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Prayers for Nephew

MGMIAM said:
Happy Saturday! We got big news today...Jedi’s white count is up to 0.5! His ANC is 340. Hemoglobin is holding steady and platelets went up on their own for the third day in a row. These are all signs that the donor cells are setting up shop in Jedi and getting to work! We were so excited this morning (and still are), but the mood has been dampened a bit by the fact that Jedi still feels pretty crummy. He continues to have fevers (they say this is still expected), pain from his mouth sores, nausea and weakness. He has slept most of the day so far. The symptoms he is having are all very common for BMT patients at this stage, so we find comfort that he is not having worse complications. Praise the Lord for His provision and answer to our prayers in that way! Jedi has wanted to drink more the last few days, so that is a good sign. He is retaining a bit more fluid, so his weight went up more than it had been. He’s not showing any adverse effects from this aside from a bit of puffiness, so we’ll continue to pray his body is able to get rid of it when the time is right.
Jedi’s CMV level took a jump from Monday to Thursday, so he is going to get the CMV specific IVIG today along with an additional dose daily of the antiviral medication. Since this medicine is hard in the kidneys he needs a fluid bolus before each dose, so please pray that he doesn’t get overloaded with fluid They weigh Jedi twice a day and he is on constant O2 monitoring, so they keep pretty good tabs on him. He’s also up to maintenance NG tube feedings, so he can get nutrition without the stress of having to eat through the mouth sores.
Speaking of NG, we had a unpleasant incident yesterday. Jedi had a bout of nausea that came out of nowhere and he started to vomit. Unfortunately his NG came out with it, so he had to have another one put down. Poor kid was not happy about this remembering the struggles with putting the first one in. We are thankful that this one went in much more smoothly! They have to do an X-ray after placement to make sure it’s in the right spot and that X-ray showed he has a fair amount of stool in his belly. With the lack of food and the mucositis his gut slowed down a bit. Then we added in the tube feedings. His gut needs to wake up and get moving, so we are trying various interventions to make that happen.
Please help us pray for his counts to continue to rise, his mouth sores and extended mucositis to heal, his temperature to come down, his nausea to lessen, his body to flush out that extra fluid, and his bowels to start moving. Pray for all of our patience as we wait on God’s perfect timing for these things to happen.
We continue to be blessed by all of you and are so incredibly thankful. Jedi’s room is nearly wallpapered with all your cards, pictures and well wishes. All the staff comment on how decorated his room is...the walls shout of your prayers, love and care for Jedi! We tell them all how great the community of believers is! We certainly thank God for you every day
Blessings to you all!
“The angel of the Lord encamps around those who fear him, and he delivers them. Taste and see that the Lord is good; blessed is the one who takes refuge in him.” Psalms‬ ‭34:7-8‬
Click to expand...
Does Jedi like the Mandalorian. I ordered my son John a Mandalorian challenge coin for his offhand stand. John gets a lot of anxiety in big air matches, and found having something on his stand help to center him. I was hoping it would be here before we left for Winter Air Gun, but when John read about Jedi he thought he could use the coin and luck more. So if Jedi like Mando then I'll send it as soon as it's delivered here.

Thanks
Paula
 
The Lord is good!

Today Jedidiah’s ANC was 630 and the Doctors informed us during rounds this morning that once it’s over 500 they consider the Transplant to have taken hold.

This is wonderful news and Jedi is trending positively in all areas now. We even have a discharge meeting scheduled for Thursday!

Actual discharge will still be a little ways out as he has numerous “checkboxes” to tick. Mouth sores, eating again, pain management, PT assessment and of course his numbers continuing to climb. Still, it was nice to even talk about getting out of here and reuniting with the rest of our family.

Nothing else, really, to report. The journey is going well and we are very near the top of this metaphorical mountain and ready to begin our down climb.

Thank you once again for being on this journey with us, walking with us, each of you in your own way, and lifting us up in your prayers.

The Lord is good!

“For the Lord is good and his love endures forever; his faithfulness continues through all generations.”
‭‭Psalms‬ ‭100:5‬
 

We have Hope...and engraftment​

Journal Entry by Dianna Schaller — 8 hours ago
The last few days have shown Jedi’s counts increasing slowly but steadily. Today his white count was at 0.9, ANC was at 650, and platelets up to 65K. With three consecutive days of ANC above 500 Jedi is officially engrafted! Praise the Lord for this milestone!
His mouth sores continue to improve in the same way...slow but steady. He has been sleeping a lot, but we all attribute that to the amazing work of recovery going on in his mighty, little body. He has continued to push himself to get up for OT and PT every day. He’s is such a trooper! He has also started to push his IV pole around by himself again, so that is a good sign his strength and energy are returning.
Unfortunately, while his counts were so low the CMV was able to take hold and rise. He is now on a treatment dose of the antiviral medicine and he received the CMV specific IVIG the other day. We are hopeful that with the addition of the medication and his counts rising we can get the CMV to an undetectable level. Please help us pray for this!
We have transitioned him to bolus feeds through the NG tube which act more like eating a meal versus the continuous feeds he was on. He has tolerated that well the last two days. We tried to encourage him to eat something and he said he felt up to it. He tried to eat a bit of ice cream tonight, but that hurt his mouth too much. He says he will try something else that is soft tomorrow.
We have our discharge planning meeting tomorrow afternoon, so we are hoping to get a better picture of future follow up plans. It is so exciting to be making plans for discharge
We continue to take one day at a time, praise God for His provision each day, and trust Him for the good future He has planned for Jedi and our family.
“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. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”
‭‭Jeremiah‬ ‭29:11-13‬
May we all have hearts that seek our Father every day, no matter our circumstances, so we can experience that hope He promises!
Our heartfelt thanks for all your continued prayers and encouragement. We thank God every day for sending you into our lives.
Blessings on your evening and love from Jedi and the rest of the Schallers!
 
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