November 27, 2008

Happy Thanksgiving

We just wanted to wish everyone a Happy Thanksgiving. Boy do we have a ton of things to be thankful for this year. The first being that our little boy is alive and doing well. The fact that we have him here with us for the holidays is a miracle. All of the odds were against Max in the beginning of his life and he proved them all wrong. Someone told me a couple of weeks ago, if you didn't believe in God before, you should now. That comment is an absolute fact. Someone much more superior to all of us here on earth is watching over Max and helped him defy all of those odds. And that ladies and gentlemen is what Tim and myself are thankful for this Thanksgiving.

We are also very thankful for our support team that has gotten us through this entire process. So, a very big thank you to all of you! We appreciate all that each and everyone of you has done for us. You will never know how much it all means to us. There is nothing that we will be able to do to show our gratitude.

Again, we have to throw out a HUGE thank you to the medical team and nurses for all that they did for Max during his 6 month stay in the RCNIC. It brings tears to my eyes just to think about what you ladies did for him. You all are miracle workers and should be very proud of yourselves for what you do. We love you all and are so very grateful that you were brought into our lives.

One more group of people that we have to be thankful for are our parents. My goodness, what we wouldn't do without our parents. They taught us how to be strong in difficult situations and our strength is what has gotten us through all of this. They also taught us one of the most important lessons in life and that is to stay positive. A negative attitude isn't going to get you anywhere. They have stood by us since the beginning, and we are very grateful. Max is a very lucky little boy to have such wonderful grandparents in his life.

Thanksgiving 2008 will be a very special holiday for us and it will be remembered forever as the year of miracles.

Happy Thanksgiving!

November 25, 2008

Bad Mommy Award goes to... :o( So Max and I were out Christmas shopping and getting his pictures taken. We had one last stop to make and it was to Target. I pulled into a parking space, sat my keys in my lap, threw my purse over my shoulder, popped the drunk, locked the doors and got out of the car. I then proceeded to get Max's stroller out of the trunk and closed it. I then realized that I wouldn't be able to put the items that we were buying in the stroller so I decided to put the stroller back and use the cart in the store. I went to get my keys out of my purse to open the trunk back up and low and behold they are sitting on my seat- right where I left them. Oh yes ladies and gentlemen.... I locked Max in the car!!! So as I began to panic I called Tim to see what I needed to do. I swear, I think your mind goes dumb when you are panicking like that. So Tim told me the obvious- call the non emergent Florence Police Department. I did this and I waited and froze my butt off. I am a dummy and didn't have a coat, gloves...NOTHING! BRRR! Max was so stinkin tired by this point in the day that I thought for sure that he would be screaming because the car was standing still. No... Max sat in his carseat and smiled and laughed at me as I sat on the outside shivering. It's like he knew what I had done and he was making fun of me.

The officer arrived with his metal thing and shoved in between the window and door and couldn't get it unlocked. About 5 minutes later another cruiser showed up with two more police officers. They had a different metal pole thing and were able to shove it through the side of the window. They couldn't get the door unlocked either. About 10 minutes passed and they decided to hook the keys that were in plain sight (so aggravating) and some how pulled them through the window jam. I haven't gotten to see if there was any damage since it was dark out. I got Max out of the car and we continued with our shopping trip. Tim laughs that my bad mommy moment didn't spoil my interest in going on in to Target. I was already there though :o)

Phew.... at least he wasn't screaming the whole time.

A couple of updates:

Max has his 7th surgery scheduled for Thursday, January 22. This surgery is to close his vesticostomy (the hole that he pees from).

Nephrology is in the process of get approval from insurance to start Max on a growth hormone. They are wanting to do this to help Max grow longer so that we can get a tranplant ASAP.

I sat down with the transplant nurse last week to go over what to expect in the next 6 months. They are also getting approval from insurance to start the lab work on Max. Once they get his labs they will move forward with getting mine and Tim's labs. It's a very long process and it usually takes 4-6 months from the start of testing to the transplant.

I also want to thank the many people who have volunteered to donate their blood to Max. We found out that the cost is $110 everytime that person would give blood. The nephrology fellow also found out that the blood is only good for 42 days and he feels that a lot of it would go to waste. He said that we would hold off for right now. He doesn't know how many transfusions Max will need, so he said that we will wait and see if we want to move forward with it. They have to try to get him without one for 2 weeks so that we can draw is labs for transplant testing. They can't do it with a recent transfusion, for obvious reasons.

I think that is all folks. I hope you all have a great rest of the week :o)

November 20, 2008

Scary day yesterday

So Max and I were having a great day yesterday. We got up, got ready and headed to the hospital for dialysis. They hooked him up, he fell asleep without any fussing, he was tolerating the blood transfusion well and I got a massage- everything was going perfect.

Max's dialysis machine kept alarming saying that there were air bubbles in his line, so the nurse switched them. This is a common thing for them to have to do with the babies lines since they are so tiny. Max starting fussing a little as she was doing this so I put his little silky over his head for comfort. I am not sure what made me check his lines, but I lifted his silky and the sheet under his head was covered in blood. I shrieked in fear that he was bleeding everywhere. Within seconds, the nurses were there applying pressure to Max's catheter site and disconnecting him from the dialysis machine. The nephrology fellow ran over to see what was going on. I moved out of the way, was given a face mask and a chair. I sat there in horror hearing Max's screams and his face become covered in blood from the nurses hands. They took the dressing off of his site and noticed that they bleeding had stopped. The catheter was still in the neck, but they wanted to do an xray to see the placement of it within his vascular system. Max's attending nephrologist also came to the bedside to assess the situation. Once the xray showed that the placement looked fine they decided to call the surgeon who put the catheter in. Surgery said to get a dye study to make sure of the placement and to make sure there wasn't any cracks in the cath. So we waited about an hour before we were called to go to radiology. I called Tim at this point and he was going to meet us there. The doctors wanted to give Max a little of the blood that was left from the transfusion to replace what he had lost- some of the nurses guessed that he lost anywhere from 50-100mL. Max smiled the whole time we were waiting for the radiologist. I'm telling ya... he likes to see what people will do if he switches things up a bit. So the radiologist got there, put the dye in and we watched it go beautifully through the vein just like it was suppose to.

So, what caused all of this mayhem? We have do not know for sure. The dialysis team has their guesses, but like many other things, we will never know. Once again, Max has stumped the doctors. I had nightmares last night that blood was profusely coming out of his neck. At one point during the night I literally jumped out of bed to check on him because I thought we was bleeding to death. Drama, drama, drama.

Dialysis today started perfectly and ended perfectly. Max slept the entire 2 1/2 hours without too much fussing. We wasn't happy at the end when we had to wake him up to weigh him and get him dressed to go home though. Needless to say, Max and mommy came home and we BOTH took a nap.

November 17, 2008

Having a baby at home is exhausting, but we are loving every minute of it! Max is doing great. We go to dialysis four times a week (MWTHF) for about 3.5-4 hours. Max is on the machine for 2.5 or so, but with prep time and the time it takes to get him on and off, change his catheter dressing, etc, etc we are there for a bit longer. Unfortunately, Max seems to be very fussy while he is being dialyzed. I think it's a mixture of nap time, having tubes coming out of his neck and the cramping the dialysis can cause. Once we get him to sleep though, he seems to do pretty well. Overall, I would call hemo dialysis a success.

I was informed today that Max will most likely need more blood transfusions, but they are not wanting him to get blood from several different donors. I don't know the main reason for this but, but it has something to do with a potential problem when it comes time for the transplant. So, they told us that we could find someone that is non blood related with a blood type of A+ that would be willing to donate blood so that he would be getting it from one person and one person only. They didn't know the logistics of it, so I have to get in contact with Hoxworth to see what steps we need to take. On my list of to do's.

We also got a call from his urologist saying that they are wanting to do a scope to check out the urinary tract. If they found something that needed to be fixed, they would do another surgery to fix that and then close up his vesticostomy (the hole in his belly that he urinates from). One more surgery, but one less hole in his belly! I have to get in contact with his office tomorrow to see what we need to do to get this ball rolling. Another item on my to do list.

I got introduced to my new favorite person today. Her name is Peggy and she is the holistic and healing touch nurse in the nephrology department. She gives massages to the patients that are on dialysis. She also gives massages to the parents that are there waiting. Oh yes.... I got my very first massage today and she told me that she will continue to give me one once a week. It was so wonderful! Max gets his on Wednesday. Tim was a little jealous :o)

Some not so fun news... Max goes for his six month immunizations tomorrow morning and I am FREAKING OUT! If you remember, he got a 104 degree fever with the last set and personally I am not ready for him to go back into the hospital for it again. Praying oh-so-hard that we get through this. Tylenol is already in the diaper bag to be given as we are walking in. I'll keep you posted.

I think that is it for now. I am off to do dishes, laundry, pull up meds, pack the diaper bag, and change Max's diaper one more time for the night. We'll talk to you all very soon!

RCNIC Nurses:
We are in the Dialysis Unit M-W-F around 11:45am and Thursdays at 8:00am. If you would like to come down and see Max, we are there until about 3:30pm on MWF and 12pm on Thursdays. We could also come up to see you, just let me know what you would like for me to do :o) Max misses you all very much! We'll see you all soon!

November 13, 2008

I'm 6 months old!!!

Cuddling with my blankie on one of my last nights at Cincinnati Children's Hospital RCNIC

Round two... ding, ding. This is me getting ready to go home!

Don't talk to me while I am watching my Tuesday morning cartoons!

So this is what it's like to be an outpatient!

My first tastes of green beans

YUCK! Green beans are nasty (he gagged and screamed his head off)

I'm not too sure about this Jumperoo thing. This holding my own head up is hard work

I got to celebrate Halloween in November, since I was sick in October. Woof Woof!

My first errand with mommy. I'm not sleeping... I am so embarrassed that my mommy took a picture of me in front of Target. Geez! (11/13/08)

November 12, 2008

I will work on getting some pictures up tonight. We have to be at the hospital at 10am for a blood transfusion and dialysis, so I will work on it when I get home this evening!

Have a great day!

November 11, 2008

At 7:45pm last night, Tim and I welcomed Max home for the second time! He is doing wonderful and we are so glad to have him home with us.

We have to go into the hospital anywhere from 3-5 days a week for the hemo dialysis. The doctors are still figuring Max out and what he needs in terms of being dialyized. The dialysis is a day by day learning experience for everyone involved. An infant on dialysis is very rare... an infant on hemo dialysis is even more rare than that. Max is handling it very well though and we can't be any happier about it.

I really don't have too much to report besides that I am holding my little booger while I am typing this at home!!! Thanks to all for the love, prayers and support. We couldn't have done it without any of you! Also another shout out to all of our nurses at the RCNIC! THANK YOU! THANK YOU! THANK YOU! Like I said before, you all will always hold a very special place in our hearts. We love all of you. Just remember: It isn't goodbye, it's I'll see you later. Max misses you all dearly!

This is Max signing off from his home in Alexandria, KY

November 6, 2008

Well Max continues to do very well with the dialysis. Yesterday was his third round and he did pretty good. We had a couple of incidents where he got very fussy. They determined that they were pulling too much fluid off of him and as soon as they gave it back he was fine! Everyone is very happy with how it's going. Of course there are still a lot of risks and things that can go wrong, so we are keeping our fingers crossed that all continues to go well. The nephrologist was ready to send him home today, but the medical team is working on condensing his feeds back to a bolus instead of a continuous. So, we are getting close. I am not mentioning any of the days that I was told. After 6 months of this, I have finally learned my lesson.

Nephrology is also getting close to wanting to start talking with surgery about the transplant. Considering he has several objects jutting out of his belly, they are wanting to see what needs to be fixed before the big surgery. They are mostly wanting to get the urinary tract fixed and ready for the new kidney. Max is already 6kilograms, which means that we are more than half way to the minimum weight for transplantation (10 kilos is the goal). Tim and I are standing by for the information on what we need to do to get tested to see if we are a match. They are aware that we are willing to do this and are preparing to get the ball rolling.

Let's see: Max is a totally different baby now that they got all of that fluid off of him. He is still a chunky monkey, but not nearly as swollen or pudgy as before. He looks like a little boy instead of a baby- it breaks my heart that he is growing up so quickly :o( That's alright though. The sooner he grows up, the sooner we can (fingers crossed) move on and live somewhat of a normal life. We are looking forward to that! He is starting to laugh out loud, but only when you tickle him. We are looking forward to getting him home so that we can work on his motor skills a lot more. We're told that he's not too far behind though. We'll get him back on top! We're limited to how much he can do being stuck in a hospital bed hooked to monitors.

I think that is it. Thank you to all for the love, support, and prayers. Once again, Max has proven to be a true fighter. He impresses us every day with how much of a trooper he is.

November 2, 2008

Max had his first round of hemo dialysis yesterday and everything went great. The doctors called it a complete success. He had one minor complication in the beginning where he had a little bit of a clot that blocked the catheter, but a little heparin broke it up and we moved forward. The fellow said that if that is the worst that we run into we are in great shape. They are starting very slow with him so he was only hooked up for an hour and a half. Right now their main goal is to get the fluid that he has been holding onto off of him. So in the short time that he was being dialyzed they pulled off 350 mL of fluid-that's 11.5 ounces! His blood pressure and heart rate stayed relatively stable which is a huge bonus. One of the major problems is that if the flow is too fast/slow his blood pressure can jump all over the place and make him feel pretty crappy. He tolerated it very well considering he was feeling horrible. He was still breathing pretty heavy despite the fact that they got most of the fluid around his lungs out. He was just fluid overloaded all over his little body. His little face was all puffy :o(

When we called this morning to check on him, his attending physician got on the phone (since they were in the middle of rounds when we called) and she was so happy to tell us that his chest x-ray looked great and that they were amazed at how much his breathing had slowed down since the dialysis. WOO HOO! His nurse also said that he was handing out the first smiles in 3 days this morning. When we got there though he was very sleepy. We got a half smile and that was totally worth it. Plus, his chest tube was removed today! He is so much happier, and we can hold him again :o)

Of course I woke up this morning with a scratchy throat. I went to the hospital and just kept my space between myself and Max, but as we sat there the worst I felt. Unfortunately, I will be staying away from him until I kick this in the butt. Thank you to all who prayed for Max- he is doing so well considering all that he has been through in the past week!

Max was unable to dress-up in his Halloween costume because of his chest tube. I will put him in it once he is feeling great and post them for all to see :o)