August 12, 2009

15 months old and big news

Our little man is 15 months old today. I can't believe how fast the time is going. It seems like yesterday we were finding out the bad news and here we are with a beautiful 15 month old little man. I can't say little baby anymore because I swear he woke up Monday morning 2 inches longer then he was when I put him to sleep the night before. He is starting to look like a toddler rather than a baby. It's heart breaking, but good at the same time.

So for the big news. Tim and I have been talking to the doctors about having another baby before the transplant. Dr. Ben and Dr. Dixon had a meeting with the urology team and the transplant team this morning and the idea has been shot down for several reasons. I was heart broken at first, but after considering the reasons, it's for the best. With that said, the news that we were not expecting put about a million pounds of pressure on our shoulders. Dr. Ben and Dr. Dixon told us that they think it's going to be best to do the transplant in about 6 months or so. Their reasoning is for Max's growth and development along with allowing us to live more of a normal life. They said that with the dialysis they are only giving him about 20% kidney function whereas if they transplant he will be at 100% function. Which is good for his all around growth and development. With that said, the plan is to have him off of hemo completely by the middle of September and solely on PD. They would like to have him stay on the PD for 6 months and then do the transplant. So it's looking like Spring of 2010 will be it. Dr. Dixon said that he just threw the 6 month time frame out there, but somewhere around there would be a good time to do. For those of you that are thinking the same thing that I did, they are NOT doing this so that we can have another baby. They want us to be able to do that, but that was not the main decision maker.

Needless to say, my emotions are running wild. I have no idea why I want to break down and cry with this news, but I do. I don't think that would be appropriate considering I am sitting in the dialysis unit, but it will probably happen as soon as we get into the car. I am petrified. I am so scared to be going through this surgery, but I am even more scared for Max. I hate that Dr. Sheldon will not be there to do it. I hate that I only have 6 months to prepare for the biggest surgery of my life, even though I have no idea how to prepare for it. Most importantly, I am scared of not being there for Max when he comes out of surgery. Instead I will be laying in my own hospital bed, totally out of it, not knowing what's going on with my son who is in a totally different part of the hospital. I hate not having control of what's going on in my son's life and this is going to kill me. I know that he will be in the best hands possible, but I still hate that I won't be there right after they have him stable in the ICU.

Don't get me wrong, I am looking forward to having this surgery finished. I am dreading the bladder reconstruction, which is a harder and longer surgery than the transplant, but I am so ready to get this process moving. I am ready to take my son on vacation where he can swim and have fun playing in the sand or on the shore of Dale Hollow Lake. I am beyond ready to have the 2 catheters taken out of his little body. I am ready to have his vesicostomy closed, but scared of the new things that come along with that. I am ready for Max to want to eat rather than us having to force him to eat. I am ready for him to have the energy that he needs to want to crawl and walk. I am scared, but I am so ready for my son to be able to live his life like most 15 month olds do.

I don't think my fear is ever going to go away. I have my fears now, but they will multiple my thousands after the transplant. Germs, infections, germs, fevers, school, his first kiss, germs, etc etc etc. Our lives are totally going to change after this surgery, but we're ready for the challenge. We're ready for the new mommy and Max diet and exercise program so that we can be sure to take care of our "new" kidney. We're ready for everything that comes along with a transplant. We're ready, I think.

5 comments:

Anonymous said...

Beth, I know you are concerned about not being with Max immediately after the surgery. But remember Max has very loving and capable father, grandparents, and other extended family who will be ready to help both of you in whatever way necessary. I am sure you are scared, but I am also sure the surgery will be a wonderful success.

Anonymous said...

Beth & Tim,

You know you can count on any of us to help in any way possible. You have an army of Max followers who are at your beck and call.

Luv & prayers,

Dominique

Jodi said...

God will ready you.

You will be FINE.

Trust that. Trust Him.

Anonymous said...

I think that you have just made your own case for why it is time (in six months) to take the next step, to start a new era, and to escape the bonds of the IV bottles, dialysis routines, catheters etc..
The anticipation of the actual surgery is probably the hardest part. You have no other choice but to place your trust in the hands of the professionals, and hope (and pray) for the best.

You've come a long way in these fifteen months, your faith has bent but not broken, and while you are apprehensive of the future - the future is the only final solution.

Max is a warrior - a veteran of these surgeries. Unfortunately, it is his way of life to this point. Hopefully, the kidney transplant will be the catylist that will launch the both of you into a brighter future.

DS/BBHS

jessicalflores1@aol.com said...

Beth,

I can understand your fear so much. We're waiting on a kidney for Logey and I'm so scared of the new-ness and changes in everything. And then to add a surgery on yourself to that has to be terrifying. I'm sure through God we will both (and both little guys) overcome these huge obstacles. And soon our little ones will feel so much better than they ever have before. Though they don't seem to really realize how bad they feel because it's all they remember, I can't help but think they are probably going to feel renewed with their new kidney. What an awesome gift that you are able to give your son! Right now I would give anything to be able to give Logey a kidney. But, God has other plans and I'm sure they will be great. I am praying for your peace. I am also praying for my peace, LOL, as lately I haven't been able to sleep because of anxiety over "the call."

Jessica