January 28, 2009

One year ago today...

...we had an ultrasound that would change our lives forever. One year ago our lives were flipped upside down with the news that something was wrong with our unborn child. One year ago we found out that we were having a little boy.

That day still stands out in my mind as one of the worst days of my life. Tim and I both took off of work and had the plan of going to the ultrasound to find out what we were having, then going to lunch and to register at Babies-R-Us. Boy was that plan shot to hell and back. Once we heard the news, we drove home with without saying a word, just tears. We got home and then everyone started to call to hear whether the new addition was a boy or girl. Talk about the hardest thing in the world to tell people. If I recall correctly, it went something like this, "Well we're having a boy, but..." I think Tim and I told that same story 10 times that day. I finally got to the point were we told people to call our parents. I then sent out an email to inform the remaining family and friends.

The two weeks that followed January 28, 2008 were full of tears, doctors visits, tests, ultrasounds, 4 amniocenteses, an MRI, meetings with the medical team, decisions that no one should ever have to make, a physical, blood work and a major surgery that could change the outcome for our little boy. A lot of people would say that it was the hardest decision that they've ever had to make. To be honest, it was the easiest. When we were asked what we would like to do, I didn't even ask Tim. I just said let's do it. Thankfully, Tim agreed :o) Why would we allow our son to die if there was the possibility of saving his life. We had no idea what the outcome was going to be, but we were willing to face the worst if we had to, but we HAD to try. The doctors told us that the baby may not make it out of the surgery. If that were the case they would have delivered him and let us see him after surgery to say our goodbyes. As scary as it was to hear that, we didn't let it stop us.

A little over 2 weeks later, on February 13th, I underwent a surgery that has only taken place twice before in Cincinnati (I was the 3rd) and about 6 times nationwide. Surprisingly, I was relatively calm. I was more nervous about the IV than the surgery itself. After waiting a couple of ours I was wheeled to a holding room where I was given a sedative to keep me calm once I was in the OR. Everything was a blur once I got that. I remember kissing Tim and saying goodbye to both sets of our parents. I was then wheeled into the OR. I remember switching over to the table and leaning on a nurse to have my epidural put in. The room was spinning and I heard a lot of voices. I was then told that they were going to give me some oxygen. Well let's just say that that oxygen had something in it, because I don't remember anything after the nurse told me that. 4 hours later, I woke up in the recovery room with the nurses telling me that the baby's feet are very cute. I asked if everything went well and they said yes. Tim then came back to see me along with my mom a few minutes later. I then went back to my room and don't remember much until about 2 days later. I had an epidural, a catheter, was on magnesium, had a morphine pump, and was on several more meds that I don't remember. The only thing that I remember is that I was extremely hot and thirsty and they wouldn't give me anything but ice chips. For 2 days, I think, they wouldn't give me anything to drink and I was so hot and dry from that dang magnesium. I am convinced that the devil created that drug. Anyway, I finally got my sprite and water and I was very happy after that.

5 days later I went home to spend the remainder of my pregnancy on bedrest. It was then that we announced that our little boy, the boy who fought so hard to be alive was going to be named Max. A name that means "the greatest." Max is the greatest thing that has ever happened to us. It's hard to believe that it has been a year since we found out about his condition. Not knowing that we would be where we are today, we made a decision that put myself and our unborn child at risk, but not once have we ever looked back. We knew that if he survived we would be in it for the long haul. We knew before we made that life changing decision that he had kidney failure and would most likely end up on dialysis awaiting a kidney transplant. We knew he would be in the hospital for awhile (not quite 6 months though). We have had several unexpected surprises along the way, but we have never looked back.

My marriage to Tim has grown stronger than I ever thought possible. I truly believe that Max will be a much stronger man because of what he has gone through in his life. All of this happened for a reason and we have taken it head on and if you ask me, we have done one hell of a job.

Although I spend 3 days a week (Tim does the forth) at the hospital, I enjoy my time there with Max. We make the most of what we can while we are there. This is our life and to us it's the best life. We have learned a great deal about each other and about ourselves throughout this journey. We look forward to learning a lot more as our life progresses with our son, Max. "The greatest" decision that we have ever made.

January 23, 2009

Well we have a tentative date for Max's second urology surgery. As of right now it is scheduled to be on Tuesday, March 31st. This surgery will involve reimplantation of his ureters, placement of a mitrofanoff and possible augmentation of his bladder (reconstruction).

As of right now we are still clamping his SP tube and things seem to being going well. We have a follow up appointment either on the 11th or the 18th of February. From there we will have a better idea of what the plan will be.

Not too much to report! Have a great weekend and we will talk with everyone soon.

Max wanted me to say hello to Cora and Maggie! Max is very jealous that he didn't get to go ice fishing with you. Have a great weekend girls!

January 16, 2009

Pictures and an Update

I was going through all of the pictures on my camera and decided to post some that I never got around to doing. Enjoy!

Max in his super cute Christmas outfit

Max with his nephrology fellow, Dr. Ben. He and Max are best buds :o)

This is Max with his primary nephrologist

Max with Santa Clause at the Nephrology/Dialysis Christmas party

I am posting this because people have asked what a vesticostomy looks like. Well this is it. This is what Max peed from for the first 8 months of his life.

Max was all smiles while we sat and waited 4.5 hours for surgery #10 to take place

My first picture that proves that Max can pee like a big boy. SO EXCITING!!!

Mommy's favorite part of the house... Max's room. Why is it mommy's favorite? Because it's clean :o)

Want to send out a HUGE congratulations to my brother and my new future sister-in-law. We love you and wish you both the best in your life together.

Max had a cystogram today and everything went well. This test was to measure the volume of his bladder, show the reflux, and to check for leaks in his bladder. It was confirmed that Max still has grade 5 reflux into his kidneys. The radiologist was very pleased to see that when Max peed, all over the radiology tech, that he completely emptied his bladder. He was also pleased that the dye in the kidneys drained back into the bladder once it was empty. After the test, we had our followup appointment with his urologist. He had us clamp his SP tube so that we can start the bladder cycling. We have to drain his bladder every three hours so see how much urine he is producing. So far we have gotten only a half an mL. We also have to weigh his diapers now, and those are getting quite heavy with urine. So, in my opinion, he is completely emptying his bladder when he pees. That's just my thought though ;o) Max will have a follow up cystogram and urodynamics test done in four weeks to check for any changes.

His urologist is also working on getting his second urinary tract surgery to take place in about 8 weeks. That puts us about mid March. That surgery will consist of reimplantation of his ureters, placing a mitrafanoff (a hole that he will cath himself through), and possibly a bladder reconstruction. "Possibly" is being emphasized because we still aren't sure whether or not this is going to have to take place. A little birdie told me that Max's urologist is "cautiously optimistic that his bladder will stretch." We are not getting too excited about this yet, but it is VERY encouraging to know that a nationally recognized urologist said that. So, we are holding onto hope that his bladder will stretch with the bladder cycling. The urology nurse said that if he doesn't need the reconstruction that a transplant can take place anywhere from 3-4 months post surgery. So we will see what happens.

Max started his speech and physical therapy. Both therapists seem happy with how he is and feel that once they work on a few specifics that he will take off. He has the skills for eating, we just have to show him how to. He is also showing interest in sitting up on his own, so he therapist showed us things to work on over the week so that we can get his core muscles in tip top shape for sitting up. It's all very exciting.

The past week has been very CRAZY and VERY stressful, but we feel that we are moving in the right direction both from a urological and a developmental standpoint. We are hanging in there and just hoping and praying for the best.

Have a great weekend everyone!

January 14, 2009

New Video, its a little late.

This video is from when Max came home from the RCNIC the second time. A big thank you to Rick for creating another beautiful masterpiece once again.


January 10, 2009

Max is home

Max was discharged this afternoon and is doing very well this evening. If I could just keep him from pulling his shirt up and pulling on his new tube we will be in great shape :o)

He has a followup appointment on Friday the 16th to have a cystogram done. I am not too sure what they are looking for with this test, but they will cath his urethra and put a dye into his bladder and take a look at it. I will let you all know how this goes.

I just wanted to thank all of you for all of your thoughts and prayers. He continues to amaze me everyday with his strength. So thank you all for caring about the little boy that you all know so much about, but have never met (most of you anyway).

I also wanted to wish our little man a happy birthday! He turns 8 months old on Monday. Can you believe that? It has been a crazy 8 months but the best of our lives as well!

We'll talk to you all very soon. Have a great rest of the weekend and a great work week as well!

January 9, 2009

A few more things...

I forgot to post to the RCNIC nurses that Max is on A6 Central room #685. He will be going down to the Dialysis Unit at some point today, but I am not sure when.

I also forgot to mention that Max had a little bit of increased work of breathing while in recovery yesterday so they put him on a half liter nasal cannula. The doctors were tossing up whether or not he should be taken to the ICU or not. They decided that since Tim and I were comfortable with his breathing that they wouold just watch him closely. All night his cannula was on his forehead so it wasn't doing much good there. They put an oxygen mask near his face and his sats were 99%-100% all night. The breathing has slowed downed since last night and dialysis today will help with that as they get the excess fluid off of him.

He didn't sleep great. They gave him a dose of morphine around 10:30 or so. He would wake up and fuss and I would get up pat his butt and rub his head and he would fall back asleep. He did this about every half hour for the first couple of hours then his sleep span got a little longer each time after that. He is still sleeping so hopefully he will get plenty of rest today and feel better by this evening. He managed to crack a half smirk to me this morning so we are on our way to having Max back.

I think that is it. The urologist came in and told me that if he is doing great by this afternoon that he can go home, but I told her not yet. We would rather him spent an extra day here just to be sure. We don't want to rock the boat plus Tim and I still need to learn about the new addition to his little body. We won't bring him home until we are comfortable with his pain level and with the SP tube, but he should definitely be home by the end of the weekend.

I will keep you all posted as new updates come in. Have a great weekend!

January 8, 2009

Surgery went well

That ladies and gentlemen was a terrible horrible no good very bad day, but everything went well. We got here at a little before 11:00am to check in and got put into a room in the same day surgery unit. We were told shortly after arriving that the OR was behind about an hour. So this puts Max's time at 2:10. At 2:20 they came in to tell us that we would be taken down at 3:00. At 3:15, Tim went to see if we were getting close and they told us about 15 more minutes. So finally, at 3:35 Max was taken back to have the procedures done.

Thank God Max was in a great mood and never really got fussy. He fell asleep for about a half an hour and woke up in a pretty descent mood. He got a little upset when I had to hand him off to the nurse that was taking him into the OR, but they said that he did great.

The ENT doctor came out to see us about 45 minutes later and said that Max's airway is perfect and that he hasn't seen a more beautiful airway. So woohoo for that. He also informed us that Max was way too good looking to be an only child and that we shouldn't let all of this scare us from having a "whole clan." Well, let's get a new kidney in the first one and we'll see about another one. Hmmm... what other organ can I give up to our second one? Good grief :o)

Tim and I finally got to eat since we knew it would be a few hours before we got anymore news. About two hours into the surgery, Max's buddy Dr. Ben came to the rescue and sneeked in to see how things were going. Everythiing was going well and they were in the process of finishing up the placement of the SP tube.

We finally got to talk to the surgeon about 6:30pm and he said that everything went well. We won't know anything for a couple of days though because they are letting the SP tube drain into a bag so that the bladder can heal. Once we are able to clamp the tube and see how much his bladder can hold we will start getting some answers. One of those will be whether or not Max will be able to pee on his own and if it looks like he will need the reconstruction. So we will see how things progress in the next month or so.

But for now I am exhausted and I don't know how well Max is going to sleep tonight. He is out on morphine right now so I am off to take advantage of it. Goodnight and I will keep everyone posted.

January 7, 2009

Max's 9th surgery is tomorrow

Max will be having his first of two bladder surgeries tomorrow at 1:00pm. We have to be there at 11:00am to get admitted and all of that jazz. He will be having two scopes (one of his airway and one of his bladder), his vesticostomy closed, a supra pubic tube placed in his belly, and his valves fixed (hopefully). The supra pubic tube is placed so that we can do the bladder cycling that will hopefully stretch his bladder so that we don't have to do the bladder reconstruction in the second surgery. I am scared out of my mind over this. You would think after 8 previous surgeries that this would get easier, but it doesn't. That final hug and kiss in the hallway before he goes back is pure TORTURE!

Another Update: There is a chance that Max's transplant may not take place in 2009. His bladder has to be working correctly before they will even consider putting a "perfect" kidney in and this may take some time. Tim and I totally agree with this, but are very ready for this to be behind us so that we can go on our first family vacation in 2010 :o( We are all ready for a break and are hoping and praying that his bladder will start cooperating with us. We will know more in a couple of months on whether it looks better or not. It's going to be a long winter :o(

On a happier note, Max qualified for the First Steps program and is scheduled to have physcial therapy and speech therapy come to work on his motor skills and eating skills. So that gives us something to look forward to.

RCNIC nurses: We think Max will be admitted to the A6 Central floor. I will confirm this with a room number tomorrow for those of you that would like to visit. I don't know how the new winter visitation rules apply for this. I am sure that you girls know more than I do.

I will post an update tomorrow once Max is out of recovery and settled into his room.