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...

July 24, 2008

Max is on day 4 of dialysis and so far things are going great (*knocking on wood*)! He started on only 30mL of fluid going into his little belly, but he is up to 60mL as of today. They have been able to bump him up by 10mL every day so far and he is tolerating it beautifully. Once he hits the 80mL mark, they will slowly move him over to the "cycler", which is the machine that he will come home on.

Max's nurses are continuing to show us how to do the things that we will have to do when he comes home. Today, I got to change his dialysis catheter dressing. This procedure is a totally sterile procedure- mask and everything! This is one of the most important things that we will have to do once a week to prevent any infections from occurring.

We still have to learn how to hook him up to the dialysis machine (which we will do once he gets on it). We also have to learn how to put his NG (feeding) tube in. Max has a good aim at getting his tiny little finger under it and yanking it out- he is quick too! Along with this, we have to learn how to program the feeding pump. I don't know what people are talking about when they say that babies don't come with an instruction manual!

We are finally starting to see that very dim light at the end of the tunnel :o) We are well on our way to having our family all under one roof! One thing that Tim and I have learned over the past 6 months is- patience!!!

July 22, 2008

Dialysis has been started...

again! Tim and I have decided to go ahead and start the dialysis, instead of bringing him home and having to take him back and leaving him. We feel that this is in the best interest for Max's long term cognitive outcome. So, dialysis was started yesterday afternoon and so far Max is doing great with it. His dialysis nurse said to expect a stay of another month and a half, but his nephrologist said that she is hoping to have him ready to go home in about three weeks. So we're preparing ourselves for the longer stay, but hoping for him to be home by the middle of August. We'll see!

The doctor's are very happy that we chose to start the PD because Max's head circumferance didn't grow over the past week, which is another indication that he is in renal failure. Like I have mentioned before, Max's growth is being monitored very closely to be sure that he is growing how they need him to be. We are working with a nutritionist that is making sure Max gets what he needs to gain the weight and length that he needs to stay healthy.

Max's urologist would like to do another scope of his bladder the week before he is to be discharged to get another look at how things are growing and developing. It was brought up to us that there is a possibiity that he will need bladder reconstruction surgery. The bladder of kids who have posterior urethral valves doesn't form how it is suppose to, so this is another possible surgery that would be done before his transplant. They would use part of his stomach for the reconstruction. This is down the road a bit, so we're not focusing on it too much at this point.

Other than that, he is just hanging out and flirting with all of his nurses. He is getting such a personality on him already. We crack up when he smiles because his chunky cheeks push his eyes closed. The nurses in his pod surround his bed when he is showing off those handsome gummy smiles. They don't get to see too many of them with the others babies that are there, since there are usually a lot younger than Max. He is such a ham!

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!

July 14, 2008

Homeward Bound!

Everyone is starting to talk about the big day when Max finally gets to come home! I have a meeting with this dialysis nurse to learn how to change his catheter dressing on Wednesday. All of his wonderful nurses are also getting us more involved with the things that we will have to do once he comes home. I also dropped his carseat off this evening so that they can fit him to it for his first car ride! Oh the little things that gets one very excited!

Max had his two month vaccines today. A total of four shots! The poor guy was not a happy camper. Although, he managed to be all smiles when his daddy showed up. I made sure that Max knew it was his birthday today, so I think he put on his happy face for him. Our chunkey monkey is also weighing in at 8 pounds 12 ounces and measuring 20 inches long.

July 12, 2008

New pictures...

Max is two months old today! I can't believe how fast it goes, even with him being in the hospital. Enjoy the oh-so-cute Max pictures!

Introducing our Budda Baby

Gotta love the budda belly!

So stinking cute!

July 11, 2008

Pray, Pray, Pray.......

....HARD!!! We were informed today that Max MIGHT be able to come home somewhere around Monday, July 21. He is on day 5 of a 14 day antibiotic and once he comes off of it they may be able to discharge him. All that Max has to do is continue to gain weight and keep his kidney levels around where they are now. If he does this the nephrologists will let him come home! He would come home without the dialysis because, as of right now, he doesn't need it. He will most likely come home with his feeding tube as well, but this is very minor!

So please continue to send those prayers our way. Max is doing wonderful because of all of your prayers and we have faith that God will bring him home to us VERY soon!

July 9, 2008

Dialysis is on hold

Max's nephrologists weren't happy about the small infection around his catheter site, so they decided to start him on two types of antibiotics. I was told by his resident that since he grew wonderfully over the course of the week that they won't be starting dialysis this week and that next week isn't definite yet either. So, we have absolutely no idea when Max will be able to come home.

Other than that, Max is doing AWESOME! He is slowly getting the hang of the bottle and is adding a few extra rolls to his adorable little body. He is up to 8 pounds 7 ounces as of Monday night! He is also measuring a little over 20 inches. That is all that I have to report to everyone.

Here are some new pictures! Enjoy!

This is Max and his Great-Grandma Mattie!

Max's first Fourth of July!

Daddy's little cuddlebug!

Max loves his boppy

July 2, 2008

Okay, we're back on!

Urology showed up about 8:00 last night to take a look at Max's vesticostomy. His nurse said that it had gone down tremendously but that they could still get the idea of what was going on. So, what is happening is intra abdominal pressure from the dialysis. It makes perfect sense. The added pressure from the fluids in his belly are pushing the bladder out through the hole. So, they are going to restart dialysis on Monday (another week behind unfortunately) and when they drain the fluid after it dwells for two hours the nurse has to check and see if it's protruding out. If it is, they simply have to push it back in. The chief of urology said that this is perfectly normal and that she isn't worried about it. The only other thing that they could do would be to have another abdominal surgery, and she doesn't want to put Max through that if it isn't absolutely necessary. If he were to show signs of infection then that would come back up as an option. Unfortunately though, the surgery would entail removing some of his bladder and obviously that is a last resort since his bladder volume is already on the low side. So, we push his bladder back into his belly and move on with the dialysis! Phew! I thought I was going to lose it when they told me they had to stop it again. All is well now :o)

As for the infection in his catheter site, the cultures came back showing a bacteria called something with a really long and complicated name. They said that it is an infection that is common when there is a hole in the belly that has a foreign object in it (g-tubes, catheters, etc). The infection is ONLY on the exterior surface and it requires a daily dressing change from his dialysis nurse (who nicknamed Max, "Dumpling") and polysporin put on it. Again, if he shows signs of an infection (fever, etc), they will take a blood culture and move forward with those results as necessary.

I think that is how the conversation ended with his resident last night! So here's to round three... DING, DING!

July 1, 2008

Another "speed bump"

Max was taken off of dialysis this morning, again. This time is because of an infection of some kind or something along those lines. His nurse noticed that his vesticostomy (hole in belly) was a lot redder and much bigger than it had been. Nephrology and urology were then contacted and she was told to stop the dialysis until further instructions were given from the chief of urology. When we left this evening, he had not been up to see Max. So, we are still waiting to get that ball rolling.

On a high note, and a strange one for that matter, Max has surprised us with a few squirts of pee coming from where it's suppose to. We (us, nurses, and doctors) were all under the impression that it was totally blocked. So, this is a huge surprise to all of us. Who would have thought that we would have been so excited to see pee come out of a penis! We are still not sure what the doctors are saying about this though. At the time I am writing this, we are still waiting for urology to take a look.

Other than that, Max is loosing his adorable, dark brown locks :o( Also, Rick Neltner has created another beautiful video for us. He will be posting it to the blog soon, so stay tuned for that!

I'll keep you all posted once we here what the next step is for the vesticostomy and dialysis (and the pee!)