We went to the docs today and were not at all surprised when he said we needed to move forward with reconstruction surgery. I have been saying all along that I thought we would have to do it, last time just wasn't the day for it. Our new surgery day is October 15th which means that we will finish our final surgery just before Christmas. Getting his trach out will be the best gift ever!!! The Doc also suggested that we discontinue therapy until the beginning of the year. With recovery time from all the surgeries and the risk of getting sick from other kids it just is not worth it. Not going to lie I was not at all disappointed to hear that. I might have been even a little happy about it. Going four days a week for a year and a half is exhausting and a break during the holidays sounds heavenly. We feel more ready for it this time and are happy to be moving forward.
This little guy has been a big time Mommas boy lately. He always has been, but holy smokes it's crazy right now. Mix Mommas boy and not feeling well and you get some amazing snuggle time! Heaven I tell ya! Posted using BlogPress from my iPad
I feel like I left a lot of people hanging. My phone broke and the new one isn't coming until next week and our computer broke so the last most people heard was that "Something isn't right with Little Man". Our computer is back and it's about time I do a little update on the past week, because it sure has been interesting. When we left the hospital last week we were both optimistic, but not too hopeful that dilation would work. The couple days after were miserable for Carter. He just felt so nasty and was still bleeding quite a bit out of his trach. He also was not able to breathe with his Speaking valve on which was something he could do before surgery with only a little struggle. When he has his speaking valve on he breathes in through his trach and out through his mouth and nose. We were pretty concerned about this especially since he was supposed to be "just fine" breathing with his trach capped off meaning in and out his mouth/nose. Another concern was that when he would cry with his speaking valve on he would make no noise. Before he wasn't able to produce much noise with his valve on, but always when he cried. My mind was all over the place and the thought that what if the doc messed something up wouldn't go away. Thankfully after another day or two he was able to start using his speaking valve more and more. On Friday the day my phone broke ;( we went in to the docs and he was shocked that Carter was having so much trouble. He capped him off and he was able to breathe, but boy howdy was it a lot of work and involved a lot of wheezing. The doc told us that his airway is about 50% open which for most kids is plenty for them to breathe normally. He also said that he got rid of everything he could and opened it as much as he could so it wasn't going to get any better. For some reason 50% isn't enough for Carter. I am sure it is a combo of having 25 weeker lungs and a paralyzed vocal chord. With that said we go back in on Wednesday to check him out again. He said that any swelling (which was probably the reason he wasn't making any noise when he cried by the way) he had from the dilation procedure would be gone by then so if he isn't able to breathe normally by then we will schedule Reconstruction surgery. We are almost positive that is what we will be doing since he is still having some issues with his speaking valve and we would need perfection when it came to being capped off. The tricky part now will be trying to squeeze a 6 hour procedure into Dr. McClay's completely booked schedule. He doesn't have a problem coming in to do a surgery early, but finding 7 other people he would need on his team can be hard when it isn't an emergency.
The more time we have had to think about it and let our emotions settle down, because we all know they have been crazy we feel that for whatever reason we just weren't supposed to have surgery last Monday. We will probably never know why. Although we are bummed about the timing of it all we feel good that we at least gave it a try and that we did what we felt we were supposed to do. Besides 100% is a whole lot better than 50% especially when it comes to our little mans airway.
Our computer is in the shop and I am doing this from the iPad. It just deleted my entire post and my brain is fried so this will be a much quicker version.
From the beginning of all this airway business we always knew the worst case scenario was getting reconstruction surgery. Today we went in prepared for just that. It is very difficult to explain without pictures. Thankfully Dr. McClay took a whole bunch and sorry if they gross you out.
Here is Carter's airway when he first went in. I think it's pretty obvious that the huge granulation isn't supposed to be there so he immediately cut that off.
Leaving us with this tiny little airway. It is tiny but so much better than it was 2.5 months ago thanks to him getting bigger (size is a big thing when dealing with airways) and his flux getting under control.
This is when he left the OR to come chat with us. He said that with the current state of his airway and the improvement in his reflux he felt that he could successfully fix his airway by dilating and doing a laser procedure. My first thought was um hello we have already done that and that is why we are here!!! He said that the way his scar tissue was and that the swelling had gone down he was confident it would work. Of course he had to also say that it may not be successful and we might end up having to do the reconstruction anyway. He left the room for a couple minutes to let us decide what to do. We knew what we wanted to do and they was move forward with surgery. We had mentally prepared ourselves for that and it was the sure route. We would know exactly when the trach was coming out and that the airway would be sufficient enough for him to breathe successfully without his trach.
1 Nephi 4:6 "And I was led by the Spirit, not knowing beforehand the things which I should do"
We knew what we wanted to do, but weren't sure what we should do. After praying about it we had an overwhelming feeling that we needed to wait on the reconstruction. I had such a hard time admitting it, but one thing I know is to never deny the promptings of the Spirit. Boy was that a hard one to swallow. When he came back in we told him to go ahead with the dilation. Obviously this was what he wanted as well seeing as he left the OR even after we had signed our lives away to all three surgeons and anesthesiologists. This was very nice of him especially seeing that he could have had a nice paycheck from the procedure.
Here is his airway after he split the scar bands with the laser and dilated his airway. Holy smokes we have never seen his airway so big. We just pray now that it can sustain its size, because this current after dilated size should be sufficient enough for him to breathe on his own without his trach. We will start to cap his trach off meaning he will breathe in and out his mouth like you and I for the first time ever as early as tomorrow.
After he did the procedure he put on a topical steroid type ointment that should help the airway heal properly.
Now that I have had time to let this all sink in. I feel good about our decision. Of course I will feel a lot better if come a couple months down the road this is successful and we don't have to reconstruct. Over all it just feels weird. Weird that we are home and not recovering in the hospital.
It goes without saying that it was so much better walking in the recovery room and seeing the permanent marker on him where the incisions were going to be instead of scars and bandages. Poor little guy got "juiced" up for a six hour procedure that didn't happen and was not feeling too hot with all his left over anesthesia.
We figured why not torture him and put him in his Halloween costume with Boston. We are terrible I know.
Thank you so much for all your prayers. We know that we would not have been able to make that decision without the power we felt from them. Thank you thank you! Posted using BlogPress from my iPad
We are not moving forward with the reconstruction surgery today. Dr. McClay came out after they scoped his upper and lower airway and removed some granulation/scarring. Carter has multiple contributing factors to his airway issues. Vocal chord paralyzed, narrowing, granulation, and other scarring issues. He gave us the option to go ahead and do the reconstruction or proceed with a laser dilation procedure. They were so many factors that went into our decision to not go ahead with the reconstruction the number one being the direction we got from the spirit after praying about it. I will give more detail hopefully later tonight when I can wrap my head around all this.
For the past week I have been having nightmares that we wouldn't be able to do the surgery because we arrived to the hospital too late. I thought for sure that was going to happen when we were stuck in traffic trying to get downtown. Thankfully we made it only a little late.
Trav and I about lost our stomachs walking down the long white halls and through what felt like a million double doors to get to our pre-op room. Carter did great until we got in the room and that is when he knew exactly what was up. We signed our lives away and they marked where they would make the incisions on his chest.
Dr. McClay came in and I wish I felt all warm inside about him like I do Carter's other doctors, but I don't. I have to remind myself over and over again that he is a GREAT surgeon. He started to talk as if they might not proceed with the surgery if his reflux isn't under control. Hello didn't we jaut spend the past two months fixing this and didn't you just speak with the GI doc and he gave you his go ahead!!!!! I will feel lots better when I know they are moving on with the surgery. As for now I am a ball of nerves. We will get hourly updates from the OR.
I figured since I have been asked so many times about surgery I should just write it all down here and reference everyone to this. So here are more details than you will ever want to know about Carter's surgery coming up next Monday September 17th.
What is it?
He will be having a Lareyngotracheal reconstruction surgery or easier said airway reconstruction. The surgery it self will take anywhere from 4-6 hours. The surgeon will make an incision in his right rib and find "the best looking" piece of cartlidge and remove it He will graft it to shape and use that to help create a new airway. He will them make a smiley face incision across his neck (too much detail?) and split his current airway open. He will then use the grafted cartlidge and merge it to his current airway creating a brand spankin' new one. After this main surgery he will have three more smaller ones over the next 2.5 months to finish it off. The three other ones should be more just repair scar tissue, airway dilation, and the final one will include tonsils and adenoids.
Nobody is really sure what brought us to this point. Could be simply because he was born at 25 weeks. Could be because he was incubated for so long. Could be, but not likely genetics. Who knows, but it has to be done. Why? The most exciting for us is getting his dang trach out (after the 4th and final surgery) Currently his airway is 93% percent closed due to scar tissue build up. Leaving him with an airway the size of a coffee straw to breath and swallow out of. Carter gets about 99% of his nutrition through a feeding tube and with time as his airway heals he should be able to eat more food by mouth. Because of his trach he is not able to produce any sound (trach is placed below the vocal chords making it so no noise is produced) so again with time he will be able to make noise and learn how to speak. I don't even have to say how excited I am to hear his voice. By the time surgeries are finished he will be almost two and that is far too long to wait to hear your babies voice if you ask me. He also has a paralyzed vocal chord and the hope is that with a new expanded airway his right vocal chord will be able to make up what the left cant do. There are SO many other benefits to this surgery as far as developmental and what not, but those are the main ones.
We are not exactly sure what recovery will be like. We do know that they will place 1-2 drain tubes in his chest to get rid of all the fluid that will build up in his lungs. Also there will be a drain tube placed in his neck as well. They said to plan on at least a week stay for the first surgery and hopefully only 1-3 days for the other three.
If there is anything else I can't think of it right now. As always we would love prayers for our little man (and us we are going a little crazy thinking about it).
For Labor day the Sharps invited us to the Lake with them. We had such a great time!
I surprised myself and got up wake boarding the first time. I had no idea what to expect after a two year break. I also tried surfing and failed miserably. Have I ever mentioned that I don't like it when I can't do things? Well I don't and ahhh it was buggin'
My cute boys! Trav loves when I post hairy chest pics on the blog ;) Embrace it babe embrace it.
This little boy was loving it! He had fun splashing his legs off the back of the boat and pretty much froze in complete relaxation when the boat was moving.
Splashing and Jumping!
The older the boys are getting the more they are actually playing with each other. It's SO fun I love it!
Boston would have been happy to have swam in the lake and jump off the boat all day long!
Momma's and our babies
Dad's and the big boys tubing.
Trav did great wake boarding and got up Surfing. (which only bugged me more ha) He had a good fall on the wake board and managed to do something to his rib leaving it bruised and swollen. I think it's safe to say that we are getting older. I mean he will be 30 in a couple months!
Thanks for such a fun day Sharp Fam we sure had a great time!
Boston is big time into coloring these days. He is very serious about what he draws. For about a week he got pretty darn serious about his "Rangers Player" book that he titled "All About Baseball Players All About People" He knows most of the players names and had us write them down and he would draw their picture. After we would tell him other players names and he would decide if they made the cut or not.
I love his drawings SO much! They arms and legs coming out from the head is my favorite part. He spent a lot of time changing colors for they head, eyes, arms, legs, body, and everything else. Some of his favorite players got a little more lovin' like Ian Kinsler got a bat and ball on his page. Also some of the pictures got a ball on their page. He carried that thing around everywhere!
My Mom happens to work with one of the players girlfriends and when she told her about the book she asked her to bring it in and show her. She took a picture of his page (Craig Gentry) and sent it to him. He was nice enough to sign Boston's actual book and boy did we have an excited 4 year old! The only bad part was that he had away games which left Boston without his book for about a week. Good thing he is very forgiving.
Thank you Mr. Gentry you are now up there as one of our favorite Rangers players!
The heat this summer has been so hard on Carter's neck where his trach ties are. With how sweaty he gets it has really irritated his super sensitive skin and he does not leave it alone. He literally have scratched it raw. It's tricky to try and let it heal with us only being able to put certain medicine on is with his trach hole. If things get in his hole it can so easily get infected.
One way that Carter deals with it is to rip it all out. If he turns his head sideways or looks up or down he can not breathe. During the day it doesn't really worry me because I am right there. Come night time when he is in his bed sleeping and he does it.....well that's a completely different story. Have I ever told you how much I hate the color purple? Well I do especially when my baby turns that color.
These boys are ALWAYS happy wrestling. Boston does not play lightly and Carter absolutely loves it. It's a good thing he has such a great big brother to break him in. When we are at appointments and the Doctors see Boston tease him they always comment how great it is to see him being roughed around. They say too many times trach patients are too protected from things such as this. If only they knew the half of it. Carter has no choice so lucky for all of us Boston keeps him on track.
The day Boston had been waiting all summer for finally came! He absolutely loves school and asked every week when school was going to start. I guess he didn't think our summer was as fun as I did. Truth be told I was just as excited as he was. This boy thrives off of structure and being dragged to Carter's therapy appointments isn't the structure that he likes. When he is in school he is such a better behaved little boy all around and I love that too.
He was so excited to pick out his first day of school outfit which of course included his favorite basketball shorts from Grandma Wilson and his speedy orange shoes from Grandma D. Side not about the shoes. When we went shopping for them the ones we wanted they didn't have his size in so they brought our these ones to try for size. Your crazy if you thought we would actually be able to leave without those bright things.
He posed like this all himself and O my gosh I died. This picture is just too much! So cute!
I can't believe how fast summer came and went. Get ready Little Harts Boston is back.
He was SO excited that Daddy went in to work late so he could take him to school. He was happy to show us his stomping grounds. Carter was a tad jealous of all the fun things to do.
I decided to come home and make myself sad by looking at his first day pic last year. How did he grow up so much in just one quick year.
He came home one happy camper. I died when I got the learning card e-mail from his teacher and read all the fun games they played, the books they read, and that they got to ride the ponies and he told me his favorite part of the day was "when we learned to not show our friends out poop in the potty and playing with Kaitlyn and Addison at recess" If that is any indication of how the year is going to go it should be a great year!
As part of our anniversary (or just a good excuse) we bought ticket to the cowboys preseason game. Since tickets are ridiculous to regular season games we figured this would be a fun game to go to. We had killer seats and despite half the starters being out we had such a fun time. Jerry's World really is such an amazing place.
We decided to go all out and get the full "experience" and eat dinner and dessert at the game. Surprisingly the prices weren't all that bad. Parking however was another story. With how far away we parked we kept joking that we should have just walked the whole way. We didn't mind though it was fun to chat and people watch all to avoid $40 parking.
It's very safe to say that this is his happy place.
and this is mine ha!
Since preseason games are only entertaining for about the first half we enjoyed watching the people the second. Including all the old men recording the cheerleaders on their phones. Nasty!
Sloan or as Boston says Sa-Loan came tow town to spend two weeks with Kyle. We had so much fun spending time with her. Boston sure loved having a little sidekick and asked the second eh woke up when he was going to see her.
Cruisin' the neighborhood
Of course we had to go to the beach. We had friends join us which made it all the more fun.
We fed the ducks which the kids loved. This pic by the way kills me. She is a peanut which is so not what I am used to at all. Everything about her is tiny.
We spent lots of time at the pool.
I think they look so much alike in this picture.
Rode the carousel at the mall. Despite Carter's face he absolutely loved it!
Attempted the splash park only to find out Sloan is terrified of them.
Grandma D thought it would be fun to buy then harmonicas. I am still trying to figure out pay back since she wasn't the one driving them around everywhere while they "made music" for us.
Spent lots of time at mall play places. Obviously didn't get any good pictures.
Went to the farm and fed some VERY hungry and VERY feisty goats that scared the tar out of the two older kids. Carter on the other had thought it was great and enjoyed feeding all the animals since Boston and Sloan we now too scared.
I love this little girl SO much and wish I could keep her.
This picture is just too cute not to post. I put the helmet on as a joke and because I love seeing them on my boys and their huge noggins. Good thing I did, because his brother zoomed by on his bike seconds after and knocked him off.