September 29, 2008

It wasn't a fluke

Shortly after restarting the dialysis yesterday, Max's scrotum swelled up again so they ordered another ultrasound to see if anything would show up this time. Again, the radiologist did not see a hernia or a hyrdocele so he feels that it is nothing that would require surgical repair. That is the positive, the negative is that we still have no idea what it is. The radiologist did say that the fluid is not in the scrotum itself, but in the tissue surrounding the scrotum. So, they did a blood test this morning to see if a particular level is low that would result in the tissue absorbing the fluid, but they didn't have the results back when I called to check on him today. They don't think that this is it due to the fact that he isn't swollen anywhere else on his body, but why not go ahead and rule it out I guess.

Leave it to Max to keep EVERYONE guessing on what is going on with him. It seems that everytime something goes wrong, it takes a week for the doctors to figure out what it is or it goes away and we never know what it was. It's so frustrating.

I'll keep you all posted as I get knew information.

September 28, 2008

Fundraiser for Max

To all of the ladies out there-

I am a member of a local message board for other mommies and I posted a question about how to throw a fundraiser and to just get some ideas for one that we are planning on having in early 2009. Another mommy on the board sells Arbonne beauty products and offered to donate to Max what she would make from her sales in September and October. She wanted me to pass on the following link to her website that explains the whole process to you. Please pass this on to anyone that you think may be interested in the products.

I am thanking you all in advance for helping us out with Max's medical supplies and bills. If you have any questions please don't hesitate to ask.

Thanks again! Beth
We ran into another road block on Friday when Max's scrotum swelled up to the size of an adult fist. According to the radiologist and urologist it isn't a hernia or a hydrocele which would mean no surgery. Myself, Tim and the nephrologist and physicians are not convinced of this yet. Once the dialysis was stopped his scrotom went back down to regular size within about 24 hours, which would mean that there is some kind of connection between his scrotom and his pertineal cavity. What they are going to do is restart the dialysis today and watch to see if it swells back up. If it does they will get an ultrasound immediately to see if the radiologist can see a hernia or hydrocele while the fluid is actually flowing in that direction.

So, Max was suppose to come home tomorrow (Monday), but once again that isn't going to happen. If (God forbid) Max needs another surgery, he will obviously be in the hospital for probably another month.

Keep your fingers crossed that it was just a fluke and nothing else will come from it. Please say an extra prayer that all goes well with this round of dialysis!

September 26, 2008


I am so excited to announce that Max is officially taking a full three ounces every three hours! Of course he is not wanting anything to do with the bottle, but that's okay! The best part about this is that he is tolerating it great! He used to be very fussy when it came to being fed, but it seems like he is doing a lot better with it!

He had he last dose of antibiotic yesterday. We still have no idea what caused all the mayhem of the 104 degree temp so the doctors are calling it a viral infection. We will never know.

From a dialysis standpoint, he is doing pretty good. The two days that he was off messed all of his levels up. The nephrology fellow and attending are trying to establish the right perscription that will work best for Max. The machine that Max is on isn't made for infants so they are having to figure out what mixture of fluids they need to put him on that will get his numbers down AND keep the machine happy all at the same time. Unfortunately, it's a very complicated process.

Have a great weekend everyone!!!

September 22, 2008

WOW! That was one very crappy week! I don't even know where to start. As I said on the previous post, Max ended up with a fever as high as 103.8 on Thursday night. They took cultures from his blood, urine, stool, dialysis solution, and upper respiratory system and everything came back negative. The only one we are still waiting on is the stool sample. So needless to say, no one has any idea what caused this madness.

We also had another scare when Max had an increase work of breathing on Friday night into Saturday morning. He was pulling and tugging to get a breath in, so they did a chest x-ray (three of them actually) and it showed fluid around his lungs. It wasn't nearly as much as before but it was still there. So they stopped the dialysis just in case that was the cause. They repeated the x-ray on Sunday and the fluid had decreased and the one this morning showed almost nothing. They are pretty sure it wasn't related to the dialysis, but then again, no one knows why it happened. So, they are restarting the dialysis today at a lower fill volume of 120mL over a 24 hour period. One of his levels jumped pretty high while he was off so they need to get that number down before they start to decrease the time that he is on it.

The entire week has been a complete emotional roller coaster ride! Tim has been working 16+ hour days every day since last Sunday, so he hasn't seen his little man in over a week and it's killing him. I went from filling out discharge papers and getting all of that stuff together to dealing with what in the hell is causing a 104 degree temperature and fluid in his lungs. Unfortunately, we still don't know and probably never will. On a positive note, Max is back to being himself, playing and smiling at everyone that comes to see him. His nurse was out taking care of her other patient when she heard him crying this morning. She said that when she went in to his room his eyes were filled with big crocodile tears, but as soon as she talked to him he smiled. He is a little spoiled when it comes to getting all of the attention from everyone in the RCNIC!

Have a great week everyone!

September 18, 2008

Max is doing better this morning. He reached a high temperature of 103.8 last night. His nurse undressed him and packed him in cold wash rags to try and get it down. It slowly decreased as the night went on. She said that his body broke out in white and red blotches, but she thinks this was just a reaction to how high his temp was. So this morning when I called his nurse said that his temp was 97.7 and he seemed to be doing better. She thinks that he is achey because when she lifted his arm to get his temp he cried. Although he doesn't like to have his temp taken anyway, but he usually doesn't fuss when you lift his arms either. She did say that he was very fussing during his assessment, but he managed to give out a few smiles afterwards. He was awake when I talked to her and he was stable, so hopefully we are overcoming it!

The doctors have no idea what caused this fever. As of this morning all of the cultures hadn't grown anything and his blood counts were normal. He did have his immunizations on Monday night, but they are not convinced that is what it's from because of how high the fever was. They are also talking about a viral infection, but no one really knows. They will take a renal panel tomorrow morning to see if they want to give another dose of the antiobiotics. The meds that they gave him can work against the kidneys, so they have to make sure that everything is still looking okay before they would repeat anything.

Like I said yesterday, I am not going to post when he is coming home. I will post once he is here, in our living room, so that I don't jinx ourselves for the fifth time. I will keep everyone updated on his progress!

Max's Story is online!

Copy and paste the following URL in your search browser and click on Max's name!

Nevermind :o(

Max isn't come home tomorrow :o( He spiked a 102.9 fever last night and still has it. They are in the process of drawing blood, urine and dialysis cultures to check for infection. They said that they would want to keep him in there for at least 48 hours on an antibiotic and obviously to get his temp down. So maybe early next week if everything comes back negative.

Personally though, I am finished getting excited. I don't know why this crap keeps happening that prevents us from bringing our child home, but I am done getting my hopes up. When he is literally in our living room then I will get excited.

Sorry for the Debbie Downer moment :o(

I will keep you all posted.

September 16, 2008

Small update!

Max has moved to his own private room in the RCNIC. We now have cable television and our own bathroom. They wanted us to stay overnight to be sure that we could troubleshoot and connect and disconnect Max from the cycler. We did this on Sunday night. It went great... no alarms or anything exciting. I only got about 2 hours of sleep, but Max slept like a rock and got about 12. He seems to like the peace and quiet.

Max also got his 4 month immunizations last night. Boy he was not a happy camper. I told Tim that he has to go to the next round, because it is heartbreaking. They also started to give him his epogen medicine via injection last night as well since we will have to do this at home.

Oh, I almost forgot! We were told on Sunday that there is nothing else that the doctor's have to do for Max that we can't do at home. So guess what everyone......MAX IS COMING HOME!!! Of course a hurricane has to come and put daddy to work at least 16 hours a day so we are going to wait probably until Friday so that Tim can be with us. We don't want to take that experience away from him since he has been waiting for this day as well.

Also, one of Max's renal levels is elevated so the nephrologists are playing around with some of his dialysis settings to see if they can get it lowered. This may mean that he comes home on a 20 hour cycle instead of a 16, but we will deal with that. They will slowly get him to where he has more time off of the machine. They are saying that he should still be able to head home by the end of this week as long as Tim and I are both comfortable with doing so.

Since this was sprung on us very quickly (we were told at least 2 weeks once he started on the cycler) we have a house to clean and sterilze and, I am thrilled to say, diapers to buy!!! I can't wait to go out and get the things that one needs for a baby at home. So if you can't tell, we are a little bit excited! Actually, to be honest, I am walking around on cloud nine and break down in tears every now and then. I cried last night before I went to bed thinking about how we have to say goodbye to our wonderful nurses and friends by the end of the week. One of Max's favorite night nurses had him last night and I about cried when she had to give him his shots considering it would be the last night she got to take care of him. She is back on Friday night, so I am pushing to not leave until she gets there so we can say goodbye. Okay, I'm crying again! (Tonya- we love you!)

Okay... we'll keep every posted on when the big day will be!!!!! We can't wait to show him off to everyone!

September 12, 2008

My Cousin's Twins

I took Noah and Nicholas's pictures last night. Here are a few of them!

Nicholas and Noah



Big News!!!

Max is on the cycler!!! Wednesday was the big day! They started him at a 24 hour cycle and he handled it great, but they were getting a negative output from him. No one really knows why he was putting out a lot more than they put in on the manual setup and not enough out on the machine. They say that this is a common problem with infants on the machine because it isn't made for babies. So the nurses and I have decided to invent a dialysis machine for babies :o) I just wonder why that hasn't been done yet.

So yesterday, they took him down to a 20 hour cycle and increased to a 2.5% glucose solution- this pulls more fluid off of the body. So I called this morning and he has a positive output of 40+mL. This means that they have pulled 40+mL more off of Max than what they put in him. Not that being negative is bad, but we would rather be on the positive side of the board.

The nephrology fellow does not want to rush anything because of how easily Max "springs a leak." They did a chest x-ray this morning and there is absolutely no fluid around his lungs- WOOHOO! My guess is that they will increase the amount of fluid that they put in from 120mL to 130mL today. Like I said, they are going to move slowly with all of this. Max's maximum (haha funny) volume for his weight is 200mL. We do not have to get to this before they would send him home.

Let's see... Tim and I celebrated our 2 year wedding anniversary on Tuesday! We didn't do much, but I am VERY proud to say that I made, for the very first time, BBQ ribs in the pressure cooker! They were FABULOUS! I even did corn on the cob! For those that don't know me all that well- I do not cook often :o)

Anyway, have a great weekend and enjoy the much needed rain!

September 5, 2008

Max at 4 months!

Well, as you can see in the video, Max took a bottle twice yesterday! Two 20mL bottles! This is a record for him. You have to offer it only on Max's terms though or else he wants nothing to do with it. When he starts shoving his hands into his mouth, offer a bottle :o)

Early in the week, they started to consolidate his feeds. We are very happy to say that Max is down to getting his feeds over a half an hour over the pump through his g-tube. The next step is a bolus feed. This is when they put the milk in a big syringe and let gravity take it to his belly- this happens in a much faster rate than the pump. Ideally, this is where they want him before he goes home.

Let's see. As of last night, Max was over 12 pounds. Take into consideration that he was full of his dialysis fluid his nurse, Tonya, weighed him. So we have to subtract some of that.

As far as the dialysis, he is doing pretty good with it. They started him out on Wednesday at 60mL of fluid and he is up to 100mL. They would like for him to be at a minimum of 120mL in order to go onto the cycler. His total goal is 200mL. If he continues to do well it looks like he may be on it sometime next week. They took a chest x-ray this morning to confirm that the fluid was staying where it's suppose to. The x-ray showed a little bit of fluid on the right side, but the nephrology fellow, Ben, said that this is totally normal for kids on PD. So no one is too worried about it. They will do a repeat x-ray in the morning to make sure it's not increasing. If they're not worried, then we're not worried.

Update on twins: Nicholas and Noah are doing well. They are still in the hospital just to work on their feeding skills and to make sure they are gaining weight. They should be home by early next week sometime. Thank you to all that prayed for them. I know that they appreciated it very much.

September 2, 2008

Big Day Today!!!

Max had a exciting day today! He got to leave his pod today for the first time (that didn't end in surgery)!!! The RCNIC has a play room for the older babies so that they can get out of their beds and get a look at a different environment. So when I showed up this afternoon they informed me that they were going to be doing this. I was so excited!!! We put him in a stroller and strolled him down the hall and back into the play room. So he also had his first stroller ride as well!

There was a large mirror on the wall at his level- he loved this! He was kind of interested in the toys, but more so with the Child Life woman talking to him. He was hamming it up with her. Very stinking cute!

Also, the nephrology fellow came to talk to me while we were playing and he said that surgery has cleared Max for dialysis. So that will be started tomorrow morning. The fellow also mentioned that his goal for this month is to get his "favorite" patient home!!!! We're keeping our fingers crossed!

Here are some new pictures from over the past few weeks! Enjoy!

All tuckered out

Joe Cool

First stroller ride

Playing in the play room