Broc was very antsy and wanted to get the ball rolling. Everytime the volunteer came into the surgery waiting room to call people back he would ask : " Is it my turn?" The volunteer was so happy when he could say yes. We got back to our room and Broc was already asking for all his requests. He is so good at advocating for himself and letting people know his needs. Sometimes he can be a little pushy but most of the time he is polite. They were running an hour behind so things went a little fast. Broc was not very happy that he had to give up the Wii U to get dressed.
The nurses had to promise him that it would be waiting for him in his recovery room when he woke up before he would leave to go to I.R.
Anesthesia came in and gave him his Versed so that he could be nice and relaxed when he went back. He doesn't like to taste it even though its going into his central line so he holds his breathe.
While he was back in the I.R. we went down to the family room to get some coffee and chat for a bit. We also me another friend of mine there too. Thank you Jill for spending the morning with us. We love having you visit.
We were able to catch lunch as well as the procedure lasted quite a while. I was happy as we didn't know when we would get another bite to eat as we knew that Broc had to lie flat for 6 hours after his procedure. Just as we were finishing up our lunch our pager went off and it was time to speak with the I.R. Attending Dr.
He called us into a room and said great news there were no blockages found. Great news you may say. I'm sure he expected me to jump for joy and shout from the roof tops. I was so sad and frustrated. He said all his arteries and veins look really great and he has no idea why his leg has stopped growing. He said too that a leg length discrepancy is no big deal and people live with it all the time. He said too that its possibly his muscles or scar tissue from previous surgeries that he has had. I was thinking to myself this guy just needs to stop talking so I can get out of there. There is no way I'm going to let my son live with pain for the rest of his life cause no one can help us. I knew in the back of my mind we needed to talk with Dr Eliason his vascular surgeon to find out what is really going on. Unfortunately we only spoke to Dr Eliason at the end of the day after all his clinic visits. So until then I poured out my heart to many and many people listened to my fears and concerns. The Attending ended the conversation by saying well you can be glad there are no blockages. I wanted to punch him!!
Once we were done we had to wait a little while longer till we could see Broc. I prayed so much that we would find answers and that how could our Buddy have to live like this with his leg not growing and the pain he deals with on a daily basis.
Finally we got to see our Buddy. He was not a happy camper. His pain was really bad and of course he was not allowed to move for 6 hours. His nurses were great with giving him pain meds and organizing a great surprise in his room when he arrived.
From the minute we arrived in recovery to see him he was asking what the Drs found and how can they please help him with his pain. He was looking for answers too. Everytime he asked we would change the subject as I didn't have the heart to tell him what the Drs said. I had the nurses page Dr
Eliason. We passed the time chatting and drinking coffee so that we could stay awake for the drive home. Broc passed the time playing the xbox lying down in the bed.
Dr Eliason finally came to see us around 6pm. He could see how upset I was and asked what was wrong. I told him all about our conversation with the Attending Dr and how he gave us no hope. He was very sorry that we were given this news and said that he would be speaking with him about it. He told us that he should have said "although there were no blockages found, unfortunately there is nothing angiographically that we can do but you will be talking to Dr Eliason at the end of the day and he has a plan for you".
I wanted to hug Dr Eliason so hard which we did once he left. Anyway I called Mark and put him on speaker phone so he could hear all the that Dr Eliason had to say and what the plan is. He said that him and Dr Stanley have looked at all the data from all the children that they have helped with femoral bypass surgery since 1974 and they have found that none of the children have had a bilateral femoral bypass. Meaning they would graft the superficial femoral and profunda artery. They have grafted into the superficial femoral artery as it's the biggest and allows the most amount of blood flow. Very few children have needed revisions like Broc and it has been enough for their legs to continue to grow. None of them have needed their Profunda Artery grafted. Broc has grown a lot and his legs are not keeping up with the amount of blood flow he has to help them grow properly. They also noted on the angiogram study that when the dye was going through all the collaterals that his body has made the flow was extremely delayed. Thankfully his body has made these collaterals otherwise his leg would be blue and cold from the lack of blood flow.
There is another artery called the Profunda Femeris Artery that feeds blood to the leg as well. They feel that Broc will benefit highly from having this grafted in as well.It will help with his pain and will give his leg enough blood flow to allow it to catch up again. They are very hopeful that this will work because when Broc had the revision in 2015 his leg went from being 1.2cm shorter to 3mm shorter than the left leg. At the moment Brocs legs are 9mm shorter possibly a little closer to 1cm. Once again Broc has entered rare territory.
The plan is to see Dr Eliason in clinic on May 8 for all the usual 6 month workup and we will add vein mapping to that as well. During that they will see what veins he has available for harvest in his arms and legs. It is a very small section of vein that they need for the surgery. As small as 3cm is needed. We will also do a scanogram at that time and measure his leg length again. Depending on how close he is to 2cm we will either schedule surgery or wait another 3 months and measure him again.
Here is a pic where you can see the Profunda Artery that they will graft in. Unfortunately this is a pic of the left leg.
The profunda femoris (also known as the deep femoral artery or deep artery of thigh) is a branch of the common femoral artery and is responsible for providing oxygenated blood to the deep structures of the thigh, including the femora.
If you have any questions please feel free to email or message me. Thank you for all the love and prayers yesterday. They were really felt.
It is so great when they have things the kids can look forward to! Our children's hospital is set up to look like a Castle--they even have a suit of armor in the entryway. There are fairy tale paintings and animal sculptures everywhere and on the floors for admittance there are tiny doors every twenty feet or so the kids can peek in and see what fairy tale lives there. Makes the hospital not so scary.
ReplyDeleteUgh, that Attending. When you need answers, you don't want to hear "at least". Especially when they have nothing else to say to you about what to do next :\ I'm so glad Dr Eliason does have a plan!
{{hugs}}