We would like to thank everyone who was praying for Jack on Thursday. He came through the procedure well. He did take a few to come out of the anaesthesia, but that was more because they let him come out of it slowly. They also used deeper medications then normal due to the fact that Jack must have a breathing tube put in while under anaesthesia. This is due to the asthma and reflex.
They also put in a Ph probe that he had to keep in for 24 hours and have removed today. The doctor spoke with me after the scope and biopsy procedure. The doctor said everything looked good. No abnormalities, ulcers, ect.. and we would see what the ph probe and biopsy indicated and go from there. If everything checks out OK it would all be disease related and he would be referred out to the swallow team and see how they could help.
We went today and had the probe removed. They downloaded and read all the information. The doctor said everything looked normal. Even the times during the night Jack complained of a stomach ache appeared normal. He did dry heave during the probe time and that period appeared normal. The doctor said we should have the results from the biopsy by Tuesday or Wednesday and go from there.
I received a call at 4:30 from the doctors nurse. The biopsy results were in. They did see something. Jack stomach tissue (even though the doctor didn't see it during the scope) is irritated. He has major gastritis and pylori virus. They said he has to go on antibiotics and his other stomach meds increased for two weeks. Then back to his regular dose of stomach meds and they would see him in 8 weeks. They said people can get this virus and they don't know why. They said that usually with the antibiotics you can get rid of it and some people are fine. It can be recurring in others. The nurse also said if he is not improving after the treatment then the doctor would pursue more tests and see if anything else is going on, but he definitely is irritated and has this virus and gastritis. I asked if this could in any way have to due with the stomach muscle being weak and the disease, but she couldn't answer that and the doctor will not be in till Wednesday due to the holiday. She left a note for him to call me and I will get some more answers then.
We are hoping he responds to the treatment and it is not recurring. We just want him to feel better. It is hard to have him waking up 2 or 3 times a night with stomach or leg pain. I hate to see him in pain. It is also hard to see him dry heaving or throwing up. If it is not one area it is another. I just tell myself it could always be worse and he deals very well with it. I guess he is use to it. I just feel bad. As his parents we want to solve his problems and cure his pain. It hurts us that we cant. It hurts us when we cant answer questions about his future. We just have to keep are faith and trust in God. He has a plain for us all. We have to trust in him and not lean on are own understanding. We have to not question, but trust. How hard that can be at times when nothing makes sense. If only we could see the picture through Gods eyes and understand the whole plan he has for each of us.
Jack inspires us. He makes us realize how ridicules we can be. How precious life is. He makes me remember what is important. Then we get all raped up in everyday life again. What pulls us away from are priorities and what we know is most important? That is a question I want to answer. God is showing us so much and talking to us through are life lessons everyday. Are we listening? Are we truly understanding this great big picture called life? All I know is jack is going to have a greater understanding earlier. I thank God for Jack's spirit and happiness around me.
Friday, August 31, 2007
Monday, August 13, 2007
UPDATE
Last week after I updated the blog Jack went to the pulmonary Doctor. He had caught a cold the night we came back from Cleveland. This cold aggravated the asthma and the pulmonary doctor put Jack on a inhaler 2 times a day. He also gave us the albuterol if needed in the puffer form for preschool. Jack goes back in two months for a respiratory check.
Today he was scheduled for a MRI under anaesthesia for the left side hip and knees. We went and went through the whole registration process. We saw the nurse, got prepped and saw the anesthesiologist. We were there 2 hours and they were just about to take him in when the head anesthesiologist came to talk with us. He said he was not comfortable at all putting Jack under anaesthesia. He said he was afraid of complications with him aspirating. This was due to this cold and the asthma, and reflux. He said because his reflux is so bad and the medication is not working that the snot or stomach fluids can come up when a kid with reflux is under. This could cause him to aspirate leading to many complications. In a kid with asthma the chance is higher of complications if the reflux acts up. If Jack didn't have a cold and asthma was not acting up he would have done it. If he was to go under and reflux anything they should be able to handle it (most likely) if his asthma was not acting up and he didn't have a cold. The combination cold and asthma flare up with the reflux made him very uncomfortable. Needless to say we rescheduled the MRI. The anesthesiologist wants Jack cold free for two to three weeks before the MRI procedure.
Jack will be scoped on the 30th if all cold symptoms are gone and the asthma is more under control. That call will be up to a different team and anaesthesiologist.
Jack will not have the MRI until the 6th of September now. He for the MRI is under at least an hour to two hours and only 45 minutes tops for the scope with biopsy.The time under Anesthesia comes into play due to Jacks disease.
Anyway, Better to be safe then sorry. This was just for a test not a surgery and he and us didn't want to take any chances.
Between the new respiratory medication and the new medication the doctor from Cleveland has put Jack on the co pays are very high. I also hate Jack being on so many medications. He is up to ten prescriptions a day some three times a day. Regardless that some are supplements it just bothers us. All the doctors are aware and act as though all the prescriptions are OK, but it is hard for us.
All we ask is that you keep Jack in your prayers. Pray he gets over this cold and his asthma calms down. He has been having his over heating issues also. We have been trying to keep these episodes down. Keep the scope and MRI appointments in your prayers and pray he is well enough to have them done. We also ask that you pray they go well and we get answers.
Today he was scheduled for a MRI under anaesthesia for the left side hip and knees. We went and went through the whole registration process. We saw the nurse, got prepped and saw the anesthesiologist. We were there 2 hours and they were just about to take him in when the head anesthesiologist came to talk with us. He said he was not comfortable at all putting Jack under anaesthesia. He said he was afraid of complications with him aspirating. This was due to this cold and the asthma, and reflux. He said because his reflux is so bad and the medication is not working that the snot or stomach fluids can come up when a kid with reflux is under. This could cause him to aspirate leading to many complications. In a kid with asthma the chance is higher of complications if the reflux acts up. If Jack didn't have a cold and asthma was not acting up he would have done it. If he was to go under and reflux anything they should be able to handle it (most likely) if his asthma was not acting up and he didn't have a cold. The combination cold and asthma flare up with the reflux made him very uncomfortable. Needless to say we rescheduled the MRI. The anesthesiologist wants Jack cold free for two to three weeks before the MRI procedure.
Jack will be scoped on the 30th if all cold symptoms are gone and the asthma is more under control. That call will be up to a different team and anaesthesiologist.
Jack will not have the MRI until the 6th of September now. He for the MRI is under at least an hour to two hours and only 45 minutes tops for the scope with biopsy.The time under Anesthesia comes into play due to Jacks disease.
Anyway, Better to be safe then sorry. This was just for a test not a surgery and he and us didn't want to take any chances.
Between the new respiratory medication and the new medication the doctor from Cleveland has put Jack on the co pays are very high. I also hate Jack being on so many medications. He is up to ten prescriptions a day some three times a day. Regardless that some are supplements it just bothers us. All the doctors are aware and act as though all the prescriptions are OK, but it is hard for us.
All we ask is that you keep Jack in your prayers. Pray he gets over this cold and his asthma calms down. He has been having his over heating issues also. We have been trying to keep these episodes down. Keep the scope and MRI appointments in your prayers and pray he is well enough to have them done. We also ask that you pray they go well and we get answers.
Monday, August 6, 2007
Home from Cleveland
First I want to thank everyone who was praying for us while we were gone. The trip it self went well. We were able to take the boys to the Cleveland Zoo and that was an amazing zoo. We also took them to the science center and that was very enjoyable. Jack had to stay in his stroller a lot and he didn't like that. He did over heat a bit on Sunday and of course had some limping. He was actually the most unsteady and having to be carried a lot on Thursday. Other wise it was nice for us all in that respect.
As for Jacks appointment we have mixed feelings. The nurse did the typical vitals, and the doctor talked with us and used his computer while going over a lot of what has been going on. He made some recommendations and tried to explain things better since the confirmed diagnosis. As for the periods of not walking at all, he said (as he did on the phone) that it is probably nerve related and he has seen this in children similar to Jack. It could also be just muscle related and that his muscles are so weak they latterly give out. Either way he is putting him on medication. There are side effects, but he has used it many times and feels it will be safe. As far as the hip, and low tone issues, and falling he agrees with the Orthopedic surgeon. He said the MRI is the best way to go. As far as the PT part and rehabilitation doctor he said try whatever and see if anything works. He said bracing at night can help with the cramping and muscle pain. Regarding the stomach issues he feels the scope is the best step. He also said to try giving him peanut butter no jelly, before bed. This he said if they find nothing else actually wrong might help. He said if nothing else besides reflux is going on then it has to do with his metabolism due to the disease and the peanut butter might help. He (so did the doctor in Syracuse) said that cornstarch might also help. So we will try these suggestions. Regarding the over heating he suggested a cooling vest. Regarding his eyes he thinks he should go back to the eye doctor. He changed or should I say increased some medication and then added the other. He said regarding the periods of not walking at all if we see no improvement in three months to call him. Other wise come back in 6 months . I need to make sure he gets all the reports of what is going on. He didn't have any even though I have requested he get them. I am starting to request them my self and carry them to appointments. He will call regarding the gene testing they are doing on the muscle. That from April is still not done. We also talked with him regarding genetic counseling and worse case scenarios for our family.
He tried to keep us positive. Some in Syracuse have acted or implied Jack is going to be an orthopedic mess as he gets older. This he said is not necessarily true. Doctors and therapists, the war wages on!
He also said Jack (which I have said before) is considered a milder case because cognitively and developmentally he has not been effected at this time. That is good and he probably in those areas be OK. Muscles and nerves are more his area and yes pretty significant in his case,yet he still is considered a milder case. Fatigue and endurance issues will always be something he deals with.There is no prognosis and each case is different. He tried to be positive and tell us of a few kids like Jack who are older and doing pretty well. One that even plays football. He doesn't have the orthopedic problems like Jack and sounds even milder of a case, but he said Jack as he gets older may get stronger. This child of course cant play like regular kids. He plays 1/4 of a quarter and then skips a quarter before coming in to play. He practises different, and a lot of adapting has been made for him but he plays.
He was trying to help us look at the better then only the worse. It is hard because of this down turn. He also said the down turn could be lasting longer or worse due to the surgery.
We know it could be worse, we just hope and pray it doesn't get worse. Hopefully some of this months testing will help us to help Jack be in less pain. I also hope this new medication helps. We know after talking to him, life will not be like it is for other kids. We already new that, but he brought it home for us. This effects his energy and he will have to make adjustments. He will have to learn to deal with the fatigue and things to do.We just hope orthopedicly he gets better and his tone increases . The doctor said he will be more clumsy and we hope his instability will get better. What is hard as positive as we or he tries to be it doesn't change that there is no cure, no prognosis and know one knows. We have to take each day at a time and deal with each issues if and when it arises. When Jack asks me like he has, "can I play baseball like Noah", what do I say? I just don't know, it doesn't look good. If he does it will not be like everyone else. I have to remember Jack is not like everyone else and deal with that. Jack doesn't understand much, but in the next few years will start to more and more. I pray he deals with it OK. He gets frustrated now and has a hard time. Only God knows. I just want to take the pain away and make his life as normal as positive.
They are making strides with DNA and in the future I pray there is more we can do for Jack. Especially if he gets worse or has other areas effected.
As for Jacks appointment we have mixed feelings. The nurse did the typical vitals, and the doctor talked with us and used his computer while going over a lot of what has been going on. He made some recommendations and tried to explain things better since the confirmed diagnosis. As for the periods of not walking at all, he said (as he did on the phone) that it is probably nerve related and he has seen this in children similar to Jack. It could also be just muscle related and that his muscles are so weak they latterly give out. Either way he is putting him on medication. There are side effects, but he has used it many times and feels it will be safe. As far as the hip, and low tone issues, and falling he agrees with the Orthopedic surgeon. He said the MRI is the best way to go. As far as the PT part and rehabilitation doctor he said try whatever and see if anything works. He said bracing at night can help with the cramping and muscle pain. Regarding the stomach issues he feels the scope is the best step. He also said to try giving him peanut butter no jelly, before bed. This he said if they find nothing else actually wrong might help. He said if nothing else besides reflux is going on then it has to do with his metabolism due to the disease and the peanut butter might help. He (so did the doctor in Syracuse) said that cornstarch might also help. So we will try these suggestions. Regarding the over heating he suggested a cooling vest. Regarding his eyes he thinks he should go back to the eye doctor. He changed or should I say increased some medication and then added the other. He said regarding the periods of not walking at all if we see no improvement in three months to call him. Other wise come back in 6 months . I need to make sure he gets all the reports of what is going on. He didn't have any even though I have requested he get them. I am starting to request them my self and carry them to appointments. He will call regarding the gene testing they are doing on the muscle. That from April is still not done. We also talked with him regarding genetic counseling and worse case scenarios for our family.
He tried to keep us positive. Some in Syracuse have acted or implied Jack is going to be an orthopedic mess as he gets older. This he said is not necessarily true. Doctors and therapists, the war wages on!
He also said Jack (which I have said before) is considered a milder case because cognitively and developmentally he has not been effected at this time. That is good and he probably in those areas be OK. Muscles and nerves are more his area and yes pretty significant in his case,yet he still is considered a milder case. Fatigue and endurance issues will always be something he deals with.There is no prognosis and each case is different. He tried to be positive and tell us of a few kids like Jack who are older and doing pretty well. One that even plays football. He doesn't have the orthopedic problems like Jack and sounds even milder of a case, but he said Jack as he gets older may get stronger. This child of course cant play like regular kids. He plays 1/4 of a quarter and then skips a quarter before coming in to play. He practises different, and a lot of adapting has been made for him but he plays.
He was trying to help us look at the better then only the worse. It is hard because of this down turn. He also said the down turn could be lasting longer or worse due to the surgery.
We know it could be worse, we just hope and pray it doesn't get worse. Hopefully some of this months testing will help us to help Jack be in less pain. I also hope this new medication helps. We know after talking to him, life will not be like it is for other kids. We already new that, but he brought it home for us. This effects his energy and he will have to make adjustments. He will have to learn to deal with the fatigue and things to do.We just hope orthopedicly he gets better and his tone increases . The doctor said he will be more clumsy and we hope his instability will get better. What is hard as positive as we or he tries to be it doesn't change that there is no cure, no prognosis and know one knows. We have to take each day at a time and deal with each issues if and when it arises. When Jack asks me like he has, "can I play baseball like Noah", what do I say? I just don't know, it doesn't look good. If he does it will not be like everyone else. I have to remember Jack is not like everyone else and deal with that. Jack doesn't understand much, but in the next few years will start to more and more. I pray he deals with it OK. He gets frustrated now and has a hard time. Only God knows. I just want to take the pain away and make his life as normal as positive.
They are making strides with DNA and in the future I pray there is more we can do for Jack. Especially if he gets worse or has other areas effected.
Subscribe to:
Posts (Atom)
Posts
