Next surgery

Okay, well I heard from Cincinnati the end of last week (they were very prompt in getting back with us). They agreed that the MRI looked good so we are going to 'go forward.' This means we will be going back to have the same surgery done that they planned originally for July 31st. Yes, a little...okay 'a lotta' frustrating but I guess I should be thankful that the MRI didn't show anything unexpected. So...we have now rescheduled the supraglottoplasty for October 2nd. That was the first available and the best date we could find given Sarah's upcoming wedding : ) Please be praying the ring bearer recovers quickly and is up to par for his debut!!

On another note, we have another prayer request...never lacking for prayer topics : ) Our main night nurse that has been with us for awhile now, told us that she is taking a different job. So, this is her last week. There is another lady that has said she would take a couple extra nights but that still leaves several nights empty. Please be praying that we/they find another good nurse, so Preston can continue to get decent sleep at night. Thank you!

Here are some pictures from the last month or so. The boys are doing well (except the puking has picked up again). They are SO much fun and love playing together, laughing, mimicking one another, hugging/tackling, going for walks (now they want to actually walk sometimes - man, they are getting big)!

Morning cheesers!!

Picnic with Dad!

This was a big moment for us...first time the boys rode in back WITHOUT me in between them. Yes, its the small things : ) We only went about 5 miles down the rode but it felt great to sit in the front seat!

The boys LOVED the unusually wet August...more puddles!

Trying out 'froggie potty'...no success yet!

No success here either...not yet at least.

Who knows what they are up to : )

Just chillin'

Daddy's big helper

Morning walks are the best!

A good day!

Our day went better than I even expected...thank you all SO MUCH for the prayers! We woke up at 2:30 am to pouring down rain and lightning and thunder! Well, we got ourselves together and from the time I took the first load out to the car (which wasn't in the garage) to the time I carried Carson out (less than 10 minutes), it went from the pouring rain to no rain at all. (Answered prayer #1).

Carson went back to sleep within 15 minutes and slept all the way to Cardinal Glennon (Answered prayer #2).

When we arrived, I asked the nurses about changing his trach out to the MRI safe trach AFTER sedation...they responded with, "That isn't what we typically do (with a list of reasons following) but I don't care to ask." So we continued on with the registration process. Long story short, not only did the anesthesiologist say he would wait until after he was sedated to change the trach, but they also allowed me to hold Carson while they gave him the anesthesia gas. (Answered prayer #3 with a HUGE BONUS hug : )

The MRI took approximately an hour and a half but they said it went well. While Carson was recovering, the nurse informed us that a radiologist would be down shortly, he had actually already read the scan and could tell us what he saw. Great News...he said, he did not see any evidence of residual teratoma, just something that looked like scar tissue. (Answered prayer #4) I didn't really have any concern about this but it was very nice to have that reassurance.

We stopped by the NICU on the way out and got to see BOTH of Carson's primary day nurses, as well as a couple of the other nurses that took care of him occasionally. (A wonderful, unexpected blessing!)

We also made it home without any puking, and Carson slept a portion of the way. (Answered prayer #5)

So, the MRI report is being faxed to Cincinnati and a hard copy of the MRI is being mailed. I am hoping Cincinnati will get all this information by the end of the week and we will hear something next week, in terms of their reading of the MRI and the next step. I am just really praying now that the surgeons from Cincinnati can get the information they need/want from this MRI.

Love to all!

MRI is scheduled!

I scheduled Carson's MRI yesterday. It will be a week from Monday (Aug 12th) at 7 am in the morning. So, we have to be there by 5:45 am and will have to leave our house around 3 am. Praying for a good morning, that they get all the needed pictures, and that the doctors are able to correctly diagnose what they are seeing. Also, please be praying...we have to change Carson's trach out before the MRI (because it can't have any metal in it). I'm hoping that they can sedate him before changing his trach, to save him so much unneeded anxiety. I won't find out until that morning though. Thank you all!

One of my favorite pictures ever!

I can't post pictures from my phone to the blog but I wanted to pass this picture along...this was in preop yesterday before we took Carson back to the OR. Now, that smile can make any minute of any day brighter : ) You can't help but LOVE LOVE LOVE this strong little fighter! No worries there.

Not what we planned!

Ok, well...first off, thank you for all your prayers and encouraging words! I know they are what get us through days like today without losing hope! We are back home now after a long 'rollercoaster' day. Surgery started a little late and we were expecting approximately an hour and a half, so when they came and got us at 45 minutes, we knew something wasn't going as planned (horrible feeling!). After talking with the doctors (ENT & pulmonologist), we found out that they did the bronchoscopy, however did not remove any tissue because of what they saw during the scope. They found some tissue near the epiglottis that was 'concerning' - tissue they weren't really able to see on prior studies because of other tissue that was covering it and since has been removed. It sounded like they thought the new tissue in question was residual teratoma (however, Preston and I don't think it is) and after we talked to them more, they said it could also be scar tissue or inflammation or a number of other things but before they went 'a-cuttin' they wanted to make sure. That is why they stopped and now want a MRI. That was the second area of disappointment and frustration. Since Carson is so young, MRIs mean he needs to have sedation. I was hoping they would have just done the MRI today (while he was sedated) but they told us the MRI was booked solid until next week. Arghhh! You would think they could fit us in...huh? I mean we just drove 6.5 hours one way to get here. So long story short, we will now need to go to St. Louis at some point (probably sooner rather than later) to have the MRI, and then after the Cincinnati team looks at it, we will decide the next step, which probably means another trip to Cincinnati to do something similar to what they had planned today. This does not fit well with my Type A personality and my liking to follow the original plan!
So, thank you, God, for another lesson in patience and realizing that my ways are not always YOUR ways! : )
The other piece that is probably even more frustrating, was after the scope today, Dr. Cotton, again said, "His trach isn't going anywhere soon." To which I asked, "What do you mean? How long?" This time the reply was 5-10 years! I just want to scream sometimes (I don't, but I really want to). It is so hard to think you may actually get some good news and not only, NOT get good news, but get even worse news than you thought. First we go from, probably by a year old he will have his trach out, to 'maybe he will have it for life', to probably 4-5 years, and now we are to 5-10 years! Golly, gee, whiz!
As I'm writing this, I can just hear..."Be still" "I know the plans I have for him, plans to prosper him" But it really is SO hard to let go of MY plans and MY hopes.
Okay, so now that I've finished the ranting...there were a few good things! First off, they did not see any signs of inflammation or generalized irritation in his airway, which is wonderful! Two, they still believe his trach WILL come out eventually! Three, Carson is still sweet as can be...he rolls with all these punches and always comes out with the sweetest smile and personality! He was SO excited to be home tonight with Kellen!

Thanks again for your continual prayers! We will see what the next step brings and on the bright side, this just leaves room for more miracles!

Off to Cincinnati!

Leaving for Cincinnati tomorrow morning! I can't wait to have this trip over with and get these two boys back together. As they get older, separating them gets harder and harder. We just keep telling ourselves that it is one step closer to getting his trach out! With that said, I am also so thankful we are getting a lot of these surgeries over with while Carson is young enough that he doesn't fully comprehend everything that is going on, it keeps some of the anxiety away and allows him to hang onto more of his sweet innocence! Thanks again for all the prayers!

I will update as soon as I can...Surgery is scheduled for 11:10 am (Eastern time) on Wednesday and we should be discharged Thursday!

Prayer Request!

Well, surgery is just a little over two weeks away...I forgot to mention one of my biggest prayer requests, in the last post, in regards to the upcoming surgery. He will be having a bronchoscopy (meaning they will take a look at his airway overall). I am REALLY praying that they get a good baseline picture of what his airway looks like. So, I am praying he is 100% going into it (he has had more secretions the last week or so but seems to have turned the corner now). They have told us that an 'inflamed or irritated airway" has to be under control before going into the big reconstructive surgery (whenever that may be). Anyway, we had never heard that Carson's airway looked inflamed (including the first evaluation in January) until his most recent bronch in Cincinnati this past March. This could have been due to a number of things, being stressed, throwing up more, or irritants from the air, etc. So, again, I'm just praying that they get the most accurate information from the bronchoscopy this time. Thanks in advance to all our prayer warriors!!