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!
July 8, 2010
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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