1. I'm a teacher/coach and this time of year is absolutely NUTS-O for us
2. We are in the heat of wedding planning (just 20 days away)
3. I am a mom to a completely adorable little boy and all my free time I want to be spent with him
and then there's the last reason, probably the truest reason out of all of them...
4. There is part of me that feels if I don't write about it, if I don't talk about it, then Camden's disease isn't real
While I know his disease is 100% real and is not going away, not talking about it is a nice escape from the scary reality of it all. But, since it is real and I promised myself to use this mode as an outlet for my fears, worries, dreams, and hopes; here's an update on what's been going on in our world since I last posted.
Our visit to TCH (Texas Children's Hospital) was quite an experience. It was a long drive there, where Cam did great and slept most of the way, and an even longer appointment. Our appointment was scheduled for 1:00 and since we had never been there, we decided to get there early so we would be on time. On our way to the hospital I started feeling very nauseous but figured it was just from nerves, being in the car for so long, and not eating for a while. Once inside the hospital, we made our way to the elevators and found out we had to go up to the 20th floor for cardiology.
I REALLY GOT NAUSEOUS THEN
We walked out of the elevator and through the glass doors for the cardiology floor and I started to tear up. I walked to a corner to try and gather myself but that's when I lost it. My chest got tight. I couldn't breath. I had tunnel vision. I felt EXTREMELY nauseous. I started sweating. I could not control myself. I didn't know what was going on. (Of course, we all know that I was having a pretty bad panic attack) Luckily, my wonderful mom brought me back to reality. After a few minutes I was able to compose myself and walk over to join the rest of the family (Yes, we brought the whole fam-damn-ily with us to Houston) We got Cam checked in and they told us just to wait and they would be calling us back in a little while. He was taken back for the height, weight, pulse, and blood pressure then we were sent back into the waiting room to wait for the sono tech to do the echocardiogram. All of this waiting was driving me nuts!! I just wanted to see the doctor already...little did I know it would be quite a few more hours before that would happen.
Fast forward a few hours and the doctor has walked in and is now talking to us about Camden's disease. He told us from the echo that his septum wall was at 1.1cm and he had a severe obstruction. He went through the whole schpeal of explaining the disease to us...AGAIN, just so we could get in our minds how this disease works and understand it all. When he got to the "worst case" part I wanted to tell him to stop, don't even tell me....that wasn't going to be my son. But the fact of the matter is that it COULD be, so he continued....
He made us all very aware that while Camden is doing great and isn't showing any negative signs or symptoms it is very likely that he could go into cardiac arrest. My mom, being the amazing woman that she is, tried her best to get him to tell us that wouldn't happen to Camden, that he is a different case, but that's just not how it is. We were all faced with the cold, hard truth that Camden could go into cardiac arrest at any moment and there wasn't anything that any one of us could do about it. Now, I know I haven't been a parent for very long, but I'll tell you....that is THE hardest part to swallow. Probably the part that has kept me from writing for so long, I don't want to admit it.
It took us (my mom and I) to actually wrap our heads around that, but once we did the doctor told us he wanted to send Cam home on a 24 hour heart monitor, just to see what his heart does outside of the hospital; upped his dosage of propanolol to 9mg a day, and said that he wanted to see us back in 3 months. He also recommended that we get an appointment with the genetics clinic to find more out about Camden and how he carries this disease. When we finally left the hospital, 6 HOURS LATER, I was emotionally and physically exhausted. I still didn't feel how I had expected to feel, but like I said in my previous post...I'm not sure that I will ever feel good when leaving one of his appointments.
The waiting to go back has been hard. The bigger he gets and the more active he becomes I can't help but be scared that he is pushing his little heart too hard. While I try not to focus so much on that, it is pretty difficult.
My sister sent me a link today about an article on "Mother's of Sick Kids" and there was something in that article that really resonated with a tip of what I am going through. The article talked about typical things that mother's of sick kids go through that other mother's do not.
"Grieving the loss of the child you envisioned yours would be and coming to accept the reality of the one you have"
Those are some powerful words right there, and I'll tell you....they can't be truer.
There are things that Camden will NEVER be able to do, never be able to experience, never be able to even try because of his disease and that tears me apart inside. I am going to do my best to give him the most amazing life as possible and not let him focus on things he can't do, but for now I'm grieving for those things.
So there you have it, our life as of late...
--Heart Warrior Momma
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