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.
🐸🐸🐸🐸

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. 

🐸🐸🐸🐸

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.
🐸🐸🐸🐸

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.

In his CVICU room

Broc is resting well and looking really good for just having open heart surgery. Thank you for all the prayers and support throughout the day.

Last update

Last update
We spoke with the surgeon. They were able to give him an adult sized Aortic Valve. We are waiting to see him in about an hour.

Update 5

Update 5
He’s off bypass. The replacement went very well. They are starting to close him up.

Update 4

Update 4
He’s still on bypass and still working on getting the old valve out.

Update 3

Update 3
He is on bypass and unfortunately they are not able to repair his valve. So they have made the decision to replace it with a tissue valve. Now we are in for the long haul.

Update 2

Update 2.
His chest is open and they are going to attempt to repair his Aortic Valve again.

Heart surgery Update 1.

Update 1.
Broc went off to sleep well.  He has plenty of IV access. The plan for today has many highways. We are settling in for a long day.

Heart surgery and travel expenses

You have 7 days left to if you would like to buy a Buddies t-shirt or hoodie.
https://www.customink.com/fundraising/brocsbuddies5

We unfortunately still do not have a date yet. As soon as we get one we will let you all know. 

We appreciate all the love and support from everyone.

Heart surgery has been postponed

I'm sure by now many of you friends have heard that Brocs heart surgery was postponed. Many are wondering why?
When Broc was dx with his connective tissue disease he was not old enough to get a formal dx. He was 6 at the time and you have to be 9-10 yrs old. We have always known that he had this and just told his various team members that this is what he has and this is how we should proceed. He was dx with Ehlers-Danlos Type 3 also known as Hypermobility Type. Unfortunately there is no genetic testing for this type of Ehlers-Danlos. It is all done by a clinical exam and medical history and family history. His geneticist feels that he possibly has something else that is not yet discovered in regards to his connective tissue disease as he has some traits of the other EDS types too but doesn't quite fit in those boxes either so he has always called it Connective Tissue Disease Non Specific.Unfortunately it has never been formally written in his chart or history so we found out on Wednesday afternoon during Brocs pre-op testing.

Thankfully the thoracic surgeon came to see us Wednesday just to "pop" in and say hi. We would have only seen him on Thursday the day of surgery. We found out that if you have Connective Tissue Disease you are not a candidate for the Ross Procedure as it is. It will have to be modified for that person or something totally different would have to be planned. For that to happen the surgeon would need to go back to his drawing board and make a new plan. Especially when you are dealing with someone as complicated as Broc.

The Ross Procedure alone is a complicated procedure. Some say its almost as complicated as a heart transplant. On a typical person it would be a HUGE surgery. On our Buddy with a host of other complications added its an even BIGGER DEAL!!

Needless to say we were bummed , but also very thankful that the only person the surgeon was thinking of was Broc. He really has his best interest at heart and wants only the best for him. We ALL do. This week or next his surgeon will again gather his team and some of Brocs other team members to come up with a SAFE plan for Broc. As soon as we get the new date we will let everyone know.

To read about the Ross Procedure please look on the Pages section on his Blog and click on Ross Procedure. There you will find an explanation of the surgery and what that entails.

Instead of packing up the next day which would have been surgery day, Mark and I surprised the boys by taking them to the Indy Motor Speedway Museum. What an amazing place to visit.

 

It was a wonderful day that the boys are still talking about. I never knew the track was so big,nor the stadium.

For now we pray that Buddy doesn't get sick while we are waiting for the date. He is still very tired some days and takes naps during the day.

Thank you everyone for your love,support and prayers. 🐸🐸🐸🐸