Its so sad to see him like this cause we know that we cannot do anything but try and help him get comfortable. We tried nausea meds, gas drops,venting him nothing helped him. Eventually at around 1:30am we switched him to pedialite and hooked up IV fluids.
He was finally able to get some rest but kept crying out in pain. Needless to say I only got about 2 hours of sleep Sunday night knowing we had to leave at 4am Monday for an app at Riley. It was a quiet drive there as he slept the whole way there.
Once we got there I was able to grab a quick bowl of oatmeal and coffee. Then we headed off to EKG,Echo and to see Dr Hoyer. It was great to see Nancy again,our favorite echo tech. Getting Broc comfy on the bed was quite the challenge as his was in so much pain any movement was so uncomfortable for him.
Nancy had Disney channel on TV for Broc so we were able to distract him very well. She was very sad to hear all that has been going on with Broc since we last saw her.
Once our testing was done we went to see Dr Hoyer. He was also saddened to hear all that has been going on and continues to go on. He kept saying that he has ever had another Broc patient. He surely is unique. He is not the first Dr to have told us that this which makes this journey all the more difficult.
Dr Harris said that Brocs heart looks good. He was very happy with the function and said that the leakage that is still there is in the mild to moderate stage pushing closer to the moderate stage. Once again nothing surgically will be done at this point which we are very happy about as this boy surely need a break from the OR. Unfortunately he will still need to have surgery down the road. His leakage is something that will continue to get worse over time. He is also going to bring Brocs case to the table when they next have a conference to get some other opinions. Broc is having all the symptoms of needing surgery at this time but his heart is not bad enough. His ventricle is not thickening like they would expect to see so that is great news.
While the news of his heart is great we still have no answer as to why Broc is experiencing all these symptoms. Seen as we were there at Riley yesterday Dr Hoyer wanted us to go to the ER and have Broc checked out. They did labs and xray and said that its possibly another pseudo obstruction but nothing that they could help us with as treatment is gut rest and IV fluids and since we already have IV fluids at home we were good to go.
We are seeing GI again this morning to see if we can come up with another plan. We may have to have the TPN talk again. I have spoken to a lot of moms whos kiddos are on TPN and it really seems to be beneficial to help these kiddos.
Thank you for all your prayers love and support. We are trying our best to hold our heads above water. Life with special needs kiddos certainly has its challenges. If any of our friends and family are willing to learn Brocs care and would like to help out please let us know. Mark and I would really like a night to recharge every once in a while. Taking care of Broc is a 24/7 job. He has good days and bad days. We are learning that what is happening to Broc is not going to go away. Life is going to change for us all as we learn how to adapt. We have some more apps coming up for him and more labs as his local team are really hoping to figure out the best way to help him.
We know that through all of this Broc truly does rely on Jehovah to help him and comfort him. He was so eager to tell his echo tech yesterday about jw.org and how they have wonderful children's videos and songs and that she would love to watch them cause she loves children. My heart melted. He wasn't afraid or scared it was like he was just talking to to her in regular conversation. This boy truly can warm his parents heart.
Poor Broc and all of you! I hope that someone can come up with the right solution to help Broc so he can be pain free and able to get back to just enjoying being a little boy. Praying!
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