Max will all of his presents!
Phew, that was a busy week! We hope everyone had a great Christmas and got everything that you asked for. Max got everything that he asked Santa for and mommy and daddy didn't do too bad either. Well I have a couple updates to share with everyone.

The first is for all of those that received a Baptism invitation with your Christmas card. We unfortunately have to cancel the baptism for right now do to a surgery that is scheduled a couple of days before. We will let you know when we reschedule it.

That leads me into my second update, and that is that Max is scheduled to undergo the first of two bladder surgeries on January 8th at 1:00pm. This surgery will involve closing his vesticostomy, placing the supra pubic tube, fixing the blockage that caused this mess, a scope to check for hernias/etc, and a scope of his airway as a follow up from his earlier surgery (cricoid split). He will spend anywhere from 2-5 days in the hospital after the surgery. Please keep him in your prayers that all goes well with this surgery.

Max also got evaluated for First Steps so that we can get him some therapy to get him caught up on his motor skills. The evaluator said that she feels he is close to being on track with his development skills and she feels that they will improve once he gets his motor skills worked on. So hopefully he will qualify and we will get him eating, sitting up and rolling over. Looking forward to this :o)

I think that is it from our end. I know it's not much, but that's how we like it :o) I will keep you all posted. Have a great new year!!!

Merry Christmas 2008

Merry Christmas from our family to yours. We hope that it's all that you dreamed it would be.

Love always.

Some of the best news we have heard...

in a very long time and a huge sigh of relief. Today at dialysis I got a phone call from the transplant nurse. She was calling to give me the results of the tissue typing that we did two weeks ago. She told me that I am a perfect match for Max's kidney transplant. She went on to say that this is very rare and that these are the best results that we could have gotten. So, it looks like Max is going to be getting his mommy's kidney!!!

The next step is to do a CT angiogram on me to look at the vessels and the kidneys themselves to be sure that everything is in tip top shape and where it's suppose to be. If I fail this test I am a no go and we move on with Tim (who is a half match). If I pass, we move forward with several more tests and exams. They will do a head to toe health check to be sure that I am healthy enough to sustain this type of surgery and to be able to live my life with only one kidney.

We are not in any hurry to get all of this finished since Max has to go through the other two surgeries first. It looks like we will start the testing at the first of the year.

I couldn't have asked for anything more for Christmas! YAH HOO!

Have a great weekend everyone!

Long update on Max

Okay, first of all I apologize for the extremely long delay in between updates. Fortunately life has been pretty quiet until this week with Max. We had a urology test done on Tuesday called a urodynamics test. This test was done by placing a catheter in his vesticostomy and blowing up the balloon to block the urine outflow. They thin stuck a small tube into his rear end and blew up that balloon. The goal was to block all holes so that they could measure how much pressure was in his bladder when they filled it up with water. Once they filled his bladder up, he peed through his penis (YAH!) So the good news is that Max peed when his bladder was full.

On Wednesday we had an appointment with the head of the urology department, Dr. Sheldon. The information that we got at this appointment was not what we were hoping for. We were told that Max's bladder was developed under high pressure, so it's very small and thick, which we knew. His ureters are also contorted and didn't develop how they were suppose to because of the high pressure that they developed under. Max also has grade 5 reflux (the worst it can be) into his kidneys. This means that the urine that is in Max's bladder refluxes back up into his kidneys. With all of that said, Dr. Sheldon told us that Max may never be able to pee on his own. It's possible that he may have to be catheterized for the rest of his life, but we won't know until we move forward.

With all of that said, here is the plan of action. Max has to undergo 2 very complicated surgeries. All of this has to take place BEFORE he has a kidney transplant. We have to fix his urology problems so that it doesn't damage his new kidney. Surgery #1 (taking place in early January) will consist of closing his vesticostomy, fixing the blockage, and placing a supra pubic tube (SP tube). This tube will be placed in his bladder and exit in his lower belly. The SP tube will allow us to do what is called bladder cycling. This will consist of us filling his bladder up with fluid in hopes that it will stretch out his bladder and make it bigger. They will then retest and see if we have made progress. If this doesn't work we move on to have a much more complicated surgery. Surgery #2 will consist of fixing the reflux. This will be done one of two ways. Reimplantation of the ureters (fix the ureters) or a nephrectomy (remove his kidneys). If the bladder cycling fails to make his bladder larger they will have to do a bladder augmentation. This would involve taking either stomach, ureter or intestine and enlarging his bladder that way. This is NOT what we want to happen. The chances of it happening are high, but Dr. Sheldon examined Max's vesticostomy by sticking his finger through it to check the capacity of his bladder. He found that the bladder capacity was better that what he had predicted. So we are keeping our fingers crossed and praying extra hard that the cycling will work and that we won't have to go down that road. With surgery #2 they will also put in what is called a mitrofanoff. This is a channel that will allow us to catheterize him several times a day without having to go through the penis. So yes, another tube in his belly. They will then retest to see where we stand.

Surgery #3 will (fingers crossed) be a kidney transplant. The nurse informed me though that she doesn't think this will take place in 6 months like we were hoping for. So that is a huge bummer, but we will take whatever is thrown at us.

This is two very big surgeries that Max has to face with a good possibility of lifelong complications. We knew this was going to be a long and hard road, so we are moving forward with our heads up and holding onto our faith that, once again, Max will pull through this. Max's nephrology fellow, Dr. Laskin, told me that they have several patients that are walking around living a normal life that have a mitrofanoff and that have to cath themselves rather than pee normally. I am still scared to death, but feeling a little better about the situation.

Alright, now that I have bombarded you with the not so great, but not the worse news we've heard... let's move on to something better. Max met Santa last Friday at the Nephrology/Dialysis Holiday Party. This is a get together that they have for all of the employee's families and the patients and their families. It was so nice to get to meet others that are going through what we are. We got to meet one little boy who has exactly what Max has. His is fortunately not as bad as Max's so he isn't on dialysis yet nor will he need a transplant until he is about 10 years old. We also met a little girl who was put on dialysis at 2 weeks old and had a kidney transplant at 14 months of age. She is now 3 years old and doing great! This was an encouraging family to get to talk to because they do know exactly what we are going through. It was very neat and we can't wait for Max to walk into next year's party with a new kidney and with a lot less tubes coming out of his belly.

We also went to the RCNIC after the Christmas party to see Max's night nurses. It was so great to see them again. We still talk about them to Max so that he doesn't forget them. We'll see you again soon ladies!!! We miss you!

Max made me cry last week. I put him in his jumperoo expecting him to do what he normally does and lean to the side and stare at the toys. But he didn't. He sat up straight and started bouncing and playing with all of the lights in front of him. I immediately started crying and jumping up and down with him. It was a very proud mommy moment.

I think that is it. If I forgot something I will repost :o) We hope everyone is doing well and finished with their Christmas shopping! Oh how fast the year has gone. We'll talk to you soon.

“Faithful” CD Fundraiser for Max

Choir members of St. Mary’s church in Alexandria, KY graciously donated a large quantity of CDs to sell for Max. The Faithful CD includes 13 Christian songs including: I Will Choose Christ, Find Us Faithful, How Can I Keep From Singing and more! For a sneak preview at some of the songs, click here.

The CD sells for $15, and all money collected will be placed in an account to help with Max’s ongoing medical expenses.

If you are interested in purchasing one of these CDs and/or making a donation, please contact Jessica Wells at jessowells@gmail.com.

Thank you all in advance for your generosity.

Hello to all! I don't really have too much to report, but I thought I would let everyone know that Max is doing great. He is teething terribly and is a little on the fussy side. He isn't really suppose to have too much Tylenol because of his kidneys, but I broke down and gave him a dose this afternoon. He was miserable and he couldn't stay asleep during his nap because of it. Tim just got him down to bed, but I can still here him in there grunting and moaning a little. Poor guy.... I may have to break down and give him another dose to get him through the night. We'll see what happens.

We are very excited for this weekend to get here. The Nephrology and Dialysis Clinic are having a Christmas party on Friday for all of their patients. Santa will be there along with some UC basketball players. It should be great fun for all of the kids and it will be so nice to meet some of the families. FYI to the RCNIC night nurses: the party is from 6:30-8:30, so we are planning on stopping up to see you ladies. As long as Max isn't exhausted by this point, we will see you all then :o)

We have our first meeting with First Steps tomorrow night. This is an Early Intervention type company that sends therapists out to work with children who are delayed in motor and development skills. They do many things to get your child up to speed. We are looking forward to getting Max the therapy that he needs to get him caught up. So woohoo for that :o)

We have about another week or so before we find out the results of our tissue typing that we had done last week. Waiting patiently to see if either Tim or I is a match for the kidney transplant.

I think that is it. Max is fussing so I am off to give in for another dose of Tylenol. Talk to everyone soon!

Catheter Crisis

Well, Sunday morning Tim got up around 6:00am and started working around the house. He went in to check on Max around 7:30am and continued on with what he was doing. I got up around 8:30am and went to check on Max. I went in and Max was awake and happy. I was looking at him and realized that something was different. The mittens and mesh hat that we put on him to keep him from grabbing at his catheter were off. I frantically told Tim to turn on the light... what do you know.... Max's catheter is laying on his bed above his head. I immediately applied pressure and told Tim to get some gauze. I looked at the exit sight and it wasn't bleeding. His PJ's had a quarter sized spot of blood on the collar and there were a few splatter spots on his sheet. We were told that if this thing came out, he could bleed to death. The dear Lord was watching over Max. We were not there when he pulled it out and I don't even want to think about what could have happened had it bled like it was suppose to.

We called the nephrology fellow on call and told her that we were on our way to the ER. 4.5 hours later we were admitted and put on the add on surgery list to have a new one put in on Monday. I stayed all night at the hospital with him and sleep maybe 2 hours the entire night. Hospitals really need to think about getting better sleeper sofas for the families. The sofa and pillows are hard as rocks- great fun! Anyway, we got up around 7am Monday morning and Max was extremely fussy. He literally fussed nonstop until we got called down for sugery around 12:30pm. By this point I thought I was going to have a nervous break down.

So anyway, the surgery went great. Max came out of it doing well enough that they sent him home around 6:00 that evening. The cathether now comes out from his chest, so he can't get to it unless he is naked. We had to be back at the hospital at 6:30am for dialysis :o( Two sleepless nights in a row and a wake up call at 4:00am... not my cup of tea! Dialysis today didn't go so great. The first two hours were fine- Max slept for most of it. Going into the third hour, Max woke up very cranky. Within 5 minutes all color left his face. He turned green. They immediately unhooked him from the machine. He also started to breath a little faster, so they ordered a chest xray and a CBC to check his white blood count. We found out that the lower right lobe of Max's lung is slighty collapsed and that his CBC count had risen from yesterday pre surgery. So, the nephrologist put him on an antibiotic and told us to watch his breathing tonight. If his work of breathing increases we are to call her tonight. Otherwise, they will see us tomorrow.

Max and I get our tissue typing and other blood work to start the transplant testing tomorrow. I am a needle phobe so I am freaking out about it, but so stinking exciting to finally get that ball rolling. Max will also get a blood transfusion right after since they will be taking 16mL from him (a little over 5 ounces).

I guess that's it. Have a great rest of the week :o)

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!

Bad Mommy Award goes to...

...me :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)

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.

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!

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)

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!

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

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.

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)

Surgery went well

Max came out of the surgery without any complications. He now has a catheter on the right side of his neck that comes out behind his ear. Unfortunately the surgeon couldn't get it to tunnel and come out where his clothes would have hidden it. He said that Max is just too small right now. Although it is not attractive and it kind of made me queasy to be honest, if it works I don't care where it comes out of. When I left Max was still very sedated from the anesthesia, but Tim hung back to be with him.

As far as the hemo dialysis goes, the nephrologist is very confident that it is going to work for him. When he said this to me I made him promise that it would work and surprisingly enough, he did. The plan at this point is to have him on it for about 2 months and reasses him. If he isn't doing as well as they would like on the hemo they can retry the peritoneal dialysis. If (and we are praying so very hard) he is doing great on the hemo, they will continue with it and remove the PD catheter that is in his belly. What this means is that when he comes home we will have to take him into the Dialysis Clinic 3-4 times a week where they will hook him up to a machine that will filter out his blood for 3-4 hours. Tim and I are looking at the positives of this whole ordeal and that is that once he is off the machine and we leave the hospital, that's it. We come home and he can crawl, play and roll over without getting tangled in his wires and tubes. *sigh of relief* We will be able to walk around our house without dragging an IV pole behind us. I know it seems like such a little thing to be excited about. You don't realize how much you miss out on until it's taken away from you.

Let's see... he is still on a high flow nasal cannula, but they are slowly weaning him off of it. They are going to put him over a continuous feed to see if it will help with the gagging, coughing and retching that he has been having. Umm... I think that is it. As soon as Max is feeling better and up to it they will do his first round of hemo dialysis. This could be as soon as tomorrow. We'll see.

I'll keep you all updated. Thank you so much for all of the prayers!

Please Pray!

I have to make this short and sweet because I need to get to the hospital. Max had a horrible day yesterday. An x-ray showed that Max had so much fluid surround his lungs that it was pushing his heart and lung over where they didn't belong. With that said they tried to needle his chest and only got 3mL of the fluid. Another x-ray right after that showed that the fluid was worse. So, Max had to get a chest tube put in to drain the fluid off. As of this morning 124mL of fluid (over 4 ounces) was drained.

Needless to say, nephrology has decided to put him on hemo dialysis. This means that Max is going in for his 6th surgery to have a different catheter placed in his neck or right under the clavical (sp?). I don't know many details about this dialysis, besides that it is very nasty. We are hoping that it is only temporary. 8-10 weeks of this will give his body time to heal from all of the leaks that he has into his lungs and scrotum.

I will keep everyone posted as I get more information. He is on the add on list for the surgery so it will probably be sometime later today. Please keep him in your prayers. As you all know, a simple surgery is NEVER simple when it comes to Max.

Thank you!

My evening thoughts

Update: Max had to go back on oxygen today do an increase of "wetness" around his lungs. We aren't sure what is causing the fluid buildup because the doctors make way too many changes all at one time. You would think they would learn from the first 10 times that they have done this. Despite my concerns, they decided to give him another dose of Lasiks to see if it will pull some of the excess fluid off. It didn't work the first two times they did it, so I am not expecting it to work this time around either. We'll see... I hope to be proven wrong!

My Thoughts: I am a blubbery mess right now because I feel like I just can't do this anymore. I am so tired of hearing bad news, I am tried of having to driving 30 minutes EVERYDAY just to see my son, I am tired of worrying about finances, I am tired of being tired, I am just tired of how our life is going right now. I am ready for things to start moving in the right direction and to STAY in that direction. I am willing to lay on the operating table tomorrow to give up my kidney if it meant that all of this would go away. When I don't feel like I can do it anymore, Max looks at me with his beautiful blue eyes and he gives me the strength that I need to make it through another day. I am so proud to say that my son is my hero.

Our friend Brett says is perfectly:

Max,

How about me and you get together some time? I would love to play toys with you. But I have to be honest, I have ulterior motives

I want to learn about how you get the courage to not shut down, to keep going in the face of impossible odds. I want to know how you overcame all that you did with "a smile on your face". I want to know how you were able to do what you did without anybody telling you how.

These are all things that everybody can do, we just sometimes don't do because we THINK we cannot or we don't think we should.

Thank you for showing us that life is worth all that it has to offer. And that the crosses that we bear in life can only make us stronger.

They say, "Actions speak louder than words". You haven't said anything yet and you have already taught me so much by your actions.

Can you show me more? I really want to learn.


I always wonder, why do things like this happen to innocent little babies who did nothing, absolutely nothing, to deserve any of it. Why is it that Max had to have a stupid flap of tissue block his urine output that caused him to have tiny lungs and two kidneys that don't function properly. I look at all of the babies laying in the NICU helpless and I just cry. I cry for them and for their families. My heart aches when I see a new admit come in and I see their mommy and daddy standing back while the nurses hook their brand new baby up to a thousand machines and a crowd of doctors come in and surround the isolette to exam what is going on. The look on a parents face standing in the background is forever etched into my memory- the look of fear, worry, heartache all rolled into one. No one truly knows what it's like until they live it, and I wouldn't wish living this on my worst enemy.

I was watching Oprah yesterday and this particular show was about children that defied the odds and survived life threatening diseases. There was one family that was told that their little boy Eliot wouldn't survive past day one due to his disease. His parents knew that it was going to be for a short period of time, but they look him home on oxygen and with a feeding tube. Eliot lived for 99 days before God decided that it was his time to join Him in Heaven. Eliot's mom always told herself that she would be sad later, that she had to enjoy the time that she had with her only son. What she said has inspired me to live for what we were given. Max is a miracle in itself and we have to remind ourselves that we are truly blessed that he is even here with us today. The odds were very much against him, but he fought and stood strong. His mission is far from over and he inspires me to be sad later- to live my life to the fullest and to love the hand that I was dealt. Go to http://www.oprah.com/media/20081001_tows_99balloons and watch the inspiring video that Eliot's mother and father created for him. Eliot and Max should be inspirations to us all for their willpower and strength to survive- whether it be for 99 days or 99 years!

Max continues to do a little better everyday. Yesterdays x-ray looked slightly better than the one before so that's good. He ended up spiking another fever yesterday, so they drew another round of cultures from everywhere and started him on an antibiotic. Finally, after Tim and I have been saying it for a week now, they think he might have pneumonia. So that's what they are treating him for. It's so freaking frustrating to not have anyone listen to what you have to say!!! But they are going to do a 7 day antibiotic and hopefully it will nip whatever it is in the butt.

Dialysis continues to go well. They started mixing the dextrose in his solution because everyone was finally on the same page and agreed that they were dehydrating him. He seems to be doing better with this and he is still having positive outputs. Which means he isn't holding onto any extra fluid that he shouldn't be.

They have tried to wean him from his 28% oxygen to room air and he doesn't tolerate it too well. His sats drop into the 80s and we are not comfortable with that. His nurse today said that he slept from 9:30pm to 6:00am last night and that was followed by a 4+ hour nap late yesterday afternoon. He is awake and smiling and talking up a storm. This is also new for him. He has talked a little bit, but now he really talks. You say something to him and he "answers" right back. It's like he knows exactly what you are asking him and he has the right answer. So stinkin cute!

We have a few prayer requests if you wouldn't mind:

My Uncle Dick had to have quadruple bypass surgery plus another emergency surgery to remove a blood clot. He is on the ventilator, has chest tubes and his kidneys shut down so he too is now on dialysis (which is hopefully temporary). Please keep him in your prayers along with Aunt Dianne and their children, that they continue to have the strength that they need to get through this rough time.

Tim's sister also got put into the hospital this week for severe abdominal pains. She ended up having gall stones and had to have her gall bladder taken out yesterday. Please pray that she has a quick and easy recovery and is back up on her feet very soon.

I also juat got news that a friend of ours father was just diagnosed with pancreatic cancer. He will be undergoing surgery and chemo shortly. They think that it's just on his pancreas at this point, so that is reassuring. Please pray that the surgery goes well and that the chemo kicks the cancer in the butt and that he recovers quickly.

We also just got news this week that my cousin Chris and his wife, Jessica are expecting in June 2009. Please keep them in your prayers that they have a happy and healthy pregnancy.

Also keep little Miss Avah who was Max's neighbor in the F Pod of the RCNIC. She got transferred to the trach unit this week. Pray that she continues to grow stronger everyday and that she will soon get to join her family at home.

Also for Miss Carmen who was also Max's neighbor in the F Pod. She was born with her intestines on the outside of her little body and they are finally starting to talk about her going home soon. Please pray that it's a easy transition for her family and that they get to enjoy every moment with her outside the walls of the RCNIC.

Thank you everyone for all of your love and support. We'll keep you posted!

Max is doing better. The x-ray that they did yesterday was worse than the one they did on Saturday, but he seems to be breathing a little better than he has been. He is still on the nasal cannula but they are slowly starting to wean him off of it. They did an echocardiogram today and it came back normal. He also spiked a temp this morning so they took cultures and those have also come back negative. They stopped his Lasiks dosage because of the long term effects it can have on hearing. His nephrologist said that he didn't feel it was doing much anyway.

They still have him on the highest dextrose dialysis solution they have and it seems to be doing the trick to some degree. They pulled over 400 mL off of him just from his dialysis yesterday, so hopefully that helped. They will most likely decrease the dextrose of his dialysis solution tomorrow.

They will also be doing a repeat x-ray tomorrow... keep your fingers crossed that this one is better than the last. His heart rate is still in the 180's-200's when he is awake but goes down to the 150's-160's when he is sleeping. His mouth is VERY dry so I am starting to think that they may be pulling off too much fluid- which would increase his heart rate.

No one is really sure why this happened, but at least his heart and any infections have been ruled out. It has been a very crappy weekend and week so far, but it's definitely good to see him feeling a little better. I will feel much better when he stops pulling and tugging every time he takes a breath and when his x-ray starts to clear up.

One good thing that he started doing while he's been in the hospital is suck on a green lollipop looking sponge. His nurses have been dipping it in sterile water or breastmilk and he goes to town on it. Also another reason why I think he is starting to get a little too dry. This is very encouraging though since he hasn't had any interest in sucking on a pacifier or bottle in a very long time.

I'll keep you all posted!

I am making this very short because Tim and I are both scared out of our minds and mentally and physically exhausted. And frankly I don't feel like going into full details tonight.

Max isn't doing as well as we would like. They are giving him some oxygen with the nasal cannula to help him with this oxygen saturation levels. The xray that they took yesterday morning was a little worse than the one on Friday morning. He is pulling and tugging VERY hard and it gets him very upset and frustrated that he can't breath without struggling. Umm... They are trying a higher concentration on his dialysis solution, but it didn't seem to do the trick as of yesterday or today so now they are trying something called Lasiks. This is a drug that helps pull excess fluid off of the body. Bad thing is that this drug isn't as effective with people who have kidney failure, so they flat out said they are not thinking that it's going to work. Needless to say, we have no idea why he is holding onto so much fluid and we have no idea what the next step will be to get it off.

Our biggest fear is that Max will give up on trying to breath. We will talk to his main nephrologist tomorrow to see what his thoughts are. I am hoping they will do another xray to see how it looks. PLEASE PLEASE PLEASE keep him in your prayers. He is really struggling and right now he just needs all the prayers he can get.

I'll keep you posted.

Max was admitted back in the hospital yesterday. He had an increased work of breathing all week and the doctors told me to keep an eye on it. Thursday morning I noticed it was getting worse so when we went in to the office I asked for a chest x-ray. It showed that he was holding onto a lot of fluid that was in the vessels and it was putting some strain on his heart. The actual fluid around his lungs was very small. So the doctors thought that it would be best if they kept him to be able to monitor him and work on pulling the excess fluid off.

Luckily, he was able to go back to the RCNIC, so he has the nurses that know him best. It's pretty sad though that when you walk into an ICU setting everyone knows your name. Max was very sleepy when we went up to be admitted, but as soon as we walk in and all the familiar faces came to see him, he just laughed and smiled like it was no big deal! It's like he was saying...."I'm back!!!" Such a booger!

The doctors are hoping that this is a very short stay. As long as they can get the fluid off and get his breathing back to a normal pace, he should be good to go. I am just very thankful for the education that we got while we were in the RCNIC the first time. Some people would not have thought twice about something like this. I am just glad that we got that x-ray and we caught it before something really bad happened.

Needless to say, Max gets to spend a few extra days with all of his girlfriends at Children's, which they all love!!!

Please, keep him in your prayers that all goes well and that he is back home with us in a few days. I told his nephrology fellow Ben, that he has to be home for his mommy's birthday on Monday! Keeping my fingers crossed!

New pictures...

...of Max at home!

Phew...

...sorry for the long delay in between posts :o) Well let me start by saying that Max's first three days at home have been WONDERFUL! When we have time to just stop and take it all in we realize that we would not trade any of this in for the world. We are extremely busy with trying to get organized, clean (still haven't gotten that carpet scrubbed yet), do dialysis, feed him, give him his meds, and most importantly love and enjoy every minute of him! I love being a mommy :o) It truly is the best feeling in the world.

Max had a doctor's (nephrology) appointment yesterday. Everything looks great! We don't know the results of his blood work yet, but we're not too concerned. Everything with the dialysis has been going pretty well. When we got there they told us that some of his nurses from the RCNIC had already been down looking for him, so they had to page them when we got there. They said that he looks bigger already!

Tim and I also did a first last night when we packed him and his dialysis supplies up and went back to the hospital to see some of his night nurses that didn't get to see him before we left. It really wasn't that bad. We'll definitely do it again. We got a pretty good system down with how we hang it all on his stroller! Tim and his creativity got us there :o)

I think that is it. Max is finally catching up on his naps today. He is one very happy little boy and is doing great! We are thrilled to have him here with us- all under the same roof!

I told you that I wouldn't post anything until he was in our living room, and well he is in our living room! Well he is actually sleeping his is very own bed right now. I got a phone call this morning saying that Thursday or Monday was going to be the big day, then I got another phone call about an hour later. Three of Max's nurses and his discharge coordinator had me on speaker phone announcing that he was actually coming home today!!! Talk about a moment of panic. My main concern, for some reason, was that I hadn't steamed cleaned our carpet yet. Oh well, we'll do that later. I ran around here like a chicken with my head cut off trying to figure out what last minutes things I needed and to make phone calls. Then I headed off for my last visit to Children's Hospital- had to make a last minute stop to Wal-Mart to pick up a timer though.

The day was totally hectic. We had the home care nurse in his room showing us how to use his feeding pump (we will be using this for feedings throughout the night so that we don't have to wake up to feed him every 3 hours.) We also had nephrology giving us last minute directions and to make sure that we were good to go plus the nutritionist on top of that. The discharge coordinator and tons of nurses were in and out all afternoon until we left as well. It was a HUGE party in B9 for a few hours! So much fun and so many memories!

149 days! That's how long Max was in the hospital. It was the most trying time of our lives, but the most exciting and memorable time as well. Max has overcome so much in his short 5 months of life- more than what most of us will ever experience in a lifetime. He is truly my hero and I look up to him for the strength that he has and for all that he has endured (with a smile on his beautiful face.)

I also have to take this time to thank EVERYONE that has helped us get through this time. We couldn't have done any of this without our family, friends and newly acquired acquaintances. The love, support and prayers that you all provided to us has gotten us to where we are today.

The most important group of people that I need to thank (and bow down to) are our doctors and nurses. Ladies, you all are our angels here on earth. You will never know how grateful Tim, Max and I are that you were brought into our lives. For 5 months you were Max's adoptive mommies and we are so thankful that you were there to care for him and to love him when we couldn't be. Max will grow up knowing who each and every one of you are and the impact that you have made on our lives. I don't know what I am going to do not being able to see you all everyday. Believe it or not this is hard on us as well. October 8, 2008 was a very bittersweet day. We got to finally bring our sweet little boy home, but we also had to say goodbye to our hospital family and friends. I did tell some of you though that this is not goodbye, it's see you later. We will most definitely be keeping in touch and we will see some of you on Friday and Monday when we're there for his follow up appointments. We love all of you ladies and please know that we thank you from the bottom of our hearts for taking the best care of Max and for making a huge impact on us. You all will forever hold a very special place in our hearts.

To all of our primary nurses:
Aimie H.
Tanya B.
Tonya F.
Amy S.
Lori T.
Kelli W.
Allyson V.
Liliana P.
Chenelle M.
Tina L.
Sara B.
Reanna S.

These ladies have gone out of their way to take an extra class on how to do Max's dialysis. Some of them our going even further beyond their call of duty to take on the challenging tasks of becoming Max's home care nurse on top of their jobs at the hospital. Do you all see why we love these ladies so much! Here is to the best group of primary nurses a person could ask for.

First trip to load the car!
A handful of Max's primary nurses
Max wasn't a happy camper to be strapped into his carseat
Max looked out the window the whole car ride home
Meeting his doggies for the very first time
Our precious angel is home and asleep in his very own bed

Pictures from Tonight

Daddy's favorite tee shirt
Max is grabbing at his new toys! Yah!!!
All tuckered out from a hard day of playing

Okay.... we are switched over to a manual setup for the dialysis and Max's numbers have dropped tremendously. One went from 60 something to 20 something- that's HUGE! He is in a much happier mood and feels a lot better since they made the switch.

Only one VERY minor problem... we are fighting the insurance company to pay for the supplies that go with the manual setup. It's $2,500 a month and well, unless we win the lottery sometime VERY soon, we can't afford that. The doctors and discharge coordinator are working on this. Hopefully, we will have an answer within the next couple of days. They are also working on getting the nursing care situated. We'll see what happens with all of this.

Ummm let's see. Something very cute that Max did the other day: Max was laying in his bed and his nurse said that he was getting pretty sleepy. She said that he rolled his torso over grabbed his blankie and pulled it up towards his face and fell asleep. Now how stinkin' cute is that? Pretty stinkin' cute if you ask his mommy!

I think that is it everyone! I'll keep you all posted on the insurance ordeal!

Tastefully Simple Fundraiser

Ladies- Another one of my fellow message board mommies has done it again! She sells Tastefully Simple and and has offered to donate her earnings from her sales through November 30 to Max.

Here are the "Guidelines" for ordering Tastefully Simple from her:

1. You can shop online, or you can request a catalog from me, I would be more than happy to mail them out!

2. If you shop online, the credit they receive is 25%, if you host a party it is 25% + your hostess credit (10%) = 35%

3. If you are ordering online, please use "Max KYBride" as the Hostess so I know to allot the appropriate credit

4. If you need samples of anything, or if you want to take some samples to work, family functions, etc (our samples make one full size serving of everything) let me know and I can get those mailed out to you right away.

5. If you would like to order gift packages, or if you are interested in buying gift cards for your company or as christmas gifts, they can be personalized and Max will still get credit

6. The fundraiser will last thru November 30th, unless it is kicking butt, in which case I will extend it indefinitely to help out as much as possible!

If you have any questions, feel free to call or email me. My cell phone number is on my website and my email address is tsbylindsay@hotmail.com

Lindsay A Searing
Independent Consultant
www.tastefullysimple.com/web/lsearing - shop online!!!

Thank you ladies! Again, we are very thankful for all that you have done for us and for Max! There is nothing that we can do that will thank you all enough!

Any questions, let me know!

Thanks!
Beth

Let's start with saying that Max is doing great! His scrotum is still very swollen, but the doctors are thinking that surgery is not the route to go. They have done 4 ultrasounds now, I think. All four of them haven't shown neither a hydrocele or a hernia, BUT the urologists, surgeons, and nephrologists believe that there is a small communicating hyrdocele somewhere. Either that or a leak in the actual peritoneal membrane. They can put a dye into his dialysis fluid and do a CT scan while he is filling to find out where the hole is , but I don't know if they are planning on doing this or not. I know that all of this seems so scattered brained, but honestly everyone of the doctors that I have talked to over the last 5 days has been totally scattered brained since no one seems to know exactly what is going on.

The surgeon came up last night and explained to us that the membrane is sort of like skin, so a pretty thin layer. If they go in and try to sew the hole, they are actually risking more harm than good since they would actually be putting more little holes around the main hole. Make sense? So, I think from what I got out of what everyone has told me is that for right now we are just keeping an eye on it.

Here is a funny for you. They want us to ball up a bunch of gauze pads and elevate his scrotum so that "gravity" helps push the fluid back into the belly area. Let me tell you that this really just makes for a good laugh, because it doesn't work. Max would need to be left laying totally flat in his bed at all times. Meaning that we wouldn't be able to hold him. Also keep in mind that whenever Max is laid flat, his lungs fill up with fluid. He has been elevated in his bed for as long as I can remember. So, the nurses are doing it to make the doctors happy :o)

The nephrology team came in today to let me know that Max was going to be in the hospital for a very long time (months) since they can't get him on the cycler successfully (right now he will have to be on the manual setup). So I asked them if they meant until his transplant. The nephrologist didn't want to admit this, but he couldn't say no either. His hesitant response was, "I wouldn't say for that long." ANYWAY, as my eyes filled with tears his wonderful nurse, Tanya, jumped in to argue. So, very long story short, they said that if we can get home nursing care for 5 days a week for 12-16 hours a day they would agree to it. They also said that as long as we had a good support system at home, that they would agree. Their main concern is that I would go insane being in the house 24 hours a day, 7 days a week having to fill and drain Max every hour around the clock. So we got the discharge coordinator and told her the scoop. She will be working on getting this arranged tomorrow. His dialysis nurse is also on the prowl of getting some training classes set up so that we can learn how to do the manual PD :o) Don't tell anyone that I said this, but even a caveman can do it! So, if you got my gist, I WILL NOT ALLOW Max to stay in that hospital room until he is 12-15 months old. My son is not learning to crawl at Children's Hospital. I will not let it happen.

I'll keep you all posted! Enjoy the rest of your work week!

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.

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.

http://www.palassis.com

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!

WOOHOO!

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!!!

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!

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!

http://www.fetalcarecenter.org/patients/stories/default.htm

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.

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!

My Cousin's Twins

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

Nicholas and Noah
Nicholas
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!

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.

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