One month post Heart surgery

Wow so much has happened in a month. Broc saw his vascular team in Ann Arbor,MI. It was an early morning for us but we made it safely.

We had to take our mandatory pic in front of Big Bird.

Dr Eliason was very happy to hear that everything went well with Brocs Heart Surgery. Unfortunately Brocs leg length discrepancy has moved a little. Last year his legs were only 1mm apart and we were ecstatic but unfortunately they are now 3mm apart. I know many think that 3mm apart is no big deal. It's still within the margin that's allowed. Once it moves to 5mm then we have to start talking again. We are really hoping that Broc will never need anymore interventions done on his leg. Every year we go into this appointment waiting to hear those numbers. So we breathe and wait till next October till we get the next set of numbers. Broc should have moved to every 2 years but because his numbers never stayed the same and we all know how fast Brocs body likes to change we will see his Vascular team next year.

Mark and I did a little homeschool field trip when we had 80F degree weather. It was such a great day catching fish with him. Just enjoying his company and excitement everytime he caught a fish. He caught 3 in total and released them all. We also saw a baby snake.

We had very exciting news this month. Brocs wonderful story was aired on our local channel. You can watch it here if you missed it.

https://abc57.com/news/real-michiana-giving-back-while-beating-the-odds

The story behind why I was so emotional was because the day it was aired Broc fell very ill and I knew all through the interview and the filming that we may end up in the ER later that night. Broc went down hill very fast and he did end up being transferred to Riley Childrens Hospital later that evening. Unfortunately Mark and I had our 15th Wedding Anniversary weekend planned with all the necessary nursing for Broc organized. Maybe next year we will try again.

Here are some behind the scenes pics.

Now onto Brocs Cardiology follow up. Dr Hoyer was so happy with his new heart function. Broc has no significant leakage with his Aortic Valve anymore. Everyone has a little leakage on some of theirs valves but nothing that would cause any concern and Broc is now in the category. He is still pale looking but did get an iron infusion which we are hoping will help his body. Brocs heart is doing so well that we only have to go back in a year and NOT 6 months. He may need a couple bigger doses to get his iron tank filled up. He still has another 3 weeks of restrictions. We have to be really careful during the Winter/flu season. Please if anyone is sick please stay away or if you have been exposed to anyone please do not come visit. Even a simple cold can put Broc in the hospital. We do try and take as many precautions as we can when we are out if we have to be.

We always have to fit in a little fun time at the Child Life Zone at Riley.

Thank you for always supporting and loving our family.

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Post Op Day 11 - Home - ER visit and recovery

Things have been really crazy since I last posted. Yes we are home. I will try and catch up the blog with all the pics that were missed. I really appreciate that there are many that still follow Brocs blog.
 Once we had Brocs eyes checked for no yeast balls it was decided that he could get a PICC line so that he could continue to get his much needed TPN.

Going down to surgery is really not that big of a deal for Broc anymore as long as he has his frogs, taggie and tablet with him.

Once he got back from IR he slept most of that afternoon. That evening we decided to give him a good hair wash. Not his most favorite thing in the world to do.

Thank you to all the people that send him get well cards through the Riley website. It really was so cool to see where all the love was coming from. We had some from Australia, Japan, UK, South Africa and many other places.

The Thursday we then had another echo done on his heart as he was still spiking fevers and not a very happy boy.

Once again we got great news that his heart is doing well and has no yeast growing on it.

Friday they decided to move Broc out of CVICU as from a cardiac standpoint he was doing well.

Happy to be moving to the Step Down Heart floor. There things will be much quieter and we could get better sleep.

Infectious Disease was consulted again as Broc was continuing to have fevers and increased blood counts. Our plan was still to go home on the Saturday but if the fevers continued to spike high then we would have to figure out another plan.

Thankfully his fevers held steady so we were able to leave on Saturday.

Thank you to the special friends that came to say goodbye to us. We really appreciated the company.

Since we have been home Broc has continued to have fevers daily, increased heart rate and been very pale. We did have an ER visit last week as some of Brocs lab results came back very high.We drew blood cultures again to make sure we are not missing any infections lurking in his body. Cultures have all been negative which has been great news but also frustrating for us.

 

His team have come to the conclusion that all his fevers,increased heart rate, the way he looks and his high blood counts are all part of his bodies healing and inflammation process. Some numbers are coming down to his normal and some are still way up there. To say this has been stressful for me would be an understatement. This has taken a huge toll on me emotionally and physically. My body is exhausted!! Seeing his counts coming down has been a relief. He is still napping daily and tiring easily. He has neck pain on and off and is still very pale. We are still keeping him away from crowds until the end of the month.

He will be seeing his vascular team next week in Michigan to see how his legs and graft are doing. The following week we will have another echo and EKG on his heart and see his cardiologist.
The week after that he will hopefully be getting his PICC line removed from his arm and get a new tunneled broviac in his chest again. They are so much easier to care for and Broc is much more at ease with that dressing change vs a PICC line dressing change. The broviac is stitched into his body and the PICC line is not so we have to be extra careful when changing his dressing.

I am dealing with my own health issues once again which takes a further toll on my body and makes it a little more challenging to take care of Broc and the family like I would like to. Ehlers-Danlos is not a fun disease and is really breaking down my body fast. I may be looking at more surgery in the near future.

Thank you to everyone that supported our fundraiser. Your t-shirts or hoodies should be arriving in the mail soon.

Brocs heart journey sure has been a rough one. We know that in the future down the road he will be looking at another Aortic Valve replacement. Thankfully they were able to put in a 23mm (adult) sized valve in for him so we are hoping that he will get between 10-15 years with this new valve.

Thank you for all the continued love,prayers and support from everyone.
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Post op Day 7

The last 2 days have been horrible for our Buddy. His temps have been really high and left him feeling horrible. Most of his usual blood draw veins have been used for IVs or are very near to his IVs, so sticking him for blood cultures all the time is proving to be very difficult. He has endured a lot over the last 7 days. He is supposed to be walking the halls a couple times a day but what ever other infection besides the fungal infection he’s fighting is zapping all his energy. He’s legs, ankles and knees hurt so much when he walks. Thankfully his lungs are finally on the mend.

Now the fevers. He started spiking fevers the day after surgery that’s when he tested positive for the fungal blood infection. A day or 2 after the first 48 hour rule out it vancomycin and cefapime he started to feel better. Once the antibiotics were stopped he started the fevers again. They decided on blood cultures and another 48 hour rule out of vancomycin and cefapime. He was feeling better with negative cultures again so the antibiotics were stopped. He then starts spiking fevers again but higher and making him feel down right awful. Infectious Disese came by to see him yesterday and decided that they would just watch his fevers. In the hopes that they would go away. He woke up this morning with a fever. Every 4 hours his fever spiked a whole degree. Poor buddy had a fever the whole day. The CVICU Drs feel that Broc is fighting another infection which is taking a break when Broc is on antibiotics. So again tonight they drew blood cultures and started vancomycin and cefapime again. After a couple hours his fevers started to lower. I really hope the antibiotics help him so that his body can focus on healing and getting stronger and not fighting infections.

Depending on what happens with these fevers and what his labs look like he may have to be on several antibiotics and anti fungals. We may not be able to do both at home so this may keep us longer in the hospital. We are trying to have patience as his team figure out the best possible treatment plan for him. Being in the hospital is no fun for anyone but we cannot take him home until we have these under control. Everytime we think we have them under control they just come back with a vengeance.

Thank you for all your love, prayers and support.
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Post op Day 5

Today was a healing day, you heal when you sleep right? Broc has a good night last night. He slept through all night except for getting up to pee because of all the lasix he’s getting. They have decreased the dose but any amount of lasix makes you loose water.

We moved him into the chair for the day so he could sit up and expand his lungs more. Unfortunately as soon as we moved him he got comfy and went to sleep. He slept for 3-4 hours.

He schooled for a while today and practiced some reading too. He really loves studying Engineering.

Ophthalmology came by to look into the back of his eyes to make sure he doesn’t have any infection lurking there. He was very scared when the drops went on to numb his eyes. He is seriously not a fan of having his eyes dilated. He did so well. 

Genetics came over to discuss some results with me. We are still waiting for some more results to come in then we may have a sort of diagnosis for our Buddy. Dr Graham will be contacting NIH to see if they can shed any light on these new results. He is extremely rare and continues to stump science. 

Once she left we had a visit from the Social worker. She was very informative and very helpful in showing me some resources we can use. She is also going to organize a care conference for Bric before we go home. 

Tomorrow Broc will be getting a picc line so that we can start TPN again. We have to wait about a month to make sure the fungal infection has cleared his body before we think about putting in a more permanent line again. 

We are still dealing with daily fevers. His lungs are still not super happy but getting better every day. We are letting him rest when he needs to. 

Thanks for all the prayers, love and support. 

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Post op Day 4

Broc is finally sitting up in the chair more and today he walked. We are so proud of our Buddy. He really is fighting hard.  Fighting for the correct care for our Buddy is so important. It’s tiring and stressful but so worth it. He is so conplex and requires many team members.

Mark and I took him for his first walk. He did so well. Dr V was so happy to see him walking. Our Buddy is so complicated that everyone is just moving slowly with any plans. He continues to spike fevers so blood cultures were drawn again yesterday and antibiotics started again. He is still on the fluconazole for the fungal infection. He is finally off the O2 and his lungs are getting better too. Lots of things have to happen before we can think of going home.

Mark left today to go back home so he can go back to work. Lil Mark is still not feeling great. He is on antibiotics and breathing treatments.

Thank you for all your prayers, love and support.
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Post op Day 2

Our Buddy was doing so well after his surgery.  Everyone in the ICU couldn't believe how well he was doing. His counts were great. He was breathing on room air needing no support.
We were planning on leaving ICU in a day or so then possibly moving to the heart floor for another day or so then heading home when everyone was happy with his progress.

Unfortunately our Buddy started spiking fevers Thursday morning with rigors. It was apparent that he was getting very sick. Blood cultures were ordered and 2 antibiotics were started. Later that afternoon it was clear that he was getting worse. His breathing was increased. They ordered a rapid fungal test. At 3am this morning they came in to tell us that he tested positive for a fungal blood infection, so they started anti fungals. The also put him on oxygen as his sats started to drop and he has lots of fluid in his lungs.

We had him up earlier this morning sitting in a chair to help move some fluid from his lungs. He's also on lasix to help get some fluid off too.

Infectious Disease decided that it was time to pull his central line so that was done in his room. His room was turned into an OR this afternoon. He did really well during the procedure. They did an echo to check if he had any vegetation growing on his new Aortic Valve. Thankfully he DOES NOT. We were super happy to hear that. He also had a kidney ultrasound to check for yeast too. We don't have those results yet. His counts are dropping too so everyone is watching those closely.

Face timing with his Buddy is always the best even if he's sleeping.

Thank you for all the love,prayers and support from all our friends from around the world. Please understand that we will update when we can. If things are crazy we will only update when we have a moment. I also have a very sick Buddy at home too. My moma heart is very torn.