This past week Broc started a new formula. I have been doing some research and looking for a formula that was free of most allergens. I had also spoken to a couple moms to see what there kids were taking. I did some research and found one that we are really hoping will work for him.
Broc has not really gained any weight since January. Maybe a couple ounces here and there. We are hoping that the new formula will help him gain weight and he will be able to tolerate it better.
Since Broc is still struggling with pseudo obstructions we have decided that the food trials that we were doing for him will come to an end. It seemed like everytime we tried to feed him it ended up causing more pain and discomfort than joy for him. His system just cannot digest food. We are not sure why but it just doesn't want to do the work its supposed to do.Unfortunately he is only 8 years old and will still take food without us knowing and does end up sick.
We are doing weekly weights on him to track his weight gain. We have an app with his GI surgeon in August in the hopes that he will be able to offer us something else.
Broc is still dealing with his low WBC and Neutrophil counts. It continues to make going places a little challenging for us. We are trying to protect him as well as have fun at the same time. Hopefully seeing the Bone Marrow Failure Specialist this week will give us some more options. I did listen to a Neutropenia Conference over the weekend and learned a lot about the disease. We still have a lot to learn. Hopefully once we have a name to his neutropenia we will be able to treat him.
We want to thank everyone that supported our fundraiser we had. We were totally blown away by your support. If you bought a t-shirt it should be arriving in a week or two. If you would still like to make a donation towards Brocs wheel chair you can do so through Paypal. This is the address : sambuka18@yahoo.com
Thank you again for all the love,support and prayers.
Sunday, July 19, 2015
Tuesday, July 7, 2015
Hemonc Update and Other stuff
Broc has been having weekly lab draws and they continue to be low. We took a trip to see Dr Hege yesterday at Riley. We had a friend drive with us and she looked after Lil Mark while Broc and I were seeing the Dr. Thank you so much for coming with us. I really enjoyed the company too on the drive. I'm always afraid of taking someone with us in case something goes wrong and Broc is admitted and then they would be stuck there, thankfully that has not happened yet.
When Dr Hege drew Brocs labs the last time we were there she was so happy with them and was ready to tell us that things are looking up and we are just going to be followed. Meanwhile back at the ranch we were having weekly labs drawn and once she got to see all those numbers she was flawed and knew right away that there is definitely something going on and thankfully she is not going to usher us out the door like so many other drs have.
She went through all the testing that she has done so far and everything was nornal or negative which is great on one hand cause you never want something to be positive but on the other hand you sometimes wish something to be positive so you can finally have an answer.
We also went through the next phase of testing that will be done on our next visit to see her which will be at the end of the month. We are holding Brocs IV therapy so that his immune system will be (clean) when the next set of labs are drawn.
We will also be meeting with a Bone Marrow Failure Specialist at our next visit. She is hoping that he will have some ideas on what we are dealing with and what our next steps will be.
He is still scheduled for a bone marrow biopsy in Oct when his GJ tube will be changed out. We asked her if we are doing everything we can to protect Broc. She said yes staying away from crowds and public places when his ANC is around the 500 mark and lower is crucial. We also need to get him a more heavy duty mask to wear when his ANC is between the 0-600 level and we absolutely have to be out.
If Broc does get a fever of 101F we have to take him to the ER for IV antibiotics. Last time we thought that I could manage it at home but she said that I need to be his mom and not his nurse and Dr. We expressed how we didn't want to go to the ER as we have been told the same old viral illness story over and over and there is nothing they can do for him and we are wasting our time. She said if that happens we are to call her office and they will take over Brocs care and the Drs will have to listen to her team.
She is also thinking that his low WBC and Neutrophil counts and sometimes other counts too are not viral illness related. Sometimes they will be but not every low count will be attributed to illness.
Most of our Summer has been spent at home with friends. The boys have been doing playdates, picnics at the park out in the open or riding their bikes at home. We have avoided play places and the mall. Parks are great cause they are out in the open air. We did go to the zoo last week as a family. It wasn't too hot and we had a great time. Normally we would feed animals and sometimes even touch them but we were all hands off this time. We had Brocs counts checked the day before so we knew that it was safe to take him out. Unfortunately we will be missing out on parties,graduations etc if Brocs counts are not safe to take him out or if he is ill.
Quality of life is also very important for him too so we are trying to find the balance between keeping him safe and enjoying being a boy.
Here is a picture of the chair that Broc will be getting. His chair will be red or orange. This will enable him to be out with us even though he doesn't feel the greatest. It will be supportive enough for him too that it will help with is leg fatigue too.It will also allow him to sleep when he is tired too.
If anyone has any questions please feel free to contact me or email me. We thank you for all your loving support and prayers.
When Dr Hege drew Brocs labs the last time we were there she was so happy with them and was ready to tell us that things are looking up and we are just going to be followed. Meanwhile back at the ranch we were having weekly labs drawn and once she got to see all those numbers she was flawed and knew right away that there is definitely something going on and thankfully she is not going to usher us out the door like so many other drs have.
She went through all the testing that she has done so far and everything was nornal or negative which is great on one hand cause you never want something to be positive but on the other hand you sometimes wish something to be positive so you can finally have an answer.
We also went through the next phase of testing that will be done on our next visit to see her which will be at the end of the month. We are holding Brocs IV therapy so that his immune system will be (clean) when the next set of labs are drawn.
We will also be meeting with a Bone Marrow Failure Specialist at our next visit. She is hoping that he will have some ideas on what we are dealing with and what our next steps will be.
He is still scheduled for a bone marrow biopsy in Oct when his GJ tube will be changed out. We asked her if we are doing everything we can to protect Broc. She said yes staying away from crowds and public places when his ANC is around the 500 mark and lower is crucial. We also need to get him a more heavy duty mask to wear when his ANC is between the 0-600 level and we absolutely have to be out.
If Broc does get a fever of 101F we have to take him to the ER for IV antibiotics. Last time we thought that I could manage it at home but she said that I need to be his mom and not his nurse and Dr. We expressed how we didn't want to go to the ER as we have been told the same old viral illness story over and over and there is nothing they can do for him and we are wasting our time. She said if that happens we are to call her office and they will take over Brocs care and the Drs will have to listen to her team.
She is also thinking that his low WBC and Neutrophil counts and sometimes other counts too are not viral illness related. Sometimes they will be but not every low count will be attributed to illness.
Most of our Summer has been spent at home with friends. The boys have been doing playdates, picnics at the park out in the open or riding their bikes at home. We have avoided play places and the mall. Parks are great cause they are out in the open air. We did go to the zoo last week as a family. It wasn't too hot and we had a great time. Normally we would feed animals and sometimes even touch them but we were all hands off this time. We had Brocs counts checked the day before so we knew that it was safe to take him out. Unfortunately we will be missing out on parties,graduations etc if Brocs counts are not safe to take him out or if he is ill.
Quality of life is also very important for him too so we are trying to find the balance between keeping him safe and enjoying being a boy.
Here is a picture of the chair that Broc will be getting. His chair will be red or orange. This will enable him to be out with us even though he doesn't feel the greatest. It will be supportive enough for him too that it will help with is leg fatigue too.It will also allow him to sleep when he is tired too.
Here is the link for the fundraiser for Broc. www.booster.com/brocsbuddies?
These two boys really love each other. On days that Broc is not feeling well, Lil Mark will climb into bed with him to keep him company.
GI Update
Broc saw the GI a few weeks ago. Sorry its taken me so long to update he has not been well and on the good days we have tried to fit in some fun.
Broc continues to have pseudo obstructions where he cannot tolerate his formula or pedialyte so we have to hook up IV fluids so that he doesn't dehydrate. While he is on IV fluids we drain his g port continuously so its very difficult to leave the house let alone the couch with him. Draining his belly helps keep the pressure off of his abdomen and also drains all the bile that he would be otherwise throwing up. I know its not a pretty picture but that's our reality now. We never get a warning when its going to happen and these episodes come on very quickly.
Originally we thought they were brought on by a virus but we are slowly learning that his low WBC counts may not be viral illness related. That will be in the next post Hemonc Update.
We are trying to switch Brocs formula to one that does not have corn syrup in it, incase that may be causing some of the issues. In any case we would like to give him a formula that takes very little work to digest. We are also trying to get him Boost Clear which is similar to pedialyte but has more calories in it. On the days that Broc cannot tolerate formula but can tolerate pedialyte then we will give him boost instead so that he can at least get the calories that he so desperately needs.
We have tried to introduce foods into his diet. He only eats for pleasure (meaning the food that he consumes is no where near enough calories for him to survive on). Some days he tolerates the food well and other days it causes him a lot of discomfort so we have to drain it as soon as it causes a problem. Also his food takes an extremely long time to leave his stomach and small bowel so if he eats too much food it will just accumulate there and cause a lot of pain and bloating which can be very uncomfortable for him. Introducing foods is a very fine line that we are learning.
Broc is not text book by any means. He is totally writing his own book and all his specialists and doctors are learning this.
He is also having lots of issues with bacterial overgrowth. We have treated it before and it was successful but it seems to have reared its ugly head again. We are treating it again more aggressively this time. It causes an immense amount of gas buildup for him which is so uncomfortable sometimes that he cannot even move. Once again it is caused by his extremely slow gut.
His GI Drs believe that there could be some nerve/muscle damage to his colon which is adding to the problem. That would be caused by his Mito Dysfunction. We are going to see a Metabolic Geneticist to see if he has any ideas to help with this further and we are hoping that he will be doing the Whole Exome Sequencing Testing.
We have an app with his GI surgeon in Aug to see if we need to investigate further into his colon. If there is a section of his colon that is not functioning then it makes sense to take it out as it may help him. We have a lot more researching to do before we jump on this wagon.
For now we are patiently waiting for the insurance to approve the new formula for Broc. We are also slowly trying to increase his feed rate by 1ml every week. His goal rate is 75mls per hour and he is currently at 57mls per hour. It may not sound like a lot but to a gut that is not very happy with anything in it, its a huge amount.
We are still running Brocs fundraiser to buy T-shirts. There are only a couple days left. Here is the link if you would like to buy one. www.booster.com/brocsbuddies?
If you would like to make a donation please contact me for paypal details.
Thank you to everyone that has supported us this far.
Here are some pics from our Regional Convention that we attended. We were able to make 2 days as Broc got really sick on the Friday evening. He was still sick Sunday but he rested most of the day.
Broc continues to have pseudo obstructions where he cannot tolerate his formula or pedialyte so we have to hook up IV fluids so that he doesn't dehydrate. While he is on IV fluids we drain his g port continuously so its very difficult to leave the house let alone the couch with him. Draining his belly helps keep the pressure off of his abdomen and also drains all the bile that he would be otherwise throwing up. I know its not a pretty picture but that's our reality now. We never get a warning when its going to happen and these episodes come on very quickly.
Originally we thought they were brought on by a virus but we are slowly learning that his low WBC counts may not be viral illness related. That will be in the next post Hemonc Update.
We are trying to switch Brocs formula to one that does not have corn syrup in it, incase that may be causing some of the issues. In any case we would like to give him a formula that takes very little work to digest. We are also trying to get him Boost Clear which is similar to pedialyte but has more calories in it. On the days that Broc cannot tolerate formula but can tolerate pedialyte then we will give him boost instead so that he can at least get the calories that he so desperately needs.
We have tried to introduce foods into his diet. He only eats for pleasure (meaning the food that he consumes is no where near enough calories for him to survive on). Some days he tolerates the food well and other days it causes him a lot of discomfort so we have to drain it as soon as it causes a problem. Also his food takes an extremely long time to leave his stomach and small bowel so if he eats too much food it will just accumulate there and cause a lot of pain and bloating which can be very uncomfortable for him. Introducing foods is a very fine line that we are learning.
Broc is not text book by any means. He is totally writing his own book and all his specialists and doctors are learning this.
He is also having lots of issues with bacterial overgrowth. We have treated it before and it was successful but it seems to have reared its ugly head again. We are treating it again more aggressively this time. It causes an immense amount of gas buildup for him which is so uncomfortable sometimes that he cannot even move. Once again it is caused by his extremely slow gut.
His GI Drs believe that there could be some nerve/muscle damage to his colon which is adding to the problem. That would be caused by his Mito Dysfunction. We are going to see a Metabolic Geneticist to see if he has any ideas to help with this further and we are hoping that he will be doing the Whole Exome Sequencing Testing.
We have an app with his GI surgeon in Aug to see if we need to investigate further into his colon. If there is a section of his colon that is not functioning then it makes sense to take it out as it may help him. We have a lot more researching to do before we jump on this wagon.
For now we are patiently waiting for the insurance to approve the new formula for Broc. We are also slowly trying to increase his feed rate by 1ml every week. His goal rate is 75mls per hour and he is currently at 57mls per hour. It may not sound like a lot but to a gut that is not very happy with anything in it, its a huge amount.
We are still running Brocs fundraiser to buy T-shirts. There are only a couple days left. Here is the link if you would like to buy one. www.booster.com/brocsbuddies?
If you would like to make a donation please contact me for paypal details.
Thank you to everyone that has supported us this far.
Here are some pics from our Regional Convention that we attended. We were able to make 2 days as Broc got really sick on the Friday evening. He was still sick Sunday but he rested most of the day.
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