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.
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.
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