happy birthday Tyler

Another birthday for Tyler!

He's 24-years old now. Every day we've spent caring for him has been worth the little smile on his face.

Unfortunately he had to spend this birthday in the hospital.

However, in true Tyler fashion -- he had all the female nurses doting on him all day.

Just after lunch I brought in a yummy chocolate cake with whipped cream icing. The doctors, nurses and I sang "Happy Birthday" to him and he lit up like a Christmas Tree.

He kept pointing to himself just to let everyone know whose birthday we were celebrating.

Earlier in the day -- Craig and I started at the hospital to get his special day off to a good start.

This photo is of Tyler hamming it up for the camera. Of course his buddy - Wrinkles - had to be in the picture with him.

small gains

First of all I need to apologize for not posting for a few days. The computer at my house hasn't been able to receive a signal from Cox Communications.

Tyler was home for a day -- experienced another severe asthma attack and had to come back to the hospital.

Between the doctors, nurses, respiratory staff and Craig and I -- we're racking our brains trying to figure out if something in our home is triggering the asthma.

Well -- apparently not. Last night while Craig was at the hospital with Tyler -- he suddenly experienced another asthma attack. Staff members quickly put him back on C.P.A.P. and he came out of it quickly.

That shoots down the 'environmental' issue. The doctors were actually thinking Tyler could be allergic to my kitties and they would have to go away. :(

Well since there aren't any kitties in the hospital -- Allie and Bernie will live to see another day in the Bell house.

Now we're talking about a home-ventilator program to assist him as needed. If he needs C.P.A.P. at nighttime -- he'll get it. If not, he'll stay on the mist collar.

Either way he'll be home with us were he belongs.

The photo shown above was taken during a 'play' session between Christi and Tyler. Christi would often times dress Tyler up in girl clothes. Obviously Tyler didn't give a rip. As long as someone loves him -- he's a happy boy.

being naughty

Well Tyler certainly surprises us all.

The past couple of day in I.C.U. have helped him to become stronger, gain stamina and regain some of his strength.

In addition, his naughtiness has returned. That is the sure sign that he is on the road to recovery.

He has found the buttons on his bed which allow the head and the foot of the bed to rise and fall. This is certainly amusing when anyone is in the room to watch him. The nurse call light is also a great source of entertainment.

As I was sitting with him today I couldn't figure out why the nurses kept returning to the room asking what we needed and if everything is OK.

Then I spied the little naughty hand playing with the call light. Just as he was ready to push the button I asked him 'Tyler - what are you doing?'

Of course he offered up his naughty hand as proof, once again, that he wasn't responsible for the mayhem. It was the naughty hand that got him in trouble.

It's nice to see the naughty hand return.

tyler, tyler, tyler

For all of you who are following this blog to keep track of Tyler's progress -- thank you.

The photo shown above was taken during a visit to Tucson to visit his sister Christi. Apparently he didn't want to sit next to her.

Tyler is doing better today. The C.P.A.P. machine was turned off this afternoon and the mist/oxygen collar was put back on. He was breathing very well throughout the hours and during a small nap.

As he was resting I was watching his sleep and wondering 'why Tyler' -- why does this sweet little guy have to endure so much? Well, I'll never get the answer to that question.

However, Tyler always seems to come though all of these situations with a smile on his face.

I was also wondering why this family? We all care for him, watch over him and keep his needs first. Just then a medical helicopter was landing on the rooftop above us. Tyler woke up and smiled because he likes airplanes and helicopters as much as I.

Then it occurred to me. Every time a medical helicopter flies overhead another family is affected my a medical crisis. Every ambulance that goes screaming by your car or house another family is affected. Every car accident will affect another family. And so on and so forth.

So, it's not just our family. It's every family. It's the families of the recent plane crash in the Atlantic Ocean. It's families throughout the world who are affected by medical events which will change the course of their lives forever.

To have the course of ones life changed isn't necessarily for the worse. Tyler is a joy to be around and will always give you a smile and a hug.

another setback . . .

Well Tyler made it home two days before having another serious asthma attack. He seemed very happy to be in his own bedroom playing with his familiar toys.

He's back in ICU on C.P.A.P. which the doctors feel will be short-lived. Tyler seems to be experiencing more anxiety or panic attacks when he is short of breath. This seems to compound the problem by making the attack seem worse for him.

We'll keep by his side and talk him through his little issues. He's happiest with his favorite dog 'Wrinkles' and his favorite story 'The Puppy Who Wanted a Boy."

Many of the doctors feel this is just a speed-bump in the road but will make it through with just a bit more time.

Keep hopes up and send well-wishes for Tyler.

the sweet sound of homecoming

During the past 31 days my focus has been to get Tyler better in order to bring him home. Well today was the day that my wish was granted.

Of course there was the usual 'hurry up and wait' scenario when trying to get Tyler's posse of doctors together in order to write discharge orders, decide on home supplies, amount of medications to continue with and how much care he would require at home.

Blah, blah, blah. Just send the kid home for goodness sake -- I know what to do. I've been doing this for nearly 23-years and I think I can continue on.

So Craig arrived just after 1 p.m. this afternoon for the final push to get everything out of Tyler's room. The only item that was missing was the portable oxygen needed to supply Tyler during the drive. Of course there is a portable tank sitting in Tyler's closet. Craig brings it with him for the drive home.

In true Craig fashion -- as he's lifting Tyler into his wheelchair -- the tank of oxygen falls off the back of the chair. I immediately hear a loud hissing sound coming from neck of the tank. Oops. The tank is now broken. Craig quickly places his thumb over the hissing sound in order to not allow anyone else in the room to hear it. If there is no oxygen to drive home with Tyler -- he doesn't come home with us.

We very quickly head for the elevator to load Tyler into the van for the quick five minute drive home. We're not going to let a little broken oxygen tank stop us from bringing him home finally.

We arrived without incident. He's home. He's safe and he's happy.

good news from the doctor

Tyler can really sleep through almost anything.

This afternoon the pulmonary doctor arrived with good news. Tyler's large sized trach is being replaced with a smaller trach. This is the next step toward going home.

Tyler must get get used to breathing with an adult sized trach. He's had a pediatric size for years now.

As the doctor was talking to us about Tyler and the past five weeks of hospitalization -- he said "Your son has been the most challenging asthmatic I've ever experienced. He has pushed me to my professional limit."

I'm not exactly sure if this is good news or bad news.

Nonetheless -- I'm just very happy that Tyler has done as well as he has given the circumstances.

Tyler got his speaking valve put back on today and he has really enjoyed talking to everyone. "Hi mom" were the first words out of his mouth. Closely followed by "ga-ga."

So as the doctor is giving us the good news about a possible discharge date -- Tyler seemed immune to everything. As long as he has grandpa in the room with him - that's all he needs.

Well, grandpa and a good nap.