Thursday, February 13, 2014

Post-Breathing Tube and Public Speaking

Max had a little bit of a rough night but he's been doing well today. As a result of having the breathing tube, his lungs have been secreting a lot of fluid which is not uncommon. However, his lungs aren't very strong (he's never had to use them since he was intubated at birth) so he's unable to really cough and get the gunk out on his own yet. The stress of all that made his blood pressure skyrocket last night which was scary for us but they got everything under control with a breathing treatment and suction and he didn't have to be re-intubated last night.

They've cleared his lungs a couple times and his airways alternate between having good flow and not so good flow. But he's being monitored closely and the respiratory therapists are continually checking in on him. It's going to be a gradual process to get his lungs where we want them to be because they're set so far back as a result of being intubated from birth.

[EDIT]: It turns out that Max's lung issues last night were, according to the x-ray tech, that he had so much gunk in his left lung that it nearly collapsed. We were really fortunate that the doctors and respiratory techs caught it in time and were able to clear it out. He just had another breathing treatment and his x-ray today showed that his lung looks exponentially better.

This is another one of those blessings in a bad situation. Max was diagnosed mid-pregnancy with HLHS but we had enough time to move down here and get him set up for transplant. Last night was terrifying because Max was having a hard time breathing with really high blood pressure but they caught it in time before his lung collapsed. Very scary, but we're feeling very thankful, especially because his lung function is improving so much. 

They also just removed the bandage from his chest closure and the incision is a little redder than we would all like. The attending on duty is just got ahold of the surgeons because Max's antibiotics were stopped this morning. He came in and said he didn't know why the antibiotics were stopped and to definitely start them again. Now we're all just keeping our fingers crossed that the antibiotics help with the redness and he doesn't get an infection.

On the plus side, today they were able to start feeding him through a tube that goes in his nose and down to his stomach. which is great.

Sometimes, it's the small victories that get you through the day.

Tomorrow there's some sort of Valentine's Day party for the heart patients and their families. We'd heard about it a couple days ago when someone from the hospital stopped by to get our permission to have our surgeon talk about him at the event and to get permission to contact the Arizona Republic about Max's story since he is the youngest heart transplant patient at Phoenix Children's Hospital (the youngest patient previous to Max was seven months old). Then when we saw one of our transplant team coordinators this morning, she informed us that apparently we're speaking tomorrow.



She just wants us to talk a little bit about our journey with Max from when we found out his diagnosis to getting to where we are now. It shouldn't be too bad, it's a story I've certainly told a lot so I should be fine. I mean, come on, if Max can make it through a heart transplant then I should be able to suck it up and do some public speaking for him.

Maybe public speaking isn't that bad.

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