Round two...

...ding, ding! Max started dialysis for the second time today. He seems to be doing very well with it so far. His nurse noticed that the site of the dialysis catheter had some puss around it, so they took a culture of it to see if there is an infection. Now that Max is on dialysis, they will be able to add some protein to his diet so that he will gain the weight that he needs to before he gets to come home. As of last night he weighed 7 pounds 13 ounces, so he has lost some over the past couple weeks.

Right now we are just sitting and waiting for him to learn how to drink from a bottle, gain weight and get adjusted with his dialysis before he can come home, so I don't have a whole lot to report (thankfully). Hopefully we will be introducing Max to the outside world by the end of July or early August.

Also, Max is celebrating his 7 week birthday today! He is getting so big so quickly!

Some people have asked me what song is playing in the first video of Max and it's "Swept Away" by The Avett Brothers.

The surgery went well

Max wasn't taken into surgery until 6:20pm but he was a trooper throughout the day without having had any food in his belly since midnight last night. The surgery went well and without any added complications! He was also able to come back to his "room" without any oxygen assistance. Max was doing great when we left- he was sleeping comfortably all swaddled up in his bed. He has one of his favorite night nurses taking care of him, so we know that he is in great hands.

We should be able to restart dialysis early next week!

Thanks for all of the extra prayers!

Max's surgery is today...

...anytime after 3:00pm. Stay tuned. I will update how he is doing this evening.

Please keep him in your prayers!

Just when things are going great...

...we come across another damn road block. When I called to check on Max last night his nurse said that when she went to drain the dialysis fluid out of his belly, she only got 25mL- they want to get somewhere around 60mL. She said that she left it open for an hour to see if it was just moving slowly (which it isn't suppose to). During that time she went to change his diaper and noticed that his scrotum was HUGE and that he was peeing a lot more than what is normal for him. She called the doctor's on call and they came to see him. They said that it could be a hernia and to call the nephrologist to get their opinion. She agreed that it could be that as well. His nurse was told to stop the dialysis for the night and that they would see what the next step would be in the morning during rounds.

So this morning they decided that it could be one of two things- a hydrocele or a hernia. A surgeon is scheduled to come by today to see what he/she thinks. A few tests will be run to determine which one it is and then, once again, Max will go in for a "quick, 5 minute" surgery.

So, please keep Max in your thoughts and prayers. I don't know how many more road blocks we can handle, but we are thankful that it is a minor one. They will correct it and we will move forward with dialysis and bring him home as soon as possible.

Thanks everyone!

He's doing great- and is 6 weeks old today!

After a misunderstanding between two nurses we finally got the dialysis started. Max was hooked up to the machine at 1:00pm and when the nurse went to drain the fluids from his belly at 5:00pm she realized that the fluids weren't added in the first place. She thought the nurse from nephrology had done it and vice versa. So, Max didn't get started until 5:00. He was wide awake from the time I got there until right before I left. He looked great

Anyway, when Tim and I left this evening Max was sound asleep. They put the 70mL of fluid into his belly and he seemed to be doing very well. His breathing didn't increase too much with the added pressure on his diaphragm either. As soon as they got him started, the speech therapist came and worked with him on his oral feeds. She started by dipping his pacifier into the milk and giving it to him. Once he showed interest with this, she used a syringe and put a few drops of milk around his lips as he sucked on his paci. He seemed to enjoy this as well, so she moved onto the bottle. She tips the bottle downward so that there isn't any milk in the nipple, once he begins sucking on it she tips it up to give him a taste. He did very well with this. He sort of got a bitter beer face when he got the milk through the bottle, but kept showing interest. He took a whopping 3mL! Then he spit it all back up :o( The added pressure from the dialysis in his belly, plus his continuous feeds and the bottle feed was too much for him. It must have wore him out, because he fell right to sleep after we cleaned him up. Overall though, the speech therapist was very happy with him.

Anyway, the nephrologist fellow came to speak to me today. Unfortunately, we are still playing the wait and see game. We have a feeling that we will be playing this game for a very long time. Basically, they are going to do daily renal blood tests to check how his levels are doing. They will then adjust the dialysis to what he needs. There is a possibility that the dialysis could improve Max's kidney function to the point he could come off of it for a while before his transplant. She said that if it did, she would anticipate that he would still need the transplant anywhere from the ages of 1-5 years old. She also thinks it may be a little longer than 3-4 weeks before he comes home. Who knows, he may surprise all of us and do great! But, we are going to just say that by the end of August, Max should be home with us.

Max is becoming very aware of his surroundings. It is so cute to see him wide awake, looking around and taking it all in. He is doing wonderful and we are so blessed to have this little miracle man. The doctor's are very happy with his respiratory status, and that alone is a miracle!

We were reminded tonight that this is just the beginning of a very long road. Tim and I knew this from the beginning and we are ready to take it head on. If we didn't think we could do this, we obviously wouldn't have gone down the road that we did with the open fetal surgery. Every day when I look at Max I am reminded of how lucky we are that we had that option open to us. When he stairs into my eyes he reminds me that life is too short to sweat the small stuff. My 6 week old son is my hero and has been since before he was born. I look up to him for how much strength he has. Max has been a trooper through all that he has endured in this short life and for that he will always be mommy's hero.

Monday is the big day!

Max will be starting dialysis on Monday (6/23)! I spoke with the attending physician tonight and when she asked me if I had any questions, of course I asked, "what needs to be done in order for us to take him home?" Her reply was that he needed to work on his feeds and hopefully be able to do this from a bottle. She mentioned that if he can't get all of his nutrition orally then we could come home with the NG tube that he currently has (through his nose into his belly). This is obviously a lot better than the g-tube that would be placed through his belly. The other thing that needed to be accomplished was the dialysis. She said to expect another 3-4 weeks before he gets to come home! This is huge! She said it like it was a really long time from now, but we are thrilled to hear that it's that soon. Of course, we aren't getting too excited because we don't want to be let down if it doesn't happen- but we are so happy to have some kind of a plan. If he does get to come home 3 weeks from Monday, that would be Tim's 27th birthday! How awesome would that be!!!

Also wanted to let everyone know that Max is doing a lot better with his withdrawal. He is still on the Methadone and will be for a few more weeks- could possibly come home on it if he doesn't take to the weaning all that well. They had to spread it out to four times a day instead of two because he wasn't liking the fact that he wasn't getting his "drugs" as often as he would like. They are going to keep him on the higher dose for a few days while they start the dialysis because it could be a little painful for him in the beginning. They will slowly wean him from there.

I guess those are the main things for now. Oh wait! He got moved back up into his big boy bed! He had to be put back into the isolette while he was on the vent, but he has graduated again! He also smiled at us quite a few times while we were talking to him tonight. We still aren't sure if it was gas or if he is starting to become more aware, but we'll take it :o) We were told by my dad, "Pipi", that we needed to add a new picture to the blog, so here it is!


That's it for now! Ta Ta.

Max is off the vent...again!

Max was taken off of the vent yesterday (Wednesday) after a second scope on Tuesday showed that things were looking good with his "new" airway. There was a little bit of swelling, so they gave him two doses of steroids and left him on the vent until the next day. He is doing very well without needing any assistance.

When I went in to see him after he was extubated, he was very cranky and fidgety. He was also doing a lot of gagging. Nothing would calm him down. So they did an assessment type test to see if he could possibly be going through withdraw from being on the verced and morphine for eleven days or so. The results showed that he is. So they will be giving him a dose of Methadone twice a day for a few days to help him get past it. The poor little guy is miserable, so hopefully this will work and we will have our little cuddle bug back.

It looks like nephrology is going to start dialysis next week, most likely on Monday. It is nothing that is an emergency, but his levels have stabilized which is what they were sort of waiting for. Hopefully this means that they will only need the two or three weeks to get everything figured out with how much he needs and how often, then we can bring him home! He is gaining the weight that they wanted him too as well! We still have to work on feeding orally instead of with the feeding tube. I would assume that once his throat heals a little more (from having the tube in there for so long and from the surgery)that they will try to introduce the bottle to him again.

So, a few prayer requests would be for dialysis to go well and for him to be able to handle it, that he starts eating from a bottle so that we don't have to come home with a g-tube, for him to continue to gain weight, and for us to not run into anymore "speed bumps."

Thank you again for everything!

Beth, Tim and Max

Max is 1 Month Old Today!

What a month this little boy has had! Max has been doing very well since his surgery. Despite a few scares with him dropping his oxygen saturation and heart rate, things have been pretty quiet. He is still sedated on both the versed and morphine and will be until they extubate him. He is on the "on-call" list to have his scope done on Tuesday. Keep those fingers crossed that all goes well and that he comes off the vent then.

It is still unknown exactly when dialysis will start, but it looks like it will take place sometime next week. His levels have finally started to level out. They have actually gotten better, still not great though. But it will give the doctors a better idea of how much dialysis he will need.

Max's right lung collapsed again on Tuesday, but it has reopened as of yesterday (Wednesday). They just had to up the pressure of the ventilator and it popped right back open. They think this could have been some of the cause for the drops in his heart rate and sats. He hasn't had any nearly as bad as what they were.

Also, Max's weight as of last night was on the brinks of 8 pounds. Again, we aren't sure how much of this is fluid, but he doesn't look nearly as swollen as he did over the weekend and earlier in the week. They have increased the number of calories they are adding to my breast milk and I think it is working :o)

Other than that, I think that is all that I have to report. I will continue to keep everyone posted on Max's progress.

Thanks again!
Beth, Tim and Max

6 more days...

...until we get the ventilator tube out. Max is doing pretty well, but the poor little guy is on a verced and morphine drip to keep him sedated. He seems to be pretty comfortable- maybe a little too comfortable. When he gets mad or upset about something he drops his heart rate and oxygen saturation rates down VERY low (in the teens). They have had to bag him a few times to get them back up. He is not able to tell us that he is upset by crying or even making faces so he holds his breath which is causing the decels. They are not worried about it, but he has scared mommy and daddy quite a bit while we were there.

The doctors will be removing a small drainage tube that is in the neck incision today and it looks like next Monday they will be doing another scope to see if everything is healing correctly and hopefully be removing the vent. It is so hard to see him like this, but we know that it is what needs to be done to be sure that everything stays where it needs to be and heals correctly.

They have continued to give him his normal about of breastmilk through a pump that gives him 21 mL an hour. They are fortifing it to give him some extra calories as well. Sunday nights weight was 7 pounds 12 ounces, BUT we think this could be because of him holding onto a lot of fluids from the surgery. We'll get a better idea of his weight when he comes off of the IV fluids.

Other than that, he is doing well. We are waiting to get him back to how he was last Thursday. It's hard not being able to hold him and we try not to touch him too much because he tries to move around when we do. It's going to be a long 6 days, but hopefully the procedure is successful and we can move forward.

Thanks for all of the prayers!

Beth, Tim and Max

Surgery Update

Okay, where do I start. Everything went well! There was a small bump in the road with the scope of Max's airway. We found out that he has subglottic stenosis which is a fancy term for a narrow airway. This explains why he had stridor (loud breathing) and was tugging when he took a breath. We were given three options: 1. leave it and see how he does, but they would not be able to continue with the catheter placement. The airway was so small that they couldn't intubate him. 2. Place a trach in his throat. This is ours and the doctor's last choice. 3. We choice to go with this one. They did what is called a cricoid split. A small incision was made in Max's throat and the cricoid cartilage was split to open up his airway. He was then intubated and will be for the next 10 days. After the 10 days is up they will sedate him once again and do another scope to see how things have healed. He will then be extubated in hopes that everything goes as planned. The "new" airway will heal around the tube and leave him with a bigger hole to breath from. There is a 90% success rate with this procedure, so we are saying 10x as many prayers and keeping our fingers crossed. This website will help describe what they did a little better, http://www.tracheostomy.com/resources/surgery/cricoid.htm

Other than this, everything went as planned. The scope of Max's bladder and urethra shows that the blockage that caused this whole mess is still there. They will remove this when they decide to break down his vesticostomy. We will not know the function of Max's bladder until this is done. The peritoneal dialysis (PD) catheter placement went as planned without any complications. They do not want to have to use this for at least a week so that it has time to heal.

Max was doing well when we left this evening. He is obviously heavily sedated and will be for the next 10 days when they remove the ventilator. They need him to move as little as possible for the sake of the vent tube. If he pulls this out we are in a whole new world of trouble. We are not allowed to hold him and they will keep him sedated with a morphine drip. We believe that this finding is a blessing in disguise. Of course we thought and hoped that they were going to find that everything was inflamed due to the reflux, but we will deal with this and hope and pray that the procedure is successful. The doctor mentioned that it is encouraging to know that it was his airway and not necessarily his lungs causing the breathing problems. "We can go in and widen an airway, we can't make a bad lung better." Don't get me wrong though, Max still has small lungs, but the small airway didn't help him out at all. We are staying positive and hoping that all of this will be behind us soon. We are anxiously waiting to check the respiratory complications off of our list of things to deal with before he gets to come home.

Keep those prayers coming :o)

Beth, Tim and Max

Max is having surgery tomorrow :o(

Max is going into surgery tomorrow to place a catheter into his abdominal cavity that will be used for his peritoneal dialysis. They are not in urgent need of starting it yet, but they like for the catheter to heal before they do use it. Max's levels aren't really getting any better, although the urine that was backed up into his left kidney is better. They are thinking that if the levels stay where they are that he may be starting it some time next week.

One of the nephrologist and resident talked to Tim and I yesterday a little about what needs to be accomplished before Max gets to come home. When they start the dialysis, they need 2-3 weeks to figure out how much he actually needs and to be able to start him on the machine that we will eventually bring home with us. His vesticostomy will stay open when he is discharged, so he will still urinate through that rather than through his penis. Max is having a hard time gaining weight as well. He has been spitting up quite a bit, so they are starting him on Protonix to see if it is reflux. He is also breathing loudly (sounds congested) and they think this could be caused by reflux as well. They are planning to do a scope to see if his airway is swollen or if it looks like something else is wrong. He also needs to learn to eat from a bottle. He is doing okay with this, but it wears him out rather quickly and it increases his breathing rate a bit. Unfortunately, it is possible that we could be coming home with a G-Tube that will help him receive the nutrients that he needs since the kidneys are "stealing" some of them away from the rest of the body.

I am going to go ahead and throw this out there so that everyone knows. One of the highest risks for Max's catheter is infection, so when he does come home and starts receiving visitors we ask that if you are sick or have any signs of getting sick that you postpone your visit. We will also have very strict hand washing rules with him. He is going to have two, possibly three, holes in his abdominal area (catheter, vesticostomy, g-tube)and we cannot run ANY risks of them getting infected. This is life threatening to him if it happens. Please understand that we want you all to be able to visit him, but we need him to be and to stay as healthy as possible so that we don't end up back at Children's. If anyone has any questions please don't hesitate to ask.

Also, we were informed again that we will be the best candidates for Max as far as donating a kidney. The doctor told us to make sure to eat healthy, to exercise, and overall be in good health. We won't start the testing for this for about another year or so.

Please keep Max in your prayers that all goes well tomorrow and that they're aren't any complications with the surgery. I will post another update as soon as I get the chance.

Thank you!
Beth, Tim and Max

Max is 3 weeks old!

Max's first smile to be captured on camera. He is lounging in his boppy on his Daddy's lap.
Tim and I are very excited to announce that Mr. max came off of his oxygen yesterday! He is doing awesome with his breathing and keep his oxygen saturation where it needs to be. Max's resident stopped by his bedside yesterday to let us know that his lungs are looking VERY encouraging! He is such a little fighter. We are so excited to see his cute little (chubby) face without the nasal cannula in his nose.

Max is also up to 2 full ounces of breast milk as well. He was having difficulty keeping it all down so the doctors decided to feed him with a pump that would feed him over the course of an hour (he is now down to a half hour). The speech therapist and occupational therapist were there today to start him on bottle feeds, but Max got the hiccups and was breathing a little too fast so they didn't want to risk the chance of the milk "going down the wrong pipe." They gave him a little bit of a taste by placing a few drops on his pacifier and he seemed to enjoy that. We will try this again tomorrow!

As for Max's kidneys, we are still playing that oh-so-lovely game of wait and see. His levels went up drastically and an ultrasound showed that is left kidney was holding a little more urine than it should have been. They decided to try placing a catheter (just the tubing) into his vesticostomy to see if it would drain any better. This is basically just making the opening in his bladder a little bigger for the urine to flow out. He will have another ultrasound on Wednesday to see if it's any better. They will also be checking his levels again. If things are not better, then dialysis will probably be started sooner rather than later. I did have a meeting with one of the nephrologist (kidney doc) and he went over the long term effects for kids with chronic kidney disease, all of the meds that he will be on while on dialysis, the risks that are associated with the type of dialysis he will be doing, transplant options, etc. It's a lot of info, but one of the more important pieces of info is that they usually only accept adult kidney donors (live donors. The only way they will take a child's kidney is if that child had passed away. This is another reason why we need Max to get big and strong, so that they can fit an adult kidney into his little body. They won't do a transplant until he is about 16-25 pounds or so. The bigger the better!

Max is also going through physical therapy to try and loosen up his hip and foot muscles. He likes to keep his ankles crossed because that is how he was "stuck" in the womb. His right hip is also turned in a little, so they are trying to work that. If this doesn't work, then he will have to wear a splint for a little while. Obviously, this is the least of our worries.

One more big deal for the week is that Max has graduated to a big boy crib! He is no longer in the "incubator" looking bed :o) He is also becoming a lot more alert and staying awake for an hour or more at a time.

I believe that is it for now. Enjoy his 3 weeks pictures! He gets cuter every day :o)

Max without his nasal cannula!!!!
Max and Mommy had just spent an hour cuddling. He was breathing a little fast before I picked him up and it slowed down as soon as I layed him on my chest. He is such a cuddlebug. He looked so cute when I layed him back in bed :o)