I had mentioned in a previous post that Tim and I have gotten the privilege of meeting two other families who's little ones are in kidney failure. Brandon got his mommy's kidney back in May and is back home to Tennessee. He is doing fantastic and we look forward to seeing both him and his mom in August.
Summer is the other little girl we have gotten to know and love. We met her mom Laura a few weeks ago when Max was in the hospital for his PD catheter. They too are from Tennessee and are here in Cincinnati for Summer's transplant.
The day that we found out that Max's surgery was moved up, we also heard that another patient was given Max's old date of July 27th. That patient just happened to be Summer. Summer just recently celebrated her first birthday. A birthday that was celebrated within the walls of Cincinnati Children's. Summer has had a very rough road and it's not over just yet. But tomorrow morning, at 7:45am Summer will be getting her daddy's kidney.
The group of us kidney baby mamas is very small, so we consider ourselves very lucky to have found each other. We consider all of these kids our own and we take them all under our wing. Summer is the youngest and smallest of all the kiddos, which definitely makes her extra special.
Tim and I are both very nervous for Laura, Dan and Summer, but we know that they are in very good hands and are confident that they will be taken care of. We are asking that you please keep this family in your prayers just like you did for us. Tomorrow morning, Laura will kiss the two most important people in her life goodbye as she hands them both over to the surgeons. She too will be pulled between the PICU and A4North to take care of her family just like Tim was, so we ask that you hold them up in prayer. Tomorrow- Laura, Dan and Summer get to begin their new life and we are thrilled to get to share it with them.
Tomorrow is going to be a good day.
July 26, 2010
Confession
In the work up process of donating a kidney you are required to have a psych evaluation. During this evaluation you are told that depression is a risk of donating. I didn't quite understand why someone would fall into depression after giving someone the gift of life. I didn't understand until I donated my kidney to Max.
I wouldn't say that I am full blown depressed, but I am definitely down. I finally realized why I was feeling this way over the weekend. The life that I have known for the past 26 months is gone. The life of 10 different medications that were given 6 times a day, feeds every 3 hours, dialysis for 12 hours a day, blood pressures, weights, oxygen, monitors and dressing changes is gone. Don't get me wrong, I am thrilled that all of that is over. This is what we have been wanting from the beginning, but it's definitely an adjustment. An adjustment that I am willing to make, it's just going to take some time to get used to. We have free time that we have no idea what to do with because we haven't had it in so long. We are able to just get up and go and not worry about being home by 9pm to hook Max up to a machine. It's just a weird feeling, but a welcomed one.
During the months before the transplant I tried to prepare myself. I think I put a wall up for preparing what life would be like post transplant. I was more focused on preparing myself for the surgery itself and the risks that came along with it. I think I was too afraid to go beyond the surgery because I was told over and over again how high risk it was. Now that all of that is over and we are home, I am trying to figure out how to live life as a "normal" family. I will get used to this. Life is perfect right now and I couldn't ask for anything more, it's just going to take me some time to get used to having a healthy two year old and all of the things that come along with it.
So this little bout of "depression" will pass. Life is way to short to not enjoy every moment and I will not let this stop me from doing just that. Our little boy is healthy for the first time and we can't wait to grab this new life by the horns and live the heck out of it.
New piece of information: Max had his routine labs and follow up appointment today. While we were sitting in the room waiting for the doctors, Max's urologist poked his head in and told us that he didn't want to tell us this before the transplant because of everything we had going on, but they are going to try again with Max's bladder. Meaning they are going to ramp up his ditropan in hopes that he will not need a bladder augmentation. He went on to say that we are in a very good situation right now. This is HUGE! We have an appointment with him next Friday so we will get more information then, but this was music to our ears. We do not want Max to have to have this surgery. It is a long, high risk and nasty surgery that follows with a 4 week stay at the hospital. Please pray that Max's bladder does what it's suppose to and that he doesn't need this surgery.
I will be posting a prayer request this evening, so please check back to see who is needing your prayers for tomorrow.
Have a great week!
I wouldn't say that I am full blown depressed, but I am definitely down. I finally realized why I was feeling this way over the weekend. The life that I have known for the past 26 months is gone. The life of 10 different medications that were given 6 times a day, feeds every 3 hours, dialysis for 12 hours a day, blood pressures, weights, oxygen, monitors and dressing changes is gone. Don't get me wrong, I am thrilled that all of that is over. This is what we have been wanting from the beginning, but it's definitely an adjustment. An adjustment that I am willing to make, it's just going to take some time to get used to. We have free time that we have no idea what to do with because we haven't had it in so long. We are able to just get up and go and not worry about being home by 9pm to hook Max up to a machine. It's just a weird feeling, but a welcomed one.
During the months before the transplant I tried to prepare myself. I think I put a wall up for preparing what life would be like post transplant. I was more focused on preparing myself for the surgery itself and the risks that came along with it. I think I was too afraid to go beyond the surgery because I was told over and over again how high risk it was. Now that all of that is over and we are home, I am trying to figure out how to live life as a "normal" family. I will get used to this. Life is perfect right now and I couldn't ask for anything more, it's just going to take me some time to get used to having a healthy two year old and all of the things that come along with it.
So this little bout of "depression" will pass. Life is way to short to not enjoy every moment and I will not let this stop me from doing just that. Our little boy is healthy for the first time and we can't wait to grab this new life by the horns and live the heck out of it.
New piece of information: Max had his routine labs and follow up appointment today. While we were sitting in the room waiting for the doctors, Max's urologist poked his head in and told us that he didn't want to tell us this before the transplant because of everything we had going on, but they are going to try again with Max's bladder. Meaning they are going to ramp up his ditropan in hopes that he will not need a bladder augmentation. He went on to say that we are in a very good situation right now. This is HUGE! We have an appointment with him next Friday so we will get more information then, but this was music to our ears. We do not want Max to have to have this surgery. It is a long, high risk and nasty surgery that follows with a 4 week stay at the hospital. Please pray that Max's bladder does what it's suppose to and that he doesn't need this surgery.
I will be posting a prayer request this evening, so please check back to see who is needing your prayers for tomorrow.
Have a great week!
July 21, 2010
A New Life
I teared up this afternoon while we were walking out of Children's Hospital. This time was not because we were leaving Max again. I cried because today was the start of our new life. After 2 weeks in the hospital, Max was discharged.
It felt like the first time we brought him home from the hospital a year and a half ago. We had to have a little "class" with the transplant coordinator and doctors on Max's new medications and how/when to give them. The whole discharge process went a lot quicker than I was expecting. Before I knew it we were on our way out the door with our new medications in hand and our follow up appointments scheduled.
We are so glad to be home and all under one roof. Max is thriving and enjoying his new freedom. He got home and immediately wanted to eat. This is all very new to us so we sat him in his seat and fed him. We then sat down for our steak dinner and Max wanted to sit with us and eat as well, so we let him. I can't get over the changes that he has made in the short 2 weeks since surgery. It's crazy to think that everything that he is delayed in was all due to his lack of functioning kidneys. I absolutely love seeing his new tricks and I can't wait to see what else he has in store.
Now that we are home, we are trying to get Max's new med schedule and routine figured out. We still have to care for his vesicostomy, so our nightly routine still isn't as easy as it could be, but we do not have to do anything with his dialysis. This means no more blood pressures, weights, shots, machine prep or hook up which took our bedtime routine from an hour to about 15 minutes. He is no longer needing oxygen which means that he is not hooked up to anything at night. He went from having 3-4 tubes/wires connected to him every night to zero. I have to say, it felt weird just laying him in bed, kissing him goodnight and turning the lights off. I felt like we were forgetting to do something, but this is our new norm and I love it.
I got teary eyed leaving the hospital today, because today is the first day of our new life. Today- we get to be a "normal" family for the first time since before Max was born. Today is the start of our new life and we are going to grab it by the horns and live the heck out of it.
It felt like the first time we brought him home from the hospital a year and a half ago. We had to have a little "class" with the transplant coordinator and doctors on Max's new medications and how/when to give them. The whole discharge process went a lot quicker than I was expecting. Before I knew it we were on our way out the door with our new medications in hand and our follow up appointments scheduled.
We are so glad to be home and all under one roof. Max is thriving and enjoying his new freedom. He got home and immediately wanted to eat. This is all very new to us so we sat him in his seat and fed him. We then sat down for our steak dinner and Max wanted to sit with us and eat as well, so we let him. I can't get over the changes that he has made in the short 2 weeks since surgery. It's crazy to think that everything that he is delayed in was all due to his lack of functioning kidneys. I absolutely love seeing his new tricks and I can't wait to see what else he has in store.
Now that we are home, we are trying to get Max's new med schedule and routine figured out. We still have to care for his vesicostomy, so our nightly routine still isn't as easy as it could be, but we do not have to do anything with his dialysis. This means no more blood pressures, weights, shots, machine prep or hook up which took our bedtime routine from an hour to about 15 minutes. He is no longer needing oxygen which means that he is not hooked up to anything at night. He went from having 3-4 tubes/wires connected to him every night to zero. I have to say, it felt weird just laying him in bed, kissing him goodnight and turning the lights off. I felt like we were forgetting to do something, but this is our new norm and I love it.
I got teary eyed leaving the hospital today, because today is the first day of our new life. Today- we get to be a "normal" family for the first time since before Max was born. Today is the start of our new life and we are going to grab it by the horns and live the heck out of it.
July 19, 2010
UNEVENTFUL WEEKEND
MAX AFTER SOME SWEET PATATOES
So not much to report here from CCHMC, Max's platelet count was 94 today which is about half way to where it should be. He has begun to show some interest in eating, and all in all continues to do fantastic. We are still looking at going home sometime early week and we are definitely ready. Beth continues to recover at home and seems to be getting a little better each day, she is also ready for us to be home. Beth definitely misses having her little boy at home. Other than that not much going on, once again THANK YOU FOR ALL THE LOVE AND SUPPORT.
July 15, 2010
One Week Post Op
Here we are. One week post op and things are going extremely well. Max is still doing better than I am, but we are both on the mend.
From a Max standpoint, speech and OT have both been by today. Max was a complete crank so nothing was accomplished. They will retry tomorrow. His platelets came up to 18 today which is still very low, but they are steadily increasing every day, so the doctors are happy. So the plan is to do an xray with contrast on Tuesday to check the swelling in the new ureter and kidney. If all goes well they will pull the catheter and possibly sent us home that afternoon. They may decide to keep him so that they can watch his labs a little more closely. We shall see.
As far as I go. I am doing well. I am still pretty uncomfortable, but it's tolerable. The worst part is trying to get comfortable enough to sleep at night. I am pretty bloated and swollen in the abdomen region and my ribs and pelvic bone are sore, but overall I am surviving.
So what does it feel like to donate a kidney? Well it feels like a train rain over you, reversed and rain over you again. It hurts- really bad. I knew there would be pain, but I was not prepared for the kind of pain that I experienced. Morphine wasn't working and the stronger pain medication that they put me on wasn't working either. Every time I moved or talked I got extremely nauseous. I vomited a couple of times- OUCH! I could barely keep my eyes open. I was light headed, couldn't see straight and just overall felt like crap. Would I do it again? Absolutely.
Seeing the change in Max has made all of this absolutely worth every ounce of pain that I have had. Max's lips are no longer dry, he no longer has circles under his eyes, his coloring is better and he has not gagged once since the surgery. For those of you that know Max you know that he gagged and retched at least a dozen times a day. He has not done it once since last Thursday. It's incredible to see the strides that he has made in just a short 7 days. You can see his little wheels turning all the time. The light is finally coming on in his little head and it's unbelievable to see. He won't nap because of everything going on around him which makes for a very cranky little boy, but overall he is doing phenomenal!
I can't believe it. This whole experience has been so surreal. I am so glad that it's over and we are ready for him to come home, but I am trying to cherish all of these milestones. The experience has been bittersweet for me as well. I have to admit that I had a few days of depression after the surgery. I realized that I left the little boy that we all have grown to know and love on A7 central Thursday morning. I kissed him goodbye and didn't realize that I would never see that little boy again. I am at peace with that now. I realized we didn't loose the old Max, we just got something better. We got the honor of receiving the new "Max 2010" on July 8 and we can't wait to learn all the new things that he's got to offer.
Thank you for coming along with us on the journey of End Stage Renal Disease. This is me officially (and finally) ending that chapter and beginning the new one of Max's life post transplant.
July 14, 2010
Max and Beth Update
Hello everybody It's Tim again
Sorry We haven't posted in a couple of Days. Things Here at CCHMC are going well, Max is recovering nicely. He is like a whole new boy, he's almost back to his normal self, bouncing around his crib and playing like he didn't have major surgery 6 days ago. His platelet count has begun to stabilize and his doctors are happy with all his other numbers. He has changed so much for the better it is unbelievable, who knew a kidney would change him in so many other ways. Max has not gaged once since surgery, he seems more attentive and even his lips look better.
Now for Beth, she is feeling much better than she was on Monday. She is still a ways away from being recovered, but is doing well. She says she will post a more detailed update tomorrow so until then goodnight.
Sorry We haven't posted in a couple of Days. Things Here at CCHMC are going well, Max is recovering nicely. He is like a whole new boy, he's almost back to his normal self, bouncing around his crib and playing like he didn't have major surgery 6 days ago. His platelet count has begun to stabilize and his doctors are happy with all his other numbers. He has changed so much for the better it is unbelievable, who knew a kidney would change him in so many other ways. Max has not gaged once since surgery, he seems more attentive and even his lips look better.
Now for Beth, she is feeling much better than she was on Monday. She is still a ways away from being recovered, but is doing well. She says she will post a more detailed update tomorrow so until then goodnight.
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