Wow where to begin. I'm not sure we will be able to take pics like this as our Assemblies will be back to in person next year. We do not take one moment for granted where we can be together as a family. Broc and I have been attending meetings on zoom so as to keep him safe.
Update wise on everything Broc.
Urology testing went great. We got good results which was a great sigh of relief. His bladder is a little slower at working than the typical bladder but that's okay. We can work with that. Sometimes it's better not to give meds if we can help it so we decided having a slower bladder was better than the side effects for his body.
Hematology & Immunology are still following his labs closely. For now they are much lower but because they are staying stable but low we are just continuing to watch and monitor. Seeing these numbers constantly low is a worry but once again we are learning a new normal for Broc.
Cardiology day was a great day too. Brocs heart is stable for now. We love stable. Its still not great but we are hoping that his new valve will last him at least 5 years or more. Lots of things were discussed like hydration, quality of life, nutrition and his hypertension. Broc has started loosing weight since about June when he had his pneumo-peritenium which the source was never found. Everyone is really hoping things will even out soon. Dr H said that as of now nothing is putting extra stress on the heart but adding a little bit of IV fluids to help his dysautonomia and over all wellbeing will be beneficial for him. Even though he is loosing weight he continues to grow like a weed.
These 2 special people have been in our lives since Broc was 8 weeks old. They were the first 2 people that we met when we started Brocs heart journey. Miss Nancy was so kind. I remember Broc being so little laying on the bed and we had no clue what an echo was or how to look at it. She was so kind and patient with Mark and I explaining everything. Then we went on to meet Dr H. Having the same name as your husband was a plus. Actually both Dr H and Dr R which are Brocs heart Drs have the same name as my husband. Miss Nancy is the Aunt you go visit that gives you candy except Broc cannot eat anything so he just gets lots of hugs. For now we continue to monitor his heart once a year.
Vascular was was a good appointment. His graft is still wide open and his ABIs were still within normal limits. Orthopedic on the other hand was not such a great appointment. Broc has the beginnings of scoliosis and that will be watched closely. We also found out that his right leg (the shorter leg) is now the longer leg by 1cm so his hardware that was in his left knee needed to come out which it did this past Monday. Everything went smoothly and they were able to remove all the hardware from his knee. He is recovering well and his pain is slowly being controlled. We are hoping that the left leg will now catch up and he will continue growing at he same length which each leg. Broc is almost 5.11".
These are pics from surgery day.
Then walking around at home.
Now onto GI, ENT and Pulmonary. ENT was easy. His ears looked great as did his laryngeal cleft so we left those alone. This will be the first time that Broc has not had ear tubes put in. He was very happy about that as he hates having the drops put in his ears all the time. We are happy that his laryngeal cleft was still in tact as we hope to never have to revisit that surgery ever again.2016 was scary nightmare! His Drs will absolutely agree on that one. Pulmonary, there is not much more we can do for his lungs as his mitochondrial disease continues to weaken his muscles so he continues to wear his bipap at night to help expand his lungs while he's sleeping as well as using his breathing treatments and vest therapy during the day. This is the maintenance we do to keep Brocs lungs at an optimal place.
GI on the other hand is a different story. He continues to loose weight and no one can figure out why. Despite the continued increase in his TPN calories. But he also continues to grow like a weed which makes putting weight on him all that more of a concern. We have purchased a bath cushion for him to help during bath times as his bones get very sore while sitting in the bath.
He has also been struggling with his gallbladder for a while now. The sepsis in late July and increase in right side, shoulder and back pain led us to include a procedure called an ERCP during his triple scope in October. During that procedure they use a scope with an ultrasound probe on the end, so essentially you are getting an ultrasound but looking from inside the body. That procedure revealed that his poor gallbladder is so sick with sludge and stones. So it was decided that he will have his gallbladder out on Dec 8, which will be 2 weeks from now. We are hoping that by removing his gallbladder we can get a better handle on his constant pain and nausea. Life has been pretty miserable for Broc. We are trying our best to focus on quality of life for him and keep him as comfortable as possible. We have moved as many of his meds as we can to IV from to give less in his intestines. We have been told that the surgery will either help tremendously, or just a little, or nothing at all. But we wont know until we take his gallbladder out, so out it will come. During that procedure they were also able to look at his pancreas. Thankfully that has not been effected by how sick his gallbladder is so that is a huge plus.
When we go we always stay at the Ronald McDonald House in Cincinnati. Broc loves the toy room where kids get to choose a gift for themselves and their sibling. His favorite, Legos of course. He is so sweet he will always choose something for Mark too.
Now onto the news that might be new to some or some may already know. Daddy Mark started loosing his hearing a little after he had Covid in January. He did have very bad tinnitus at the time too which was getting worse but only in the right ear. We all figured it was a Covid thing and it would just be there or get better. We made an appointment with an ENT and he sent him for a hearing test. It was found that he had some hearing loss in his right ear but it was more significant than the left so his ENT felt that an MRI was warranted. As the medical family we are, I started researching and I always came back to one answer - a tumor. We were really hoping not but it was always in the back of our minds. Unfortunately the MRI revealed he did in fact have a tumor. Its called a Schwannoma. It is sitting on his vestibular and cochlear nerve. The following day we were sent down to Indianapolis to see a ENT Neurosurgeon. There he looked at the MRI and explained all our options. It was decided because it was only 9mm and not touching anything significant and because he had already lost his hearing in the right ear we would watch and wait and return in 6 months for a follow up MRI. Had we done the MRI before he lost all his hearing then he may have been able to have a surgery to remove the tumor and hold onto what hearing he had. He only has 16% hearing when it comes to words. So if you speak to him its best to stand on the left side or just talk really loud so can hear you. As you can imagine this has changed so many dynamics in the family. This particular tumor is slow growing and is only supposed to grown 1-2mm a year so we figured we had time.
Fast forward to 2 weeks ago and his MRI revealed that his tumor apparently liked to follow our families pathway and grow another 3mm in 6 months. This is of course a rare thing to happen, but if you know our family we are all about RARE! So Mark will be having his brain surgery on Dec 29 to remove his tumor before it gets any closer to his brain. We pray that it does not grow anymore before then. If it does, it makes the surgery even more complicated as its very close to his brain but not touching it as of yet. That will require them moving his brain or lifting it out of the way to remove the tumor.
Surgery will be between 7-8 hours long. His recovery will be a month long or longer depending on how he does.
Needless to say the last couple months have and will be very trying for our family. Watching your sons health decline and knowing you can do nothing about it is very scary and sad. He has a wonderful pain dr, Dr T who is taking such great care of him and giving him all the support he needs to be comfortable. We did have a Palliative Care Dr for a month or so until he left but we are in the process of finding another one for Broc. If we cannot find one then Dr T will be managing it all with the help of all his Drs combined.
We thank you all for your continued love and support thru everything. Our goal is to keep everyone as healthy as possible as we know illness only delays these upcoming surgeries and we cannot afford for that to happen.
🐸🐸🐸🐸
