Are We Done Yet??

*Warning: this is a very long post*

Wow, this last week has been rough. It was one of those "they should have tied my tubes during my c-section because I'm never having another baby" kind of weeks. It all started out last Friday when the cardiologist called and said that he was looking over Johnny's most recent echo and there was some high pressure in the right side of his heart that concerned him. On Saturday morning they did another echo while Johnny was a little sedated so that he wouldn't wiggle and they could get a really good look at his heart. After the echo they still thought the pressure was high aka. he has pulmonary hypertension. Well, this was kind of a big deal because if you don't treat pulmonary hypertension right away it becomes irreversible and eventually the heart will failure and the person will die. Lovely.

On to Monday. I got to the hospital that morning and during rounds the neonatologist and our nurse practitioner were explaining the situation to me. They said that pulmonary hypertension was a big deal (which I knew) and that cardiology wanted him to have a cardiac cath done. The worst part was they told me "Just so you're prepared, he has to be intubated for it and there is a chance that he won't respond well to the cath and he may never come off the ventilator. And if that happens he won't have a future, so you need to decide what you would do in that situation." (cue annoying "pity face"). Basically they were saying that I needed to decide if we would be willing to pull the plug on our son. Are you kidding me!!?? So, my choices are to a) do nothing and let my child die of pulmonary hypertension or b) do the cath and have him possibly stay on the ventilator for the rest of his life. Not good choices.

I tried not to freak out and asked to speak with a cardiologist because frankly, they know more about this than the neonatologist and nurse practitioner. The cardiologist came and explained everything and answered my questions. He said that they must have understood wrong. Nothing during the cath would make Johnny stay on the ventilator forever but it may be harder to be extubated because of past history. Well, Johnny hates the ventilator and does a MILLION times better without it in (remember this post?), so that made me feel a little better. But I was still freaked out.

After talking about it K.J. and I decided to do the cardiac cath because just giving up and letting Johnny die isn't an option, even if the procedure is scary. So, they took him down to the cath lab on Wednesday morning. I was terrified. I'm mean, this is my 3 month old we're talking about. Right before they took him in the cardiologist told us everything that could go wrong during the procedure. I HATE that they have to do that. Seriously. As if I wasn't scared enough. A few of the risks include heart attack, losing a leg and death! They're not super likely but still they've happened before. AHHH!! I was pretty much a mess at that point.

After 3 incredibly long hours, they finished and Johnny was taken back to his bedside. The MIRACLE of many miracles that day was that he was extubated before they brought him back!! Hallelujah! Luckily, one of Johnny's primary nurses was there and she pretty much forced them to take it out. And he did great with it out. Thank you Pat! The next miracle was that they found that he DIDN'T have pulmonary hypertension! They thought it was hypertension but it was actually extra blood getting shunted to his lungs because of his heart defect. So we went through all that stress and worrying for nothing! At least we know what's going on now.

At this point it looks as though Johnny will have his repair surgery done around 6 months instead of 2 years. We just need him to get bigger. And speaking of bigger, he is now over 6 lbs.! I hope he can have his surgery sooner rather than later. Even though I am TERRIFIED for the surgery, I can't wait to have it over with and get on with life. Thank you for all the prayers and support. We couldn't have done it without heaven's help. I know that my son is in the Lord's hands and that everything will work out eventually, even though it's extremely scary at times.

So, that was our week. A note to all my friends/family with kids, DON'T COMPLAIN! If your kid has a runny nose or a cold or an ear infection or a diaper rash or they throw tantrums or they make messes or they wake up at night or they won't eat anything but cookies DON'T COMPLAIN! It could be way, way worse. I would give ANYTHING to deal with those things instead of what we're facing/have faced. Please, do it for me.