Zach spent from March 12 through April 12th in ICU. This stemmed from an ER visit because he had been in obvious pain and having his shaking incidents for about 2 days straight. The ER docs had gotten enough medications into him to get him to stop shaking, and sent him upstairs to be observed for 24 hours.
While settling in to our room, Zach developed an obstruction in his airway and had to undergo an emergency intubation. He was placed on a ventilator while the doctors tried to figure out what was going on. A bronchoscopy showed that he had tracheomalacia - an area of the trachea that was collapsing. This is emerging as an issue for older Hunter's boys.
After a couple of days he was moved to a CPAP, and then a day later allowed to breathe on his own. That night we put him back on the CPAP because he seemed to be working hard to breathe. All went well for most of the night. Then around 4 in the morning all hell broke loose. Zach's O2 saturation dropped into the low 80's, and his heart rate went up to 150 (normal for him is half that). By the time the nurse came in his O2 sats were in the 70's and dropping rapidly. The doctor came in and tried to re-intubate, but Zach's airway was in such bad shape that it took him about half an hour to get a tube in the proper spot. It wasn't a pretty sight. I was on night duty, and called Janine to hurry to the hospital, because for a while it didn't look like Zach was going to make it.
The next day Zach had surgery to reduce the size of his tongue and to clear out some excess tissue in his airway. The thought was that this would create enough space for him to be able to breathe on his own again. After a few days for the swelling to go down, he was extubated to see if he could breathe on his own. Unfortunately this did not go well as his airway collapsed almost immediately. Again, the on duty doctor had a very difficult time getting him intubated. Fortunately, the doctor who had intubated him on the first day was just coming on duty. Because she had seen his airway before, she had a better idea of how to get the breathing tube in. So, back on the vent went Zach.
This was tough because we realized that Zach couldn't maintain his airway and would need to get a tracheostomy. He had that surgery done a couple of days later, and it went well. Despite numerous attempts, we couldn't get Zach to start eating by mouth, so we made the decision to have a feeding tube placed in his stomach. This procedure was quick and simple, and has allowed us to actually get Zach the proper amount of nutrition daily - something he desperately needed.
After a month we were discharged and went home to a world of new machines, medications, home care nursing, and endless monitors beeping.
Things went smoothly for about 5 weeks, then we had to bring Zach back in to the ER because his breathing was all funky (sorry for using all these technical medical terms). He spent a couple of days in ICU getting antibiotics for an ear infection that was brewing and getting his "digestive" system cleared out, because things didn't seem to be moving along very well.
A week after discharge while sitting in the living room, Zach's airway became obstructed and his nurse and I had to use an ambu-bag to keep air going into his lungs. Paramedics were called and we were transported via ambulance to Memorial West, and then after he was stabilized to Joe DiMaggio Children's Hospital (yet again).
I was sure, and a broncheoscope later proved me to be correct, that his airway was collapsing below the bottom of his trach tube, and blocking it off. So, we spent a couple of weeks in ICU while a new - longer trach tube was made. We are back home again, and things seem to be going well.
Unfortunately, because of his hospital stay we had to cancel Zach's birthday party. It was going to be held at Incredible Ice, which had donated the exclusive use of one of their rinks and party rooms. We felt bad because the management there had donated what would normally cost a fortune, and we ended up having to cancel on them. Oh well, I guess that's life.
Zach's shaking incidents (now pretty much determined to be "sympathetic storms") are still ongoing. He's been taking a boatload of different medications, but nothing has really done the trick yet. We have a neurologist appointment today, so we will see what that brings.
Briefly for the rest of the family news....
Janine and I are fine.
Brandon is doing well. He is excited to be attending summer camp with Josh and Zach this year. Of course Zach isn't going yet because of some nursing issues, but that's another topic for another time.
Josh has been doing well. He graduated from elementary school and is on his way to the Health and Wellness magnet program at Driftwood Middle School. He picked up a few awards at his graduation ceremony, and had straight "A's" for the entire school year. In sporting news, his baseball team finally nailed down a playoff championship this past season. I attribute this success to my skills as an assistant coach.
With the thought that things will remain stable, I promise more frequent updates. Of course I've promised that before and you see how well that went.
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