Good news and IVIG

On Monday we took a trip to Michigan to see Brocs vascular team. Thankfully the weather was fairly decent. It only started snowing when we were about 1/2 hour from Michigan. 

We had our mandatory pic in front of big Bird and Brocs frog as he calls it.

We then went onto to find out all the results of his testing for the morning. We got the amazing news that Brocs legs are only 1mm different. He has grown 4" in 6 months. It's wonderful to think that Broc will not need another vascular surgery unless his arteries do not grow with him. As far as we know they are doing just fine. We have moved from 6 month follow ups to 1 year follow ups.

Char has been amazing and helped us so many times over the years. 

Dr Elisaon has saved Brocs leg twice. An amazing Dr with a heart of gold.  He has stayed longer at tbe hospital after he was supposed to be home just to come and talk to us. He came in late at night when Broc became really ill in 2015. A truly loving team that really cares about their patients.

Our drive home wasn't too bad , a little snowy but not bad.  We will be heading back in October for our follow up.

The boys and I went to La Porte hospital on Tuesday for Brocs IVIG infusion. Broc became very ill during the first 30 min - 1hour. He became very nauseas and his blood pressure dropped very low. They increased his iv fluids to see if that would help and his Dr ordered a cbc just to make sure everything was ok. All his labs pointed to a viral illness and severe dehydration. It took his BP a while to come back up. Anyone that came into his room noticed how bad he was feeling.

His team have decided to give him half his IV fluids before his infusion starts and then to increase his rate every hour instead of every 30 min. If he tolerates that well then we can leave it at that otherwise we will increase his rate even slower. The tricky thing with IVIG is you never know when the kids will react to it or not.

Broc will be seeing GI on Monday and then our next big trip is Cincinnati Children's the first week of January.

Thank you for all your love,prayers and support.

Anticipation

To think 7 years ago our Buddy had his Aortic Valve repair. He was such a little munchkin. Pinchable cheeks and cute lips. Every year we hold our breathe to see if  he needs a new valve or not. The anxiety leading up to those weeks are really stressful. At the moment we know his heart is holding on. His Aortic Valve has regurgitation but its not bad enough to need a replacement at the moment. He does run out of breathe when playing and has a hard time keeping up when playing with friends. His next cardiac check up will be in April of next year.

Next week we are heading to Mott (Children's Hospital in Michigan) with daddy to visit his Vascular Team. These appointments are really stressful. The weeks leading up to them we as parents are wondering what the outcome will be. We know he has been in lots of pain lately especially after exercise and walking. Its an anxious drive up there. First we head to x-ray to measure the length of both his legs and also an x-ray of his hand to make sure his growth is appropriate for his age.

Next we head to the Cardiovascular Unit to measure the blood pressures in his arms and the brachial pressures in his legs and toes. We then move to another room and have an ultra sound done to see the blood flow of his right leg and also the graft that he had placed.

Lastly we head to the Drs appointment. The whole day we have been holding our breathe for this moment when he walks in the room and gives you the news. Except he doesn't give it to you right away he wants to know how Broc has been the last 6 months since we saw each other last, how his pain has been etc. As usual Broc has always been up to something so we have a lot to discuss. Broc had a busy Summer medical wise so we will have a lot to discuss. At this stage we are trying to hurry Dr E through the catch-up process so we can get to the numbers. Its always the numbers with me. As Dr Hoyer says I'm a numbers lady. I love my numbers. To me they let me know what is going on and how much longer till something needs to be done.

Finally we get to the much needed numbers part. First Dr E will let us know how much his legs have grown and that ever critical number of how far apart his legs are. That number has a huge impact on Brocs life. If surgery needs to be done there is a very small window of inches in which they can do surgery. If his legs grow too far apart then surgery is not an option for us anymore and we have missed our window of opportunity.

Then how to handle the news. Its never good news in my books. Some may think that I'm being negative and not grateful. Don't get me wrong anytime you child doesn't need surgery is great news but from a parents perspective it's a little different well for me anyways. We know Brocs had increased pain with any activity. We would love to make that pain go away. If they come back and tell us his numbers have stayed the same and there is no need to have surgery then you are sad as you cannot take his pain away but supposed to be happy because he doesn't need surgery. On the other hand if his numbers have changed and one leg is much shorter than the other then you are happy because yay we can do something about his pain and help him but NO that's terrible news because now I have to explain to my child once again that he will need to have surgery and will have yet another scar and be in immense pain for a while, have restrictions, which we all know Broc hates being restricted and possibly have complex issues afterwards too. 

I know its human nature for people to tell us to think positively and while we know people mean well, we have been on this journey too long to know that things are never easy for our Buddy. We do think positively but are also realistic. We know how complex he is and appreciate all the prayers.If we don't take your comment like you would expect us to, of "think positively" "everything will be fine", please don't be offended.

Next week Broc will be having an IVIG infusion at the hospital too. If anyone would like to come and say hi please message me and I can give you the room number.

Thank you again for all the love, prayers and support for our family.