August 29, 2008

Max's Professional Pictures

Here are a few of the pictures that Max had taken for his public debut. The story isn't posted yet, but it should be by the middle of September. I will post the website as soon as I get it. Enjoy!

Also, Max is doing "wonderful!" They are watching his kidney levels very closely (needle pricks every morning). As of right now, they are still wanting to hold off on dialysis for another week. As long as everything stays stable and he continues to gain weight this shouldn't be a problem. They are doing this to be sure that everything with the g-tube nissen is healed. Other than that he is as cute as ever! Smiling and flirting like usual. It was so funny, last night his nurse, Tonya, was talking to him and he would get this huge grin, shrug his shoulders and turn his head away from her like he was blushing. It was so cute. He is such a flirt :o)

Also, my cousin's twins were born yesterday. The ultrasound was wrong and both boys were in the 4 pound range. Sorry, I don't remember exact weights (something like 4 pounds 3 ounces and 4 pounds 15 ounces). As far as I know, they are both doing pretty well. I will get more details once things start to settle down for them. Thank you for the prayers!

Now, Enjoy the pictures!

August 27, 2008

You all have provided us with so many prayers over the past 7 months and I am now asking that you do so for my cousin Chrissy and her husband Eddie. They will be delivering their twin boys, 5 weeks early, tomorrow at 12:15pm. They did an amniocentesis on Monday to check for lung development and the bigger of the two boy's lungs are not where they should be. They have to take them though, because the smaller baby isn't growing like he should be. Please pray that all goes well with the delivery and that Noah and Nicholas do very well once they arrive.

It is greatly appreciated!

August 25, 2008

Thankfully Max had a pretty quiet weekend. I guess the biggest things to report are that from a nephrology standpoint, they are wanting to hold off on dialysis for as long as they can to give Max's g-tube nissen more time to heal. They are not wanting to risk what happened last week again. We are very thankful for that. Yes, this puts us back a couple of weeks, but we are not pushing any of it. Last week was one of the worst weeks in Max's 3 months of life, and we don't ever want to repeat it. Getting a call at 2:00 in the morning is a parent's worst nightmare. So, we are going to be very patient with the doctor's requests. The doctors are also slowing increasing his feeds by 1mL every 8 hours until they reach his goal of 30mL (1 ounce). If all goes well, we should hit that goal sometime tomorrow.

For a 104 days straight I have gotten up and gone to the hospital to see Max. On day 105, I get sick and decide that it's best to not go and risk getting him or any of the other babies sick :o( I didn't realize how hard it would be to go one day without seeing him. Hopefully I will be a little better tomorrow so that I can wear a mask and go visit him.

Max is going for a scope on Wednesday of his urethra. We are still waiting on details of what the urologist plans to do if he finds what he is looking for. I'll keep you posted.

Other than that ladies and gents, Max is doing pretty well. Hopefully we are now on the right track to getting him on dialysis, stabalizing his feeds and coming home. Have a great week!

Amy- sorry I didn't update over the weekend. I hope I didn't worry you too much :o) I'll see you tomorrow!

August 22, 2008

Quick update

It seems to be that the cause of the fluid in Max's lungs was dialysis. To say the least, too many things were started too quickly after the g-tube nissen surgery. What we think is happening, is that Max's belly area is inflamed from the surgery and pushing that dialysis fluid in forces it to go up into his lungs because it has no where else to go. So needless to say, dialysis was stopped yesterday morning to give him a couple days to heal. It will either be restarted tomorrow or Sunday- all depends on what his levels are. *Fingers crossed that this works*

Yesterday, Max was also doing a lot of gagging and retching, so they stopped his feeds for the evening to see if it would help any. It did a little, but he still gagged some. So, they called the surgeons to see what could be happening and they said that it's perfectly normal for him to be doing that after the nissen surgery. They said that the body has to adjust to the change. They don't want him doing this too much though because it risks unwrapping/ripping the nissen. If he continues to do it with his feeds they can give him Zofran to help with the nausea. His g-tube is leaking some and also looking a little infected through the dressing so surgery is going to take it off some time today to see how things are looking. It seems that every time you mess with it, Max cries. So something isn't right there.

Max is also having a VCUG done today. This is a dye study of his urinary tract. They are looking to see where the blockages are and to see if the urine is refluxing back up into his kidneys. Urology is simply trying to see what they are facing in the future.

Other than that, Max has been smiling and trying to be his normal self. He is still pretty cranky at times but we are hopefully moving past that with the changes that have been made for the day. Keep those fingers crossed that we don't have an infection in his g-tube to deal with. This was suppose to be a very easy surgery and recovery, but we are quickly learning that anything with Max is not easy. He likes to give his mommy and daddy a hard time. I have been told, "that's a boy for ya!" I guess this is just the beginning.

August 20, 2008

Our Max is Back!!!

Still keep those prayers coming though! We are not completely out of the woods just yet, but Max is doing much, much better. When I went in this morning, it was very hard to see him back to square one with the tube down his throat and sedated, but I got through it. I had several doctors come and talk to me about what the possibilities were on why this could be happening. So they determined that it could be caused by pancreatitis, another type of infection or dialysis fluid. They sent the fluid that they pulled off of his lungs for labs and tests and they came back preliminarily showing that it was dialysis fluid. We are waiting on another test to prove this even more. They are also still waiting to see if any of the cultures grow anything. They will watch those for 48 hours, but they went ahead and put him on an antibiotic to be treating anything that may be brewing in there.

I asked what could have caused the fluid overload and his attending physician said that the trauma to the abdominal region during the g-tube surgery could have caused some inflammation of the peritoneum, which caused the fluid to go up into his lungs since it had no where else to go. There are still a lot of questions though.

They did a follow up x-ray at 5:00 and it showed much improvement, even from the x-ray after the fluid taps. So, for 9 hours there was no accumulation of fluid around his lungs. This doesn't mean that it can't still happen though. Max began to wake up a little before the x-ray and believe it or not showed off a little bit of a smile from behind the tube. It was very sweet. He was kicking and throwing his little arms all over the place trying to extubate himself. He was well aware that there was a tube somewhere it didn't belong and he had plans of removing it. So, I had mentioned to his nurse that the only way they would be able to keep him intubated would be to drug him or to restrain him, so she brought it up to the doctors and they didn't want to do either of those since he was clinically doing well and that the x-ray showed much improvement. At 6:30pm they extubated him successfully and the old Max was back! He was one very happy little camper! He was all smiles and trying to talk to us through his raspy voice. He was doing his baby aerobics with ihs arms and legs. Around 8:30 I got him out of bed and as soon as he got comfortable in my arms he crashed! He was out like a light.

The plan for tomorrow is to see if anything has grown on the cultures and to do another follow up x-ray to see if any fluid has reaccumalated around his lungs. Keep those fingers crossed! He was suppose to go onto the cycler as well, but we will see what the nephrologist wants to do after all of the mayhem of the day. So, thank you thank you thank you for all of the added prayers from everyone. Please keep them coming, beacuse like I said before, we are still not out of the woods. Hopefully he will have an uneventful night and the x-ray will show no fluid tomorrow. I'll keep you posted!

Max needs extra prayers!

Wow if we didn't just take about 10 steps backwards. We got a call last night around 10:00 saying that Max was trying very hard to breath. He had a lot of pulling and tugging in his chest. He was also not able to keep his oxygen saturation levels up where their suppose to be. So the resident on call ordered a chest xray which showed fluid surrounding his lungs. They gave him a dose of Lasiks, which is a drug that flushes out extra fluid. They also increased the perscription of his dianeal fluid to help pull off some more fluid. They also put on a nasal cannula to help him with his sats.

We got another call at 2:00am from the resident saying that Max's heartrate was hanging out in the 200s and that he was trying even harder to breath. So they decided to intubate him. They also took another xray that showed that the fluid was still there. They said that it could be caused by two things: pnuemonia or an infection in his dialysis catheter. They took a ton of labs and cultures and we are still waiting on those results.

At 6:00 this morning, Tim called to check on him and his heartrate was still hanging out in the 200s. They also said that they pulled off too much fluid so they decreased the dialysis fluid perscription to see if it would help.

I called at 9:00am and an ultrasound and another xray showed the fluid still around his lungs. They decided to stick a needle in his chest to pull that fluid off. They ended up getting over 100mL of fluid from both sides total. His nurse said that his color was starting to pink up a little and that his heartrate was below 200 at 195- slowly coming down.

Max isn't happy about the intubation so they are trying to keep him somewhat sedated and comfortable, but his nurse said despite everything that they have given him he is still kicking and moving around.

So, at this point in time we have no idea what is causing this. I will keep everyone posted as we get new information. I don't know what we or Max has done to deserve all of this, but please continue to say prayers that our little boy pulls through once again showing us that he is a fighter.

August 16, 2008

The surgery went well

Max's surgery went well. There were no complications and he was able to come off of the vent without any problem. He has an epidural as his pain management. But, yesterday and last night he was pretty uncomfortable so he has been getting morphine as needed to help. He has also been rubbing his eyes a lot so we are starting to wonder if he has gotten the dreaded itchiness that epidurals can cause (I had this and it is horrible). He has also been running a slight fever since surgery, so they gave him Tylenol around 4:00 this morning. As if he hadn't been through enough they also drew blood work to make sure there isn't an infection brewing- this took four heal bricks to get.

He has a circle shaped bandage covering the incision and the gtube itself. It doesn't look as bad as I thought it would. He also has a tube, that has slight suction to it, in his nose going into his belly to keep the stomach decompressed. As long as everything goes well, they will start a low dosage of feeds either tomorrow or Monday. They will also restart dialysis on one of those two days as well. Tim and I are very glad that this surgery is finally over. Once Max recovers, we can move on to the next steps of getting him home.

We'll keep you posted! Thanks everyone!

August 13, 2008

I have to share this picture

I went in to see Max a couple of weeks ago and his nurse, Allyson, had this outfit on him. We both got a kick out of it. I guess he doesn't fit into the newborn size anymore!

Surgery was cancelled at the last minute

Okay... Max's feeds were stopped at midnight, dialysis was stopped at 6:00am, he was taken to the OR at 7:50am, I said my goodbyes at 7:55am, I was called up to the OR receptionist at 8:05am to tell me that the surgery was cancelled and Max was back up in the RCNIC at 8:10am. Why you may ask? Because a GI doctor that has NEVER seen Max or his chart thought that the surgery should be cancelled because kids with kidney failure could be uremic, which causes nausea and vomiting (rather than the reflux causing it). Did anyone think to call the nephrologist to see what his input on this was... NO! That is his line of work, but instead of asking what his thoughts were they cancelled the surgery! So, when I got back upstairs and was told of why this was happening, of course I broke down in tears and voiced my opinion. His attending physician was not happy, the nephrologist was not happy, the surgeon was not happy, and of course myself and the nurses were not happy. We were told that this shouldn't have happened and were apologized to more than enough. Max's nephrologist came up to talk to Tim and I and his exact words were, "the most frustrating part about all of this is that this is my line or work! If I had the slightest indication that Max was uremic I would have said something." He went on to say that out of all of the infants/kids that have end stage renal failure, only one, that he can think of, hasn't had a g-tube nissen put in place.

We were told of the options that we had. The first being we try to see if they can fit him into the OR schedule for later this week or we go ahead and get him switched to the cycler and go home- we would have to come back to have the surgery done with this option. At this point in time we were under the impression that the surgeon didn't have any openings for 4 weeks. The surgeon came up and told us that he was trying to squeeze him in and that he would have an answer for us by the end of the day. So, after getting up at 5:30am, I was not only tired but VERY cranky, so I went home and took a nap to calm down a little bit. I got a call at 1:00pm from the surgeon himself saying that he got him in at 7:30am Friday morning. I am very thankful that everyone is doing everything in their power to get this taken care of before we go home. I know that it is no one's fault but this GI guy that had absolutely no idea what was going on, but this is SO frustrating.

On a good note, our meeting with the doctors and nurses went great Monday! Everyone made it very clear that the main goal was to get Max home, even though no one wants to let him go. So, the final decision was that he should be able to come home in
two and a half to three weeks. They will do the surgery (at the time of the meeting was on Tuesday), they will train his nurses next Tuesday and Thursday (19th and 20th) on the cycler (so that he can stay in the RCNIC), and on Thursday the 21 he will be able to be put on the machine. From that point, they should only need 7-10 days to get him fully transitioned to it. Of course all of this is pending that all goes well with the surgery.

Max has his photo shoot tomorrow afternoon at 2:00. We were looking forward to not having the feeding tube taped to his fact, but that of course is not going to happen. So, I took a few pictures for all of you to see him without any tubes on his cheeks. As his attending physician says, "He is the cutest baby we have in the unit!"

August 10, 2008

Surgery is Tuesday Morning

Max is scheduled to go in for surgery to place the g-tube nissen on Tuesday morning at 7:45. There is one study that the surgeon wants to have done before the surgery happens. The only problem with this is that the study is suppose to last for 24 hours and they aren't going to start it until tomorrow sometime. So, I think their plan is to do it for 12 hours, but the attending physician still doesn't think the results will be back in time for the scheduled surgery time. The attending said that she is going to do everything that she possibly can to get this surgery done Tuesday, or else we will be postponed for another week and a half to two weeks. ERR! So there is a slight possibility that his surgery could be cancelled. ERR!

Myself and the physician are very frustrated with the scheduling conflicts! The study was suppose to be done on Friday, but it didn't for whatever reasons. I am just trying to be very patient with everyone involved.

We are also having a care conference tomorrow afternoon at 4:30 with all of his doctors, dialysis nurse and his RCNIC nurse, so we'll see how that goes. The plan is to finally have everyone on the same page at the same time- for once!

*sorry, I am a little bitter today*

Have a great week!

August 6, 2008

What a week...

...and it's only Wednesday! Let's see... Max is up to 110 mL of fluid for his dialysis. He will go up to 120 mL tomorrow, which is the amount that he needs to be put onto the cycler. Considering the cycler isn't in yet, the doctors will continue to increase him until we have all that is needed to transition him over.

I have been training this week on how to do the cycler for when Max gets to come home. It is fairly easy! The hardest part is making sure you do everything sterile to prevent the risk of infection. Unfortunately, Max's dialysis nurse and all of his NICU doctors and nurses are in a HUGE disagreement on where Max should go once he is put onto the machine. His attending physician wants him to stay where he is for several reasons, one being that he has more problems that need to be addressed, other than just the dialysis. The dialysis nurse is arguing that she doesn't have the time to train the nurses and that they only like one group of people to know how to use the machine because of the risk of infection. Our arguement is that we want him where he is. Tim and I feel like we have said all that we can to those that will make the final decision. We have trust in his doctors and nurses, so we hope that a silly training schedule isn't going to be what stops him from being where everyone knows him best. And that ladies and gents is all that I am going to say about that :o)

Moving on now... We have also decided to get a g-tube with a nissen placed into Max's stomach. The nissen part of this process is where they will wrap a part of his stomach around his esophagus. This will keep him from spitting up. He will actually not be able to spit up or burp with this technique. Tim and I were against this at first, but his attending physician and several others talked to us about the pros and cons. So we think that, in Max's case, the benefits outweigh the negatives. He had a series of x-rays done this morning to check the anatomy of his upper GI. This was done to show that he, in fact, does have reflux and to be sure that everything is developed correctly, etc. His nurse said that he was smiling at all of the doctors the whole time. She also told us that a security guard was standing at the elevator with her and Max when they were on their way back up to the RCNIC. The security guard said, "He is such a cutie" and started talking to him. Max, of course, began to smile at him. The guard said, "That made my day!" His nurse, smiled and said "He tends to have that affect on people." SO CUTE! Anyway, the g-tube surgery will be sometime next week. This will cause us to have to stop dialysis for 2 days, but this isn't a big deal at all. They will restart him at half of the volume he is at now for a day, then back up to his full volume and hopefully on the cycler the following day.

What else do I need to share? I have one more cute story. Max is beginning to find his voice, so the other day one of the nurses in his pod was talking to him and he was, of course, smiling at her. He then started to "talk" to her and he scared himself. They said that he kind of jumped a little then started looking around to see who it was :o) One more small detail: Max has hit the 10 pound mark! GO CHUNKY MONKEY GO!!! He is SO stinking cute! Anyway, I know that I have been saying this A LOT, but it looks like Max should be home by the end of August. As long as everything that is coming up goes as planned, we should have our family under one roof very soon!

I think that is it. Of course as soon as I hit "publish post" button I will think of something else. Oh well! Keep those prayers coming! We greatly appreciate them!