Monday, January 26, 2015

First Day of Preschool

 After going through everything there were moments where I didn't even think he would come home from the hospital. Here we are the first day of preschool. What a battle this has been he may not be at a normal preschool to start off,but I know that this special Ed preschool has the needs and training to help in his speech and development delays. I'm so grateful there are wonderful programs like this before school starts to prepare him and get him caught up to what lies ahead.

 It can be such a scary task sending you hardly verbal 3 year old to teachers you don't know. Their training however is specialized with these special kids who need that extra boost in life.

Friday, January 9, 2015

Feelings relived

  Shane my 3 year old who has/had heart defects got his tonsils/adenoids out last Friday. Since he has a paralyzed vocal chord also,  his ENT Suggested also injecting his vocal chord with this anti wrinkle type serum. No not botox! :) This surgery would help with his breathing(minor sleep apnea/breathing blockage when sleeps)  and hopefully with his swallowing also. I wont bore you with all the technicalities, but this surgery was needed. 

   Although as a mom you question is this really needed? Does my son really need to be put under anesthesia and as a heart baby this means a ton more than a perfectly healthy baby.  Does he really need these out?You always think of the risks out weighing all the good that come from it.  As a mom who spends many trips traveling down to Primary's children's Hospital I have learned the doctors will not suggest surgery unless its absolutely necessary. I had to trust the doctors, nurses and everyone else with this procedure. 

   This Surgery though its not nearly as serious as Shane's two heart surgery's it brought back memories in every aspect. Having Shane Fast before surgery brought up the memory of trying to make Shane as a baby fast. Getting him registered putting him in his hospital gown. Last but not least the most horrible memory of saying goodbye at the "yellow Line". Where the anesthesiologist and Shane continue going while you have to stop. Saying goodbye to my much older Shane made it even harder its different when they are babies knowing they wont remember this. Shane is starting to get to the age where he will start understanding and remembering these things. My husband and I both cried as we got to the waiting room. This also brought back memories of hours of waiting while Shane was in heart surgery. We pointed out where we sat each surgery and all those emotions come flooding back. I looked around the room hearing some conversations of surgeon updates these children have bone surgery this one having this surgery. Seeing parents crying, pacing because their waits had been long. I just wanted to go hug everyone and say I have been there it will be ok. 

  All went well with Shane's surgery, he had a tough time coming out of anesthesia which he did before many times but, what a trooper he is. It was very different seeing my big 3 year old actually know mom was around and wanted to be held and communicate with us. Very different from just a baby in a bed. Since Shane is not " normal" he stayed the night at Primary's after surgery for observation and to make sure all was well. My husband stayed with Shane at the hospital and I went to my in laws where my little 21 m old was getting watched by grandma and grandpa. I spent the night saw my little Jeremy briefly in the morning kissed him goodbye and headed back to the hospital. 

  We made it home. recovery was full of many sleepless nights and meds around the clock. We made it through like we always do. Now we will just hope and pray all future surgeries go as well. :) 

Monday, January 5, 2015

Our Heart Journey is on going....

  First we were sadden to hear the our beloved Cardiologist for Shane is leaving Primary Children's Hospital and going to Denver children's hospital. I took this news very hard.... I cried, got sick to my stomach then cried some more. Its not easy not being able to say goodbye to a doctor who shed tears with you,fought for your son and gave you difficult news,but also positive news. Laughed with us and saw our miracle boy grow. She knew our history and didn't want another replacement it just wouldn't be the same. So attending Shane's annual Heart appointment with out our familiar doctor I was worried. Not only was a worried about how Shane's heart was doing, but the "new doctor" too.

  We woke up early and left our home at 7:30am for an appointment at 9am. We arrived early but got in early. The echo is always first and usually takes some time
I'm amazed at how well Shane always does laying there having a stranger put goop and a strange device moving around on his chest. For at least 30 mins or more. He is such a trooper!
  I was watching the screen of the echo tech and nothing ever gets easier no matter how many times we do it. The more you do it the more familiar you get with the pictures of the heart and you can clue in to what is good or bad. Sometimes it's just a feeling sometimes you see it by the sloshing of red and blue together that shouldn't be together.  These appointments never get easier. 

  After the Echo we wait a little more because the doctor looks over the results. We met our new doctor's assistant she was very nice and we discussed what was new with Shane. Then the doctor came in and did it again. Our new doctor actually specializes in abnormal heart valves so we were actually grateful we got him and I'm sure our old doctor had that in mind, when we got refereed to him or however it works. After we got him all caught up. He gave us the results of the Echo, Good news is always first. He said that Shanes coarctation look great,VSD, ASd , patches look great also and his left side of his heart was pumping fantastic.  Then he gave us the bad news. Shane's BAV bicuspid aortic valve had a significant more leakage than the previous year and he said that surgery would be needed as it gets worse.  Most likely before he turns 12. As Shane grows his heart grows too so he might need two valve replacements before he turns 20. We will just wait and see. 

 The news of more open heart surgeries several in fact is hard to take, nobody wants to see your child suffer through that. As shane's valve leaks gets bigger his heart works harder and they dont want all the same things to happen like before. So we will go back in another year and hopefully not any sooner.:)