Vascular update and a few others

Unfortunately Broc ended being admitted the last week of November with a fever and extremely low blood counts. We are really hoping this is not going to be our new normal since stopping the IVIG therapy. As I mentioned in my last post, we cannot restart the therapy as there is still a Nationwide shortage and his numbers are not low enough for him to qualify for therapy again.

We will be seeing his Immunologist next week to see what our next plan of action will be. He has been having fevers which he is waking up with and they get higher throughout the day. Some days they leave him so drained, he sleeps for hours and cause lots of pain and other days he has the energy but his Tourettes Syndrome makes it really difficult for him to get around safely and his balance is really effected.

Lil Mark played in a recital at a retirement home with his friends. He played really well and we are so proud of how well he is doing. Music has been really become a great out let for him.

Last week Broc had an MRA/MRV of his abdomen to see if he has any arteries that could be effecting his GI system. We don't have the results from them yet but from what I can see it all looks normal.

This week the boys and I took a trip to Michigan to see his Vascular team. Broc had all his usual testing done as well as an ultrasound on his graft.

Brocs mandatory picture in front of Big Bird.

Getting comfy for the testing.

Ultrasound on his graft.

ABI and TBI testing.

Big brother being such a great help for me.

Dr Elisaon was very happy with all Brocs tests results. Unfortunately Brocs leg length discrepancy has progressed from 6mm to 8mm. The final read of the x-rays were 1.2cm for the discrepancy but that is measuring from the hip bone till the ankle bones. Dr Eliason is only concerned about the long bones so we will stick with the measurement of 8mm. Once that measurement reaches 1cm then we will have to intervene surgically. For some reason Brocs calcaneus are different lengths and that is what is causing the 1.2cm discrepancy. You can see the difference in this picture I took while he was lying on the table. For now to help him we will put a lift in his shoe to help him be more balanced and to help with all the pain he is having. We will go back in 6 months and have all the same testing done again.

His right foot is smaller and shorter than his left.

Now that we know Broc doesn't need vascular surgery I am scheduled to have my foot surgery on Dec 20. I know its a risk having my surgery but its also a risk not to have it. The recovery will be rough. Everything I do for myself or to myself is to make myself better so that I can take care of Broc and our family. There is no-one else other than myself and Mark that know how to fully take care of Broc. Hence the need for me to be here as long as I can and in the best shape I can be. We don't have nursing care anymore to help out so it all falls on us as parents and Lil Mark. He is understandably scared of accessing Brocs central line so that is left up to Mark and I but Lil Mark is learning everything else. 

We appreciate all the love and prayers and help if you can during the next couple months. 

🐸🐸🐸🐸

Playing catch up!!

Days are just flying by and before you know it its another day with more things to do. I really regret not writing a post sooner but I will try my best to remember everything.

Once we got out the hospital we had to wait 2 weeks to have the Hida Scan done to make sure his body was well recovered. Well if you know Broc he doesn't work that way. He has been thrown with virus after virus and not had a break since June. Some viruses are little and we can handle them at home and others need intervention whether it be an ER visit to evaluate him or a hospital admit. In the mean time we topped him up with an iron infusion to help him recover.

G.I.:
The Hida Scan went very well. He became a little impatient towards the end as we had to wait longer because the radioactive medication couldn't find his gall bladder. We thought we were going to have to wait an extra 3 hours but as soon as the tech came in to tell us the bad news his gall bladder woke up.

Once he was in the scanner for an hour we then moved him to his chair so that he could sit up and watch his tablet. Another medication that mimicked a fatty meal was then infused for an hour. He then had to lay on the table again for 30 mins after that. It was a long test for him but he did very well. The good news was that his gall bladder functions superbly and it doesn't need to come out.

We saw many sunrises and sunsets that week as we made 3 trips to Riley. Our blessing with having early morning appointments that lasted almost an entire day.

 Urology:

The next lot of testing we drove down to Indy for was for Urology testing. On a CT scan a while back it was found that Broc was holding urine in his kidneys and they were a little swollen. Broc was also having some discomfort and a few issues that had returned since his tethered cord surgery in 2016. We first had to stop at the Infusion center for an antibiotic infusion to protect his new heart valve.

Then we were off to the radiology unit to have an ultrasound which was super quick and then the big dreaded test. That's the one that everyone prayed so hard that he would handle so smoothly. And that he did. He handled it like a champ. He was allowed to yell when they inserted the catheters but other than that he did well. After that we went to the Drs rooms to see Dr W. We discussed how things had been going since we saw him last. He went over the results with us and the great news is that Broc does not have permanent damage from his spinal cord. He does have some damage but we are hoping that with a certain type of therapy which will help him relearn new muscles and a medication to help his bladder hold more we should be able to get a handle on things. We did find out that his bladder only holds half the amount its supposed to hold. Unfortunately he failed the first med they gave him so we are onto the second one. We don't have a third option because of heart complications. So hoping his body will accept this new medication.

Neuro-surgery:

Dr W did want us to see Neuro surgery to see if possibly his spinal cord was tethered again. Thankfully N.S. ruled that out but said that it would take time for his muscles to relearn how to work. We are hoping to start biofeedback therapy for that soon. N.S. did refer Broc to rheumatology to see if they had anymore ideas for his weak muscles and to look at his hypermobility. She is also hoping that they can shed some light on his immune system too as a lot of his specialists are thinking that he has something Auto-Immune going on but they just haven't found it yet. 

Pain Clinic:

What an amazing team. They were so thoughtful and caring at the same time. They all had the same goal we have for Broc, Quality of Life. We discussed how he is feeling and handling everything. We also discussed how its effected our family and our relationship with each other. They were very happy to hear that both the boys are in Cognitive Behavioral Therapy. Miss E does an amazing job with explaining things to the boys and helping them find the coping mechanisms that they need to help them get through tough situations as well as every day life things.

We discussed increasing his nerve pain medication in the morning and adding a little dose during the afternoon. Since we have done this he is sleeping so much more soundly at night. No more waking up during the night. We never knew that pain was waking him up at night or keeping him awake during the night. Broc has a really high pain threshold so only asks for pain meds when his pain number is a 7-8. They feel that his pain was really keeping him from getting good sleep at night. I think they were right because he is not napping so much during the day unless he is not feeling well.

We are also working on his endurance and strength building. We play WII games for now as its cold outside but once the weather warms up we will be outside playing on the court again. He has been riding his scooter downstairs in the basement with Mark but that causes him pain in his legs so it doesn't last for long. 

Pain clinic also referred us to PM&R to look at getting a wheelchair for Broc that he can use himself as well as us pushing him when he gets tired. It will be one that will be fitted correctly for him and give him all the support he needs.We will be seeing that clinic next year as we need to find out what is happening with Brocs legs. We see his Vascular team next month to see how far apart his legs are and if he needs another artery connected. 

Pain team also wanted to rule out something called Mesenteric Ischemia for Broc so he will be having a sedated MRA of his abdomen next month.  

ER Visits:

Unfortunately Broc has been sick for a very long time. At the beginning of the month he had a very sore throat with diarrhea. We took him to the Peds office and they said it was a virus. The next morning he started dry heaving and having belly pain at a 9 on the pain scale. We figured maybe an ileus or bowel obstruction so off to the ER we went. Thankfully his C Diff came back negative and an xray cleared him for an ileus and B/O. He did unfortunately test positive for Strep throat. We were happy to be able to come home instead of being admitted. 

A week later he was still not improving at all so we called his team and they wanted him evaluated again to make sure he wasn't too dehydrated or had another ileus or B/O. Once again everything was ruled out and again another gastric virus. His counts were very low both times that is why we have been hibernating most of the time. We have been increasing his hydration to help with all the diarrhea. We did get a phone call tonight from Kroger to say that soup/broth we bought from them has been recalled due to listeria contamination so its very possible that our Buddy has been suffering from that all this time. I'm happy to say that he is feeling much better today.

Immunology:

We saw a new Dr this week. He was so compassionate and loving the way he spoke to us. He is really invested in helping us figure out what is causing Broc to be ill all the time. He does agree that it wont be easy to diagnose. One thing he agreed on is there is a WHAT and a WHY! I asked him if he was an 'Out of the Box' Dr and he said yes. We all know that you have to think 'Out of the Box' when you are dealing with Broc. He is very intrigued with Brocs medical history and definitely thinks that he has an Auto-Immune something going on. We drew a Cytokine panel and that all came back fine so we keep looking. We don't necessarily have to have a cure. Of course that would be amazing. We will just be happy with calming down the amount of viruses he gets and the severity of them. He said that he has a couple patients similar to Broc but non of them have the amount of body systems effected like Broc does,nor do they have all the diagnosees that Broc has. Dr J is very thorough and determined and wont stop looking till we find an answer so we are in for the long haul. We see him next month to discuss labs and our plan going forward.

As a surprise we bought tickets for Broc to see Wild Kratts Live. Its his favorite show. He loved every minute of it.

Next month will be a busy one, we see Neurology clinic , Immunology and Vascular team. I'm also scheduled for foot surgery only if Broc doesn't need vascular surgery. Ehlers- Danlos is not a very nice disease. The older you get the more you need your ligaments repaired or reconstructed with cadaver ones. I'm also having a venous CT of my abdomen and pelvis as my vascular Dr saw something on ultrasound that he is concerned about. 

Daddy Mark is working hard and taking great care of us all.

Lil Mark is doing so well with is guitar. He is also helping with the microphones at our congregation meetings. We are so proud of the young man he is becoming.

Thank you for all your loving continued support and prayers. We really appreciate them.

Unexpected hospital stay

We had a bunch of important tests scheduled for Broc on Friday and Monday but his body had other ideas. Wednesday night after the meeting he became very ill and started vomiting. He also had really bad belly pain at a 8-10 on the pain scale. We gave Broc all the meds we could to make him comfortable and he settled down. Then it started all over again. We got him cleaned up and started packing the rest of my bags as I had already planned to stay in a hotel so some of the bags were packed.

Unfortunately he woke up vomiting and in pain again Thursday morning so we called his team and they suggested that we bring him down seen as we were already planning on coming down to Indy.

We had a long day in the ER but finally got to our room around 11:30pm -12am. Needless to say 4 hours of sleep is not ideal and made for a very rough next day. Broc slept most of the next day too. His labs scared us a little but made a quick turn around. He was diagnosed with a virus that his liver did not like. His liver hasn't fully recovered but that just takes time.

He was doing really well Sunday morning so the team let us go to the hotel so we could be back fo his appointments on Monday.

Ophthalmology:
Dr Jones was really happy with Brocs eyes. He will continue to wear his glasses to help him focus better. She said she was really happy with how his eyes are tracking. She is very happy that his eyes are no longer so dry and irritated as we know Broc will not take too kindly to have drops everyday. We believe that increasing his IV fluids has helped. Which makes sense she said if he doesn't take in enough fluids then his body cannot produce tears to lubricate his eyes.

To think Dr Hoyer has been listening to Brocs heart for 12 years. He was such a little peanut when he first heard his heart beat. 

Cardiology:
It was so great to see Dr Hoyer. He really has Brocs best interests at heart. Although his heart pressures have lowered which is AMAZING!!!!!! he is still unfortunately extremely fatigued and runs out of energy fast with simple things such as riding his bike or playing catch with his brother and friends. He hates that he has to stop playing and that he is not able to keep up with them. We spoke about the surgery he had vs the surgery they were going to do. It really comes down to putting a NEW heart valve into an already sick body. The heart valve will only function as well as the body tells it to. If Broc only had cardiac disease then it would only be a heart valve issue but unfortunately he doesn't. He has a disease which effects every organ in his body.
We also spoke about enrolling Broc into a program that could maybe help us further but we will discuss that with his Metabolism Dr when we see him November. His vascular issues were also discussed as we know Broc has not had his big growth spurt yet and if we don't give the vessels enough blood flow for him to grow properly then there could be problems.We will be visiting the Vascular team in December to follow up on that.We spoke too about Broc being out of breathe a lot especially when he is ill and doing simple things like running to the bathroom. His O2 sats are not dropping when this happens so we know that it is a muscle issue. There is nothing we can do about that so we just keep supporting his lungs with breathing treatments to help them cope when he is not feeling well. When the O2 becomes a problem then we will deal with that. Overall Dr Hoyer is very happy with Brocs health considering everything he is dealing with.

Our big thing is trying to keep him as healthy as we can through the cold and flu season. If you don't see us around its because we are hiding away from the germs as much as possible. There are times when we know we have to be out of the house, then we will just protect him as much as possible. Brocs last 3 hospital admits have been from a virus that makes his body very sick. Unfortunately there is nothing we can do to prevent him from getting these viruses. We are visiting the Immunology Clinic in November and are hoping that they will have a few suggestions for us.

Thank you for all your love,prayers and support. Thank you too to the friends that take care of Lil Mark while I am in the hospital with Broc.

July and August update

July our Buddy had a big sinus infection that he needed steroids and antibiotics for. Broc continues to fight recurrent viral infections. They leave him with a very sore throat,dehydration, lots of body aches and chocking on his secretions. The really bad ones he ends up in the hospital with an ileus or bowel obstruction. We have also had some quiet evenings at home just enjoying the warm sunshine and sunsets.

We were able to take the boys to the fair to enjoy some local Monster trucks.

Broc had an MRI of his brain and spine to rule out any nuero changes. Some new issues have come up and we are still looking for answers for them. Thankfully no new brain changes.

His central line sprung a leak unexpectedly and it had to be replaced. It's always fun when we can meet up with friends.

Broc and I took a trip to Cincy for a sleep study. Thankfully no new changes there either and he doesn't need any intervention while sleeping.

In the beginning of August we had a few cooler days and we visited our local zoo. The boys love watching the animals and reading all the interesting info about them. They could spend hours there.

We consulted his Pulmonary team and another breathing treatment was added to help him. We are also having to drain his belly more often on the bad days to help with the secretions. Unfortunately sleep is a hug part of Brocs life now. He naps almost daily now, sometimes twice a day depending on how hes feeling or what he did the day before.   

 We said goodbye to another wonderful therapist. You will be missed greatly. We wish you well on your next adventure. We are sure all the new kiddos will love you as much as we do.

We had a trip to Cincy for Brocs annual scopes to see what his insides were looking like and to rule out some things too. We did rule out some things but as usual found out some more important things which will be investigated by his Riley team. They discovered that he hemorrhages in his trachea and bronchi when he coughs. We have seen this happen to other mucosa membranes when they have trauma so this is very concerning. 

While we were there we met up with some friends for dinner and also took Broc to the museum for a bit of fun. 

This past week we saw hematology to discuss the findings from Cincy. They drew a ton more labs on Broc to see if Broc has any other blood disorders. Broc also needed a booster of the pneumaccocal vaccine as he has a very low immunity against it. We are hoping the booster will help him have better immunity against it. We are also hoping that it will help him with the upcoming Winter months. Joe did an amazing job with giving Broc his shot. They are also referring Broc to Immunology for a further workup. He is not able to be on the immune therapy he was on last year so we will see if there are other options for him.

Palliative care has agreed to give us a little pain relief medication for Broc until the Chronic Pain Team can see us. Unfortunately it seems that his team still want him evaluated when his pain is extreme as they feel it is not safe for him to be at home during those times.  

Broc has a few more appointments coming up. Lil Mark has a test and then a procedure at the end of the month. Please keep us in your prayers as we navigate all of these.

Thank you for all your continued support, love and prayers.