Chase's Spirits were Lifted Today by Another Awesome Prayer Service after an Extremely Stessful Week
This past week was another roller-coaster ride for Chase - unfortunately, not the fun kind. After the recent neurological changes, we've been told by the Burzynski Clinic that we need to stop treatments for a while until he has a higher score on a physical that is required by their FDA protocol. Since their treatment is high in sodium, stopping this threw Chase's electrolytes terribly out of balance (sort of a "rebound effect"). His sodium level got so low by Wed morning (118) that we were told by his Neurologist it would've put a healthy person in ER and most likely into a coma. We had to react quickly to pull it up and we found a product to do just that - Himalayan salt that is reportedly high in other minerals and good for his body.
Well, it certainly worked, but along this pulling his sodium back up (this time to the high end of the normal range), his Potassium also skyrocketed to 7.2 - this is way beyond the "safe zone" and typically would require emergency hospitalization. Once again, we jumped on it and adjusted his nutrition quickly with frequent monitoring (4 tests over the following 24 hours) until this got back in line as well. All of these swings clearly took a toll on Chase's body and by the end of the week, although his electrolytes were balanced again, his hemoglobin dropped significantly (7.8), most likely because of a combination of all the blood draws and giving him limited nutrition while we were working on the e-lytes.
Finally, we started getting concerned that Chase's digestive track and his bowels were really sluggish, with the obvious related concerns that this could be an indication of his bodily systems shutting down. Fortunately, Chase did have a bowel movement last night which alleviated a lot of our concerns (at least for now), but he's definitely very depleted at the moment. We're adjusting all of his meals and supplements with the help of our nutritionist to create a "low residue diet" so that it will be a lot easier on his digestive track for the near term and hopefully he'll be back on track soon.
With all of this going on over the past few days, we've been extremely depleted ourselves with concerns about the underlying implications regarding Chase's status and outlook. However, he never ceases to amaze us - he's just such a fighter and every time we hit a speedbump, he seems to get over it and then stabilize again. At the moment, his vitals are all stable and he seems to be hanging in there once again. We're certain it has a lot to do with the awesome prayer service that was held this afternoon. I'm terribly sorry for not getting the word out on the blog in advance - this was a pretty spontaneous event that was completely planned and organized by Kay Ponicall, Kathleen Lesnau and several of their friends. I only heard about the idea yesterday and expected perhaps a few people to come by for prayers but it turned out to be the most beautiful service we could've imagined. Around 150 people showed up and completely surrounded our house united in prayer and song for a couple of hours to lift Chase up to God in an effort to invoke His miraculous healing power. We were so incredibly moved by this overwhelming support that it's hard to express our gratitude in words.
Chase has obviously touched the lives of many people and he is accepting his mission of calling us all to strengthen and deeping our faith. He's our little angel - regardless of the final outcome, I feel he has saved my life by renewing my faith and spiritual calling, as well as countless others. There is no doubt that God is hearing our prayers and if it is His will, Chase will be healed. Fortunately, there is no order of magnitude in miracles, because we clearly need a big one to get Chase back to divine health. We're holding on to our hope and faith that this will happen and that we are being rewarded for our perseverence.
Thanks again to everyone who participated in the prayer service today. We were deeply moved and incredibly lifted by this show of support. Our normally scheduled collective prayer time is once again Monday evening at 9 pm EST. We are continuing to pray for Chase's miracle recovery as well as the wisdom and guidance to know and accept God's will for us in this situation.
God Bless!
John & Carol Sammut
Chase & Barbara
Well, it certainly worked, but along this pulling his sodium back up (this time to the high end of the normal range), his Potassium also skyrocketed to 7.2 - this is way beyond the "safe zone" and typically would require emergency hospitalization. Once again, we jumped on it and adjusted his nutrition quickly with frequent monitoring (4 tests over the following 24 hours) until this got back in line as well. All of these swings clearly took a toll on Chase's body and by the end of the week, although his electrolytes were balanced again, his hemoglobin dropped significantly (7.8), most likely because of a combination of all the blood draws and giving him limited nutrition while we were working on the e-lytes.
Finally, we started getting concerned that Chase's digestive track and his bowels were really sluggish, with the obvious related concerns that this could be an indication of his bodily systems shutting down. Fortunately, Chase did have a bowel movement last night which alleviated a lot of our concerns (at least for now), but he's definitely very depleted at the moment. We're adjusting all of his meals and supplements with the help of our nutritionist to create a "low residue diet" so that it will be a lot easier on his digestive track for the near term and hopefully he'll be back on track soon.
With all of this going on over the past few days, we've been extremely depleted ourselves with concerns about the underlying implications regarding Chase's status and outlook. However, he never ceases to amaze us - he's just such a fighter and every time we hit a speedbump, he seems to get over it and then stabilize again. At the moment, his vitals are all stable and he seems to be hanging in there once again. We're certain it has a lot to do with the awesome prayer service that was held this afternoon. I'm terribly sorry for not getting the word out on the blog in advance - this was a pretty spontaneous event that was completely planned and organized by Kay Ponicall, Kathleen Lesnau and several of their friends. I only heard about the idea yesterday and expected perhaps a few people to come by for prayers but it turned out to be the most beautiful service we could've imagined. Around 150 people showed up and completely surrounded our house united in prayer and song for a couple of hours to lift Chase up to God in an effort to invoke His miraculous healing power. We were so incredibly moved by this overwhelming support that it's hard to express our gratitude in words.
Chase has obviously touched the lives of many people and he is accepting his mission of calling us all to strengthen and deeping our faith. He's our little angel - regardless of the final outcome, I feel he has saved my life by renewing my faith and spiritual calling, as well as countless others. There is no doubt that God is hearing our prayers and if it is His will, Chase will be healed. Fortunately, there is no order of magnitude in miracles, because we clearly need a big one to get Chase back to divine health. We're holding on to our hope and faith that this will happen and that we are being rewarded for our perseverence.
Thanks again to everyone who participated in the prayer service today. We were deeply moved and incredibly lifted by this show of support. Our normally scheduled collective prayer time is once again Monday evening at 9 pm EST. We are continuing to pray for Chase's miracle recovery as well as the wisdom and guidance to know and accept God's will for us in this situation.
God Bless!
John & Carol Sammut
Chase & Barbara
posted by John & Carol Sammut at 8:45 PM
2 Comments:
Hi John and Carol,we check Chase's site every day and our thoughts are always with you,keep your chins up.Lots of love Clive and Rita.
HiJohn,Carol,Barbara&Chase,Many of your Mom's(Barbara) schoolmates are praying for your family.I contacted some of them,told them about Chase.You are all in our prayers.Carol if you need me let me know. With all our love
Barbara Cook
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