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.

🐸🐸🐸🐸    

Marks Neuro app and an update.

Yesterday Mark and I went to Indy for his neuro app. I love Dr T. She is so easy to talk to and was even willing to give me some advice on Brocs recent issues. I love a Dr that is willing to help a mom even though that child is not her patient.

Dr T was very impressed with Marks progress that he has made. His neurological exam was very much improved. She said the first time we saw her she was very concerned about Marks neurology exam but didn't want to alarm me. I kind of find that funny cause seriously nothing could alarm me anymore.

We think we have finally found a good dosage for Marks migraines to stay stable. He is still having them but not nearly as often. It definitely is sunlight and exercise induced so she thinks when he is back out in the bright sun and riding his bike or playing hard on the playground they may return more often. If that happens she says we have a lot of room to go up on his meds. So for now we will stay at a maintenance dose for him.

I myself had a terrible migraine yesterday so driving back and forth to Indy was quite an experience. Thank goodness the glare wasn't too bright on the road and the weather was fine for driving.We made it home safely and layed down. It was really nice that daddy came home early so I was able to rest a little at least.

Mine is definitely brought on by stress. Yesterday I was trying to handle a bunch more things with Broc medically and Marks app. Sometimes my body just says its had enough and forces me to slow down.

I'm trying to conserve all my energy for the next few months coming up.Soon I will start filling up the freezer with meals for Mark. Lil Mark is not much of an eater so he is really easy to feed.

Brocs G.I. surgery will be Dec 4. His vascular surgery will be Jan 8. We got the phone call yesterday.This surgery cannot come soon enough as his pain is getting more and more frequent, which means he is getting less and less blood flow to the bottom half of his leg. So we are on the watch for any color changes or temperature changes in his right leg. As soon as everything is scheduled we will get the call about all the pre-op plans. Before both of Brocs surgeries he will be pre-med with prednisone. He will also have IV prednisone in the hospital and then a small dose after surgery while he is recovering. The benefit of this is to reduce the immune response his body will have to the whole surgical process it will go through. His immunologist feels this is what is happening to his body. Instead of us dealing with high temps and high eos levels again after surgery we are hoping that they will remain stable throughout. Unfortunately that may not be the case and he may still have some reactions but we are hoping to lessen the reaction. His body really takes a beating when it deals with these responses which effects his heart too.

About the choking episodes that Broc has been having too. After speaking to Dr T yesterday she feels that his laryngeal cleft needs to be fixed as it can be complicating matters too. Unfortunately we cannot get it scheduled during his Nissen surgery as the ENT is booked until Feb. We also cannot do it at the same time as his vascular surgery as there is a big risk of bleeding. Which means once Broc is completely healed from his vascular he may be looking at another surgery. The other issue is and we will discuss this with Dr Boaz next week when we see him is that it could be a central issue and is a result of him having chiari and his brain being squashed. So it may never get better. If its a central issue and just needs time or it may be there for life, then we may decide not to do the surgery. BUT that will wait till next year. He has not lost consciousness yet or passed out and is able to come out of an episode on his own so we are hoping that it will get better and not worse.

After typing all this I can understand why I had a migraine yesterday. Its not completely gone today but much better.

Broc has his first treatment on Monday so he will be in the hospital so they can monitor him closely. If anyone has any questions about his treatment please feel free to email me. sambuka18@yahoo.com

Thank you to all of you for all your love,prayers and support. We really appreciate everything that anyone is able to do to help us.

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
  

We have our date....

The last time I posted I said that Broc was having a CT Scan done of his legs.We found out that his legs did not grow anymore which is great news as that means that he is stable.On the other hand our poor guy has been having a lot of pain especially on days that he has gym class in pre-school and even when him and Mark are running around too much.
His vascualr issues are really starting to effect his quality of life.He is also rolling his left ankle really badly and toe walking on his right foot.
We have also made some visits to the chiropracter as his back keeps going out of alignment and is causing him lower back pain.Who would have thought that a 4 yr old would complain of lower back pain.
With all those factors in play his Drs have decided that his Ilio-femoral Bypass Surgery will be on June 14th. He will be admitted on teh 13th to start all the preparations. He will be seeing the ped. surgeon on the 12th to look at his hernia that he has too.She will be fixing that too while he is under for the bypass surgery.
We asked too if they could remove his tonsils(that have regrown) while he is under too but they declined and said it was too risky.

We all decided that June would be a good month as it would give him time to finish pre-school and plenty of time to heal before he starts Kindergarten.

We will be seeing the Immuno Dr today again as Broc has been ill since I last posted with either strep or some virus.We are on a serious mission to get Broc healthy so that his body will be in the best shape to handle his surgery.

We have also brought his cardiac appt forward a month to make sure that his heart is doing well before surgery.
We are hoping to post some pictures of fun in the snow soon.Our weather has been truly wonderful but not for long.

Thank you everyone for your support and love.

Ilio-femoral Bypass Surgery

As I said in my last post that I was going to show you a picture of what they will be doing during surgery.I have the picture that Dr E drew for us.I have also taken some info from the internet and I will add my own from what Dr E told us.

We know that he will have general anesthesia.They will make an incision in the middle of the abdomen to reach the iliac artery.He did say that it will start just below his bellybutton and down to his pelvic area.In this incision they are also hoping to fix the hernia that is just above his bellybutton which he developed from his open heart surgery last year.

Dr E will then make an incision over the blocked area of the artery. That will be the second incision.It will be from his hip to the middle of his thigh.It might be lower than that and go to his knee.He will then move skin, muscle, and other tissue out of the way.

He will place clamps on the artery at each end of the blocked section. He will then use a graft to bypass the blocked part of your artery. At the moment there are many collateral's that are moving blood to the lower half of his leg. The graft will be a vein taken from the lower part of his right leg.They did the vein mapping and found that there are not any viable veins on the left which is nice in a way cause then only one leg will have incisions on it. We are not sure when that incision will be made.It may be the first one as they have to prepare the vein for bypass.

All of these procedures will be done on the same day.
After the graft is sewn in place, he will make sure the blood flow to your lower leg is good. Then he will close the incisions. He will do an x-ray called an arteriogram to make sure that the graft is working properly.

Below is the picture that Dr.E drew for us. The squiggly lines on either side of the vein graft are the collateral's.
I hope you all have a better understanding of what his surgery will entail.He said that he will be in ICU for 2-3 days and then the rest of his stay will be on the peds floor.Because of all the issues Broc has with being very susceptible to viruses and bacterias he will be in isolation for the entire stay at the hospital.He said without any complications he will be there for a week and then total recovery time will be about 3 months.

If you have any questions please feel free to ask me.Closer to the time we may have some more detailed info and we will share it with you.