Prayers for Nephew
- Thread starter MGMIAM
- Start date
muleman69
USMC -1st marine Div. RVN
+2 have a great day
I thought I would take the opportunity today to update everyone while Jedi is occupied in the shower. He has to shower every day as part of his infection prevention protocol, and he has really come to enjoy it. He listens to music and plays with little metal cars or Star Wars ships while he enjoys the warm water.
Physically his numbers have continued to drop. His platelets today were down to 15k and his white count is down to 0.2. He has been having more petechiae (red and purple spots on the skin) as a result of his low platelet level. They have increased over the last day, so it is likely he will need a transfusion tomorrow. Jedi’s body is always surprising us and the doctors, so we’ll see
Jedi’s mouth sores have gotten slightly worse, so eating has been more difficult. We are trying to keep him on real foods as long as possible, so currently we are working on pain control and finding calorie dense soft foods he wants to eat. Obviously we have no experience with the BMT process, but from what the doctors and nurses tell us Jedi is doing really well. All praise to the Lord for sustaining him through this process! As we go through each day we keep praying that God guides those donor cells to set up shop in Jedi’s body. We will wait on His timing for this process to happen, and praise Him every day for the blessing of this time with Jedi! “I wait for the Lord, my whole being waits, and in his word I put my hope.”
Psalms 130:5
Jedi continues to enjoy all the cards, pictures, prayers and encouragement sent his way. He was gifted a package containing a bingo challenge game by a sweet family from our church. Jedi has to find people here who fit the description in the bingo square. When he completes a bingo he gets to open a wrapped prize. Jedi has been having so much fun getting to know all the staff here by asking them questions.
Thank you all for continuing to lift our sweet boy up in prayer. Sending love to you all!
Physically his numbers have continued to drop. His platelets today were down to 15k and his white count is down to 0.2. He has been having more petechiae (red and purple spots on the skin) as a result of his low platelet level. They have increased over the last day, so it is likely he will need a transfusion tomorrow. Jedi’s body is always surprising us and the doctors, so we’ll see
Jedi’s mouth sores have gotten slightly worse, so eating has been more difficult. We are trying to keep him on real foods as long as possible, so currently we are working on pain control and finding calorie dense soft foods he wants to eat. Obviously we have no experience with the BMT process, but from what the doctors and nurses tell us Jedi is doing really well. All praise to the Lord for sustaining him through this process! As we go through each day we keep praying that God guides those donor cells to set up shop in Jedi’s body. We will wait on His timing for this process to happen, and praise Him every day for the blessing of this time with Jedi! “I wait for the Lord, my whole being waits, and in his word I put my hope.”
Psalms 130:5
Jedi continues to enjoy all the cards, pictures, prayers and encouragement sent his way. He was gifted a package containing a bingo challenge game by a sweet family from our church. Jedi has to find people here who fit the description in the bingo square. When he completes a bingo he gets to open a wrapped prize. Jedi has been having so much fun getting to know all the staff here by asking them questions.
Thank you all for continuing to lift our sweet boy up in prayer. Sending love to you all!
Hi all, I don't have the angels hand writing like Dianna and Patrick (the parents)
They know how much you all have been following and praying for Jedi, Patrick and Dianna and Jedi's brothers, all involved
Jedi is fighting hard. As expected many changes during transplant.
Jedi has a 103 fever, coughing, throwing up, low oxygen, Is on more antibiotics and doctors trying to help as they know best. I guess he is in some pain also and they are addressing that also.
I expect Patrick and Diannas focus will be by bedside and with brothers, family etc. So this is a quick update to you all. Im hoping soon I can post a super positive note.
Once again, to all, everyone !!!! following, thanks so much for your prayers, cards and all to Jedi and his parents and family
They know how much you all have been following and praying for Jedi, Patrick and Dianna and Jedi's brothers, all involved
Jedi is fighting hard. As expected many changes during transplant.
Jedi has a 103 fever, coughing, throwing up, low oxygen, Is on more antibiotics and doctors trying to help as they know best. I guess he is in some pain also and they are addressing that also.
I expect Patrick and Diannas focus will be by bedside and with brothers, family etc. So this is a quick update to you all. Im hoping soon I can post a super positive note.
Once again, to all, everyone !!!! following, thanks so much for your prayers, cards and all to Jedi and his parents and family
It has been brought to my attention I mis spelled Onalaska on page 1, thanks for letting me know. I have since corrected
Jedidiah Schaller
N5980 County Road #OT
Onalaska, WI 54650
also
www.uwhealth.org
choose
American Family Childrens Hospital to send card
Thanks all
Jedidiah Schaller
N5980 County Road #OT
Onalaska, WI 54650
also
Organic-Greeting Cards - Formstack
choose
American Family Childrens Hospital to send card
Thanks all
Last edited:
The night I wrote Jedi’s last update he turned a corner into unpleasant territory. In the middle of the night Jedi started to cough and have trouble breathing. His oxygen saturations dropped and then he started vomiting. He was also complaining of his throat hurting a lot. His platelets dropped to 10K, so a transfusion was ordered. Ten minutes after they started his transfusion he spiked a fever of 103. The transfusion was stopped and they drew labs, blood cultures and started antibiotics. He also got a chest X-ray which looked fine. It was a rough night with very little rest.
Jedi spent most of the day with a fever and feeling very crummy. The labs came back okay, so Jedi got his platelet transfusion. That went in without complication. We did struggle throughout the day and evening to get his pain under control. Between that and the fevers he spent most of the day in bed trying to rest. By last evening we decided a PCA pump would be the best route as Jedi could have some control over his pain relief. He was able to sleep much better last night and was even able to take some food by mouth today. He is also back on scheduled nausea medicine to keep that under control. As you can expect he is very tired but still able to get up to the bathroom, shower, and do some physical therapy. We are so thankful for that.
At rounds this morning it was decided that he has not been able to get enough calories in on his own, so he was started this evening on a very low rate of NG feeds. We see how each day goes and tweak treatments as needed to make him comfortable and to give him what he needs to heal. As soon as he is able to eat more calories we will stop the NG feeds.
We also found out this morning that his CMV level has risen slightly. The doctors say this can happen when the immune system is wiped out. This evening Jedi received IVIG to help his body fight against the virus. We will check another level in a couple of days to see if more treatment is necessary.
Overall Jedi is in good spirits. He is coping by resting/sleeping when he needs to and distracting himself with games and movies. We will continue to pray continually for his healing and “Be joyful in hope, patient in affliction, faithful in prayer.”
Romans 12:12
Thank you all for continuing on this journey with us and keeping our sweet Jedi close in your thoughts and your prayers!
Jedi spent most of the day with a fever and feeling very crummy. The labs came back okay, so Jedi got his platelet transfusion. That went in without complication. We did struggle throughout the day and evening to get his pain under control. Between that and the fevers he spent most of the day in bed trying to rest. By last evening we decided a PCA pump would be the best route as Jedi could have some control over his pain relief. He was able to sleep much better last night and was even able to take some food by mouth today. He is also back on scheduled nausea medicine to keep that under control. As you can expect he is very tired but still able to get up to the bathroom, shower, and do some physical therapy. We are so thankful for that.
At rounds this morning it was decided that he has not been able to get enough calories in on his own, so he was started this evening on a very low rate of NG feeds. We see how each day goes and tweak treatments as needed to make him comfortable and to give him what he needs to heal. As soon as he is able to eat more calories we will stop the NG feeds.
We also found out this morning that his CMV level has risen slightly. The doctors say this can happen when the immune system is wiped out. This evening Jedi received IVIG to help his body fight against the virus. We will check another level in a couple of days to see if more treatment is necessary.
Overall Jedi is in good spirits. He is coping by resting/sleeping when he needs to and distracting himself with games and movies. We will continue to pray continually for his healing and “Be joyful in hope, patient in affliction, faithful in prayer.”
Romans 12:12
Thank you all for continuing on this journey with us and keeping our sweet Jedi close in your thoughts and your prayers!
Bill Norris
Back in the Day
Hang it there Jedi. A much better day will dawn soon and you will be well again is my prayer. God Bless You and Family.
I don’t have much to add tonight. Jedi is continuing to be awesome and have pretty severe mouth pain at the same time.
We are just waiting on his counts to come up showing that his BMT has taken which they think could be any day. In fact his white blood cells came up slightly this morning but we’re told that it needs to come up a lot more and consistently for a few days.
Still, today was the first day that “discharge” was talked about at all which was neat. We learned it’s a week long process to get discharged and that we would be meeting many people during that week.
The days have definitely started to drag along in our tiny world. (Hence the pictures attached showing our small amusements!) At least Dianna and I have been able to get outside for a 20ish minute walk almost everyday. The weather has, thankfully, stayed pleasant for Wisconsin in December. Grateful for even the small blessings!
All the Staff here are still in awe of the many, many, cards Jedi continues to receive. We have them up in the walls, covering them.
We, too, are in awe at the numerous, unbelievable, people that have contributed to support Jedi, and his family, through this journey.
Thank you once again and keep them coming as they absolutely cheer us all up and we look forward to the Mail each day.
Blessings to you and your families.
“Wait for the Lord; be strong and take heart and wait for the Lord.”
Psalms 27:14 NIV
We are just waiting on his counts to come up showing that his BMT has taken which they think could be any day. In fact his white blood cells came up slightly this morning but we’re told that it needs to come up a lot more and consistently for a few days.
Still, today was the first day that “discharge” was talked about at all which was neat. We learned it’s a week long process to get discharged and that we would be meeting many people during that week.
The days have definitely started to drag along in our tiny world. (Hence the pictures attached showing our small amusements!) At least Dianna and I have been able to get outside for a 20ish minute walk almost everyday. The weather has, thankfully, stayed pleasant for Wisconsin in December. Grateful for even the small blessings!
All the Staff here are still in awe of the many, many, cards Jedi continues to receive. We have them up in the walls, covering them.
We, too, are in awe at the numerous, unbelievable, people that have contributed to support Jedi, and his family, through this journey.
Thank you once again and keep them coming as they absolutely cheer us all up and we look forward to the Mail each day.
Blessings to you and your families.
“Wait for the Lord; be strong and take heart and wait for the Lord.”
Psalms 27:14 NIV
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
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
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