Instead of writing 3 posts I am just doing one big one.
We went to see a great team to help with Brocs pain management. They have given us some meds to use and we are slowly increasing them to see if they will make him feel more comfortable. At the moment we haven't seen any improvement yet but we are very hopeful. These Drs are very compassionate and caring and will be another great asset to Broc's Team.
We have been noticing the past couple months that Broc's gait has been off, he has been toe walking on his right foot especially and complaining of a lot of pain in his leg and foot. we expressed our concerns to his vascular team and they brought his appointment forward a month earlier. We saw his vascular team a couple weeks ago. The news was not what we were hoping for. His legs went from being 3mm different to now 6mm. The team has 2 theories for this.
1. He has grown an inch in the last 5 months and his body is trying to play catch up and it will even
out. They have referred us to get a small lift put in his shoe to help with his gait and toe walking.
2. Unfortunately there may be another occlusion somewhere and it will have to be investigated. If we go back in 6 months and the difference is 9mm or more then they will do an angiogram to see
where the occlusion is or what is causing the lack of growth.
We are hoping very much that his body just needs to catch up on the increase in growth. Broc really doesn't need to go through another surgery.
We had to say goodbye to my dad and sister. It was wonderful to have family with us and the help when ever we needed it. I loved having my sister go with me when we had hospital stays. It can get really lonely sometimes. I loved spending quality time with my dad too at the hospital. It was nice for them to see our day to day. Most of all I loved that Lil Mark had a constant care taker at home. It made him feel very secure and loved. Mark and I were also able to take 2 mini vacations while they were here. We are very thankful for that. It gave us time to recharge ourselves and take a time out of medical life for a little bit. We made some special memories while they were here. Unfortunately we weren't able to do as much as we wanted.
Unfortunately Broc decided it was time to test out his plan. He became really ill last weekend with a very high fever. Our plan went very smoothly. We went daily to the hospital for labs and IV antibiotics. Everyone on his team was very alert to his lab work. Whatever infection he has made his blood counts very low and some were very scary. It has really effected his bone marrow function as well. We are doing everything we can to try and keep Broc healthy. We will be doing his lab work at home to try and minimize his trips to the lab and exposing him to more illnesses. He is still not able to tolerate any feedings so he is depending on his TPN ( IV Nutrition) and IV fluids to keep him hydrated. He does have a small amount of liquid a day maybe an ounce or 2 but it gives him severe pain. There are times when his mouth is so dry and he is really wants liquid but knows the pain he will suffer once he consumes it.
He continues to be incontinent at night. We are not sure what that is about. We will have a better picture once he has his follow up Urodynamic Studies in July.
On the positive side :
He completed 2nd Grade and has started 3rd Grade. We are so proud of him.
His incision is healing really well from his T.C. surgery. He has a follow up the first week of June.
He continues to grow and gain weight.
He also gave another Bible reading despite not feeling well.
If anyone has any questions please feel free to contact me.
Thank you for all love, prayers and support.
