Wednesday, November 10, 2010

Not as Bad as it Could Be

Vada and I have been home for about two hours now. The discharge literally took hours today, but were home now and that's what counts!

Dr. Shaw, one of the cardiologist came in around 10 a.m. and discussed what he saw in Vada's Echo and EKG. At that time he hadn't looked at her chest Xrays so everything he had said at that point kind of just sat in limbo until he came back..., around five. When he came back he brought Dr. Bramlett, another cardiologist from their group. Dr. Bramlett has been following us since my pregnancy. He was the first and only cardiologist that I saw when I was pregnant. Since then we have met all of the cardiologist, but I still like Bramlett the best. I'm familiar with him and he is familiar with Vada's heart and that comforts me.

Dr. Shaw and Dr. Bramlett stood outside of Vada's room for forty to forty-five minutes before coming in. It took them quite a long time to actually enter Vada's room and really tested my patience, but I finally received news that made sense and left me feeling semi confident in bringing Vada home again.

Vada is having difficulty breathing because her heart is enlarged. It is being called Hypertrophic Cardiomyopathy (HCM). Right now I am understanding that the HCM in Vada's case is being considered a "symptom" or a "side effect" and not a "disease". Basically what it means is that the walls of Vada's heart are too thick. There has been a plaque like build up on them. Most likely a side effect from the ACTH. The build up has made her heart not only larger but heavier. Her lungs have become a cushion that her heart is weighing down on and in return is causing the breathing difficulties. With the HCM setting in surgical repair becomes a difficulty. Actually, the surgery would be fine. The recovery most likely would not be. With HCM the heart has a hard time "relaxing" and that is needed for a repair to fully take place. Vada would most likely struggle very hard to recover. This is something that we have all agreed is not a risk that we are willing to take at this moment because above and beyond all of this we are still dealing with the fact that Vada is Immunodeficient and possibly has Adrenal insufficiency. Meaning fighting off infections would be another difficult process on her little body.

Two weeks ago we were told that Vada is having Congestive heart failure. Today we are being told that this is not fully the case. Today we are being told that over all her heart is about the same as it has been all along, other than the HCM. She will still need to have surgical repair, just not right away. After discussing the HCM we then went to the Tachycardia (rapid heart beat).

Vada has ASD and VSD as well as an aortic stenosis. We have known about the stenosis we just refer to it as the "narrowing" of one of her valves..., because it' easier to understand and say. The stenosis is actually benefiting Vada because it is helping prevent blood flow into her lungs. However, we do know that she does have some fluid retention on her left side. The doctors believe that Its everything combined causing her her heart to over work. You have probably seen shows about people getting addicted to steroids and that there is withdraw when coming off of them. The case is the same with Vada coming off of the ACTH. Some children just struggle harder. If you add her withdraw to the un repaired ASD, VSD, stenosis, Cushings, and the HCM then you have one strong little baby going through a whole hell of a lot!

What does this mean over all? It means that we wait. Tomorrow is the last day of ACTH and Keppra. If the HCM is caused from the prolonged usage of the ACTH then we should see a decrease in the "thickness" of her heart over time. As her heart size (the walls) and her body weight goes down her heart should not be so over worked and the tachycardia should decrease as well.

Vada goes back to the Cardiologist in a month. She will have another ECHO done then to see if we notice any progress. Hopefully we do. However, it may take a couple of months for things to go back to "normal". Both Dr. Bramlett and Dr. Shaw agree that we wont need to do surgery for at a couple of months, which puts us into early to late Spring. Maybe even back into the summer.

We were told that there will probably be more moments where Vada will have labored breathing or rapid heart beats and we will have to pay attention to the consistency and extremeness of each episode but over all Vada should be just fine.


Annie @ The House That Jade Built said...

So glad you are home now, and that you have until the spring or summer to keep a close eye on Miss Vada's heart! I have been praying so very much for you all, and will continue to pray for her as she takes her last ACTH - praying for no more seizures & for the HCM to decrease! We still are waiting on our appointment, but they said we'll see Bramlett or Shaw.

PS - I had time to finally read most of your blog - lots of great information for me, but I also enjoyed all the pictures of Vada, your girls, and family!

Brian Stipp said...

So glad you are home! Happy last day of ACTH, sweet Vada!!

Anonymous said...

How scary for all of you! We are praying for you Vada - stay strong! Tara - you are in our prayers. A friend from downsyn and facebook - Maureen

Anonymous said...

I am glad to hear the end result will be good. I am sad that she (and all of you)are going through such a difficult time. You are all in our thoughts :)