Thursday, January 24, 2008

Home Sweet Home!

We successfully made it home by early afternoon today. I have to say there is nothing like seeing two cows get a bit frisky with each other to make your trip much more interesting and give you the giggles. But, hey it was 7:00 a.m. and we were in PA.

Just in case you were interested, here is a photo of the inverter that Mike jimmy-rigged for our car which allows to make the trip to Cincinnati. The inverter runs the humidifier that Daniel uses to keep his trachea moist when he is sleeping. Daniel like to play with the blue tube with his feet and has taken to holding it when he sleeps.

And you wonder why Mike is also known as " MacGyver?" All I have to say to that is "Thank God!!"

Daniel was quite happy to be home as you can see.... and so are we!!

Thanks again for caring and we will let you know if we will be heading back to Cincinnati in another two weeks or if we are successful in finding someone more local.

Until next time......

Wednesday, January 23, 2008

Round Two - Done!

Round two is done and is in the record books!

Daniel underwent another stretching today and did well. The GI Dr. was able to stretch Daniel's esophagus to 8 mm, one mm larger than last time, but did say Daniel was no better or worst than two weeks ago. He also mentioned that other than the narrowing in the middle of his esophagus the rest of his esophagus looks fine. The bad news is that the Dr. wants to continue to do these dilations every two weeks but was not comfortable recommending someone closer. So who knows what we are going to do. I guess we have two weeks to decide.

We did get confirmation that the fistula is closed and everything is going in the right direction. Also, it was a fistula and not a cleft despite what the radiologist thought yesterday. I guess radiologists aren't as smart as they think they are. I knew I did not like that guy and I am glad I asked the GI guy.

So that's the update. We will be traveling home tomorrow and get to look forward to a visit from Mike's mom on Sunday. Yeah!!

Until next time....Kisses!!!

Tuesday, January 22, 2008

Swallow Study - Oh My!!

Well today featured a swallow study for Daniel and I am not sure who it was more intense for - Daniel or us. Since we were in radiology Mike and I had to wear lead jackets and poor Daniel donned a patient gown once again. The radiologist was a bit reserved and was not very forthcoming with information. He kinda pissed me off when he asked if we suctioned Daniel when he gets junky. I so wanted to say "No, I just let me kid choke on it" but for once in my life I held my tongue.

All and all the study went fine. We were in charge of holding Daniel down so it was hard to see what was all going on and I have to say, Daniel is a whole lot stronger than we give him credit for. The good news is that he could not see any abnormal connections between Daniel's trachea and esophagus and the fistula appears closed. However, he had to review the images and video before he could give us a firm answer. The tech stated he would dictate his findings tonight so the GI Dr. we are seeing tomorrow should be able to provide additional answers - or so we hope.

Tomorrow features another dilation at 10:00 a.m. Hopefully the last dilation had some effect and the Dr. will tell us that we are moving in the right directions.

Until tomorrow.....

Monday, January 21, 2008

Cincinnati Children's Hospital - Round Two

We successfully made it to Cincinnati again in 12 hours and once again Daniel did wonderful. It certainly helped that we left at the crack of dawn and he slept for the first five hours of the trip. Daniel, however, had no problem settling in once we got to the hotel room....

Mike once again was a trooper and drove the whole way. Nothing really exciting or funny happened on our way here - sorry to say.

Thankfully tomorrow we don't have to be at the hospital till 1:00 p.m so won't have to rush around. Can't say the same for Wednesday since we have to be at the hospital at 8:00 a.m. Oh well!

Until tomorrow.....

Thursday, January 17, 2008

Off to Cincinnati - Again!

Well, we are off to Cincinnati on Monday for Daniel. This trip will feature another swallow study and dilation of Daniel's esophagus. The purpose of this swallow study is to ensure that the fistula, which began our troubles, is closed (It better be or there is going to be one pissed off mother in the room) and to see how Daniel's esophagus is functioning. How they are going to do this study is beyond me since Daniel is supposed to be able to swallow two ounces of barium and since he is not taking anything by mouth this could prove to be very interesting. The study is done in radiology and they use barium to evaluate how things are moving from Daniel's mouth to his esophagus to his stomach and small intestine. The reason they use barium is because it is a contrast material that makes liquids show up on the image-screen as gray or black so you can see how things are moving. We had two of these done while he was in the NICU and hopefully they will let us be in the room to watch the study take place since they are quite cool to see. (Yes, we have turned into medical geeks.)

The other reason why we are going is for another round of esophagus stretching. We are praying that the Dr. who is doing these dilations has someone he trusts more locally and will allow us to see him or her over the next few months. The reason being is that these "stretching sessions" must be done every 10 to 14 days to be effective and the reality of us going back and forth to Cincinnati every two weeks is a bit insane. Hopefully he will be ok with us going to Philly or to somewhere in New York. Please keep your fingers crossed for us. If not, one of us is moving to Cincinnati much sooner than she thought.

As always, we will keep you posted as it is an adventure that seems to never end.....

Eight Months and Counting...

Believe it or not Daniel turns EIGHT months old tomorrow. Time does fly by!! During this past month, Daniel has mastered sitting up by himself when placed on his bum and is beginning to make motions of crawling. (YIKES!!) He is also enjoying dropping things and grabbing our hair. (Who knew little hands could hurt so much?) Speaking of little hands, Daniel has become quite proficient at grabbing things and has pulled the pad out from under his trach quite a few times and has started to grab for his trach when he is pissed off. Just too much fun for one person....

All and all he continues to be a very happy little boy and continues to make us laugh.

Here are a few of our favorite photos from this past month.....

"I know - I am just too cute for words"

"Kiss, Kiss, I just LOVE my Fishy"

"Just chillin on a Sunday Morning"

"You called?"

After a hard day of play, I look like this.....

Enjoying a 50 degree day in January....

We hope that these photos have brought a smile to your face and the first month of 2008 has been a good one.

Thursday, January 10, 2008

Cincinnati to New Jersey - All in One Day!!

Just in case you were ever wondering if you can make it from Cincinnati to New Jersey with a seven and half month old in one day - you can. Though we left at 7:30 a.m. and arrived in Mahwah at 7:20 p.m. a bit tired and stiff, we did make it home in one piece. Daniel did wonderfully sitting in his car seat during our marathon trip home but did nap quite a bit, as did mommy. Too bad for Mike since he once again had to drive through PA by himself.

KC, our dog, was quite happy to see us but once again she refused to give us kisses even though we left her in very good hands with Mike's sister, Angie, and friend Brett for the week. We will see if she warms up as the week progresses.

Thanks to everyone who have left messages on the blog and for all the prayers, phone calls, and positive thoughts you have sent our way this past week and throughout our adventures. Having friends and family like all of you have made this crazy experience so much more tolerable and we can't thank you enough. Thanks to a very dear friend of mine who introduced me to the movie "It's a Wonderful Life" in college, I have to quote George Bailey at this moment in time - "No man is a failure who has friends." So thanks and we will keep you updated as the weeks progress.

Daniel turns eight months old soon so look for our update and our favorite photos over this past month in a couple of days.

Kisses ........

Wednesday, January 9, 2008

Cincinnati Children's Hospital - Day 3

So all the tests/evaluations are done!! And boy did we get a ton of information regarding Daniel's esophagus and airway. I think our heads are still spinning!! I do have to say that once again these folks have been "spot-on" regarding timing and staying on schedule. Not only did Daniel go into surgery on time, the Drs. came out in an hour like they said they would. Unbelievable!!

Overall we got good news about Daniel and some very interesting pictures of his esophagus and trachea. We finally found out that some of the issues Daniel is facing are due to his fistula and surgeries, which produced scarring, while others were due to the fact that he was born with a TE fistula and an airway that was shaped like an oval rather then a nice round circle. Anyone of these situations alone might not have been a big deal but thanks to the fact that they are all combined has lead us down this interesting and crazy path.

We did not have to stay overnight because Daniel's esophagus was too narrow to get the necessary scope down, which we kinda had a feeling would be the case given our discussion with the GI Dr. yesterday. The GI Dr. did do a dilation today which in essence is a fancy word for stretching his esophagus. Daniel will have to undergo additional dilations over the next couple of weeks and months in order to improve his esophagus and swallowing which will allow him not to aspirate into his trachea and lungs before the Drs. repair his airway. How long will that take, who knows but they were able to stretch the upper part of his esophagus to 9 mm and the middle to 7 mm. To put it into perspective, Daniel esophagus should measure 11 mm. So we have a bit to go.

As for his airway, the Drs. believe that they can fix Daniel's airway and he can be decannulated within the next year or so. (Decannulation just means taking the trach out for good.) The good news is that they are not fixated on having him turn one or what time of year they do the surgery. Dr. Cotton, who is the reason why we came here, was very genuine and the first thing he said to us was "you have had an interesting road with this little boy." Though he did not spend a lot of time with us, he was very encouraging and was totally confident that Daniel can be decannulated. However, they will not do anything until Daniel's esophagus is larger and there is no risk of aspiration.

In regards to repairing Daniel's airway they believe it can be done in one surgery and they can take the trach out right then and there. The problems there is that Daniel will have to undergo another open wound procedure which will leave another scar. The other problem is that should we do the procedure Daniel would be in the hospital for a month afterwards. So lots of decisions to be made in the next couple of weeks.

Daniel handled the procedures like a trooper. He came out of surgery quite well and knew when we put is PJs on he was going "home." He also flirted with the nurses before and after the procedures and once again won the hearts of the nurses.

We also had a couple of signs again today - the nurse who checked us in was named "Cindy" and the nurse who took care of Daniel in recovery was wearing frog scrubs which her husband had made for her due to the fact she had some troubles with her son. And when we came out of the parking garage we were by the chapel. Can't explain it but I am taking it to mean we were meant to be here.

Thanks for caring and reading. We will keep you posted as we move forward.

Tuesday, January 8, 2008

Cincinnati Children's Hospital - Day 2

For a day that was not supposed to be very informative, it sure was. Today featured a GI and pulmonary consult and a chest x-ray. The results of the x-ray were good and within normal limits so that was a good thing. I think I jinxed us by saying everyone was on time since we did have to wait a bit for the consults. Our appointment was at 3:00 p.m. and we finally left the hospital at 6:15 p.m. and closed down the pulmonary clinic. However, once again the folks were fabulous and really took their time in explaining what was going to be done tomorrow and some of the issues that may be facing Daniel. The pulmonary guy we saw was really great and helped provide some possible scenarios regarding repairing Daniel's airway. Tomorrow should prove to be really interesting and has the potential of going so many different ways I am not sure what to hope for. No matter what we will have answers.

Daniel did fantastic once again. As you can see, he was having a ball in the exam room despite a bit of a wait...

Today also featured another weird sign.... as we were waiting to be called into the pulmonary clinic I was reading who was on staff and the name listed under their business manager was Thomas Clegg, which is my brother-in-law's name. Again, not sure what it means but I am taking it as a good sign that we were meant to be here and good news is heading our way.

I will try and blog tomorrow but since Daniel is scheduled to stay overnight in the hospital, not sure if I will be able to. We will see!!

Until tomorrow or Thursday......

Monday, January 7, 2008

Day One - Cincinnati Children's Hospital

We made it to Cincinnati without any issues yesterday afternoon. I do have to say Ohio is not much different than PA - not much to look at and very flat. Daniel once again did great in the car but did get a little anxious on the last hour of the trip. Who wouldn't after five hours in a car.

So today was our first day at the hospital. I do have to start off by pondering why all Children's Hospitals are located in crappy areas - the Bronx, Philly, Ciny - however, the people have been wonderful so far. The hospital is huge and thankfully this time we brought Daniel's stroller - we forgot it the day we went to Columbia - lesson learned. The other thing I have to say is that these folks are "spot-on" regarding appointment times. We had our first appointment at 8:30 a.m. and we were in an exam room by 8:35 a.m. For our second appointment, which was an anesthesia consult, they came looking for us since we started chatting with the registration individual. Can't ask for more than that. Hopefully this efficiency will continue as we have two more days of consults and testing.

This morning brought a functional endoscopic evaluation of swallow study. This study, also called a "Fees Study," allowed us to find out how Daniel swallows and if he kicks stuff into his trachea. It was quite a cool study since we were able to see down his esophagus via a video camera in real time. They used green food coloring to track Daniel's saliva so they could evaluate his ability to swallow. As you can see Daniel had a little issue with the food coloring. And yes we took him out of the hospital looking like this.....

The study was also very cool because it was the first time we were able to see Daniel's vocal cords and how much they were moving. The Dr. who preformed the study was great and he was from New Zealand so Mike and I have some fun new phrases regarding Daniel's issues. The Dr. also did a fabulous job in explaining why the H-type TE fistulas are problematic to repair and why vocal cord paralysis is possible when repairing them. He totally made us feel better regarding Daniel's issues.

So what did we find out?? Daniel can swallow but there appears to be some narrowing in his upper esophagus, which we knew. The question that remains is how severe is it and what needs to be done to fix it. Most likely it will be a dilation or two but we will know more after Wednesday's procedures. As for his vocal cords, his right one is not moving at all and his left one was moving. And I quote from the Dr. "pretty good", however the vocal folds were not opening wide. This led the Dr. to believe that there might be some post sub-glottis scarring thanks to all the intubations Daniel went through, but he stated that would a good thing as that maybe easier to repair. However, he would be able to get a better read on Wednesday.

The afternoon featured an anesthesia consult which was uneventful but at least we know where we are going on Wednesday. Tomorrow features a chest X-ray and a gastroenterology and pulmonary consult. And Wednesday brings all the answers - so we hope. Daniel will undergo a number of scopes, which thankfully he will be a sleep for, and will have to stay overnight so they can determine how bad or if at all he has reflux. The good news is that by Wednesday we will have a possible plan of action and that is what we have been searching for.

As I mentioned in "On the Road" maybe the tunnels were a sign that we will be getting the answers we are looking for, we experienced a couple more today. When registering for "same-day surgery" and anesthesia consult the registration individual gave me a choice of a gift for Daniel. The first item was a frog and Mike's dad had a famous saying "when you have to eat a frog there is no sense in sitting and starring at it, just as well get busy" so of course I had to take the frog. The second was the woman who did the anesthesia consult was named "Cindy." Not sure what they mean but we will take them as positive signs.

All for now.....

Saturday, January 5, 2008

On The Road to Cincinnati - Day 1

Well, we have made it to New Stanton, PA which is just outside Pittsburgh. Daniel has been a trooper and seems to be enjoying his first road trip adventure. Actually the little bugger stayed awake for the first four hours of our trip. I guess he thought there was something to see in the God-forsaken State of PA. After seeing everything there is to be seen in PA and realizing there wasn't much more, he sleeped for the last two hours. Smart Kid!

So far on our trip we have seen gas go from $2.92 in NJ to $3.22 in PA. We will see what it is in OH. (Though we haven't had to fill up yet.) We have also seen some guy moving his lawn in the dead of winter and some very weird tractor trailers. (Remember we are in PA and there is really NOTHING to see in PA.) We have also gone through three tunnels. Who knew that PA had so many tunnels?? Maybe it is a sign that we are finally going to see/find the light at the end of the tunnel. Tomorrow will bring a few more hours of driving and a new state for Daniel.

Enjoy your Sunday!!