Prayers and more prayers.
Please pray for this little boy!
- Thread starter holamelitta
- Start date
- #42
Thread Owner
Posted this morning:
Westin received his second IVIG treatment Wednesday. We are still hoping to see good results from it but because his movement disorder (meaning, his body constantly moves involuntarily) has escalated to a point of great concern, any voluntary gains of function have been masked. I wish I could give good news on Westin but unfortunately his body is struggling yet again. His movement disorder is greatly affecting every aspect of his well being. It has become so aggressive over the last few days that he's unable to sleep, tolerate feeds, or follow through with any type of coordinated function. After 24 hours of restlessness, his body finally gave in around 3 a.m. this morning and he fell asleep. The medical team at this hospital has done what they can to help Westin but it's time to move on. We will be transferring today to Riley's in Indianapolis. As soon as we get settled, I will update everyone on what the next step is with Westin's treatment/recovery. Thank you for your continued prayers. Although Westin has yet to take that big step forward, I remain faithful that he will. My prayer today will be the same as it's been for several days now...that his body will relax and that he'll be able to rest appropriately. I also pray for safe travel and that a new team of doctors will be able to help him make that step forward.
Westin received his second IVIG treatment Wednesday. We are still hoping to see good results from it but because his movement disorder (meaning, his body constantly moves involuntarily) has escalated to a point of great concern, any voluntary gains of function have been masked. I wish I could give good news on Westin but unfortunately his body is struggling yet again. His movement disorder is greatly affecting every aspect of his well being. It has become so aggressive over the last few days that he's unable to sleep, tolerate feeds, or follow through with any type of coordinated function. After 24 hours of restlessness, his body finally gave in around 3 a.m. this morning and he fell asleep. The medical team at this hospital has done what they can to help Westin but it's time to move on. We will be transferring today to Riley's in Indianapolis. As soon as we get settled, I will update everyone on what the next step is with Westin's treatment/recovery. Thank you for your continued prayers. Although Westin has yet to take that big step forward, I remain faithful that he will. My prayer today will be the same as it's been for several days now...that his body will relax and that he'll be able to rest appropriately. I also pray for safe travel and that a new team of doctors will be able to help him make that step forward.
^ This was posted in cookiemoms post ( hockey players quote ) "I don't believe in miracles. I rely on them." when i read these i try to keep everyone in prayers and pray for a miracle they happen every day ! not sure of Gods plan , but he's there !
This is really a sad, sad situation. I can't begin to imagine the devastation his parents feel about Westin's illness and the subsequent brain injury. I wouldn't ever want to be in their shoes : (
MrsRed, I agree with you, with such sadness and tragedy, It does make you wonder why??? I have a strong faith, but I do not believe that this is the way Westin's life was supposed to be. I believe that things just happen, and people find a way to cope and survive through it, while leaning on their faith to help them through the rough times. I believe that God does work miracles, but that there is far more suffering and sadness than joy from a miraculous recovery. Most children who live through this kind of brain injury will not have a miracle. Some will -- I wonder though, why some receive the miraculous recovery and others do not???
Life can be so difficult, and that's when the power of prayer can be there to comfort and guide people in their lives.
MrsRed, I agree with you, with such sadness and tragedy, It does make you wonder why??? I have a strong faith, but I do not believe that this is the way Westin's life was supposed to be. I believe that things just happen, and people find a way to cope and survive through it, while leaning on their faith to help them through the rough times. I believe that God does work miracles, but that there is far more suffering and sadness than joy from a miraculous recovery. Most children who live through this kind of brain injury will not have a miracle. Some will -- I wonder though, why some receive the miraculous recovery and others do not???
Life can be so difficult, and that's when the power of prayer can be there to comfort and guide people in their lives.
- #48
Thread Owner
This is a situation where I think holding out hope for a miracle would be the only way parents could get through seeing their child like that. If it were me and I couldn't hope for a miracle, I think that might be more than I could bear, to think about my child having such severe brain damage for the rest of their life.
- #49
Thread Owner
Posted yesterday evening:
We've decided, along with the neurology team at Riley's, to treat Westin with a 5-day course of corticosteroids. If in fact he is suffering from an acute autoimmune disorder, meaning his own immune system could be attacking his brain, the hope is that a course of prednisolone will help suppress it. The medical literature on autoimmune therapy after HSV 1 encephalitis is few and far between. No studies have been done in this area, just single-patient case reports. So essentially, using IVIG therapy and corticosteroids in Westin's condition is somewhat like navigating unchartered waters. Not exactly what you want to hear as parents but Shaun and I both agree that something has to be done. Westin is suffering, it's getting worse, and he needs help. With the support of the physicians, we're willing to take a risk in hopes of sending him in the right direction. The risk is that an active viral infection could return. Once you acquire HSV 1, you have it forever. For most, it lays dormant because a healthy immune system will suppress it. After taking corticosteroids, an immune system is usually weak. See the predicament? We have been assured that the risk of reinfection is small because 1) the dose of prednisolone is low and 2) Westin was started on an oral antiviral to help suppress any potential HSV 1 activity. Just like with the IVIG, we pray for good results. Better yet, amazing results. We pray it neutralizes his brain and eliminates the movement disorder. We especially pray for protection against reinfection. So many requests, so many hopes, and so many expectations. Thank you Lord for allowing me to ask all of this from You in great faith that Westin will be healed.
We've decided, along with the neurology team at Riley's, to treat Westin with a 5-day course of corticosteroids. If in fact he is suffering from an acute autoimmune disorder, meaning his own immune system could be attacking his brain, the hope is that a course of prednisolone will help suppress it. The medical literature on autoimmune therapy after HSV 1 encephalitis is few and far between. No studies have been done in this area, just single-patient case reports. So essentially, using IVIG therapy and corticosteroids in Westin's condition is somewhat like navigating unchartered waters. Not exactly what you want to hear as parents but Shaun and I both agree that something has to be done. Westin is suffering, it's getting worse, and he needs help. With the support of the physicians, we're willing to take a risk in hopes of sending him in the right direction. The risk is that an active viral infection could return. Once you acquire HSV 1, you have it forever. For most, it lays dormant because a healthy immune system will suppress it. After taking corticosteroids, an immune system is usually weak. See the predicament? We have been assured that the risk of reinfection is small because 1) the dose of prednisolone is low and 2) Westin was started on an oral antiviral to help suppress any potential HSV 1 activity. Just like with the IVIG, we pray for good results. Better yet, amazing results. We pray it neutralizes his brain and eliminates the movement disorder. We especially pray for protection against reinfection. So many requests, so many hopes, and so many expectations. Thank you Lord for allowing me to ask all of this from You in great faith that Westin will be healed.
- #50
Thread Owner
Posted last night:
Change of plans...Westin is now receiving a 12-day course of a different and stronger steroid, decadron, instead of the previous 5-day steroid, prednisolone. He will also receive another round of IVIG starting tonight. The way I see it, they're throwing a Hail Mary and we're praying for a touchdown.
And as if his body needs one more thing to worry about, he now has pneumonia. Shaun and I wonder how much more his body can handle. If Westin could stand, hold his head up and raise his hands, I know he would cry out to God and say, "Please, I need Your help."
Change of plans...Westin is now receiving a 12-day course of a different and stronger steroid, decadron, instead of the previous 5-day steroid, prednisolone. He will also receive another round of IVIG starting tonight. The way I see it, they're throwing a Hail Mary and we're praying for a touchdown.
And as if his body needs one more thing to worry about, he now has pneumonia. Shaun and I wonder how much more his body can handle. If Westin could stand, hold his head up and raise his hands, I know he would cry out to God and say, "Please, I need Your help."
So very sad. He and his family are in my prayers.
- #53
Thread Owner
Posted earlier today:
I woke up this morning and was humbled yet again by your posts of prayers and encouraging words. Please know your support for my son brings me to tears. I am so grateful. The bracelets are doing their job...bringing awareness to God and gathering believers in prayer for Westin. Thank you Aunt Julie for such a wonderful idea.
Westin has had more wakeful periods over the last few days. He's watched t.v., people walk outside our door and has even looked at us from time to time when approached in bed. As he is weaned from two of his three movement disorder medications, we hope to see even more alertness, as they have had a sedative-type effect on him for several days now.
He's being treated aggressively for his pneumonia so hopefully that will clear up sooner than later. Unfortunately, his tummy is now having issues. He's not wanting to keep his formula down or even Pedialyte. He won't be fed today or tonight to give his digestive system a break. It could be from an intestinal virus, reflux, or that his tummy is just irritated from the movement disorder and all of the medications he's on. Watching him struggle with his nutrition is a scary thing for Shaun and I. We are praying strongly that this is a temporary issue and that it will be resolved with time and rest or very minor intervention.
Tonight will be 4 out of 5 IVIG treatments he will get this week and day 4 out of 12 for the stronger steroid treatment. We were told this morning by the neurology team that if he is indeed suffering from an acute autoimmune disorder, it could easily take six-months to correct itself, even with monthly IVIG treatments. The road ahead looks very, very long but like I once read, "You get the chicken by hatching the egg." We knew Westin's road to recovery would be hard on all us, especially him, and with this latest setback, it seems as if the road has done nothing but go downhill. But we're not losing hope. A neurology resident told us this morning to "keep the faith". That was the first time we've ever heard that from a medical standpoint. 50 doctors later and one finally tells us to stay hopeful. Bless his heart. Thank you Lord for a ray of light in such a dark circumstance.
I woke up this morning and was humbled yet again by your posts of prayers and encouraging words. Please know your support for my son brings me to tears. I am so grateful. The bracelets are doing their job...bringing awareness to God and gathering believers in prayer for Westin. Thank you Aunt Julie for such a wonderful idea.
Westin has had more wakeful periods over the last few days. He's watched t.v., people walk outside our door and has even looked at us from time to time when approached in bed. As he is weaned from two of his three movement disorder medications, we hope to see even more alertness, as they have had a sedative-type effect on him for several days now.
He's being treated aggressively for his pneumonia so hopefully that will clear up sooner than later. Unfortunately, his tummy is now having issues. He's not wanting to keep his formula down or even Pedialyte. He won't be fed today or tonight to give his digestive system a break. It could be from an intestinal virus, reflux, or that his tummy is just irritated from the movement disorder and all of the medications he's on. Watching him struggle with his nutrition is a scary thing for Shaun and I. We are praying strongly that this is a temporary issue and that it will be resolved with time and rest or very minor intervention.
Tonight will be 4 out of 5 IVIG treatments he will get this week and day 4 out of 12 for the stronger steroid treatment. We were told this morning by the neurology team that if he is indeed suffering from an acute autoimmune disorder, it could easily take six-months to correct itself, even with monthly IVIG treatments. The road ahead looks very, very long but like I once read, "You get the chicken by hatching the egg." We knew Westin's road to recovery would be hard on all us, especially him, and with this latest setback, it seems as if the road has done nothing but go downhill. But we're not losing hope. A neurology resident told us this morning to "keep the faith". That was the first time we've ever heard that from a medical standpoint. 50 doctors later and one finally tells us to stay hopeful. Bless his heart. Thank you Lord for a ray of light in such a dark circumstance.
Thinking of Westin and praying.
- #58
Thread Owner
Posted yesterday:
What I'm thanking our good Lord for today...
1) More alertness. Westin is looking at us, focusing on us, and able to track us slowly.
2) More restful periods. The last two days have consisted of afternoon naps and longer periods of consolidated sleep at night.
3) Formula being tolerated. He's not at goal yet but should be by tonight!
4) Proof that he has retained at least some of his memory. When asked, Westin will use his eyes to tell us which toy in front of him is the combine, tractor, truck, etc...
4) Proof that he can hear, by following the above-mentioned commands.
5) More body movement, although jerky from the movement disorder and highly uncoordinated, it's movement that has the chance to become coordinated.
What I'm thanking our good Lord for today...
1) More alertness. Westin is looking at us, focusing on us, and able to track us slowly.
2) More restful periods. The last two days have consisted of afternoon naps and longer periods of consolidated sleep at night.
3) Formula being tolerated. He's not at goal yet but should be by tonight!
4) Proof that he has retained at least some of his memory. When asked, Westin will use his eyes to tell us which toy in front of him is the combine, tractor, truck, etc...
4) Proof that he can hear, by following the above-mentioned commands.
5) More body movement, although jerky from the movement disorder and highly uncoordinated, it's movement that has the chance to become coordinated.
- #60
Thread Owner
This is the last post, on Sat.:
Westin is now in a different building at Riley going through intense rehab. His body is worked 4 to 5 hours a day Monday through Friday by professionals and then even more by me and others who help. We are praying that Westin shows enough improvement each week so that he can continue to be a candidate for inpatient therapy.
We are in the process of discussing a more aggressive approach to Westin's treatment plan in hopes of seeing faster improvement. IVIG will still be given but will most likely be administered every two weeks instead of every four. Alongside IVIG will be more rounds of high dose steroids. The doctors will discuss and confirm this early next week and it will hopefully get started just as soon.
I pray to the good Lord for big rehab gains, wisdom for the doctors when making their decisions, relaxation for Westin's body movements, and for a decrease in his agitation level. I thank Him for a reduction in reflux, an improved sleeping pattern, and several half smiles he gave his grandma and grandpa yesterday.
Westin is now in a different building at Riley going through intense rehab. His body is worked 4 to 5 hours a day Monday through Friday by professionals and then even more by me and others who help. We are praying that Westin shows enough improvement each week so that he can continue to be a candidate for inpatient therapy.
We are in the process of discussing a more aggressive approach to Westin's treatment plan in hopes of seeing faster improvement. IVIG will still be given but will most likely be administered every two weeks instead of every four. Alongside IVIG will be more rounds of high dose steroids. The doctors will discuss and confirm this early next week and it will hopefully get started just as soon.
I pray to the good Lord for big rehab gains, wisdom for the doctors when making their decisions, relaxation for Westin's body movements, and for a decrease in his agitation level. I thank Him for a reduction in reflux, an improved sleeping pattern, and several half smiles he gave his grandma and grandpa yesterday.
