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.
July 12, 2010
BIG BIG DAY
Ok so first off I'm glad you all liked the video. Next up Beth is starting to feel a little better and is starting to eat a little bit. Now for Max, as you can see in the video he is starting to feel pretty good. His lab work this morning continues to improve, his kidneys doctors are happy ( BUN 15 Creatnin 0.2) Liver Doctor says she just wants to monitor his blood work for a couple more days then she is no longer needed. His platelet count is still low but the rate at which they are disappearing has improved so that is definitely good.
Alright Are you ready for the BIG BIG NEWS OF THE DAY. It's moving day here at CCHMC. Beth is moving to her make shift 1st floor bedroom at home, and Max (drum roll please) is MOVING OUT OF THE ICU TO THE REGULAR FLOOR ( applause ).
Thank You Again for all of the love and support, I don't know how we could do it with all of it.
Tim
Alright Are you ready for the BIG BIG NEWS OF THE DAY. It's moving day here at CCHMC. Beth is moving to her make shift 1st floor bedroom at home, and Max (drum roll please) is MOVING OUT OF THE ICU TO THE REGULAR FLOOR ( applause ).
Thank You Again for all of the love and support, I don't know how we could do it with all of it.
Tim
July 11, 2010
July 9, 2010
Just Another Curve Ball
Hello Everyone this is officially the first time I have Posted,
I thought I would post a little update since my lovely wife is not feeling up to it just yet. Beth is still having allot of pain but she has gotten up a couple of times. She has yet to make it up to see Max, for all of you that know Beth that should give you an idea of the pain she is in. Other than the pain, a little nausea and a headache there is not much going on with Beth, just resting and healing.
As for Max, He has yet again thrown us a curve ball. Max's platelet levels have been low since surgery and the Doctors have all been scratching their heads and running test trying to figure out why. It has been a very busy day for the poor little guy, we have seen nephrology, surgery, radiology, urology and hematology today, all of which have had theories and ideas of the cause. Once again Max stumped them none of the test proved anybodies idea right. I think between today and yesterday Max has had an ultrasound done on every body part. We even had Dr. Alonso and the radiologist present for the last ultrasound.
After all of that, the doctors have all talked and come up with another idea of what might be causing the low platelets levels. They feel Max's liver may have bruised during surgery and some test have shown his liver enzymes are elevated which would indicate that this is true. So as of now the plan is to keep an eye on his blood test as the liver should slowly heal itself and possibly help it along with some vitamin K if needed. So lets all keep our fingers crossed that this is the culprit and it corrects itself with a little time
Thanks Again For All The Love And Support
Tim
I thought I would post a little update since my lovely wife is not feeling up to it just yet. Beth is still having allot of pain but she has gotten up a couple of times. She has yet to make it up to see Max, for all of you that know Beth that should give you an idea of the pain she is in. Other than the pain, a little nausea and a headache there is not much going on with Beth, just resting and healing.
As for Max, He has yet again thrown us a curve ball. Max's platelet levels have been low since surgery and the Doctors have all been scratching their heads and running test trying to figure out why. It has been a very busy day for the poor little guy, we have seen nephrology, surgery, radiology, urology and hematology today, all of which have had theories and ideas of the cause. Once again Max stumped them none of the test proved anybodies idea right. I think between today and yesterday Max has had an ultrasound done on every body part. We even had Dr. Alonso and the radiologist present for the last ultrasound.
After all of that, the doctors have all talked and come up with another idea of what might be causing the low platelets levels. They feel Max's liver may have bruised during surgery and some test have shown his liver enzymes are elevated which would indicate that this is true. So as of now the plan is to keep an eye on his blood test as the liver should slowly heal itself and possibly help it along with some vitamin K if needed. So lets all keep our fingers crossed that this is the culprit and it corrects itself with a little time
Thanks Again For All The Love And Support
Tim
The Day After
Hello Everyone and, no, this is not Beth. Day 2 has been a very uncomfortable day for Beth and Max. Beth has been having a lot of pain, which she anticipated. What she didn't expect was the severe nausea, muscle spasms and headache that accompanies the surgery and the morphine pca.
Her catheter was taken out today and she was given 8 hours to get up and pee. I know, for a fact, that she waited as long as she did because of the pain associated with getting out of bed. When she finally couldn't hold it anymore, she called for assistance and, of course, a male pca came in. My modest daughter looked at me wide eyed and with regret for even calling out for help. Needless to say, she had to pee that bad. Luckily, after the nausea and the feeling that she was going to pass out, we made it to the bathroom without the aide seeing her butt, and after sitting for 15minutes, she was successful.
Max is doing okay but is also having a bad day. He is also having a lot of pain and is on a Fentanyl PCA pump. He is groggy and cranky but, according to his dad, is looking better. His labs are a little abnormal but beginning to stabilize. Their main concern right now is his low platelet count. The docs are assuming that this may be caused by one of his medications which, hopefully, is an easy fix.
So keep the prayers going because they have definitely made a difference. Hopefully, Beth, Tim and Max have a more restful night.
Her catheter was taken out today and she was given 8 hours to get up and pee. I know, for a fact, that she waited as long as she did because of the pain associated with getting out of bed. When she finally couldn't hold it anymore, she called for assistance and, of course, a male pca came in. My modest daughter looked at me wide eyed and with regret for even calling out for help. Needless to say, she had to pee that bad. Luckily, after the nausea and the feeling that she was going to pass out, we made it to the bathroom without the aide seeing her butt, and after sitting for 15minutes, she was successful.
Max is doing okay but is also having a bad day. He is also having a lot of pain and is on a Fentanyl PCA pump. He is groggy and cranky but, according to his dad, is looking better. His labs are a little abnormal but beginning to stabilize. Their main concern right now is his low platelet count. The docs are assuming that this may be caused by one of his medications which, hopefully, is an easy fix.
So keep the prayers going because they have definitely made a difference. Hopefully, Beth, Tim and Max have a more restful night.
July 8, 2010
Thank You
Thank you for all your continued love and support. We are truly blessed to have such great friends and family. I also wanted to let all of you know how strong of a woman Beth is. She has undergone so much for Max. I LOVE AND ADORE HER MORE THAN I CAN EVER SHOW. Thank you so much for your support and prayers.
Love you all, Tim Livingston
Love you all, Tim Livingston
Updates on Transplant
Hello everyone!
This is Allie, ( Beths best friend) I will be letting you all know as updates come about. Currently Beth and Max are in the operating room and thats all i got, so keep those prayers coming!
10:30am - Beths kidney is out and Maxs is almost out.
11:45am - Beths healthy little kidney is out and being prepped to go into mighty Max! It is estimated that Beth will be out of surgery in about an hour and a half. It's almost time for the switch-a-roo!
12:35pm- Beth is heading to recovery. I hear her surgery went great. They are halfway through sewing Maxs new kidney in! things are also going well with his surgery currently. Keep on praying!
1:15pm - Dr. Ben says the kidney is in, and its pink! Tim just left to go see wonder woman in recovery!
*Beth is heading up to her room. Max is still in surgery. The kidney is good, and it already peed! I think Beth is feeling a bit rough.
3:30pm - Max is in the process of getting closed up now. Doctors should be out in about an hour to talk to Tim. They need prayers for speedy recoveries!
4:16pm - Max is out and in recovery. Everything went great, and nothing but good news on our end! continue prayers for quick recoveries!
Beth was right in her last post, today WAS a good day. Thanks to everyone for all the prayers, they seemed to work! They were in awesome hands today!
This is Allie, ( Beths best friend) I will be letting you all know as updates come about. Currently Beth and Max are in the operating room and thats all i got, so keep those prayers coming!
10:30am - Beths kidney is out and Maxs is almost out.
11:45am - Beths healthy little kidney is out and being prepped to go into mighty Max! It is estimated that Beth will be out of surgery in about an hour and a half. It's almost time for the switch-a-roo!
12:35pm- Beth is heading to recovery. I hear her surgery went great. They are halfway through sewing Maxs new kidney in! things are also going well with his surgery currently. Keep on praying!
1:15pm - Dr. Ben says the kidney is in, and its pink! Tim just left to go see wonder woman in recovery!
*Beth is heading up to her room. Max is still in surgery. The kidney is good, and it already peed! I think Beth is feeling a bit rough.
3:30pm - Max is in the process of getting closed up now. Doctors should be out in about an hour to talk to Tim. They need prayers for speedy recoveries!
4:16pm - Max is out and in recovery. Everything went great, and nothing but good news on our end! continue prayers for quick recoveries!
Beth was right in her last post, today WAS a good day. Thanks to everyone for all the prayers, they seemed to work! They were in awesome hands today!
July 7, 2010
It's going to be a good day
It's here. The day that we have been anticipating for the past 2 years is finally here. We are so excited to have this day behind us and for Max to get to experience what it's like to be a "normal" kid.
Through this journey we have gotten to know a lot of people. People that have changed our lives forever. We have learned lessons that will have an impact on us for the rest of our lives. We are not regretful that we were chosen to parent a child with ESRD. We are blessed. Max is who he is because of the hand that was dealt to him. Max is a beautiful little boy on the inside and outside. He puts a smile on everyone's face that comes in contact with him. He is an extraordinary little boy that has the potential of doing great things when he grows up.
I have had the honor of meeting a few other kidney baby mamas in the past few weeks. They are all from Tennessee and two of them have chosen to come to Cincinnati for their little ones transplants. Laura's little girl, Summer, has been put into our old slot of July 27th. Everything happens for a reason and I feel that Max's transplant was moved up so that Summer could get her daddy's kidney without having to wait too much longer. Yvette gave her little boy, Brandon, her kidney about 8 weeks ago and both are doing beautifully. Yvette has come to the hospital to see both Laura and I just to make sure that we are hanging in there and doing well. She has been a blessing for me because she has already been through the transplant. She is answering all of my questions. She cries and laughs with me and tells me how awesome it is to see your child blossom with their "new" kidney. Yvette- thank you. Thank you for all that you have done for me in the past few weeks. I just met you but I feel like I have known you my whole life. You truly are a blessing to us and we are honored to have gotten to know you in real life rather than just over the internet. Thank you.
We also need to thank all of you who are praying for us. The prayer vigil such a huge hit that it got extended to 48 hours rather than just 24. You all are amazing for doing this. It means so much that so many of you are out there praying for us. Whoever prayed for Tim and I to find peace tonight, thank you. The prayer was answered. My brother and sister-in-law came over with dinner, Max was cracking us all up and Yvette came to see us. It was such an enjoyable evening and we are at peace with what tomorrow will bring. We feel that this surgery is going to go well. We know that there will be complications, but they won't be anything that we can't handle. Max is a tough little guy and will pull through this. We have gotten this far. There is no way that God would end our journey now. Not after all that we have been through.
In 9 hours I will head down to the same day surgery area, get signed in, have an IV placed, get into my gown and wait for the life changing moment that we have been waiting so long for. At 7:45 tomorrow morning I will be wheeled into the OR for the third time in my life. The first time was the open fetal surgery that saved Max's life. The second time was on May 12, 2008- the day that Max was born. The third will be the second time that I have gotten the honor of saving my son's life.
Tomorrow is a new day. July 8, 2010 is the day that Max gets a chance at a new life. Tomorrow is going to be beautiful.
July 4, 2010
The Plan
We have been so busy this weekend, but enjoying ourselves as well. We spent Saturday evening with family and friends at a river camp. Sunday has been filled with running errands and trying to get things together for the upcoming week.
I wanted to let you all know what the plan is for this week as we get ready for Thursday.
Monday- Max needs to have his PPD (TB test) read, so we wil be heading to CCHMC for this sometime in the early afternoon. There is talk about my whole family going to my Aunt's house around 2pm to celebrate and to see everyone before the big day. We are also going to Tim's parent's house to eat dinner with his family.
Tuesday- Max and I have an appointment at 8am at CCHMC to have our final cross match drawn. This is the final work up that both Max and I have to have before the surgery. These results will hopefully show that nothing has changed from the original bloodwork that we had at the beginning of this process. The doctors want us to hang around for the results. If Max's labs are wacky they will go ahead and admit him so that they can do 24 hour dialysis to get him good and ready for transplant. If they are good, we will be heading home for our last night before he gets admitted.
Wednesday- Max will be getting admitted sometime in the afternoon. My guess is around 3pm. I am hoping to get Max's hair cut in the morning :o) He will have a mullet if I don't.
Thursday- The BIG day! I am due to be at same day surgery at 5:30am. I will get my IV put in, get into my gown and wait for the doctors to come talk to me. The surgery is due to start around 7:45am.
I am still in shock that all of this is happening so quickly. I am on the biggest emotional roller coast ride of my life. I cry when I hear a sappy song on the radio. I choke up when someone hugs me because it's the last time they will see me before the surgery. I cry as I watch Max sleep at night. I cry just because I am thinking about everything that's about to happen. I can gaurentee you that I will cry when we hook Max up for his last dialysis treatment and I will ball my eyes out when I have to say goodbye to him as I head to same day surgery on Thursday morning. I am sure that I will cry while I wait in that tiny little room waiting for my turn to be taken back.
I am scared, anxious, nervous, excited, scared, overwhelmed and scared. I am scared mostly for Max. I have to be honest, I haven't even thought about my part in this yet. My biggest concern right now is Max. I need him to pull through this. I can't lose him now- not after all that we have been through. I am confident that the doctors wouldn't be doing this if they didn't think he would survive. He will pull through. We will pull through this. I am not naive. I know that there are going to be complications. We just pray that they are minor. Please pray with us that all complications are minor.
We wouldn't leave you guys hanging all day without any updates, so my best friend, Allie, will be updating the blog and Facebook throughout the day Thursday. If you have any questions please don't hesitate to ask them. She will be there all day supporting us and to keep you all informed.
I will post again before the surgery. Please keep praying for this to go well.
My cousin Jessica is putting together a 24 hour pray vigil starting the hour of the surgery. If you would be interested to take part in this please email her at Jessica.Wells@FMR.com. It sounds like each person can choose which time they would like to do. The times are in half hour intervals. Thank you to everyone who is taking part in this. It means the world to us to know that there are so many prayers being sent up for both Max and I.
I wanted to let you all know what the plan is for this week as we get ready for Thursday.
Monday- Max needs to have his PPD (TB test) read, so we wil be heading to CCHMC for this sometime in the early afternoon. There is talk about my whole family going to my Aunt's house around 2pm to celebrate and to see everyone before the big day. We are also going to Tim's parent's house to eat dinner with his family.
Tuesday- Max and I have an appointment at 8am at CCHMC to have our final cross match drawn. This is the final work up that both Max and I have to have before the surgery. These results will hopefully show that nothing has changed from the original bloodwork that we had at the beginning of this process. The doctors want us to hang around for the results. If Max's labs are wacky they will go ahead and admit him so that they can do 24 hour dialysis to get him good and ready for transplant. If they are good, we will be heading home for our last night before he gets admitted.
Wednesday- Max will be getting admitted sometime in the afternoon. My guess is around 3pm. I am hoping to get Max's hair cut in the morning :o) He will have a mullet if I don't.
Thursday- The BIG day! I am due to be at same day surgery at 5:30am. I will get my IV put in, get into my gown and wait for the doctors to come talk to me. The surgery is due to start around 7:45am.
I am still in shock that all of this is happening so quickly. I am on the biggest emotional roller coast ride of my life. I cry when I hear a sappy song on the radio. I choke up when someone hugs me because it's the last time they will see me before the surgery. I cry as I watch Max sleep at night. I cry just because I am thinking about everything that's about to happen. I can gaurentee you that I will cry when we hook Max up for his last dialysis treatment and I will ball my eyes out when I have to say goodbye to him as I head to same day surgery on Thursday morning. I am sure that I will cry while I wait in that tiny little room waiting for my turn to be taken back.
I am scared, anxious, nervous, excited, scared, overwhelmed and scared. I am scared mostly for Max. I have to be honest, I haven't even thought about my part in this yet. My biggest concern right now is Max. I need him to pull through this. I can't lose him now- not after all that we have been through. I am confident that the doctors wouldn't be doing this if they didn't think he would survive. He will pull through. We will pull through this. I am not naive. I know that there are going to be complications. We just pray that they are minor. Please pray with us that all complications are minor.
We wouldn't leave you guys hanging all day without any updates, so my best friend, Allie, will be updating the blog and Facebook throughout the day Thursday. If you have any questions please don't hesitate to ask them. She will be there all day supporting us and to keep you all informed.
I will post again before the surgery. Please keep praying for this to go well.
My cousin Jessica is putting together a 24 hour pray vigil starting the hour of the surgery. If you would be interested to take part in this please email her at Jessica.Wells@FMR.com. It sounds like each person can choose which time they would like to do. The times are in half hour intervals. Thank you to everyone who is taking part in this. It means the world to us to know that there are so many prayers being sent up for both Max and I.
July 2, 2010
Well we got new information today. News that rocked my world for the better. The news first brought fear, then excitement. It brought tears and a smile that I couldn't wipe from my face.
The unfortunate part was that I didn't get to hear the news from Dr. Ben and Dr. Brad. It was their news to share with us and someone spilled the beans before they got the chance. When I saw Dr. Ben and Dr. Brad walk through the door, I could see their excitement. When they found out that we had already heard, their faces sank. I could see the excitement leave them. They were robbed of this fantastic opportunity to tell me this exciting piece of information. It broke my heart. They confirmed the news I had heard earlier in the day and gave me the details. They both walked out of the room to get some other details taken care of. Dr. Brad walked in to talk to me about a medication that Max will need to start tomorrow and he had this look on his face. A look of satisfaction. A look of pride. It was at that moment that I thought I saw Dr. Brad's eyes get glassy. He turned to me and said this is a very good thing. He walked out of the room and I started to cry.
Today we got the news that this coming Thursday, July 8, 2010 at 7:45am Max will be receiving my kidney.
The unfortunate part was that I didn't get to hear the news from Dr. Ben and Dr. Brad. It was their news to share with us and someone spilled the beans before they got the chance. When I saw Dr. Ben and Dr. Brad walk through the door, I could see their excitement. When they found out that we had already heard, their faces sank. I could see the excitement leave them. They were robbed of this fantastic opportunity to tell me this exciting piece of information. It broke my heart. They confirmed the news I had heard earlier in the day and gave me the details. They both walked out of the room to get some other details taken care of. Dr. Brad walked in to talk to me about a medication that Max will need to start tomorrow and he had this look on his face. A look of satisfaction. A look of pride. It was at that moment that I thought I saw Dr. Brad's eyes get glassy. He turned to me and said this is a very good thing. He walked out of the room and I started to cry.
Today we got the news that this coming Thursday, July 8, 2010 at 7:45am Max will be receiving my kidney.
There was a little confusion with the two posts below that have similar titles. They are different posts. Sorry :o)
Max's treatment went "swimmingly" last night. I am still waiting to hear from the doctor's on what the plan is and if we get to go home today. I will let you guys know as soon as I do.
Thank you for all of your thoughts and prayers.
25 days and counting...
Max's treatment went "swimmingly" last night. I am still waiting to hear from the doctor's on what the plan is and if we get to go home today. I will let you guys know as soon as I do.
Thank you for all of your thoughts and prayers.
25 days and counting...
July 1, 2010
Today's Plan
Okay so we finally have a plan and have put it into action. Max just finished a four hour trial of PD to see if it would work on the cycler and it did. So, we are going to hook him back up around 7pm for his 12 hour treatment, just like we would do at home, to see if it will work. This is when we usually find ourselves having issues. We are hoping that if we start the treatment while Max still awake, we can get through the problematic first 2 or 3 cycles. If this fails, we are going to try the hospital's cycler to make sure that it's not our personal one that I brought from home.
Other than that, we all still think that his fill volumes are too low for the machine's liking. We have to move very slowly to get him back up to his fill volume of 480mL because of the 2 surgeries that he had only 10 days apart. He went up to 280mL this afternoon and I am hoping that they will increase him to 300mL tomorrow. The sooner we get that level up the better. We shall see if that really is the issue.
We have totally ruled out that it's not the catheter, thank goodness. It's either the machine or his fill volume.
Keep those fingers crossed that we figure this out so that we can go home and enjoy the holiday weekend.
Other than that, we all still think that his fill volumes are too low for the machine's liking. We have to move very slowly to get him back up to his fill volume of 480mL because of the 2 surgeries that he had only 10 days apart. He went up to 280mL this afternoon and I am hoping that they will increase him to 300mL tomorrow. The sooner we get that level up the better. We shall see if that really is the issue.
We have totally ruled out that it's not the catheter, thank goodness. It's either the machine or his fill volume.
Keep those fingers crossed that we figure this out so that we can go home and enjoy the holiday weekend.
Another terrible, horrible, no good, very bad week
We have been in the hospital since Monday morning and there is no light at the end of the tunnel.
Max's surgery went very well on Monday afternoon and he pulled through like a champ. We tried out the catheter on Monday night with confidence that it was going to work and that we would be discharged on Tuesday. Well it didn't work. We are having the same problems that we had with the last catheter- it fills beautifully, drains well until you get half the volume back and then stops. So we had to end his therapy early, again. It was 3am by the time we got him disconnected and I was able to finally get some sleep. 6am comes around and a surgery resident comes in, turns on the biggest and brightest light that the room has to offer to look at Max's site. Well good morning to you too jerk. We were thankfully both able to fall back asleep for a couple more hours.
Tuesday was possibly the worst day thus far. Everyone wanted to try a manual PD but because it takes a lot of man hours, the nurses on the floor can't do it. We had to go to the PICU. I told the doctors that I knew how to do it since Max went home on it for a week when he was 5 months old. They all said that I couldn't do it because of what the policy says. So they put the orders in for us to be transferred to the PICU. Four hours later we were on our way. we got to the PICU and all hell broke loose. The nurse immediately started throwing a fit because there wasn't a nurse with Max and because he wasn't on any monitors. Then she threw a fit because Max was screaming and holding is breath because he had just woken up and was in a new environment with a new nurse who he had never seen before. So when she hook him up to the monitors, his sats were in the 50's. She freaked out and called the response team. I told her that he does this and that he will come up on his own. She refused and started shoving the mask in his face. I told her that the mask pisses him off even more and she wouldn't listen. I took it from her and told her that I would do it. I held it near his face so that he was at least getting a little oxygen and he ended up coming up on his own. This nurse was just flat out rude to both Max and I. She was then telling Max to sit still while she tried to get a blood pressure. I wanted to freaking punch her. What screaming two year old is going to sit still for a blood pressure? She went straight into the rules of the PICU- the parents aren't allowed to do any of the care, we aren't allowed to do the dialysis, vitals every hour, assessments every two, no food, only 3 visitors at a time, etc. I was fine with the "rules" but the way she said them made me even more ticked off. Just flat our rude! She then proceeded to tell me that she doesn't even know why we are here because they don't know how to do the manual dialysis either. I looked at her and said you have got to be freaking kidding me. By this point I was on the verge of tears. She finally said that she was going to leave us alone and let Max calm down. It's a damn good thing so left us alone for a bit. I needed to calm down myself.
The manager eventually came in and said, "So I hear that you have had a rough transition." You think? She apologized and told me that they were looking for the policy to see if we could go back to the floor and have me do the manual dialysis. About an hour later they came back in and said that the policy is a mess and needs to be rewritten. The first paragraph says that the nurses on the floor can't do the manual because of the man hours it entails. The paragraph right below that says that they can if they have the resources. In this case, I am the resource. I am infuriated at this point. WHY wasn't the policy pulled out and read before we went through the trouble of being forced to the PICU with this extremely rude nurse? I was absolutely infuriated at this point. The decision was finally made for us to stay in the PICU for the night on manual dialysis and we would be transferred back to the floor on Wednesday. Fine. We can deal with one night. Tim decided to let me go home and sleep since I was running on about 4 hours total. Thank you Tim.
Manual dialysis went beautifully throughout the night, so they wanted to try him on the cycler before we got moved back to the floor. We hooked him up to a four hour cycle and it too went beautifully. Max slept through two of his drains and it still worked. That was my biggest concern, since that is when we have the most problems. We were then transferred back to the floor with the nurses that we have grown to know and love. We got situated, again, and took Max for a walk. It was absolutely gorgeous yesterday so it was very nice to get him outside to enjoy it for a bit. We got back to our room and waited for the orders to be put in for the dialysis. I got to go home again to sleep while Tim stayed with Max.
That brings us to today, Thursday. I called Tim this morning to see how things went and he said that they had to stop it after his third cycle. The first drain is what ruined the treatment. The first drain left him with a negative UF of 114. His second drain went much better, but was still negative about 10. The third drain went just as well as the second but because he was already at a high negative UF the machine couldn't go any further. It's a safety mechanism that prevents over fill of the fluid.
I have been here since 7:45am and I am yet to see or hear from anyone with what the plan is. It's so frustrating that it takes them hours to decide on what to do.
I will update as soon as I know what the plan is.
Max's surgery went very well on Monday afternoon and he pulled through like a champ. We tried out the catheter on Monday night with confidence that it was going to work and that we would be discharged on Tuesday. Well it didn't work. We are having the same problems that we had with the last catheter- it fills beautifully, drains well until you get half the volume back and then stops. So we had to end his therapy early, again. It was 3am by the time we got him disconnected and I was able to finally get some sleep. 6am comes around and a surgery resident comes in, turns on the biggest and brightest light that the room has to offer to look at Max's site. Well good morning to you too jerk. We were thankfully both able to fall back asleep for a couple more hours.
Tuesday was possibly the worst day thus far. Everyone wanted to try a manual PD but because it takes a lot of man hours, the nurses on the floor can't do it. We had to go to the PICU. I told the doctors that I knew how to do it since Max went home on it for a week when he was 5 months old. They all said that I couldn't do it because of what the policy says. So they put the orders in for us to be transferred to the PICU. Four hours later we were on our way. we got to the PICU and all hell broke loose. The nurse immediately started throwing a fit because there wasn't a nurse with Max and because he wasn't on any monitors. Then she threw a fit because Max was screaming and holding is breath because he had just woken up and was in a new environment with a new nurse who he had never seen before. So when she hook him up to the monitors, his sats were in the 50's. She freaked out and called the response team. I told her that he does this and that he will come up on his own. She refused and started shoving the mask in his face. I told her that the mask pisses him off even more and she wouldn't listen. I took it from her and told her that I would do it. I held it near his face so that he was at least getting a little oxygen and he ended up coming up on his own. This nurse was just flat out rude to both Max and I. She was then telling Max to sit still while she tried to get a blood pressure. I wanted to freaking punch her. What screaming two year old is going to sit still for a blood pressure? She went straight into the rules of the PICU- the parents aren't allowed to do any of the care, we aren't allowed to do the dialysis, vitals every hour, assessments every two, no food, only 3 visitors at a time, etc. I was fine with the "rules" but the way she said them made me even more ticked off. Just flat our rude! She then proceeded to tell me that she doesn't even know why we are here because they don't know how to do the manual dialysis either. I looked at her and said you have got to be freaking kidding me. By this point I was on the verge of tears. She finally said that she was going to leave us alone and let Max calm down. It's a damn good thing so left us alone for a bit. I needed to calm down myself.
The manager eventually came in and said, "So I hear that you have had a rough transition." You think? She apologized and told me that they were looking for the policy to see if we could go back to the floor and have me do the manual dialysis. About an hour later they came back in and said that the policy is a mess and needs to be rewritten. The first paragraph says that the nurses on the floor can't do the manual because of the man hours it entails. The paragraph right below that says that they can if they have the resources. In this case, I am the resource. I am infuriated at this point. WHY wasn't the policy pulled out and read before we went through the trouble of being forced to the PICU with this extremely rude nurse? I was absolutely infuriated at this point. The decision was finally made for us to stay in the PICU for the night on manual dialysis and we would be transferred back to the floor on Wednesday. Fine. We can deal with one night. Tim decided to let me go home and sleep since I was running on about 4 hours total. Thank you Tim.
Manual dialysis went beautifully throughout the night, so they wanted to try him on the cycler before we got moved back to the floor. We hooked him up to a four hour cycle and it too went beautifully. Max slept through two of his drains and it still worked. That was my biggest concern, since that is when we have the most problems. We were then transferred back to the floor with the nurses that we have grown to know and love. We got situated, again, and took Max for a walk. It was absolutely gorgeous yesterday so it was very nice to get him outside to enjoy it for a bit. We got back to our room and waited for the orders to be put in for the dialysis. I got to go home again to sleep while Tim stayed with Max.
That brings us to today, Thursday. I called Tim this morning to see how things went and he said that they had to stop it after his third cycle. The first drain is what ruined the treatment. The first drain left him with a negative UF of 114. His second drain went much better, but was still negative about 10. The third drain went just as well as the second but because he was already at a high negative UF the machine couldn't go any further. It's a safety mechanism that prevents over fill of the fluid.
I have been here since 7:45am and I am yet to see or hear from anyone with what the plan is. It's so frustrating that it takes them hours to decide on what to do.
I will update as soon as I know what the plan is.
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