Hematology App and some other news.

Sorry this has taken so long to write. Brocs immunologist referred him to hematology just to make sure we weren't missing anything and to figure out if we could find a reason for his fevers and eos especially after surgeries.

It was very challenging trying to fit 7 years of information into 2 hours but we tackled one subject at a time. Some of the things were discussed were very serious and others were not so bad. I think that is one reason why we decided to blog after we had some results. We didn't want to scare anyone unnecessarily or worry anyone. It was extremely stressful as parents waiting for those results. Unfortunately the Dr had a family emergency and couldn't get back with us as soon as she wanted which made it even worse for us. I finally spoke with her yesterday and as far as she can see we are not looking at any leukemia or lymphoma. Broc is having some numbers which are out of the ordinary but others are in the normal range so he is definitely not going by any textbook and once again writing his own novel. This is proving to be very difficult for his drs.

They will be looking at possibly adrenal insufficiency, many auto immune diseases etc. They are also digging deeper into the coagulation issues that were discovered in January during his vascular surgery.

Another thing we will be investigating is the fact that Broc has an issue with anemia. We know he is not bleeding internally anywhere that can be seen but she thinks that perhaps he is is loosing microscopic amounts in his stool so we have to check periodically to make sure that is not the case. Broc does take an iron supplement already so once his surgery is over we will stop his supplement and see how low his levels go. The Dr thinks that possibly his body is not absorbing the iron that he is eating so we may be looking at a malabsorption problem so we would just have to continue with supplements or he would have to have iron infusions if things got worse.

Broc went back to the hospital this morning for another slew of blood work. All these tests that Broc is having now are all new and have never been checked before. We have tried for so many years to see a hematologist but no one wanted to take on Brocs case as he is so complicated. Immuno and Hematology and GI are proving to be a wonderful team for Broc. They are all at the same hospital and work very closely with each other.

This was yesterday at Brocs immunology app. Lil Mark was feeling under the weather yesterday and his asthma was crazy so we all spent the day together. Dr H has a plan again for steroid therapy before and after surgery for Broc so that we can hopefully avoid an eosinophilic reaction. We may also be adding an allergy med because we think he may be having an allergic reaction to something that is given during the anesthesia process as well.





















On another note we had our circuit assembly last weekend and took a few pics.

This is how Broc spent the morning session of the assembly. Poor Buddy is is building his strength slowly every day. 

   

For those that are interested, this is the feeding tube that Broc will be getting. He will be having his surgery in 2 weeks. I will be posting hourly updates on that day as well as daily updates.

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

Trying to find balance and joy at the same time

Last week was a really rough week for me. Emotionally it was hard, I think still missing my mom. I wish I could just talk to her,let her know how crazy things are,having her tell me things are gonna be okay. Talking to her about all the medical stuff was so nice cause for the most part she understood it all. I cannot wait to see her again.

Broc was having a really hard time with his energy levels. He is getting really frustrated with the fact that his body is telling him to rest and being a 7 yr old its really hard. Why should a 7 yr old rest? Why does he run out of energy? These are all questions he asks. He knows the answers cause he's been told the reasons why but for a 7 yr old mind to understand them is so difficult. Even singing kingdom songs are getting hard for him. He was singing the other day at the meeting and got to middle of the second verse and said he was getting out of breathe and asked to sit down. We know that Brocs heart is getting weaker but it seems as though his decline is happening faster and faster. We see the cardiologist in May. Hopefully then we will have a better plan or he may say more wait and see until it gets bad enough to have his valves replaced.

Brocs been having lots of GI difficulties which are not new at all. Many people are under the impression that now cause he has the tube all these issues are coming up. Not at all. Broc has been dealing with all these issues his whole life. Its actually easier now that he has the tube cause on days where his nausea is so bad or pain we can at least still tube pedialite into him at a very slow rate instead of heading to the hospital for IV fluids.

My body doesn't handle all the extra work very well emotionally or physically so my best medicine is to rest. I try and rest as much as I can. Daddy Mark is being amazing and helping me where he can too. He checks Brocs feeding before he leaves for work and if he needs to be fed he refills his feeding bag so that I can carry on sleeping. Every couple minutes help so I try and lay down even if the boys are watching TV or playing a game. Even though I'm lying on the couch we are still together spending time together.I know there is laundry, housework etc to be done but it will always be there. I'm so thankful that I have a loving husband that totally understands when my body crashes and I need to rest to replenish my energy. Taking care of the boys is important and my family but if I don't take care of myself then I'm totally useless to anyone. So finding the time to rest is really important for me.

Our Buddy started school today for the first time this year. He was so excited to go back and his teacher said he did so well. He takes the Special Ed Bus to school. Its the same bus he took when he was in Special Ed Pre-School so they all remembered him. So happy it was another good exp for him. Mrs Bye said he was so happy when he got off the bus. The school is making it so easy for us as parents to send him back to school and know that he will be well taken care of. I was so scared putting him on the bus this morning. It was like he was going on the bus for the first time. It was really nice to have a couple hours to myself. I went and had coffee with a friend who I hadn't seen in a long time. It was great to catch up again. It was wonderful to have adult conversation.

We got the call today for the date for Brocs surgery. April 2. Not the date we were wanting but trying to co-ordinate 3 different surgeons all on the same day at the same time is very challenging. Unfortunately we will not be attending the Memorial as a family this year. Broc and I will be listening in on the telephone in our hospital room. It will also be Spring Break which means Lil Mark will not be in school. So finding a place for him to go while we are in the hospital will be a challenge. Anyone that would like to have him for a day please let us know. We are hoping that this will be a very short stay but everyone knows how Broc likes to make things interesting. Lets hope he will be very "boring" this time.

Broc will be getting ear tubes, a GJ feeding tube and filler injections into his laryngeal cleft to hopefully prevent his choking episodes.

Thank you everyone for all your love,support and prayers. Thank you also for the meals,babysitting and errands that friends have done for us. We really appreciate all your help big or little.