, never knowing what it was that he went through when he was a "lucky" baby.

The tough part of this entire ordeal is the uncertainty and the anticipation of the day when he can go home and things can become to be "normal."

I'm sure that the good folks at Childrens' will do what is in the best interest of Max and the family.

Hang in there! In a few months, hopefully this will all be in the past and you can get on with the task of raising your son.

We're all rooting for you!

Dave Schabell

Rachael Schirano \\ Rachael Schirano Photography said...

i am so glad to hear that he is doing well! i will pray that his infection clears up quickly and that you guys are able to make your decision and be at peace with it. i know this must be difficult, but know that there are so many prayers being said for your little guy (and you too)!

Anonymous said...

I don't think I have ever seen a cuter baby boy! WOW! He is getting bigger and bigger, and we are so glad to hear about his wonderful progress. We continue to pray for that long-awaited day when the two of you get to bring your special little bundle home with you. I can only imagine what you guys are going through, but know that the prayers haven't ceased. We love you guys!

Chris and Jessica