It has been an emotional week for Mark and I. Brocs body has never recovered from what landed him in the hospital at the end of April. His WBC and ANC continue to be low. Some of his other numbers are a little higher than they should be too. He has lost his olive complexion and become a pale little boy. He is trying really hard to do all the things he used to but having a hard time finding the energy to do them. We know that his heart is weaker too so that could contribute to him not having enough energy. The fact that he is sick is also putting a lot of strain on his weak heart, all the more reason for us to figure out what is making him so sick. He truly should look a lot sicker than what he really is with the blood counts that he has. He has not felt well for so long that his body is used to being sick and he can handle it fairly well. The big tell tale sign now is how his digestive system is failing him.
We have been on the phone all week with trying to get Drs to give us answers. Finally I was at my wits end and called a Drs office at Riley and begged them to help us. We have an app with this Dr on Wed afternoon. We are trying not to be negative but at the same time being realistic. Once again they could come up with nothing and we are again back to square one which would lead us on another journey. OR they could come up with some not very pleasing answers but non the less they will be answers and we can hopefully have our little Buddy feeling better again.
Because his body is fighting something he has very little energy left for his digestive system to work properly. He has already been on IV fluids at home due to him not tolerating his feeds properly. His gut is extremely slow at times which makes him have lots of pain and not feel so well.
I'm trying to vent him every couple of hours to help with the gas/air trapped inside his belly. Today was another bad day so he is on pedialite until we can speak with his GI in the morning. His GI has consulted with Cincy and he is waiting to hear back to see if there is anything they can do to help Brocs GI system.
Thank you for all your love,support and prayers. We can really use lots of prayers this week. Prayers that the Dr is willing to help us and listen and prayers for Mark and I to have a calm heart.
Sunday, May 10, 2015
Monday, May 4, 2015
What a week.
Broc was discharged from the hospital on Tuesday afternoon. Finally he was able to tolerate his feeds again and feel a little better.He has still not gained all his energy back and his very tired at times. Even a short run outside with his brother is tiring him out like crazy. He is getting frustrated cause he cannot keep up, he has to keep taking breaks and Lil Mark is getting upset cause his brother cannot play with him. Man .... tying to keep everyone happy and explain all the reasons why is really tiring in itself.
Brocs count continue to stay low so it will be another week of staying at home. We are trying to keep up with his school work and give his body the rest it needs to recover. We have been in contact with some more specialists to see if they can help us. We are still waiting to hear from them.
We really appreciate everyones help while I was at the hospital with Broc. Unfortunately we never have a lot of warning before something like this hits him and we need to head to the hospital. Hopefully with our new plan we will be able to stay home from the hospital more often.
He has a wonderful nurse that comes to the house once a week to change his dressing and play with him when he has the time. Broc loves playing games with Jeremy. His Uncle also came to visit him at home and spend some time playing with him too.
Unfortunately Broc does not have the energy of a regular 7 year old so sitting down playing games with him is what he loves to do.
Brocs count continue to stay low so it will be another week of staying at home. We are trying to keep up with his school work and give his body the rest it needs to recover. We have been in contact with some more specialists to see if they can help us. We are still waiting to hear from them.
We really appreciate everyones help while I was at the hospital with Broc. Unfortunately we never have a lot of warning before something like this hits him and we need to head to the hospital. Hopefully with our new plan we will be able to stay home from the hospital more often.
He has a wonderful nurse that comes to the house once a week to change his dressing and play with him when he has the time. Broc loves playing games with Jeremy. His Uncle also came to visit him at home and spend some time playing with him too.
Unfortunately Broc does not have the energy of a regular 7 year old so sitting down playing games with him is what he loves to do.
Broc doing sand art at the hospital with Mike. That is the Wii station he played while he was passing the time too.
Here is his dinosaur sand art that he did.
Uncle Troy playing games with Broc
Both boys have learnt to tie shoe laces now but Broc was going a little too slow for Mark so he figured he would help.
Broc will be having a cardio check-up on the 18 May so we can see how his heart function is doing.
Thank you for all the prayers and loving support for our family
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