A flair for the dramatic

Not a happy post...

Zach has had some major issues this past week. It all started out with a routine visit to his pulmonologist on Tuesday. All seemed fine at that appointment, but because Zach hadn't had a brochoscope exam done in a while, the doctor wanted one done.

So, rather than waiting to do one at the hospital, Janine was able to get one scheduled at the office of Zach's ENT. During that exam, it was found that Zach had some granuloma tissue building up internally at the bottom of his trach tube. Basically scar-type tissue building up from the trach tube rubbing the inside of his trachea. Some ways to try to address the issue were discussed, and a follow up appointment was scheduled for a couple of weeks away to see if there was any change in the situation.

About 4:30 the next morning Zach's oxygen saturation monitor started sounding its alarm. When Janine and I went into Zach's room, the monitor was picking up no reading at all for Zach's oxygen level, and a minimal pulse. He wasn't breathing at all.

I began giving him breaths with the ambu-bag, and Janine suctioned his airway in case there was a mucous plug blocking it. Zach's pulse picked up a little, and his oxygen level came up into the 70's-80's. (For the uninformed - this is NOT a good sign when 100% oxygen is being forced into your lungs.)

Every 30 seconds or so I would check to see if Zach would start breathing on his own, but after a few minutes of no effort, we called rescue.

By the time they arrived, Zach was beginning to take a few week breaths. We were transported to Joe Dimaggio Children's Hospital via ambulance. Once we got to the ER, Zach was breathing on his own again.

Doctors suspected an issue with his airway, so Zach was placed on a ventilator to provide pressure to keep his airway open. This went okay for a while, then Zach stopped breathing again and had to be given breaths via an ambu-bag. After a few minutes, he started breathing and was placed on the ventilator again, this time with it actually breathing for him. (I have philosophical issues with him being on the vent in this manner, but more on that later.)

After about 10 hours in the ER, a bed was finally available in the ICU. We made a quick stop for Zach to have a MRI, and then up to the 4th floor we went. It was about 5 or so when we got up there.

Zach's ENT met us there and did another scope of his airway. In addition to the granuloma tissue, he was concerned with increased weakness in the walls of the trachea below the trach tube. (Your trachea should be rigid. Zach's is floppy, which can block off the airway. This is the reason he has a trach. The condition is called tracheomalacia if you want to look it up.)

Zach already has an extended trach tube. There isn't much more room for a longer one, so that really isn't a long term treatment option. Since we are not willing to subject him to further surgeries, the only real option at this time is to keep his airway open using air pressure provided by a ventilator.

Janine and I have decided to go ahead with this course of treatment as long as Zach is breathing on his own. We aren't willing to use the ventilator to keep him breathing.

It was a very difficult decision, but given all he has been through, and how it has affected the quality of his life we have decided the choice to remain in this world should be Zach's to make. As long as he is trying to breathe on his own, we will support his efforts, but we will not force him to breathe.

Given his physical and neurological condition, his doctors have agreed with our decision. We have signed a DNR order for Zach. He has been sent home under hospice care.

On a good note, Zach actually seems to be doing fairly well at this point. He seems comfortable and is breathing on his own. I guess that's the best we can ask for at this point.

I'll update when there is more to tell.

You can congratulate us now..

I know I'm a little lax in the posting department, but I had to drop in to post this...

As some of you know, I took the plunge and became head coach of Josh's baseball team for the fall season.

As luck would have it, I drafted a great group of kids. On top of that they could actually play pretty well. The team ended up winning the league for the regular season, went on won the playoff championship, and was selected to represent the league in a tournament involving the winners from several other local leagues.

That tournament was held this past week in Miami Lakes. After a weekend of games, and several days of weather delays (it was cold as crap down here), the championship game of the tournament was held this past Friday night.

Our team, the Marlins, faced off against the Yankees from Miramar Optimist. We entered the game shorthanded, as 3 of our players (including 2 pitchers) were unavailable for the game. Down to 8 players, we sent out a call to the league for help, and were able to secure a substitute player just a couple of hours before game time.

It was a hard fought battle that went into extra innings, and lasted over 3 hours. I sent to the mound 3 pitchers for the first 4 and a half innings, who had seen very little mound time this season. They pitched well and kept us in the game until our tired ace pitcher - who had pitched the night before came in and shut down the Yankee's bats. Channeling his inner Randy Johnson, he held on until a slap hit past a drawn in infield gave us the victory.

Congrats to the players from this season: Nick C, Josh, Mike, David, Nick 2, Kavon, Chase, Jose, Hunter, Ike, Andres, and our tourney fill-in Kenny. Thanks to Brent, and Leo, my assistants. Also, thanks to all the parents - your kids are all great.

See you next season - yes I know, that's only 19 days from now. (Let's see MLB keep up with that.)

Thanks All !

Thanks to everyone who made it out to Zach's fundraiser last night.

Harry and his staff at Big City Pizza went above and beyond to say the least. The place was beyond packed.

It was great to see so many friends turn out to support Zach. The generosity shown by them, local businesses, and people who had never even met us - but still wanted to lend a hand was amazing.

Special thanks to Dan for his great singing - everybody loved the routine. Also thanks to Brett for taking pictures of the day. (Check out his site www.bretttyler.com)

Thanks also to Mary, Josh and Brooke for running the raffle. (Although Josh did seem a bit miffed to find out it wasn't a commissioned sales position)

Thanks to Celebration Cruises for donating the cruise raffle prize.

I'm sure others will come to mind that I've forgotten - I'll give you your props in the next update...

Hey look I'm still alive!

Man I suck at this updating thing. Too much going on - too little time.

Just wanted to stop in to let everyone reading know that we are having a fundraiser for Zach on November 3rd at Big City Pizza on Sheridan and Douglas Rd.

It's an all day event with proceeds from sales going to the Zach trust account to pay for his medical expenses.

The family will be there from 4-9 PM along with some entertainment, special guests (as if we aren't special enough ourselves...), and a bevy of raffle prizes.

You can all feel free to attend - or you can just send cash of course. (I'm looking at you Bill Gates)

Oh yea - I got a new fancy cell phone to replace the dinosaur I've had for 5 years. I wouldn't have done it, but the old one died, so I didn't really have a choice.

What does this mean to you? Well, now I can send out tweets from my phone... You can follow me on Twitter - username MPS2dad. I'm not really sending out many messages yet - but I'm going to one of these days. Most likely after I return from the procrastination awards ceremony.

Like I say, I've never finished anything before, but now I

Oh how the world has changed

It's been a while, and there is really too much that has happened to remember everything, so I'll just give the highlights...

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.