Well, to start off, I apologize to you for taking so long to write an update. I have a dear prayer warrior that has asked twice if she had missed an update. No, life has just been busy and there hasn't been a lot to say.
Joe is feeling well, his kidney function has been sitting fairly steady in the upper 20%. Anything above 20% delays his transplant. He has still had to increase medication at each monthly blood draw until last month. In May he was able to cut out 2 pills! That is the first time he has had any decrease in at least a year, so you can see we were happy!
Joe and I spent today in OKC seeing his nephrologist and doing a study visit for kids with chronic kidney disease. It was a long day, but we personally learn a lot about Joe's health and the field of nephology has learned so much and continues to study the all around effects kidney disease has on children. As an added bonus, Joe gets paid for all the poking and prodding at least once a year!
Today's blood work showed a slight decrease in function, so we still do not know when we can do the transplant surgery. Jeremy and Joe are all ready to go once we get the "go ahead" from the team.
Thank you for your continued prayers, Joe's anxiety is getting so much better. I was reporting to the psychologist at OU just how well he is doing. We praise God for His faithfulness. Our prayers now focus on asking God for His perfect timing and that Joe will not have to get very sickly before he can have his new kidney. Thank you for praying for all five of us. We cherish each one of you!
Monday, June 3, 2013
Sunday, March 3, 2013
To Keep You Updated
We are in a waiting pattern right now. Jeremy should received full clearance to be able to donate his kidney to Joey this week. They asked for an EKG to be done locally before they said yes. Our physician said everything looked fine on it, so we fully expect Kansas City to give their okay by Wednesday.
Joey is showing an improvement in his kidney function. He is currently at 27% function. At this level we cannot schedule surgery. He must be at or below 20%. At first, I really struggled with this, but I am learning to wait patiently on God's perfect timing. I thought I had a "great" plan for how we could schedule this major "disruption" into our lives and be on our merry way. Of course, God's plan are always better than our own, so we wait.
Joey is feeling okay right now. He is dealing with more psychologically than the physical pains. Medicines are still on-going. We are hoping for our insurance company to approve a new therapist out-of-network. We feel she can help Joey and us prepare for his transplant and life post surgery.
Joey was able to play in his first volleyball tournament this past weekend! It was a lot of fun and a great learning experience, ie we didn't win a game. :) We were thrilled with Joey's energy level throughout the day. So all in all it was a great day!
Please keep praying for us. My concerns with waiting are just wondering what Joey will feel like by the time he is allowed the transplant and what I will need to do with our girls during our hospital stay. Thank you for your words of encouragement and prayers. Thanks for passing this blog along to your friends and trusted prayer warriors. I know without a doubt the reason for my peace is I've received so many prayers on our behalf. God bless!
Joey is showing an improvement in his kidney function. He is currently at 27% function. At this level we cannot schedule surgery. He must be at or below 20%. At first, I really struggled with this, but I am learning to wait patiently on God's perfect timing. I thought I had a "great" plan for how we could schedule this major "disruption" into our lives and be on our merry way. Of course, God's plan are always better than our own, so we wait.
Joey is feeling okay right now. He is dealing with more psychologically than the physical pains. Medicines are still on-going. We are hoping for our insurance company to approve a new therapist out-of-network. We feel she can help Joey and us prepare for his transplant and life post surgery.
Joey was able to play in his first volleyball tournament this past weekend! It was a lot of fun and a great learning experience, ie we didn't win a game. :) We were thrilled with Joey's energy level throughout the day. So all in all it was a great day!
Please keep praying for us. My concerns with waiting are just wondering what Joey will feel like by the time he is allowed the transplant and what I will need to do with our girls during our hospital stay. Thank you for your words of encouragement and prayers. Thanks for passing this blog along to your friends and trusted prayer warriors. I know without a doubt the reason for my peace is I've received so many prayers on our behalf. God bless!
Thursday, February 7, 2013
Jeremy's Donor Evaluation
We just got home from Kansas City tonight. We spent the last two days doing Jeremy's donor evaluation. It was exhausting, very emotional and in the end very good.
I struggled during some of our meetings with the weight of these two surgeries (Jeremy's and Joey's). Jeremy did well, but it was difficult for him too. They evaluate every aspect of him and his family. Past surgeries, medications, family deaths, illnesses, emotions, family dynamics and support.
The funny part of our time was Jeremy asked every person we saw what the religious affliation was of the hospital St. Luke's. On Wednesday, we received three different answers and they were all wrong! My sister looked it up and discovered it is Episcopalian, FYI. Today, we met the priest who is Jeremy's advocate in the donation and he was the first to confirm the denomination. Of course! I have to say, the surgeon did get it right!
Anyway, we did get good results. The surgeon is pleased with Jeremy's kidneys. They have to be sure there is only one artery leading from the aorta to the kidney, it makes it easier on Joey's surgeon. It looks like there is and they plan to take his left kidney. Dr. Moore does think he will do Jeremy surgery at St. Luke's while Joey's will be at Children's Mercy. They will transport the kidney to Mercy. The doc joked that they would FedEx it over. This mom didn't find it funny, but Jeremy appreciated the brevity! We will just have to wait and see. For my own selfish reasons, I would like my boys under the same roof, but Jeremy would receive better care at an adult hospital.
Our last appointment was with a nephrologist to review all of the reports and test results. We were scared for a time that Jeremy's hemoglobin A1C test was slightly elevated, but this doctor said not to worry. A year ago the standard was higher and he would have easily cleared. So, it will likely be an issue discussed in the determination meeting, but not likely to stop us.
So from here, we are waiting on final test results and the transplant team to meet and decide if Jeremy can donate. We are feeling a lot of relief at this point. We have a lot of logistical planning we need to do before surgery, so please pray for us to have peace and wisdom in these matters. Please pray for the transplant team to make the best decision and for us to have peace with their decision. Also, Joe has been having some daily pain. It is better, we think we know the cause, but basically it is just a reality of where he is in kidney failure. So please pray for his comfort both physically and emotionally.
Emma had a great time with her aunt and cousins. We are so thankful for that! Thanks, Missy! Joe and Hope got the week with their Nana and Poppy, so I knew they would be great. We had so much help, we so valued the messages we received this week. Prayers and love from so many people really made a difference.
I struggled during some of our meetings with the weight of these two surgeries (Jeremy's and Joey's). Jeremy did well, but it was difficult for him too. They evaluate every aspect of him and his family. Past surgeries, medications, family deaths, illnesses, emotions, family dynamics and support.
The funny part of our time was Jeremy asked every person we saw what the religious affliation was of the hospital St. Luke's. On Wednesday, we received three different answers and they were all wrong! My sister looked it up and discovered it is Episcopalian, FYI. Today, we met the priest who is Jeremy's advocate in the donation and he was the first to confirm the denomination. Of course! I have to say, the surgeon did get it right!
Anyway, we did get good results. The surgeon is pleased with Jeremy's kidneys. They have to be sure there is only one artery leading from the aorta to the kidney, it makes it easier on Joey's surgeon. It looks like there is and they plan to take his left kidney. Dr. Moore does think he will do Jeremy surgery at St. Luke's while Joey's will be at Children's Mercy. They will transport the kidney to Mercy. The doc joked that they would FedEx it over. This mom didn't find it funny, but Jeremy appreciated the brevity! We will just have to wait and see. For my own selfish reasons, I would like my boys under the same roof, but Jeremy would receive better care at an adult hospital.
Our last appointment was with a nephrologist to review all of the reports and test results. We were scared for a time that Jeremy's hemoglobin A1C test was slightly elevated, but this doctor said not to worry. A year ago the standard was higher and he would have easily cleared. So, it will likely be an issue discussed in the determination meeting, but not likely to stop us.
So from here, we are waiting on final test results and the transplant team to meet and decide if Jeremy can donate. We are feeling a lot of relief at this point. We have a lot of logistical planning we need to do before surgery, so please pray for us to have peace and wisdom in these matters. Please pray for the transplant team to make the best decision and for us to have peace with their decision. Also, Joe has been having some daily pain. It is better, we think we know the cause, but basically it is just a reality of where he is in kidney failure. So please pray for his comfort both physically and emotionally.
Emma had a great time with her aunt and cousins. We are so thankful for that! Thanks, Missy! Joe and Hope got the week with their Nana and Poppy, so I knew they would be great. We had so much help, we so valued the messages we received this week. Prayers and love from so many people really made a difference.
Saturday, January 19, 2013
Feeling the Squeeze!
We are preparing for another trek to Kansas City. This time just me and Jeremy. We will go early in February to evaluate Jeremy for donation. This is a full day and a half of testing and appointments. We are not concerned about this time except for leaving our kids. Our daughter is having a hard time with us being gone. We would appreciate your prayers for peace and joy while we are gone.
Joey has done very well for a few months. This month's blood work showed a slight decrease in kidney function. He is also having some kind of pain nearly daily. Either his bladder, kidney's or stomach hurt. Please pray that these symptoms subside quickly.
We are all showing "signs of stress". Whether it is trouble sleeping, depression or out right anger we seem to all be feeling the strain. We have some great people in our life loving us and praying for us. We are also seeking counseling to help us figure out the best way to deal with all the pressure.
I'll be sure to update again when we return from Kansas City with results. Thank you for all your notes of encouragement, prayers and expressions of love. We feel very blessed. Thanks for taking an interest in our family!
Joey has done very well for a few months. This month's blood work showed a slight decrease in kidney function. He is also having some kind of pain nearly daily. Either his bladder, kidney's or stomach hurt. Please pray that these symptoms subside quickly.
We are all showing "signs of stress". Whether it is trouble sleeping, depression or out right anger we seem to all be feeling the strain. We have some great people in our life loving us and praying for us. We are also seeking counseling to help us figure out the best way to deal with all the pressure.
I'll be sure to update again when we return from Kansas City with results. Thank you for all your notes of encouragement, prayers and expressions of love. We feel very blessed. Thanks for taking an interest in our family!
Wednesday, November 21, 2012
We have much to be thankful for...
I have always believed God new exactly what He was doing when He created each of my children. Especially our son, Joe. Joey was born with a "birth defect" which has led to this road we are now on. Today we received confirmation of Psalms when it say, "You know my inmost being. You knit me together in my mother's womb."
Not only did our creator design my son with an extra flap of tissue, "post-urethral valves", but He did it with this day in mind. Today, November 21, 2012 we learned that Joey and Jeremy have, not the usual 3 shared strands of DNA, but 4. Sounds small to you maybe? Not to me. That extra "bonus" strand will help Joey in the future when he is needing another transplant. That extra strand reminds me that God is divine. He is right here with us on this road and will not leave us nor forsake us now or in the future.
Our coordinator, Rachel told Jeremy that they believe Joey will make a great patient. They want him to continue working on taking his medicine faithfully, on time and without exception. Jeremy will be contacted this next week about beginning his work up for donation.
Today has been a hard day. I am home sick and my husband and kids are celebrating Thanksgiving with out me. However, in the middle of my sadness, my Lord reminded me He loves me and will not forget us. I am glad I am home alone to focus on this news and celebrate our Creator without interruptions!
I pray you enjoy a fun Thanksgiving with your loved ones. Remember, God has a plan for you. It is a good and perfect plan.
Not only did our creator design my son with an extra flap of tissue, "post-urethral valves", but He did it with this day in mind. Today, November 21, 2012 we learned that Joey and Jeremy have, not the usual 3 shared strands of DNA, but 4. Sounds small to you maybe? Not to me. That extra "bonus" strand will help Joey in the future when he is needing another transplant. That extra strand reminds me that God is divine. He is right here with us on this road and will not leave us nor forsake us now or in the future.
Our coordinator, Rachel told Jeremy that they believe Joey will make a great patient. They want him to continue working on taking his medicine faithfully, on time and without exception. Jeremy will be contacted this next week about beginning his work up for donation.
Today has been a hard day. I am home sick and my husband and kids are celebrating Thanksgiving with out me. However, in the middle of my sadness, my Lord reminded me He loves me and will not forget us. I am glad I am home alone to focus on this news and celebrate our Creator without interruptions!
I pray you enjoy a fun Thanksgiving with your loved ones. Remember, God has a plan for you. It is a good and perfect plan.
Sunday, November 11, 2012
Transplant Evaluation
Sorry for the boring title, it's been a long week. We returned from our evaluation in Kansas City. We left after 15 appointments in 3 days! So you can understand our fatigue!
As my boys like to start the story, day 1 I passed out getting my blood drawn. Which at Mercy hospital is a CODE BLUE! Yikes! No less than 20 people responded to me fainting! In my defense, it was a student drawing the blood and they needed 8 vials (she got 2 before I went to "La La" land). Anyway the next day, Joe was a champ, he had 9 vials drawn! Turns out Jeremy is a really good match. We found out today, step two in the process that their blood mixes together without fighting. (Now they have NO excuses!)
We learned a whole lot, more than I care to share on here, but I do ask that you pray for step 3. Step 3 is that Jeremy's DNA and Joey's DNA share at least 3 common strands. I am praying for five. Don't ask me the details, I know not. However, I do understand that the more strands he matches now, the easier it is to get the next transplant. This I can explain if you ever want to know.
Dr. Warady anticipates that surgery will be early summer. It takes months to get both Jeremy and Joey worked up for surgery. Jeremy will need to got to St. Luke's in KC soon for his full evaluation.
We were told to treat this like a treatment, not a cure. Joey has a rough road ahead. The next 18 months will not be easy. However, I know our God goes before us in all of this. Anti-rejection meds are "no walk in the park". We are happy to learn his very restrictive diet will be gone after he gets a new kidney. We were told that some things we hoped for with transplant likely may not happen, but forward we will go.
Thanks for your continued support. We would be lost without your prayers.
As my boys like to start the story, day 1 I passed out getting my blood drawn. Which at Mercy hospital is a CODE BLUE! Yikes! No less than 20 people responded to me fainting! In my defense, it was a student drawing the blood and they needed 8 vials (she got 2 before I went to "La La" land). Anyway the next day, Joe was a champ, he had 9 vials drawn! Turns out Jeremy is a really good match. We found out today, step two in the process that their blood mixes together without fighting. (Now they have NO excuses!)
We learned a whole lot, more than I care to share on here, but I do ask that you pray for step 3. Step 3 is that Jeremy's DNA and Joey's DNA share at least 3 common strands. I am praying for five. Don't ask me the details, I know not. However, I do understand that the more strands he matches now, the easier it is to get the next transplant. This I can explain if you ever want to know.
Dr. Warady anticipates that surgery will be early summer. It takes months to get both Jeremy and Joey worked up for surgery. Jeremy will need to got to St. Luke's in KC soon for his full evaluation.
We were told to treat this like a treatment, not a cure. Joey has a rough road ahead. The next 18 months will not be easy. However, I know our God goes before us in all of this. Anti-rejection meds are "no walk in the park". We are happy to learn his very restrictive diet will be gone after he gets a new kidney. We were told that some things we hoped for with transplant likely may not happen, but forward we will go.
Thanks for your continued support. We would be lost without your prayers.
Saturday, November 3, 2012
Kansas City, here we come!
Well, we have been redirected to Kansas City Mercy Hospital for Joe's transplant. We will go to Kansas City soon to get Joe tested and test Jeremy and myself for donation. It will be an intensive three days with 13 appointments! I am thankful, the tests are pretty non-invasive for Joe. The hardest is blood work and he is a pro at that now!
Please be praying for us, as the appointments draw near, we are all getting more nervous and stressed. We ask that you pray that we can take in all the education information that we will need and can ask wise, clear questions of our doctors. Please also pray that we get the best doctors, both in skill and "bed-side manner". I know the transplant will happen in God's perfect timing. He never shows up too early and is NEVER late!
I feel more peace right now than I have in a while and I know that is directly because of the many prayers offered on our behalf. Many prayers are coming from people we have never met. Let me say thank you! The comments on here have been very uplifting and we all appreciate them. Please also pray for our daughters, especially Emma, as she is very aware of the stress and is needing some extra affirmation.
I'll let you know how our trip goes just as soon as I am able! God bless!
Please be praying for us, as the appointments draw near, we are all getting more nervous and stressed. We ask that you pray that we can take in all the education information that we will need and can ask wise, clear questions of our doctors. Please also pray that we get the best doctors, both in skill and "bed-side manner". I know the transplant will happen in God's perfect timing. He never shows up too early and is NEVER late!
I feel more peace right now than I have in a while and I know that is directly because of the many prayers offered on our behalf. Many prayers are coming from people we have never met. Let me say thank you! The comments on here have been very uplifting and we all appreciate them. Please also pray for our daughters, especially Emma, as she is very aware of the stress and is needing some extra affirmation.
I'll let you know how our trip goes just as soon as I am able! God bless!
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