The last 2 weeks and Mott.

So much has happened since we got home from Cincinnati. The boys are part of a reading program called BookIt with Pizza Hut. They have a set amount of time to read everyday and then I reward them with a coupon for a free small pizza at the end of the month. The programe is until March 2017. When we went to get the first free pizza the boys were given a little book and a sticker. They will get a sticker every time to fill their book. Unfortunately because Broc cannot eat he is donating his pizza to any person that comes into pizza hut without food. The manager said that they often have people standing around the area which they can give his pizza to. Broc was so happy that someone else with no food will get his free pizza.

Unfortunately even though we stayed away as much as we could Broc caught a virus which compromised his airway and he ended up choking a lot more than we liked. We are now doing breathing treatments twice a day to help with the inflammation and he has gained another piece of medical equipment. Very much for our peace of mind at night when he sleeps.

The virus did unfortunately give Broc another ileus. This one has lasted almost 3 weeks. The longest one he has had for sure. We think it was due to the anesthesia from the surgery as well as getting ill. He has had some really rough days and then other days where he will be okay. His team was talking about admitting him but we decided that we had all the meds and fluids at home and putting him in the hospital wouldn't be a good idea with all the viruses floating around.

We were very happy to attend the Circuit Assembly too. Broc did have a lot of pain that day but with the help of his stroller to lay down in and sleep and his meds we were able to get through the whole day. His stroller has really allowed us to do as much as we can.

Now onto the serious stuff.

We took a trip to Michigan yesterday to C.S. Mott Children's Hospital and the CVC to see Brocs Vascular Team. It was a very early morning as we left around 4:15am. His nurse came with which helped a lot with getting the boys ready and navigating all the testing that was done.

Unfortunately, things are not getting any better with Brocs leg length. His legs are now 9mm apart. After his revision was done in Jan 2015 his legs were 3mm in Nov 2015, then 6mm in May 2016 and now 6 months later 9mm. There's and our fear is that by March 2017 he will be 1.2cm again. He does have a 6mm lift inside his right shoe to help with this as the thought was that his leg was still getting used to the new blood flow and because he is going through a growth spurt it would even itself out. Well that is now not the case as we have seen in the last measurement. 

 

Excuse the toenails.

They want to schedule an angiogram for him to look at all his vessels in both legs. They are still unsure where the blockage is as all the testing we did yesterday was relatively normal except for the scanogram we did. This is exactly what happened in 2014 before his revision. The only clue we had testing wise was the scanogram until he had the angiogram and that is where the blockage was found. Broc gives us all the signs we need to know that he is in trouble. He has leg pain and knee pain with activity. His ankle keeps going over too while he is walking. He continues to walk on his toes too to compensate too. 

We have asked them that since the angiogram is not emergent at this time if we can schedule it for March 2017. Both Broc and our family need a break for a little while with medical procedures. 

Broc will be having a brain and spinal MRI with sedation in Dec as well as a sleep study and another airway surgery. We are hoping that will be it for this year as we know next year will have some more.

Thank you everyone for your love,prayers and support.

   

Back home

Broc and I came home on Sunday afternoon late. It wasn't too bad of a drive and thankfully not that long either as it looks like this may be our third hospital that we will have to frequent from time to time.

Broc and I had a wonderful time with the Rumping's and of course the families that we met at the hospital too. We met another heart family as well. It so great to meet all the moms that your friends with especially when you get to meet them face to face. The conversations that we have are so easy and you feel like you've been friends for years.

The pics of Cali and I are a little blury cause it was late at night but we had such a fun evening. I already miss her calling for us. When ever you were having a rough day Cali would bust out with something and totally change your mood and your day. Such a ray of sunshine!!

Broc was able to be part of a music video while we were at the hospital. He loved every minute of it. Playing games and singing, 2 of his favorite things to do. The artists name is Erika Scott. She was so friendly and made Broc and all the other kiddos feel like typical kids even though they had IVs, tubes and wheelchairs.

Being home has consisted of laundry and unpacking and of course cleaning syringes. When we have to leave for so long we draw up both boys meds for the week which entails about 50 syringes. Its so good to be home. We missed Daddy and Lil Mark so much. For Broc's next surgery we will all be going to Cincy. We are hoping to get accommodation at the Ronald McDonald House. If all goes smoothly like this time round then we should be home after a couple days. It will be a busy week for us as Broc will be having a brain and spine MRI at Riley that week too.

We are hoping to have a lazy November with very little illness. I know we cannot get away from it completely as its the season.

Thank you for all the love,prayers and support from everyone.