Prayers for Nephew
- Thread starter MGMIAM
- Start date
Bill Norris
Back in the Day
Great job once again Jedi. U r a winner. Hang tight. Your days r about to get brighter is my prayer.
MGMIAM
Gold $$ Contributor
Happy Sunday to you all! It’s been a quiet few days here in our little BMT bubble...something we are super thankful for. Jedi’s counts have continued to fluctuate, but they are trending upwards overall. His liver, kidney and electrolyte labs are all stable....more things to give praise to God for! As we sit here at day +25 we are in awe of how the Lord has cared for our sweet little Jedi and helped him heal after his transplant! He has indeed performed a miracle in Jedi and we want to tell the world! Will you help us in spreading Jedi’s story to give praise to God? “I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds.” Psalms 9:1
Jedi’s mouth sores have cleared up with the exception of some swollen gums and a few still on his lips. He has been off the pain medicine for a few days, and he starting eating little bits. One thing we are working out is how much tube feed to give him so he gets enough calories but doesn’t make him too full so he doesn’t want to eat food by mouth. It’s a slow process but one that we will get figured out eventually.
Another challenge we encountered the other day was that one of his medications to prevent graft vs. host needs to be taken as a liquid. You probably remember us saying how much Jedi detests liquid medication from the beginning of his journey. Unfortunately the pill form is massive and smells like skunk so that’s not an option. We had a few issues with vomiting, but we’re working through them. Please help us pray that the transition to taking his other medications by mouth goes better. He would like to get the NG tube out, but if he’s not able to take his medicines by mouth they will discharge him with the tube still in. We are thankful that these are the issues we have to work through because in the grand scheme of things they are minimal.
Tomorrow we will get another CMV level (Thursday’s was basically unchanged). After speaking with Dr. Hofmann it is likely that Jedi will need to be on the IV antiviral medication after discharge. His body needs time to learn how to fight against the CMV again, so we need to support him with medication until that happens. I have to admit I was not excited about still needing this medication, because it can be hard on his kidneys and it requires him to be on so many electrolytes to keep those levels up. We will keep praying his immune system kicks in and that his CMV levels go down.
Our hope and prayer is that we can be discharged this week and be reunited with our boys by the weekend. Patrick and I will have to go talk to various people tomorrow to work out our living arrangements, so help us pray that all goes well.
Advent is a time of great anticipation of the coming of our Lord. As we continue to wait for the “coming” of Jedi’s complete healing I am reminded of God’s word in Micah 7:7, “But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me.”
Blessings to you all!
Jedi’s mouth sores have cleared up with the exception of some swollen gums and a few still on his lips. He has been off the pain medicine for a few days, and he starting eating little bits. One thing we are working out is how much tube feed to give him so he gets enough calories but doesn’t make him too full so he doesn’t want to eat food by mouth. It’s a slow process but one that we will get figured out eventually.
Another challenge we encountered the other day was that one of his medications to prevent graft vs. host needs to be taken as a liquid. You probably remember us saying how much Jedi detests liquid medication from the beginning of his journey. Unfortunately the pill form is massive and smells like skunk so that’s not an option. We had a few issues with vomiting, but we’re working through them. Please help us pray that the transition to taking his other medications by mouth goes better. He would like to get the NG tube out, but if he’s not able to take his medicines by mouth they will discharge him with the tube still in. We are thankful that these are the issues we have to work through because in the grand scheme of things they are minimal.
Tomorrow we will get another CMV level (Thursday’s was basically unchanged). After speaking with Dr. Hofmann it is likely that Jedi will need to be on the IV antiviral medication after discharge. His body needs time to learn how to fight against the CMV again, so we need to support him with medication until that happens. I have to admit I was not excited about still needing this medication, because it can be hard on his kidneys and it requires him to be on so many electrolytes to keep those levels up. We will keep praying his immune system kicks in and that his CMV levels go down.
Our hope and prayer is that we can be discharged this week and be reunited with our boys by the weekend. Patrick and I will have to go talk to various people tomorrow to work out our living arrangements, so help us pray that all goes well.
Advent is a time of great anticipation of the coming of our Lord. As we continue to wait for the “coming” of Jedi’s complete healing I am reminded of God’s word in Micah 7:7, “But as for me, I watch in hope for the Lord, I wait for God my Savior; my God will hear me.”
Blessings to you all!
MGMIAM
Gold $$ Contributor
An Old Villain Returns...
Journal Entry by Patrick Schaller — 4 hours ago
This week has seen Jedi continue to get clinically better, numbers doing well and he’s doing great, while, at the same time, having his CMV continue to cause problems. Most of those problems are potential future issues that we are trying to be proactive about. The main problem it’s causing is timing for Jedi to get to move to the hotel here. Hopefully still this week...
His CMV is getting retested tomorrow and if it could be so kind as to just go away we’d be golden. Barring that it just depends on what the Doctors all think. He also got a visit from Infectious Disease and they got a sample to test some specific things against but they didn’t seem to think there was anything immediate that needed to be done different.
No matter what, Dianna and I, are moving from the RMHC to the hotel today so that the other boys can come spend Christmas with us there. We are all super excited!
It’s hard to believe we’ve been here, and separated, for 37 straight days and counting. Jedi is the most excited as he hasn’t even left this hallway in that time!
So, our prayers today are for Jedi’s BMT to continue to graft and mature successfully. For his CMV levels to go away. For his belly to start to feel better so he can eat more on his own. For his brothers to finish school strong and transition to Madison successfully.
We thank all of you profusely for your continued prayers and support. It means everything to Dianna, Jedi and I.
May the Lord Bless you and your loved ones this days as well.
I have learned to admire and respect Jedi's toughness, especially coming from one so young. Our prayers continue, and hoping he gets beyond that hallway soon.
timeout
Silver $$ Contributor
And from WI.! I pray that Jedi will soon clear all of the hurdles in front of him. God is the cure giver. All things are possible with Him!
Bill Norris
Back in the Day
Great report. Jedi, stay the course and continue to heal. God has a plan no doubt.
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