One long day!

Oh today was a dreadfully long day! I left early for his appointment because my ped (whose out of town this week) ordered some labs. She wanted me to get them before his appointment and then cardiology could check them while we were there. Lets just say it was a good thing I left early! While I was driving something just didn't feel right. Then I noticed it was coming from my back, right tire. So I pulled over into a gas station and low and behold, a huge bolt was in my tire! There was no way I could drive and risk blowing my tire on the freeway with just me and Jax. So I ran to Discount tire and told the guy I was in a huge hurry to get to a doctors appointment. After the car sat without being pulled in for 10 mins, I asked the manager if it was faster to fix the tire or replace it. He said cheaper is always better, and I said not when I have an appointment I have to get to! So he made sure my tire was done. I owe those guys some donuts, we were only 5 mins late to our appointment! Although the labs didn't get drawn.
Jax was asleep when I got there but woke as soon as the echo started. And for some reason, he was super cranky. He just cried and cried the whole time! And he cried at our doctors appointment as well.
The results.. his pressures are still up, a little higher than his last echo. But as my dear friend Tammy so eloquently put it, our cardiologist is like Eeyore, slow and indecisive! He doesn't want to do anything right now, but he gave me options of things he could do. The cath lab being one of those. But he can't say exactly what the cath lab would do. Tell us more accurate pressures is all. I don't think he knows what to try next. My plan now is to go back to pulmo and get her advice on all this. Do we treat the PH with another med, or is other lung disease getting worse as well? Cardiology agreed that most patients don't drop their sats with PH unless it gets really bad, so PH is probably not making his sats worse. I just don't know what we are going to do with those lungs of his, they are just so sick! 4 years of torture. 4 years of PH, aspirating, and high pressure support from ventilators takes its toll!
We went for the labs after our appointment. IV team had to come draw him because of his horrible veins. I didn't leave the hospital until 5:30.
So it was quite a long day and I'm exhausted! Here's a couple of pictures I snapped in between his bouts of crying. The quality is horrible!


A couple of people have asked about the yard sale. It will be the 14th of August. If you live in the Salt Lake area and have stuff to donate, or just want to come help out, please email me!