As usual Dr Capannari was willing to see us and make sure everything is okay. That is what I love about him. He knows how complex Brocs heart is as well as the rest of him that any change in the way he acts can mean something big.
He is still having some elevated eos counts which we think is from the sinus infection as well as the ABX he is on. We didn't want to give him the ABX cause that on its own can make him ill but we also didn't want any ear infections. He seems to be feeling better regarding the sinus infection and so far no C-Diff from the ABX. He has had lots of tummy pain and nausea from the ABX so we have been using zofran and have decreased his rate on his feeds.
Yesterday Broc and I went to see Dr C. He was very eager to hear all about Brocs vascular surgery and all the new things they found. He agreed that hematology will be a great idea to deal with all the new coagulation issues he is dealing with. We are still waiting on Dr Harris to get us that appointment.
Dr C listened to his heart and felt his pulses. He was very happy with what he heard but again said that with Broc you cannot rely on what you hear and feel you have to see what he looks like on the inside. He said that everytime he sees Broc is coming in he expects him to look frail and very sickly but in true Broc fashion he is quite the opposite. He is growing (well he was) and holding his own oxygen. Broc has gotten taller but has lost quite a bit of weight.
He decided that the best would be to have an echo so we can see what his heart looks like. He agrees that he would rather look and tell me that everything is okay than us not look and miss something going on.
Broc does so well at lying still while having his echo done. Since he was a tiny baby he has layed on the same table for his echo's and Pam has always done them. She is so sweet with the kids and such a lovely person to talk to. She knows how to put a moms mind at ease while she is examining their heart.
Once she was done Dr C came in to talk to us. He scrolled through the whole echo and then stopped to talk to me. He said that unfortunately Brocs left ventricle has gotten thicker since we were there in September which means that his heart is working harder. He carried on scrolling and stopped again. He showed me the turbulence that his leakage is showing on the screen. If you haven't seen what turbulence looks like on an echo its looks like a crazy thunderstorm on a weather radar. Lots of orange,yellow and sometimes green. There is also red and blue in the mix too which is the 2 flows of blood. Unfortunately Brocs leakage has gotten worse since we saw him last too. We didn't get any numbers yet so I will have to wait for the actual report. Fortunately Brocs heart has not started to dilate yet which is a good thing. When that happens then it means that we would have to start looking at valve transplants.
We will be seeing Dr Hoyer in the Spring so that he can follow Broc closely too. Slowly Dr C is handing over all his complex patients to Riley as he is not available on call anymore which means if there was a heart situation for Broc we would have to get him to Memorial as soon as possible and then he would be flown to Riley as fast as possible.
We knew this was going to be our future it just means that its happening a lot faster than we anticipated. First when Broc was dx'd we were told this would only happen when he was in his teens. The last year we were told this would start to happen in 3-4 years. Now it looks like the progression has already started. Broc is already on a heart med to slow the progression. For now it looks like Broc will be seen every 6 months or sooner to monitor his heart.
Now onto his GI appointment. Dr Zadie is very happy with the 1 pound weight gain Broc had. It means that his intestines are much happier with accepting food than his belly is. We have known that the problem is his belly with it being extremely slow and having a hard time digesting his food. The formula that he is on now is very easy to digest so its very easily absorbed as well.
Broc will have the NJ tube for another 2 1/2 half months for us to fully see the effect of how his digestive system is adjusting. Once his eos count is down and has stayed in the normal range for a number of weeks after those 2 1/2 months then we will start to introduce reg foods one at a time. As soon as we see a spike in his eos level we know that his body is reacting to that food. Now unfortunately Brocs body is very sensitive so anything new that happens to his body can cause a spike in his eos level. Just a simple cold virus or injury can cause it so we will have to keep a very close eye on him.
The hopes is that he will eventually have a few foods that will be considered "safe" for him to eat. The fact that his heart is getting weaker means that it will have to work harder which means he will have to consume a huge amount of calories to keep him going. Unfortunately Brocs body is not able to do this as he cannot eat big meals and because his belly is so slow at digesting things bigger meals or more calories make him have lots of belly pain and nausea which then causes him to not eat at all. Dr Zadie has decided that the best thing would be for Broc to get a GJ Tube so that we are able to feed him easily digestable formula so that he can keep up his calorie intake. He will still be able to eat regular foods if we find foods that are safe for him and then we will supplement him at night possibly. We would have to find out what is the best way to do that.
It is not urgent to get the tube but when his next surgery is scheduled which would possibly be ear tubes or cleft surgery depending on his ENT visit in March, then he will be getting a GJ Tube as well.
He showed me Brocs Growth Chart yesterday and he has dropped drastically on his growth chart. He was 49lbs when he was 4 years old and if he had continued on the same curve he should be weighing around 75lbs now. Broc only weighs 57lbs.
As parents we really wish all these GI issues could have been sorted and figured out when he was much younger so that at the age of 7 he didn't have to go through this but nothing we can do about it now other than help him as much as we can.
Our next appointments will be ENT and then seeing the hematology about the new coagulation issues Broc has and how to handle those if there is any treatment for him.
Although he smiles and seems very energetic, he really is not happy about not being able to eat anything or do all the things every other little 7 year old boy is able to do. As parents it is so heart breaking to have your child ask for food knowing that it is for his own good that right now he cannot have any. He does get grumpy and mad but who wouldn't in his situation. We are so proud of his strength and courage that he has. He talks everyday of the time when Satan will be gone and Jehovah will make all the bad things go away. He talks about being able to run and play with his brother and not getting tired and not having to visit the Drs and hospitals anymore. You can see the joy and light in his eyes when he talks of times like this. As parents it makes out heart so happy to know that he longs for a time like that and knows that its real.
I know this is a long post full of lots of information.If anyone has any questions please feel free to ask.
We truly appreciate all the love, prayers and support we get from each and every one of you.
