Breathe

No news is a challenge and I find myself addicted to progress and good news. This afternoon we called a meeting with our cardiologist, Dr. King, to get a report. He was great in quickly meeting our request, he sat down with us and told us that he could have removed the heart and lung machine (aka ventilator or breathing tube), but his gut told him not to. He asked us our opinion...my opinion is that if this guy told me to walk into burning building I would do it. The whole staff is so good about asking us our opinion and involving us, it really keeps us engaged. Dr. King talked about how if he had pulled the tube that he felt the chances of having to reinsert the tube were pretty high and he didn't want to do that to Hunter. The rest of the conversation surrounded the fact that he felt Hunter was doing well and how we would be wise not to have expectations. He did make one slip...one that we are trying not to focus on but it gives us hope; he said that he would be leaving on Friday through early next week and "when I get back you may be gone"...WHAT? Did we just hear that?...of course it's all up to Hunter and we are not going to hang on that, but you can't un-ring a bell.

We stayed for a few hours, just watching and touching the top of Hunters head and the bottom of his feet...the nurses say it imitates the womb for post-op babies. Hunter looks great, his color etc. Though he is retaining allot of water yet he is not peeing. This frustrates the doctors and nurses and they need to adjust his meds to figure out why the water is being retained in his tissue rather than being processed through his bladder. It's not a big deal, though they want to see him pee more, no matter what the bloating will go away over time as the tissue releases the water weight. One of the most uncomfortable sights is the bloating of his "boy parts", as he sits at slight downward angle that area is the natural place for water to "run"...it's not a bad thing, but it looks very uncomfortable. Hunter is moving more and more each day and he is awake much more of the time. The nurses had to "tie" his arms back, they do this by wrapping his blanket in such a way that it doesn't allow him to move and accidentally remove a wire or drain tube...I hate seeing this, if he develops claustrophobia I will know why.

I have to be honest, my patience is being tried. I am having a hard time finding a balance between patience and wanting to hit the accelerator as I envision the four of us at home, together...it's a natural reaction and when it's your kid you want to see them succeed and each little thing he does is a success in our minds. I suppose this entire experience is a microcosm of life and for all living organisms life is about facing challenges and then overcoming them. Each little challenge Hunter overcomes is paramount in the overall success of achieving the goal of coming home and moving on...it's just hard to have days when we want to succeed and we just sit idle...I guess that applies to all of us everyday...

Tomorrow at 4AM while we all sleep soundly (some of us) the nurses and respiratory team are going to adjust the breathing machine to allow Hunter to attempt to breathe on his own. If he does, the machine will allow him to, if he doesn't it will assist him...we pray that he has the strength and the will to move forward with this big step...