Still waiting to schedule...

I spoke with the nurse practitioner again this past Thursday and we are still waiting to schedule Carson's first surgery. She has a few more scheduling details to check.

Good news is that they will be able to combine the relocation of his G-tube site along with the airway procedure. This means we will also have to schedule a clinic visit with the surgeon that will work on the G-tube. This is one thing the nurse is checking on...we are hoping and praying that the surgeon will agree to having this clinic visit the morning of the surgery instead of the day before. It would be awesome if he would agree to do this because that means we would NOT have to get a hotel for one night (which also means we would not need to unload & then reload 'our whole house' as Preston puts it).

Other good news...the suspicious area that they saw on the MRI is likely a hemangioma that Carson has just below his trach. We discovered this only from more questioning, on our part, about the size and location of the 'suspicious' area. We were VERY happy about this...a hemangioma is a cluster of blood vessels just below the skin. These areas typically go away as the child gets older but they are still going to check it out to make sure.

So, this first surgery could include a one to FIVE night stay, depending on how involved the removal of the granulation tissue above his trach is. We will not know this until the actually procedure is performed. Of course, we are hoping for a shorter stay but will be prepared for 5 nights.

We have completely switched over to a new formula for Carson now but he still continues to vomit (probably once a day on average). I just feel horrible for Carson when this happens so often. No one can give us a good reason WHY this is happening. I plan to talk to his dietician in the coming days but we may experiment on our own...less volume or skipping a feeding at night to allow his stomach to empty completely. Who knows.... prayers are appreciated : )

Otherwise...things are going well on the homefront. The boys are getting bigger and bigger. Carson has really started jabbering more in the last couple weeks. And they continue to interact more and more. Kellen motors right along and loves to carry anything he can find (doesn't matter if it three times his size). Carson is getting alot faster, whether it is crawling or running in his walker. They took their first bath TOGETHER today...this was big for us. With Carson's trach, bathing (or anything that involves water) carries many risks. They did really well together and Kellen didn't splash too much : )

We still are working on the art of drawing.

Playing peek a boo with Dad!

I probably should clean my windows because they are ALL covered with fingerprints and face prints : )...they LOVE to watch people come and go!

Our happy boy waving! He loves to wave!

Visit with MawMaw and Aunt Bonnie

Whoa...this is bigger than my tub! (First time in the big bathtub)

First time with bubby!!

THE Plan!

I just spoke with a nurse practitioner from the Aerodigestive Center with Cincinnati Children's. So...good news or bad news first??

Well, some potentially bad news...they found a 'suspicious' area on the MRI that is just below Carson's trach and could be residual teratoma. Although, I just don't believe it is residual teratoma, she said they will just take a closer look with the first procedure and remove it, if necessary. But other than that, we had good news about the results from the impedence probe (which measures reflux). The study was normal : ) That is a WELCOME word. So this means that his reflux is within normal limits so NO need to do a fundoplication (another surgery to tighten the sphincter between the esophagus and stomach). More good news...all biopsies and samples taken during the procedures last week were negative! So the next procedure will be to remove the granulation tissue just above his trach site, investigate this 'suspicious' area, and hopefully relocate his G-tube. The nurse is going to check to make sure we can relocate the G-tube with these other procedures. That way he will not need to go under general anesthesia an extra time and will eventually be able to switch to a G-button (which is lower profile). She will call back next week to confirm that we can. We are hoping to schedule this first procedure within the next couple months!

I know I say this alot but thank you for the prayers! So many have already been answered and I KNOW we have many more miracles to come!

Here are a couple pictures from the past week!

The new favorite vantage point...this time watching the unexpected snow fall!

Playing outside!

Oooooo...that's cold!

It wasn't very windy so we got to take a walk too!

Happy Birthday to the best Daddy in the world! : ) We had a chocolate, chocolate, chocolate cake!

This is last year...it was SO nice to have both boys with us this year!

Back home

Sorry, it has taken me so long to get back on here...Yes, we made it back home around 12:30 am Friday morning. It was a late night but the drive really wasn't too bad. Carson slept pretty much the whole way and we only hit bad weather in the last couple hours. We were all so glad to be home but Carson was REALLY excited. He could hardly go back to sleep for all the dancing in bed, clapping, and smiling he was doing. Such a sweet sight! We unloaded the car but it looked like a tornado hit our house until the following night.

It was so good to see Kellen too...he really made some improvements in walking while we were gone! And had only picked up a few bad habits : )...I guess that's a result of spending lots of time with Nana & Mimi : ) What are grandma's for?

Anyways, all in all I think Preston and I both feel like the evaluation went well. Of course, we would have both liked to hear that the trach would only be needed for several months or a year, or that it would only be one or two surgeries but the most important thing was that they were hopeful and have seen something similar to Carson's case before. The last day was an EXTREMELY long day for us because we had the first appointment at 9:15 and then had to wait until 4:30 for his MRI. Carson did better in the FEES, his swallow evaluation, than I was expecting. Don't get me wrong...he did NOT like it but he was able to collect himself too. (This had to be the prayers...and I was able to keep almost dry eyes.) It confirmed several things that we already knew...that his swallow is not normal and he does have difficulty coordinating the many components of a swallow but the good news...he HAS a swallow! The doctors and therapists think that many of the problems are due to decreased muscle tone in the neck, which is likely a result of nerve damage done while resecting the teratoma. In terms of feeding...our plan is to continue with just letting him experience tastes of food (not worrying about volume) and aspects of meal time. He is at an increased risk of aspiration and as we proceed with surgeries, he needs to adapt to the changes made. The challenge for me is that there is a fine line between letting him experience food and practice swallowing without pushing too far where he develops a negative connotation with food. The other challenging aspect is that we do not see daily or even weekly/monthly improvements in feeding. So we will just continue to persevere.

Carson sure made an impression on the staff we encountered in Cincinnati. Many people commented on how good he looks, and how happy he is. He was insistent on waving to every person that entered or left the room as well as people that walked past us. If the people did not wave back, Carson would wave even harder : ) Such a sweet boy!

We should get some news and hear what the big plan is by Thursday or Friday next week. The doctors should have all the scans, biopsies, and labs back by that time so they can make the best decision possible on how to proceed.

Here are a couple pictures of the boys since being home...

YAY!!! I'm home!

This was lunch time...all 3 boys were yelling and pounding on their 'trays'

Nana was leaving to go home...I guess the boys thought they were going too! (Yes that suitcase is from when Sarah & I were little)

"How can we get out there?"

Cincinnati

Carson recovered wonderfully from anesthesia today. Liz said he is acting just like himself after taking a short nap and is all smiles this evening. Liz and Preston are sleep-deprived, but they are making it. There were three doctors in the operating room. The results are preliminary, because they have not been able to completely review the information found nor discuss it with all the doctors. However, here is the synopsis of what we know now. There are multiple blockages in Carson's airway from the level of his nose to just above his trachea. He does not have as much tracheomalacia as bronchomalacia (further in his lungs than the trachea in the bronchioloes he has "floppiness" or weak cartilage)  from the results today. His epiglottis and vocal cords are quite a bit displaced from the normal location. As a result, the physicians feel it will be a minimum of 4-5 years before there is a possibility of removal of his trach. To be able to accomplish this, Carson will have to have multiple surgeries to try to remove scar tissue, extra lymph tissue, and potential reconstruction of his airway and/or larynx, but they do not feel it is completely insurmountable. His esophagus looked good on this exam. He may have a slight bit of extrinsic pressure but not enough to cause the difficulties swallowing that he has experienced. His lining of his esophagus and stomach looked good other than the need for a G-tube revision at some point, because it didn't heal in a circular shape but rather irregular shape that none of the G-tubes or buttons fit resulting in leaking. They do feel he will need his G-tube for at least a few more years, so that surgery for the G-tube revision will have to be accomplished at some point.  Tomorrow is the FEES test (evaluation of swallow) and they have added an MRI at 4:30 pm tomorrow. Liz and Preston are planning to drive back, so they will have nursing care to help watch Carson so they can get some sleep. Please pray for safe travel as they are pretty tired already and have a full night and day tomorrow. Although we know God has a good plan, please pray for peace in the hearts of Preston and Liz, because this news indicates a long road ahead for them and Carson.

Peace...I love the feeling!

Thank you for all the prayers...although we are running on very little sleep and Carson's schedule is out of whack, we have ALOT of peace after meeting with the doctor's today. I know some of that is simply from the hundreds of prayers being said for Carson and us. The other part is that these doctors seem to really know their stuff.

They said Cincinnati Children's does more airway reconstrucive surgeries than ALL other hospitals in the nation combined. They also said that of the children that come with trachs, 95% are able to have them removed over the course of treatment! That's good odds...even though Carson doesn't always have the best luck with statistics & playing the odds : ) The pulmonologist also said...after looking at Carson's case on paper, he doesn't know why Carson would not be included in that 95%... just praying they don't see anything tomorrow that changes his mind. The pulmonologist also said they are very aggressive at this hospital, taking cases that other hospitals won't even touch and also cases that have had failed attempts at other places. BUT also do NOT get in a hurry just because we all want the trach out. They look at the WHOLE picture and make sure the patient is in optimal condition for a major surgery. He also mentioned that the best chance of success for an airway reconstruction is the first attempt so it is a huge blessing that we did NOT go ahead with other surgeries PRIOR to coming to Cincinnati. Yes...God is good and DOES have everything in control...Who would have thought?!? : ) Anyways, I could go on and on about different things the pulmonologist said but overall, we just got a really good first impression.

Carson also had an Xray...they said this looks pretty good and his lung damage (as a result of the ventilator pressures needed early on) seems to be resolving. Children are amazing! Apparently their lungs remodel greatly in the first 2 years and all the way up until 7 years old. This means that most damage done in premature babies will be remodeled in the first several years.

The GI doctor was also hopeful of gaining some good insight into Carson's case & function tomorrow with the upper endoscopy. One, to determine what may be going on with his esophagus...if it is an intrinsic narrowing (a problem with the esophageal lining), an extrinsic narrowing (or something that is pressing in on the esophagus), or more a a dysmotility of the esophagus (meaning the nerve innervation has been interrupted somehow). Along with this he will take a look at the Gtube and try to also determine the possible cause of his frequent vomitting. Is he refluxing which causes him to vomit or is he just getting overly full or does he have some sort of allergy to his formula? Hopefully we will get some answers tomorrow and be able to progress with oral feedings.

Well, I know this is a long update and I probably forgot some of the info but all in all it was a good day! Now to eat and try to get some sleep!

Thanks again for all the prayers! Tomorrow Carson is scheduled to go into the OR at 11:15 am. The doctors will then all come out together to give us their initial thoughts and preliminary findings. But, again the FULL plan won't come together until the following weeks!

I've spoke with Mom and we believe Kellen's fingers will survive : ) Kellen also seems to be doing well at home...I guess I didn't have any doubts with Nana, Mimi, Papa, and Aunt Sarah in charge!

We made it!

Preston, Carson, and I made it to Cincinnati about 6:30 or 7 (Cincinnati time) yesterday evening. The trip went as well as could be expected. We missed one turn shortly after leaving Dexter but it didn't delay us much at all. Carson slept for the first 2 hours of the trip (thank you Sarah and Mom for keeping him entertained before we left : ). We only made one stop for gas and a break. Carson had his first 'gas station break' experience and he completed it by puking all over himself & Preston while I was in the bathroom. I couldn't help but laugh just a little when I came out... Oh, the joys of children. I think Carson is fine...although he did puke again in the car about an hour later (this time I caught it with the puke bucket). It may be some car sickness (which my family knows all about) or it could just be Carson.

Anyways, we made it to the hotel, which seems to be okay. Preston unloaded the vehicle while Carson and I hung out in the room and wiped everything down with Lysol : ) - you never know... It took Preston three trips to get everything (even with a luggage dolly). But we got settled in...finally got a pizza up to the room about 9 pm. I think Carson was wondering where Kellen and the rest of everyone was last night, but he did pretty good for being tired on top of being in a new place.

Please stick in a couple prayers for Preston and I...I think we are in for several nights of very little sleep. So I hope the adrenaline (& God) can carry us through until we get home. Also, say a few prayers for little Kellen. Before we left, he got a hold of my CHI (hair straightener) ....good job, me...& burnt two of his fingertips pretty good. They blistered up...I felt awful! He seemed to be in a fair amount of pain right afterwards but Mom & Sarah said the rest of the day, yesterday, went better.

I'll try to get an update up later today after we have our appointments. Today, will just be clinic visits (with anesthesia and the aerodigestive team)...so I'm not sure how much information we will get.

Thanks again for the prayers!

Update on Cincinnati

Carson is doing great but now that I have a headache, I better send out a prayer request : ) No...not for Carson, but for this momma! Yes, I had a small breakdown complete with tears and all. As Carson is laying on the couch with Preston, I was at the computer researching some of the procedures he will have while in Cincinnati and all of a sudden the tears just came. Why can't our sweet Carson just catch a break??...why can't he just have an easy road from here??...why does he have to go through all these procedures...I wish I could just do it for him. Preston said, "Liz, why are you crying?" as I am sniffling "Carson's not worried...look." And yes, Carson was sleeping as peacefully as could be. That is the beauty of children...no need to worry or get anxious because he has no idea what is up ahead. So, yes...I do ask for prayer for me, to keep it together and realize this is ALL for Carson's benefit. But MORE importantly, please keep up the prayers for the physicians and staff that will be performing the procedures, for safety for Carson, and for continued health. I think we are witnessing another miracle in the fact that Carson and Kellen have remained healthy as the flu, and every other bug, is running rampant in this area. And of course, the biggest prayer I have is for COMPLETE healing (of Carson's airway, swallow, and feeding concerns).

I spoke with a nurse from Cincinnati today and got most of the details for our trip. So for those interested...
January 8th: Anesthesia consult in the morning, Chest Xray, and GI & Pulmonary consult in the afternoon
January 9th: Surgery day with subsequent hospital stay (23 hr observation)! Carson is scheduled to be taken at 10:15am and will be in the OR for approximately an hour. They will do a laryngoscopy and flexible bronchoscopy (ENT and Pulmonology are in charge of this) to look at his airway, then an upper endoscopy will be performed by GI to look at his esophagus, stomach, and first part of his intestines. GI will also place an impedance probe at this time through his nose into his esophagus. This will remain in place for 18-24 hours and its purpose is to evaluate reflux by detecting and record the amount of stomach contents coming back up when he vomits or cries, etc. It also determines if the contents are acidic or not, how long they stay in the esophagus as well as how often it occurs. This is the first thing I'm really not looking forward to because I know it will be uncomfortable for Carson (I also hope he leaves it alone and doesn't pull it out - more prayers : )
January 10th: 10:15 am FEES (Fiberoptic endoscopic evaluation of swallow)...this is done in the ENT clinic and is the second thing I have some anxiety about. Carson will be awake as they pass a scope down through his nose to just above his epiglottis. They will then attempt to feed him (which is NOT his favorite thing anyways) and assess the swallow. Once this is completed, our plan is to head home to Dexter.

So, I am thanking everyone in advance for the prayers because I KNOW what they can do! I am definitely NOT complaining and am so thankful to have the opportunity to take Carson to Cincinnati but I do have some anxious thoughts in the midst of excitement for the trip! I will do my best to keep everyone updated along the way. We should have preliminary results after the procedures are completed but we will not know the COMPLETE plan until the following week when the team meets.

They love their barn : )

Carson is concerned because his farmhand (Kellen) is manhandling his livestock : )

Playing with Danielle : )

Kellen's favorite past time (removing EVERYTHING from the cabinets)