Friday, February 29, 2008

Airway Surgery is a Go!!!!

Well it is official - if all goes well Daniel will be trach-free by his first birthday!! We got the official word today that Daniel will be having airway surgery on April 21st.

So what is "The Plan" and what will be done on April 21st? Well the plan is for Daniel to have a procedure called Single Stage Laryngotracheal Reconstruction. Single stage laryngotracheal reconstruction is a surgery in which the airway is made larger by placing a graft in the area that is narrowed. Most grafts are made of ear cartilage, thyroid cartilage, or rib cartilage. In Daniel's case his graft will come from his rib. The incision for the graft will be about one inch and will be around the breast area. The ENT doctor will place the graft in the back (posterior) of Daniel's airway in order to make the airway larger. The graft will grow with Daniel and should not have to be re-grafted in the future. The main incision will take place in the skin folds across his neck, approximately where his trach is now. At the time of the surgery, Daniel's trach will be removed and the hole in which the trach tube now sits will be closed.

A breathing tube (also known as an endotracheal tube or ETT) will be in place through his nose after the surgery. The breathing tube will hold the airway and graft in place while it heals so it does not shrink back down. It is expected that Daniel will have his ETT tube and be in post-op for approximately nine days. During this time, he will be sedated (once again) to help prevent him from pulling out his breathing tube, which we know he is an expert at.

The main surgery is followed by a series of scopes (or Microlaryngoscopy and Bronchoscopy) in the operating room to check the airway for healing. The scopes will be done a week after surgery, prior to discharge and for two weeks after discharge - thus our need to stay in Ohio for about a month.

For more information regarding single stage laryngotracheal reconstruction feel free to visit:

We head to Ohio on Tuesday to make sure that Daniel's esophagus is staying open. (Hopefully it is!) Well keep you posted as the weeks progress and move forward with Daniel.

Thanks again for caring and reading!!

Sunday, February 24, 2008

Daniel's First Sled Ride

The weather finally cleared enough for us to take Daniel for his first sled ride. He wasn't too happy with the winter gear at first...

But he got into it and was ready for his first ride...

Saturday, February 23, 2008

Do You Hear What I Hear?

Boys and Their Remotes!

What is with boys and their remotes? Daniel was sure determined to get ours.....

Friday, February 22, 2008

Daniel's First Snowman

So we finally got our first "Big" snowfall on Friday. Though Daniel and I stayed in the house all day Mike made Daniel's first snowman after he finished shoveling the driveway when he got home from work.
Leave it to Mike to make the top hat out of snow.

Hopefully tomorrow we will be able to take Daniel outside so he can experience the snow first-hand.

Thursday, February 21, 2008

Good News and A Lunar Eclipse!

Good news - Daniel's dilations are technically done for now!! According to the Dr. Daniel's esophagus has stayed open enought that he does not think we have to continue with the two week stretching program. He did state that he will continue to monitor Daniel and does expect that he will have to do another stretching in the future but for now we are good. This is really good news for another reason - we can now proceed onto the next step which is airway surgery and the removal of Daniel's trach.

The question that remains is how soon will we be able to do the surgery. For that we have to wait until next Wednesday when the group meets and discusses Daniel's case. We did meet with the nurse who is assigned to us and she stated she would call us next week with "The Plan." What that "Plan" is I am not too sure but I do know that Daniel will have to undergo another scoping of his airway to determine what type of airway surgery they will perform. Other than that, I am not too sure how we proceed. The other good thing is that Daniel's GI Dr. did state he would "tag-team" with the Airway folks in an effort to monitor Daniel's esophagus and do any stretching during those visits. Stay tune since the next couple of weeks and months should be very intereting.

Daniel enjoyed his first lunar eclipse last night since we were lucky enough to be traveling home during it. Mike was very excited and I do have to say it was pretty cool to watch. Hey, at least we can say we saw it since another one is not expected in 2012.

Tomorrow features Daniel's nine-month check-up with his pediatrican. According to the scale in Cincinnati he is 17 pounds and 25 1/2 inches long. I am not too sure if that weight is accurate so we will see what they say tomorrow.

Thanks again for caring and we will keep you posted on our "crazy" adventure.

"Here's Looking at You!"

Tuesday, February 19, 2008

Another Trip to Cincinnati!

Well our Angel Flight did not work out for us this time around so we ended up driving again. Angel Flight was awesome and ended up getting us pilots to fly us both ways but the first flight home had a weight restriction of 62 pounds. Given the fact that Daniel's "must-have" equipment weights 40 pounds, it got kinda tight. Also, the weather looked iffy for Thursday, when we would be flying home, so we decide to drive. I don't know if it is because we are getting used to the drive or what but the drive wasn't half bad today. Even Daniel had some fun in the car...
Important "mommy-tips" for all those mommies out there:
1) Be careful when changing a baby in the back seat of a car. Daniel "christened" me twice in one stop by peeing and pooping on me. I know I am a mommy but come-on!
2) Even when the hotel tells you they have cribs, bring your own if you can. Whether it is a pack and play or a portable crib - Bring your own. Guess I should have listened to Mike.
Daniel is scheduled for another stretching tomorrow. Hopefully they will just look down his esophagus but we will see.
Until tomorrow...

Monday, February 18, 2008

Daniel and His Jump-A-Roo

The things that make kids happy. Watch Daniel as he gets his "groove on" in his Jump-A-Roo.

Where Has The Time Gone - Daniel is Nine Months Old!

Somehow Daniel turns nine months old today. I think Daniel is surprised at that fact as well...

It is amazing how quickly time has gone by. Daniel continues to make motions of wanting to crawl as well as trying to stand up. He is starting to make little "hooting" sounds when he is really excited. It is very cute and when he realizes he is doing it he cracks himself up even more.

This month Daniel enjoyed some playing time with Daddy...

Making a new friend named Michael who is five months old. Michael is the son of my friend Erica.
As well as being silly with the blanket my niece Kyala made for him.....

And in an effort to "Think Spring" we tried to get Daniel to try on some sunglasses...

"I am thinking about it..."

"Do I really have to wear these things???"

We are off to Cincinnati tomorrow for another stretching procedure and are hopeful that the news is good. Actually we are hoping that Daniel's esophagus stayed opened and the Dr. does not have to do another stretching procedure on him. We are not sure if we are driving or flying as of yet since Angel Flight did come through with a flight there but was working on one for coming back. We will see what the day brings. Until next time....Kisses

Thursday, February 14, 2008

Thursday, February 7, 2008

25 Hours of Driving, 20 Minute Procedure = Good News

So those of you who thought we were crazy to drive straight through on Tuesday night into Wednesday morning to Cincinnati and drive back home the same day - you were right. Though the trip down was not too bad - other than the thunderstorms - the trip home as a different story. Oh well, live and learn.

So what did we learn from our marathon adventure? We learned that the last two stretching procedures Daniel underwent have helped and the Dr. was able to stretch his esophagus to 10 mm this time from 8 mm. It also appears that Daniel's esophagus has stayed open and that the top area of narrowing is gone. According to the Dr., the stricture (narrowing) appears to be more elasticly rather than a hard scarring which is a good thing since it usually does not tear as easily. The bad news is that since it appears to be more elasticly, it could narrow back down over the next two weeks. If it does, they may look to inject sternoids into the site to enable it to stay open. As you recall, the Dr. goal is/was to open Daniel's esophagus to 10 or 11 mm so we are technically there. We now just must hope and pray that his esophagus stays open.

The other good news we received was that the since the procedures are going well, it might not take as long as they originally thought. Given this, they want us to do the next two procedures in Cincinnati since the next couple weeks will determine how fast we move forward.

Daniel once again was a trooper and could not wait to get out of the hospital. Thankfully he slept a lot and had some fun with his air tube in the car....

Thanks again for reading and for caring. We will keep you posted as the next couple of weeks unfold.

All the best -

Sunday, February 3, 2008

A Visit from Nana

Mike's mom came in this past week and Daniel got to spend a whole week with Nana at home. We only had one Dr. appointment this week which was a good thing. Actually it was a very good thing since the appointment was with the Dr. who monitors sleep apena and oversees the use of Daniel's apena monitor. For those of you who did not know, when Daniel came home from the hospital he was sent home on an apena monitor as a precaution. The good news is that the Dr. saw no issues with Daniel in this area and took him off the monitor. Daniel also has outgrown the developmental need for it and we are excited cause it is one piece of equipment out of our house and one less piece of equipment we have to lug around.

The visit with Mike's mom was awesome and after a day and half Daniel finally warmed up to Nana and had a great time with her.

He even waved goodbye to her as she left this afternoon. Nana took some awesome pictures of Daniel as you can see:

"The New Posterboy for Triacinolone Acetonide Cream"

"Do I REALLY Need to Take a Bath?"

Playing in the Sunbeam
We are off to Cincinnati on Wednesday for another stretching. Hopefully the news will be good this time around. We are keeping our fingers crossed that we will be able to work with Angel Flights to start flying out in another two weeks.

Until next time...