wedding weekend

We went to Richmond this past weekend to watch one of Erin's cousins get married.  Zachary went with us too, though he skipped the wedding itself, which was lots of fun. 

He had a weekend full of firsts, such as his first time staying in a hotel, which he thought was wonderful since it had so many doors he could open and close, and open and close, and open and close.  He also was quite fascinated by the elevators, in which he could see his reflection. 

He also got to meet some extended family for the first time, which gave him an opportunity to show everyone how well he waves hello and goodbye.  He also visited Virginia's capitol and had his first  full-blown public meltdown in the hotel lobby.  He also got to see grandma, Uncle Matt and Aunt Jill and cousins Jake and Grace, who visited him in his room while we were at the wedding and reception.  (We brought a nurse with us too).

It wasn't all fun and games, though.  He got sick on his second night there despite our best efforts, probably because of the germy floors and air.  Not sure just yet whether it's just a little cold or something more serious, like a respiratory infection.  Time will tell.  Right now he has a runny nose, dry cough, diminished appetite, low energy and is needing way more oxygen that he usually requires.

So sad to see him feel so crummy.  His coughing fits have gotten so bad and he cries so much that tears run down his little cheeks.  We're giving him more frequent and varied nebulized breathing medicines so hopefully that will start helping soon.

But the good news is that at least his feeding tube gives us the ability to give him food and fluids even though he's not hungry, so he can stay hydrated and nourished.  He needs to get better quick so we don't have to cancel the sleep study he has on Halloween. 

The sleep study, which requires a night in the hospital, will help determine whether he's retaining carbon dioxide when he sleeps, which is why he's still on the vent at night.  If he's not, then we can start weaning the vent at night over the course of a couple months, which is a necessary step before we can start the process of decannulation, or getting the trach out. 

If the sleep test goes badly, he'll need to stay on the vent at night through the end of the year and into next year while his lungs continue to heal from the battering they took when he was first born and they were paper thin and were brutalized by the force required to properly ventilate him.  Wouldn't be the end of the world, but would be a disappointment for sure since the trach would have to be in longer than we would have hoped.

We have had some positive news on other medical fronts recently.  He reached 20 pounds today so he's finally on the growth chart and trending up.  And his pulmonary hypertension hasn't gotten any worse, so we've decided to go back to seeing his first cardiologist who we really liked before it was recommended that we see a PH specialist. 

So all-in-all it was a good weekend.  Could have done without the sickness, but he had some new experiences and got to meet some people who care about him very much, which made it worth it, as did seeing Erin's cousin Marc and his family so happy at their wonderful wedding weekend.