Prayers for Nephew
- Thread starter MGMIAM
- Start date
jackson1
Silver $$ Contributor
I remember Jedi when ever I pray, many times per day. Sorry to hear about the down turn. Hope it is only temporary. Jedi, I am praying and hoping for you. Waiting for the day when I can hear stories about a boy leading a life of a young boy. Thank you Dianna for keeping us posted, no matter how difficult. Glad to see the pictures of Jedi and his family. Will keep praying for you all.
Bill Norris
Back in the Day
Looking great Jedi. Keep up the good work.
MGMIAM
Gold $$ Contributor
Boy, it’s hard to believe that it’s been a week since I updated you all! Jedi stayed up until midnight to ring in the new year and then was back in the clinic by 9 am to get his labs drawn. He was so tired, but was a trooper getting around in the big UW hospital as the children’s hospital clinic was closed for the holiday. We had a few hiccups (like clinic doors being locked and no computer schedule to put Jedi into for the day), but alas the angels came through for us and we were back to the hotel before 10 am! Jedi’s kidney function labs were back to normal and his counts were stable, so no hospital admission for him! Praise the Lord on that front!
We visited a lot with family over the weekend and enjoyed that immensely. We returned for a lab draw on Monday which showed stable counts and cyclosporine level, but an elevated CMV level. We were really disappointed when we got that news... well, to be perfectly honest I ended up having a good ole cry fest in the bathroom. His CMV levels were trending down so well, and we didn’t know what this new jump would mean for our future here. Jedi really wants to go home to his extended family and his kitty. I was really praying that between Jedi’s counts going up and the antiviral medicine the CMV would not be active anymore. This was just another reminder that we are not to rely on our timetable but on God’s. Our devotion with the boys tonight was on that very topic. I’ve received messages from friends recently on this topic and it’s “popped up” in other areas of my life as well. Sometimes I’m not very quick, so God has to hit me from many different angles
Today we went in for a Cytogam infusion, labs and a doctor visit. Praise the Lord his counts have come up even from Monday...slightly, but we’ll take the win! Electrolytes and kidney function are stable. We should get the CMV level back tomorrow. We were able to meet with Dr. Hofmann to discuss a plan for Jedi’s care going forward. She is very pleased with how Jedi is doing overall. That was very reassuring to hear! She said his counts are right where she would expect them to be and if not for his CMV issues we would already be home. The CMV was a stinker going into the transplant and apparently is going to be a stinker coming out of it as well.
At this point the doctor feels his labs have been stable enough to go to once weekly checks. We have an appointment scheduled for a week to check all his labs and get another Cytogam infusion. As long as his CMV level does not skyrocket and he stays complication-free we may be able to go home at the end of next week. Jedi’s doctor feels like he will need treatment for the CMV for quite a while yet, so it’s looking like the infusions will not be ending anytime soon. Once we are cleared to head home we will need to make at least one trip a week to Madison and potentially more depending on how Jedi is doing. We continue to pray for that miracle of complete healing and God sure can do it! In the meantime we rest in the knowledge that He has a great plan for Jedi!
Thank you all for your support and encouragement. We would not be where we are without it!
I would like to share with you all this bit of encouragement sent to me by a sweet friend:
“He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” Psalms 91:4
Blessings on your new year!
We visited a lot with family over the weekend and enjoyed that immensely. We returned for a lab draw on Monday which showed stable counts and cyclosporine level, but an elevated CMV level. We were really disappointed when we got that news... well, to be perfectly honest I ended up having a good ole cry fest in the bathroom. His CMV levels were trending down so well, and we didn’t know what this new jump would mean for our future here. Jedi really wants to go home to his extended family and his kitty. I was really praying that between Jedi’s counts going up and the antiviral medicine the CMV would not be active anymore. This was just another reminder that we are not to rely on our timetable but on God’s. Our devotion with the boys tonight was on that very topic. I’ve received messages from friends recently on this topic and it’s “popped up” in other areas of my life as well. Sometimes I’m not very quick, so God has to hit me from many different angles
Today we went in for a Cytogam infusion, labs and a doctor visit. Praise the Lord his counts have come up even from Monday...slightly, but we’ll take the win! Electrolytes and kidney function are stable. We should get the CMV level back tomorrow. We were able to meet with Dr. Hofmann to discuss a plan for Jedi’s care going forward. She is very pleased with how Jedi is doing overall. That was very reassuring to hear! She said his counts are right where she would expect them to be and if not for his CMV issues we would already be home. The CMV was a stinker going into the transplant and apparently is going to be a stinker coming out of it as well.
At this point the doctor feels his labs have been stable enough to go to once weekly checks. We have an appointment scheduled for a week to check all his labs and get another Cytogam infusion. As long as his CMV level does not skyrocket and he stays complication-free we may be able to go home at the end of next week. Jedi’s doctor feels like he will need treatment for the CMV for quite a while yet, so it’s looking like the infusions will not be ending anytime soon. Once we are cleared to head home we will need to make at least one trip a week to Madison and potentially more depending on how Jedi is doing. We continue to pray for that miracle of complete healing and God sure can do it! In the meantime we rest in the knowledge that He has a great plan for Jedi!
Thank you all for your support and encouragement. We would not be where we are without it!
I would like to share with you all this bit of encouragement sent to me by a sweet friend:
“He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.” Psalms 91:4
Blessings on your new year!
MGMIAM
Gold $$ Contributor
Jedi is coming home!
The title kind of says it all. Jedi’s tests came back today and they were good. Not great but good and that’s enough for us to come home. His CMV held steady(darn thing), as did most of his other labs. His lymphocytes almost doubled again so that was good news!
For Jedi it will have been 70 days since he’s been home... He’s super excited and ready to see his kitty. I came home tonight to clean and organize the house so that Jedi can come home Friday.
It’s been a long road, and it’s definitely not over, but we’re very grateful to be at this point with Jedi.
There is, admittedly, some anxiety with leaving the proximity of the hospital (I have a whole new respect for the idea of “institutionalization”) but it’s a challenge we face boldly knowing we are not alone.
I know we have referenced this verse before but it’s what kept playing in my head all day:
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11 NIV
Thank you for reading and praying with us and have a Blessed night!
Bill Norris
Back in the Day
GREAT NEWS. GOD IS GOOD ALL THE TIME.
Great news. Our prayers will continue; so happy that he can finally come home.
hpshooter
Gold $$ Contributor
Just got my computer out of the repair shop and this was rhe first thread I checked! Your good newa made my day!!!
MGMIAM
Gold $$ Contributor
SWEET HOME ONALASKA
Well, He did it! God put us on the road home....and we made it safely It sure is nice to be back within our own walls and sleeping in our own beds. As you can imagine it’s been a bit of an adjustment getting things settled here. You think we would be experts at moving and settling by now...living in the hospital and Ronald McDonald house for just over a month, then living in the hotel for a month...but that’s just not the case I thought it ironic the other day when a memory from when the boys were younger came just to me. I remember one of the boys commenting how fun it would be to live in hotel. Well, we’ve done it and I assure you, while we are certainly grateful for the accommodations, staying in a hotel long term is overrated We are so thankful to be home!
We are slowly getting things situated with Jedi’s new routine and medications and the boys back in virtual school. Jedi is so excited to be back in the same house with his kitty and they play together quite a bit. It is also nice to be close to Grandpa and Grandma Schaller again and be able to visit more often.
I wasn’t sure if we were going to make it home on Friday as planned, because I had noticed Jedi was more fatigued since they switched his antiviral medicine. On Friday morning he could barely get out of bed he was so tired, so I decided I needed to take him in to have labs to see if his levels were off. Although his labs did show some suppression of his counts (they expected this a little bit with the new antiviral medicine), overall they looked decent. We also found out that he had lost 4 pounds in two days! The providers attributed this to the reduction of fluid with the medicine switch, and a huge fluid shift like can take a toll on Jedi’s body. The nurse practitioner checked him out and said we were good to go home and check labs Monday. Thank the Lord again!
Jedi felt well over the weekend and had fun relaxing, playing games, watching movies and going out for occasional walks. We got his labs drawn this afternoon and unfortunately a few were off. His potassium and phosphorus were high and his creatinine took a pretty big jump. It always seems to be something We are also in a weird situation where we are getting labs here in Lacrosse, but the doctors in Madison are still providing his care. I wasn’t sure who was going to be calling me with a plan, but our awesome Dr. Jen from Gundersen called with the results and the plan. We will reduce Jedi’s Tri-phos slightly, I am going to give him an IV fluid bolus and we are also going to increase his oral fluids. The doctors from Madison will check in tomorrow, and if he’s feeling well we will likely follow up in Madison as planned on Wednesday. Please help us pray that these changes will allow his kidney function to improve and his other levels to stabilize.
With the turn of the year there are a lot of thoughts, questions, etc swirling around in my mind. When will Jedi’s CMV get under control? Will the transplant take completely? Will Jedi develop graft vs. host disease? When will we be able to see our extended family and friends again? I could go on, but I’m sure you get the idea. So much is changing every day and I’m certain there is more to come. When all the questions, the changes and the concerns for the future start to overwhelm I remind myself that what truly matters is that Jesus and His promises never change... “Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8 “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17
I find so much comfort in knowing that He is the sure and stable Rock in this unstable world.
We’re thankful for our Lord and we are thankful for all of you lifting Jedi up in prayer for complete healing. Jedi still thanks God for all the amazing people who are praying for him. Jedi told his nurse, Angie, today that he “wants to be a pastor with a few side jobs” when he grows up. My heart was so happy to hear him say that. I’ve seen firsthand how much of a witness for Christ Jedi has been this last year. I pray that God continues to allow Jedi to do that for many years to come
Well, He did it! God put us on the road home....and we made it safely It sure is nice to be back within our own walls and sleeping in our own beds. As you can imagine it’s been a bit of an adjustment getting things settled here. You think we would be experts at moving and settling by now...living in the hospital and Ronald McDonald house for just over a month, then living in the hotel for a month...but that’s just not the case I thought it ironic the other day when a memory from when the boys were younger came just to me. I remember one of the boys commenting how fun it would be to live in hotel. Well, we’ve done it and I assure you, while we are certainly grateful for the accommodations, staying in a hotel long term is overrated We are so thankful to be home!
We are slowly getting things situated with Jedi’s new routine and medications and the boys back in virtual school. Jedi is so excited to be back in the same house with his kitty and they play together quite a bit. It is also nice to be close to Grandpa and Grandma Schaller again and be able to visit more often.
I wasn’t sure if we were going to make it home on Friday as planned, because I had noticed Jedi was more fatigued since they switched his antiviral medicine. On Friday morning he could barely get out of bed he was so tired, so I decided I needed to take him in to have labs to see if his levels were off. Although his labs did show some suppression of his counts (they expected this a little bit with the new antiviral medicine), overall they looked decent. We also found out that he had lost 4 pounds in two days! The providers attributed this to the reduction of fluid with the medicine switch, and a huge fluid shift like can take a toll on Jedi’s body. The nurse practitioner checked him out and said we were good to go home and check labs Monday. Thank the Lord again!
Jedi felt well over the weekend and had fun relaxing, playing games, watching movies and going out for occasional walks. We got his labs drawn this afternoon and unfortunately a few were off. His potassium and phosphorus were high and his creatinine took a pretty big jump. It always seems to be something We are also in a weird situation where we are getting labs here in Lacrosse, but the doctors in Madison are still providing his care. I wasn’t sure who was going to be calling me with a plan, but our awesome Dr. Jen from Gundersen called with the results and the plan. We will reduce Jedi’s Tri-phos slightly, I am going to give him an IV fluid bolus and we are also going to increase his oral fluids. The doctors from Madison will check in tomorrow, and if he’s feeling well we will likely follow up in Madison as planned on Wednesday. Please help us pray that these changes will allow his kidney function to improve and his other levels to stabilize.
With the turn of the year there are a lot of thoughts, questions, etc swirling around in my mind. When will Jedi’s CMV get under control? Will the transplant take completely? Will Jedi develop graft vs. host disease? When will we be able to see our extended family and friends again? I could go on, but I’m sure you get the idea. So much is changing every day and I’m certain there is more to come. When all the questions, the changes and the concerns for the future start to overwhelm I remind myself that what truly matters is that Jesus and His promises never change... “Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8 “Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” James 1:17
I find so much comfort in knowing that He is the sure and stable Rock in this unstable world.
We’re thankful for our Lord and we are thankful for all of you lifting Jedi up in prayer for complete healing. Jedi still thanks God for all the amazing people who are praying for him. Jedi told his nurse, Angie, today that he “wants to be a pastor with a few side jobs” when he grows up. My heart was so happy to hear him say that. I’ve seen firsthand how much of a witness for Christ Jedi has been this last year. I pray that God continues to allow Jedi to do that for many years to come
MGMIAM
Gold $$ Contributor
He's Fighting
Hello all! Just a quick update prior to our visit to Madison on Wednesday. We got to see Jedi’s transplant doctor, Dr. Hofmann, last week in clinic. It’s always nice to see her and get a detailed update of the plan moving forward based on Jedi’s progress. His counts took quite the hit this week because of the bone marrow suppression caused by the new antiviral. He’s been sleeping a bit more and he says he feels “like my body is just working really hard”. Dr Hofmann says we will see how his counts are this week before we make any changes. Please help us pray that his counts recover better this week. His cmv level was down to 700, so that is good. We pray that it continues to go down so he can get off the antiviral medicine. We were able to take him off one of the immunosuppressants and also his phosphorus supplement, so he’s happy to be taking less medicines. They also drew more engraftment studies, so please pray those counts come back good as well
Overall he’s doing well...just struggling to get up in the morning for school because he is so tired from his body working to heal. He’s been out to play in the snow a few times and tries to take a walk outside every day. He’s really sensitive to the cold, so he can’t stay out very long. He sure is a trooper tho and he keeps fighting to gain his endurance back.
Thank you all for joining us in praying for Jedi’s continued healing. My devotion today reminded me today that “The Lord will fight for you; you need only to be still.” Exodus 14:14
Blessings on your week!
Hello all! Just a quick update prior to our visit to Madison on Wednesday. We got to see Jedi’s transplant doctor, Dr. Hofmann, last week in clinic. It’s always nice to see her and get a detailed update of the plan moving forward based on Jedi’s progress. His counts took quite the hit this week because of the bone marrow suppression caused by the new antiviral. He’s been sleeping a bit more and he says he feels “like my body is just working really hard”. Dr Hofmann says we will see how his counts are this week before we make any changes. Please help us pray that his counts recover better this week. His cmv level was down to 700, so that is good. We pray that it continues to go down so he can get off the antiviral medicine. We were able to take him off one of the immunosuppressants and also his phosphorus supplement, so he’s happy to be taking less medicines. They also drew more engraftment studies, so please pray those counts come back good as well
Overall he’s doing well...just struggling to get up in the morning for school because he is so tired from his body working to heal. He’s been out to play in the snow a few times and tries to take a walk outside every day. He’s really sensitive to the cold, so he can’t stay out very long. He sure is a trooper tho and he keeps fighting to gain his endurance back.
Thank you all for joining us in praying for Jedi’s continued healing. My devotion today reminded me today that “The Lord will fight for you; you need only to be still.” Exodus 14:14
Blessings on your week!
Jedi's determination to fight back never ceases to amaze me; he's definitely doing everything he can to aid in his recovery no matter what the obstacles. Prayers continue.
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