QUARANTINE UPDATE

Our family went into Quarantine on March 13th. The only person that has set foot in a grocery store or left for work would be Mark. I have done a few Walgreens drive through and today we did our first Kroger pick-up.

Broc has been struggling so much with low blood pressures, dehydration , sore throats, chest pain and lots of belly pain. His team have been amazing at helping us navigate things so that he can stay home. Unfortunately due to COVID 19 we are not able to go to Vanderbilt in July for our visit. It will now be pushed till later in the year or even next year. The team is sending out blood kits so that all the labs can be drawn at the home and they will start that process in the meantime.

His Immunologist was concerned about Broc having episodes all the time and how its making him feeling so we contacted the UDN team and spoke to them about letting Broc start his IVIG therapy in the mean time as we are still not sure how long it will be before we get to see them. The labs that they need will not be effected by the IVIG. Broc started IVIG therapy in the home in May.

We prep his sites with numbing cream.

I would draw up all the medication and fill the syringe. We also use some oils to calm him as the stress and anxiety of the needles is not fun for him. He also gets some premeds to counter act the some of the side effects he gets.

The infusion itself last about an hour. I check all his vitals every 15 minutes to make sure he's doing ok during the infusion.

Once we are done we take the needles out and cover with gauze and tape.

  

These are the bumps that are left behind as all the medicine is absorbed into his skin. Sometimes the bumps are smaller it just depends how the infusion goes and how his body decides to react that day. This way of infusing him is much nicer than being in the hospital all day. He typically chooses a movie and we all snuggle on the couch to watch a movie.We do his infusions once a week.

We have not seen any improvement in his episodes yet but it typically takes 6-8 months before we see any change. One nice thing about being in quarantine is that Broc hasn't had any hospital admits for viruses or flu. We are hoping that his IVIG will give his body the extra support it needs all around. IN the past the IVIG helped with his episodes, it made them easier to handle with not so many admits. It also helped with some of his lab numbers as well as helped manage his Tourettes Syndrome. 

  

This is one of those moments where you just have to capture it. Unfortunately it did make him ill and he paid for it dearly but he so enjoyed it. We have been loving the warmer weather. Broc not so much as its makes it difficult for him to breathe and control his temperature. The cooling towel does help a lot.

When it's just too hot outside there are always card games to play. Broc's favorite at the moment is Go Fish!

We also got some more caterpillars and watched them hatch into beautiful Painted Lady butterflies.

Unfortunately my buddy that was living in the pot plant did not make it but I think we gave it a few extra days in the garden. He eventually lost his whole wing on the one side and was unable to fly.

Broc was in some desperate need of some iron but his team was not comfortable sending him to the hospital for his infusion so they organised it as an in home infusion. It went very smoothly and we hope this will be something that we can continue to do at home. We do miss our nurses dearly but the less we expose Broc to the hospital the better. 

Broc did unfortunately have an ER visit for some severe pain that we couldn't control at home. His team felt that he needed to be evaluated. We discovered that Broc had an ilues with a viral infection along with a possible kidney stone. On further evaluation by his Riley urologist they are not sure that it was a stone that was seen so Broc will be going back to the hospital today for an abdominal, kidney and bladder ultrasound to rule out a stone or something else. He has still been in a fair amount of pain on and off. He is also having some pains in his lower rib area on the sides and towards his back. We are hoping to get some answers from all the imaging we are doing today. When we have an update on that I will be sure to post it as I know you all care about Broc as much as we do.

Now onto his legs. His poor legs. As many of you know his legs story started after his Open Heart Surgery in 2010. Since then Broc has had 2 vascular surgeries to give his right leg as much blood flow as it can to grow correctly. Unfortunately all those options have come to an end. His repair is looking great and his right leg has the same amount of blood flow as the left one does. When we went for his follow up last Monday his vascular team did all the tests they could to rule out any other options that could help his legs. Unfortunately his right leg suffered growth when it didn't have the correct blood flow. We were hoping that by doing the surgeries it would catch up. When we went for his appointment in December is leg length discrepancy was 1.2cm. When we measured him last week he has progressed to 1.7cm. He has grown 5mm in 6 months and continues to grow. Once the discrepancy reaches 2cm or more he will start having many back and hip problems. This Thursday we will be seeing an Orthopedic Surgeon at C.S.Mott for them to investigate and look at all the options we have. We have been told of 2 but hoping there maybe more. One is to cut the bones and lengthen the right leg with surgery and the other is to stunt the left leg by doing something to the growth plates. Either way neither of them sound like anything we would want for Broc to go through. We know we need to intervene. We, together with his team will make the best decision we can for Broc. This news has been very difficult for us as parents as we really thought his leg journey was over. Seeing Broc continually endure surgery after surgery no matter what part of his body it is is really difficult for us all. Especially the emotional toll it takes on everyone. The older Broc gets obviously he is more aware of the implications and the limitations he will have. Although we do not know what the treatment will be he has already started asking all the questions. Every year we hope that it will be a surgery free year but it doesn't seem that way.

Please keep us and his teams in your prayers as we try and make the best decisions we can for Broc. With him expected to be 6ft or taller we need to give him the best outcome possible.

We will continue to isolate and quarantine as long as we feel the need. Please respect our decisions.

Thank you for your continued love and support for our family.

🐸🐸🐸🐸    

A busy week

On Monday Broc and I spent 4 hours yes you read that right 4 hours at Dr Harris's office. we spoke about everything that Broc has been through since we saw him last which was the end of 2012. We also went through his diary and all the viruses and fevers that he has had too and the impact that these have on him. Not only does he deal with the fevers with these viruses but he also deals with gut shutdowns, crazy sensory issues which impact his schooling,his balance is also thrown off too which causes him to fall and bump into things.

Dr Harris decided to draw all his immune labs again and some others. We are hoping that one of these labs come back low so that insurance will finally help cover the treatment that we have been trying to get for him.It is really sad to hope that your child has a disease or something wrong in order to get the help you need. In 2011 we tried to get him a trial of treatment but ins denied coverage. One treatment alone will cost about $1000.00 that excludes all the monitoring that Broc will need during the treatment. He will have to be monitored in the hospital in case he were to have any reactions to the treatment. We don't know for sure that it will work, but if we don't try it we will never know.

He also has some other "out of the box" treatments in mind too. Some of the labs are not back yet so hopefully we should hear something next week.He also checked for Broc for any food allergies just to rule them out. It was not a very comfortable test but he did really well and tested neg for all of the food allergies.

On Wed Broc and I took a trip down to Riley. It was a very early morning. We left at 3.30 but that meant that we were home early enough to get Mark from school and he wouldn't have to ride the bus home. He really doesn't like it but will do it on days that I cannot get home early enough to get him. We had our lovely tech Nancy do Brocs echo. Mark and I will never forget her. She was the first person to take the time and explain everything on the monitor to us. She explained that if we see lots of colors like on a storm weather doppler then its bad. That was way back when Broc was only 8 weeks old and he was just dxed. That is a day that Mark and I will never forget. She was so happy to see Broc and how well he "looks". She did a fantastic job with his echo and got all the pics that she needed. She was also very interested in all that Broc has been through since we last saw her which was in 2010 when Broc has his OHS for his Aortic Valve repair.


Before her we went and had an EKG done too. Broc was able to pick out 2 prizes from the treasure box. He always picks one for his Buddy so he doesn't feel left out. I love the way they look out for each other. Then off to see Dr Hoyer. We caught him up to speed with everything that Broc has been through and dealt with. Also all the different surgeries and procedures that he has been through. We also discussed how we saw cardiology at Cincy and the not so great experience we had. He was great about that and said lets just forget you ever went there. Totally agree.

Onto Brocs heart. He feels that Dr Capannari is doing a great job of taking care of Brocs heart. He said that everything Dr C saw was what he saw on the echo. He did put Broc on a low dose heart med to help his heart along and prolong the time before his next OHS to replace his Aortic Valve. He said we could be looking at the next 3-4 years maybe a year or too longer if the meds help.
Initially we were hoping that Broc would be in his teens around 15-18yrs to have this surgery but its not looking that way.
We discussed all the different options that we have. Bovine,cadava,mechanical valves and also discussed the ROSS procedure as an option too. With all the rejection issues Broc has been dealing with from his bypass and now brain surgery this could be very tricky. It is imperative for us to find the source of the rejection and see if there is anything we can do to prevent it the next time. Rejecting a heart valve would not make for a very happy heart and a very sick little boy.
He also felt it best that since Broc is dealing with many other medical issues too he should see him too. So next year we will see Dr Capannari and then the following year we will see Dr Hoyer.
He did say the regurgitation is moderate to severe as well as some back flow over the aortic arch.

So now we have the rejection issue of his brain sorted for now as well as the cardiac clearance. I called CVC yesterday and they should be receiving all of Brocs heart info so that they can start scheduling his CTA.

For now he has had 2 weeks of low eos levels so we are thinking that we are done with this chapter for now. Broc has not been cleared for gym,recess etc yet. He will be cleared for school this afternoon. We have a very happy little boy who cannot wait to go back to school on Monday and one very happy Big brother who cannot wait to ride the bus with his brother again. Next week will be a short week for Broc as he will have school Monday and Tuesday and then Wed he has another app at Riley to see another immunologist.(Dr Boaz is hoping that he will be able to figure out the eos number issue.) Then Thurs and Fri are Fall Break. I think it will be a great way for him to start.

Thank you everyone for all your love and support
  

Brocs MOTT update and good news.

Yesterday Broc and I took a trip to Michigan to see Dr Eliason and his nurse Char. Broc loves them and so do we. They have been so kind and patient with us all. First we headed to ultra sound to see how his graft is doing.

As usual it really doesn't bother Broc unless he has something to watch on the ipad. It is very sensitive for him to have the ultra sound so we try and distract him as much as possible. The calmer he is the better pictures they can get. Great News!!! He has excellent flow through his graft and the velocities are great too.

Next step off to have ABI's. They measure the pressures in his legs and arms.

This took a little longer than usual as the tech only had 1 cuff that was child sized. Normally they would do the pressures at the same time. He did wonderful at laying so still.

More Great News!!! He has great pressures in his legs.

Then off to see Dr Eliason and Char. He was very surprised to find out all that has been going on with Broc. We talked again about the patch in his leg that he reacted to and we found out that it is a human umbilical vein graft that is wrapped in a nylon woven mesh. So the mesh that Broc reacted to was the nylon mesh. So its synthetic and not human as we thought. That brings us to the reaction that Broc is dealing with at the moment with the patch sewn into his dura (the membrane over his brain). Dr Eliason thinks that is would be wise for us to see if Broc has some sort of allergy to nylon or synthetic materials in case he would have to have something again in the future.

He never ordered a scanogram with this visit but with Brocs PTs concerns about his leg lengths and the fact that he is favoring his right leg still and looking a little lop sided he went ahead and ordered one anyway. We dont have the results of that yet as it was an add on. If Brocs leg length is starting to go the wrong way then we will be referred to ortho so that they can see why his bones are not growing like they should. The reason they did the surgery when they did was to give Broc the maximum benefit of having his leg length coming back. The last time we had his scanogram taken his legs were only 8mm different.

All in all it was a great visit with great news. If his leg bones or spine or hips are causing issues then we will have to visit ortho for that. We also only have to come back next year and not in 6 months time.

More good news is that Broc had labs today at the hospital and his eos level was down from 16 to 4. Normal is between 0-6 so 4 is a wonderful number. We have to keep checking his labs every 3 days to make sure that number stays in a good range.

Broc will be having a cardio check up next Monday to see how his heart is handling all these fevers and inflammation.

Thank you every one for your love and support.


   

Our yearly check-up at the ortho dr

Broc had his yearly check-up at the orthopedic surgeon today.Here we were thinking that he may need to have supports put in his shoes like his brother and mommy.But Broc being Broc threw us all a surprise when his x-rays popped up on the screen. I asked the dr shouldn't his leg bones all be the same length meaning that the top bones are the same length and same for the bottom ones.

Well he said yes normally.So Broc has a long bone on the right and a short bone on the left ( the top bone) and on the right a short bone and on the left a long bone (the bottom bones).

With them being like that his legs are evening themselves out when you look at them so no-one new what they looked like until they saw his x-ray.
Poor guy has been complaining of pain from his hips down and no-one can tell us why.Well there is our answer.Many of the drs thought it was related to when he had a fever but he also had pain when he didn't have any fevers.

So no more jumping off tables and chairs or beds for him.Walking long distances and running long distances can cause him pain too.

He went for leg length bone x-rays today.He was so good during everything.They also took an x-ray of his left hand to measure the growth plate.

He also had blood work done on his inflammation levels to make sure they are normal.

The dr will call us in a week or 2 and let us know how severe this is and what our long term outlook is.He said that we will have to come every 6 months for bone x-rays to check the growth of his bones.

Broc was diagnosed with Leg Length Discrepancy,really as if he needs another diagnosis to add to his name.

Our next adventure is on 12 Jan for a visit with the heart surgeon and pulmanologist.