Wednesday, April 30, 2008

Just Hanging Out Recovering!

So we were supposed to move to the hospital's airway floor yesterday but apparently they did not have room for us in the inn. Daniel continues to recover but he is still pretty groggy from all the drugs he was on last week. They have begun his withdrawal medication and so far he is doing well with it. We will see if we see more signs today of it today since the medication is stretched out over eight hours verse six.

We did get Daniel up to play yesterday. As you can see, he still looks pretty stoned but he is trying.

Hopefully we will move to our "new home" sometime today. We expect to remain in the hospital for the rest of the week given Daniel's drug withdrawal and are hopefully that we will be out of the hospital by the weekend.

Thanks for reading and for your comments!!! We really appreciate them!!

Monday, April 28, 2008

It's All Over (For Now)!!

All we have to say is that Daniel is a Rockstar (like you did not know that already.)!! He went down to the OR for his scope earlier and by exactly one week to the minute he lost his breathing tube and started breathing on his own. Though we can't really hear him cry quite yet he is making notions of doing just that and sounds a little like an alien from Star Wars. He is starting to cough up all the crap that has been sitting in his throat for a week. He is a bit sleepy and has not really come out of his "comma like state" as of yet but he is doing great.

Here are his first photos with no trach and no breathing tube looking a bit stoned......

According to the Drs, who were all smiles when they came and spoke to us, his airway looked great and the grafts have started to assimilate into Daniel's airway. The pictures they gave spoke volumes into what they did and how terrific his airway looks. As for his arytenoids, the Dr. is not concerned at all and they also looked 100% better then they did last Monday. They will continue to watch this area as well as how he does controlling his airway for the next 24-hours. After that we will move down to the Airway Floor which we will be for the next week or so. This is just for monitoring purposes and to "detox" him.

Not only did this surgery fix his airway it allowed Daniel to cut his front teeth being on morphine. What better way to cut your teeth??

So mark today in your calendars as the day the Duker's life became a bit more normal. Thanks again for everything!! Kisses to all.....

Today Is The Day!

Today's the day we find out whether or not the grafts took and if Daniel is ready to lose his breathing tube. Over the weekend Daniel did very well and behaved himself nicely. In preparation for the scope this afternoon the Drs. switched his sedation medication and he continues to sleep pretty soundly. Given his air leak he sounds like he is snoring so it is pretty funny to listen to him. Here is what he looked like early this morning. Could the kid be more comfortable? (In a manner of speaking.)

Given the large amounts of drugs Daniel has been on (as one of the Drs. stated "elephant doses") we are expecting him to go through some withdrawals. Given this, the Drs. have started a methadone wean on him. Yes, once again this child is on methadone. I am just hoping that we are off of it before we leave the hospital so I don't have to ask for it again. Not an experience I really want to relive again. The "funny" thing is that by the end of this experience Daniel will have "experimented" with narcotics, sedatives, muscle relaxers, and anesthesia. At least this way we can tell him he does not have to try drugs later in his life since he has already been on all the "hard core" stuff even before his first birthday.

His incision sites look great. The site on his chest has almost scarred over as you can see by the photo. The one on his neck, well, we haven't been able to see it yet given his puffiness and double chins. His nose continues to heal and they now think it is just superficial.

Once we know more this afternoon we will let you know. Within a couple of hours, our lives as we have known it with Daniel will be changed forever. Something definitely to look forward too. Until later......

Saturday, April 26, 2008

Wiggle Worm Daniel & Mean Mommy - All In One Evening

All we can say is that Daniel is one little wiggle worm. He spent most of last night and this morning trying to break out of his sedation. I mean who would not want to sleep for five days straight?? Daniel's breathing tube continues to stay in place - thankfully - and he continues to do what they need him to do.

They did have to do a sonogram on Daniel's left arm this morning because of some swelling and they wanted to make sure that the PICC line was still ok. We are waiting for those results now and are hopeful that all is ok.

We are on for 12:45 p.m. on Monday for his scope and downsizing of his tube. There is a possibility that the Drs. might extubate him in the OR due to the large air leak he has acquired. Believe it or not an air leak is a good thing in this situation. So we will see what happens on Monday.

And "Mean Mommy" finally made her appearance last night and this morning. Though I never thought I would have the nerve to do it I asked for the removal of one of Daniel's nurses. Mike and I had a feeling last night as soon as she came on duty she was going to be a problem and we were right. Not that she did any harm to Daniel, she just was not attentive at all. With only three days left and one past self extubation already behind us, we just had to do it. Oh well - haven't we all gotten yelled at once in our life?

So we continue to move forward and keep our fingers crossed that the weekend will be uneventful and things will go smoothly on Monday. Until then.....

Friday, April 25, 2008

So Far So Good!

Thankfully Daniel has been behaving himself since yesterday's "fun." He continues to do well and the Drs. tell us that though the "unplanned extubation" was not the ideal we should not be too worried that damage was done. Daniel continues to show no signs of infections and has remained fever-free for two days. YEAH!!

He continues to be a bit puffy but the medication they have placed him on appears to be doing the trick. His feet are finally beginning not to look like Fred Flintstone. His nose continues to be bit concerning but we continue to keep our fingers crossed that it will heal.

We will find out this weekend what time they will do the scope on Monday. We can only hope it will be in the morning.

So, so far so good!! Thanks for reading and for caring!!!

Thursday, April 24, 2008

Daniel Does It Again!

Though we can't believe we are saying this but somehow this afternoon Daniel managed to knock out his breathing tube. In medical terms he extubated himself. Not a good thing no matter how you term it since the Drs. had to re-insert Daniel's breathing tube outside the operating room and every time this happens, as you can expect, you can cause damage to the trachea and the surgery site.

Just for perspective, when Daniel was in the NICU he probably extubated himself at least one time for every time he was intubated. How it happened, we haven't got a clue since he is pretty much out of it and his hands are in restraints. All we have to say is that once this child is back to his old self, we are in TROUBLE!! Daniel continues to keep things interesting for us!!

Hope your day is less exciting then ours........

Drugs and Daniel

Here we are at Day Three and so far Daniel continues to be doing well. The Drs. did change his sedation medication a bit yesterday to stop Daniel from wiggling. As one of the Drs. stated on rounds "He has two speeds - asleep or trying to pull himself off the bed." Leave it to Daniel. Given this Daniel is on a low dose of muscle relaxers and in a sense is paralyzed. He is still on schedule for a scope on Monday and downsizing of his breathing tube. Sometime on Tuesday the Drs. will pull his breathing tube and Daniel will start his drug withdrawals. We hope that sometime during this time we will be able to hear Daniel cry.

If you noticed that Daniel looks a bit "puffy" you are right. Since he is on so many drugs and he is not moving, he is retaining fluids. They started today to give him a medication to relive the fluids and it appears to be working great. His fever is down and continues to show no signs of infections. (Thank God!)

All this bed rest has "added" to Daniel's crazy hair issues. Day three and it is all over the place....

Daniel's ENT Drs. pulled the drain that was in his neck this morning without any problems. His incision sights appears to be healing - still red but it is excepted. So all and all, things are moving along nicely.

Last night we went to a Cincinnati's Reds game courtesy of the hospital. The seats were fabulous and Mike taught the kids in our box about mound ball. We unfortunately got lost coming back to the hospital for an hour. Happy Day for us!!

Wednesday, April 23, 2008

Post-Op Day Two

Daniel successfully has made it through the first 24-hours and continues to hold his own and heal. He still has a little fever but so far his lab results have come back negative for any infections. They have placed him on some broad spectrum antibiotics to cover anything that might be brewing. We are keeping our fingers crossed that nothing brews.

Yesterday afternoon Daniel received a PICC line in his left arm to insure that he continues to receive all his medications intravenously. This was the same type of line Daniel had when he was in the NICU. We were able to join Daniel for the procedure and we have to say it was pretty cool to witness. Though we had to don surgical masks and hats the ladies who did it were fabulous. The line will stay in until they pull his breathing tube next week.

Daniel has acquired a bit of a blood blister on his nose. We are hoping it is just a bruise and with time will disappear. He definitely looks like "Heat Miser" now.
We will remain in the hospital until late next week. The good news is that the weather here is beautiful and all continues to go well.
Until next time......

Tuesday, April 22, 2008

Daniel is Trach Free!

So we apologize for not posting this update earlier but as you can expect the last day and a half has been a bit of a blur.

So here's the good news - the doctors were able to complete Daniel's reconstruction surgery without any major problems and were able to remove his trach. The procedure did take approximately three and half hours and they did have to create an anterior (front) and posterior (back) graft in Daniel's trachea. Currently Daniel has a breathing tube up his nose, which will stay there (hopefully) for a week. Daniel is also pretty sedated at the moment and should remain like this until Monday. The nurses have already determined that Daniel is a little manic and figured he would fight his pain medications. They were right.

This is what Daniel looked like post-surgery yesterday afternoon. The red patch is where they did the rib graft while the white bandage is where they did the reconstruction surgery.
Here is how Daniel looks today. He does have a slight fever which is why he has the towel over his head.
One of the doctor's concerns is that Daniel's arytenoid cartilages (a pair of small three-sided pyramids which form part of the larynx, to which the vocal cords are attached) are quite large and don't move very well. The reason that this is a problem is that once they pull the tube, Daniel may still have a little bit of a problem moving air. They are taking a wait and see approach until next Monday when they pull the breathing tube. Their hope is that once they pull the tube Daniel's airway will be fine and can compensate for the large arytenoids. If not, the doctors will go back in and shave a bit of the cartilage away. So we are in a wait and see mode.

Other than that we are doing well and are setting into our "new home." Thank you for your prayers and well wishes. We can't thank you enough!! Love You!!

Sunday, April 20, 2008

How Daniel Spends His Time in the Car

Here's how Daniel spends his time in the car -

Friday, April 18, 2008

One More Month to the Big One!

With just one more month to go before Daniel celebrates the "Big One" we celebrate reaching month 11 today. This month has been a big one for Daniel as he has started to "cruise" around holding the furniture and has completely mastered pulling himself up. His top four teeth are just about ready to break through and he is still working on crawling. Here are a few photos from this past month which we hope make you smile.

"How Fast Can I REALLY Go?"

"Being 11-Months Old is Tough Work!"

"What Can I Sing for You?"

We leave tomorrow for Cincinnati and Daniel's reconstruction surgery. The actual surgery takes place on Monday, April 21st at 10:30 a.m. We expect to be in Ohio for about four weeks and are hoping that we are back home in Mahwah for Daniel's first birthday. Feel free to check our blog for updates.

Enjoy Spring as it has finally sprung here.

Wednesday, April 9, 2008

Thursday, April 3, 2008

Puppy Love...

Mike's sister Angie came for a visit last Saturday and brought Daniel a new "puppy" as an incentive for crawling. As you can see, he loves his new "puppy"....