So let's see what's been going on? Well I'll just touch on the big stuff...
The trach is out! Yippee, and he's doing great. Still VERY congested but we just started some mucinex so I'm hoping that will get rid of the remaining phlegm. Sounds nice huh? :) So I can't stop kissing his neck!! I know that sounds weird, but it's just so very nice to see it, and it finally smells good (yeah, it would get kinda stinky being covered up 24/7) and he's ticklish right there and I just can't resist!!! And yes, I did get to scrub it very good and have been doing that every time he takes a bath, just because I can now.
The port is also out. And hopefully that will help him move that arm a bit more. He's already opening his hand wider and seems to be using it, but time will tell if it goes back to "normal" or not. I'm thinking it will because he seems to heal very quickly. I just took the steri-strip off today and the area where the port was is bruised and still quite sore, but other than that, it's looking good!
Well I think I told y'all but I also got the doc to change out his feeding tube "button" as well. The old button would pop open a lot, and all of his dinner would leak out onto the bed at night and it was just a hot mess! Well, I almost wish I would've just left it alone right now because that was the absolute worst part of the surgery!! He was in so much pain from the pressure of pulling the old button out and putting a new one in. He even ran fever for a few days because of this! He did not want to eat at all either. It was so frustrating because he already doesn't want to eat using his mouth, and then he didn't want to be fed using the button either...he cried every time I stuck the tube in and just gagged during and after the feeding. And he wasn't even getting his normal feedings either (the hospital couldn't get his formula in so I had to just give him whole milk--which wouldn't really be a problem, he's just on formula still for the extra calories--and they didn't give me baby food to give him until the second day). Well he's still not doing great either. I finally had to call the doctor today because he's still gagging a lot and today I thought he was gonna throw up (which is kinda impossible because he has a nissen--the top of his stomach is wrapped around the bottom of his esophagus). Poor guy had to stop in the middle of therapy twice because he was making gagging and retching sounds, got as white as a sheet, then turned green and broke out in a cold sweat. I have never seen anyone turn green before, but he really did. I didn't think that was even possible. Anyway, the doctor told me to cut back on his feedings a bit for a couple of weeks to give his stomach time to process everything. He said sometimes after surgery it takes a couple weeks to get back to normal and if he's not better in a week or two, then he will run some tests to check on things. (He told me what the test was called, but I was driving and didn't write it down and for the life of me can't remember what it's called. Oh well, we'll just hope it doesn't come to that.)
So other than the stomach problems we've been doing pretty good. Adjusting to life without a trach is much harder than I would've ever thought! I miss my suction machine, yes I did say that I missed a machine. I know, crazy me! But it's so hard to listen to all the mucus in his chest, see him trying to cough it up but just can't get the hang of it yet. I mean, he really sounds horrible. I thought all of that would just magically disappear, but it hasn't. I'm praying that once it does clear up, that will be the end of it except for colds and such, but we will see.
One thing that has been nice is traveling with only a diaper bag! WHAT WHAT!! ;) You might think I'm nuts, but you take along an extra two or three bags just to go to the grocery and see what's it's like. Come on, I dare you. And have two kids while you're at it! See how much fun that is....
Let's see, what else? Well we started back therapy yesterday after almost a full month off and....You guessed it, he did horrible!! It was almost as bad as starting all over. Between the cast pinching his leg, the stomach hurting, him being nauseous and just the pure laziness from not having to do it in so long, he was worthless. Wouldn't even sit up, and he even hung his head to the side for most of the time. I can see his new voice has come with a new attitude.
Well that reminds me, the night I stayed with him in the hospital, the first night his trach was plugged, he was so excited to hear his voice that he woke up off and on throughout the night making raspberries! It was so funny. And it took him a whole two days to realize that if he cried, he got held. So guess who's been crying a lot lately?
And lastly before I go to bed, I'll tell you about the foot. We went to see Dr. Warren (the orthopedic doc) today and he took Lucas' cast off. There were four or five pins in his foot, a couple came out with the cast, and I watched him pull two out. (It was grosser than I thought) And one lucky pin was stuck in his heel. This is kinda gross so you may want to skip down a bit...the pin that was stuck had some skin growing over it and he had to get pliers to dig it out...poor baby screamed bloody murder! I felt so bad for him, but it really couldn't have bothered him that much because he was laughing a few minutes later. Well guys, his foot looks beautiful. It is so straight already and the heel has formed too! He put another cast on for one more month and then that should be it. He'll take x-rays and make sure everything is A OK and we're done with the foot! (And another one bites the dust.. another item checked off the long list of repairs) Of course, there's always a chance the cast could go back on for yet another month or it won't work and we'll have to have major surgery, but if you would've seen what I saw today, you'd know he's going to be just fine!!
Well I know there's more but I'll post that later..
BTW, the kids met their grandpa for the first time last weekend. We had a blast with the Whitener crew in Memphis, will tell you about that next time too. And I'll also tell you about Joshua asking several waiters for chips, dip and beer. Yeah, I said Joshua, as in the 2 yr old. What a joy raising a 2 yr old very talkative boy has been. I'll have to start another blog to tell you about all of his crazy stories. I could probably write a book already!
Well thank you all for reading this very long post. I'll post regularly again so I won't have to write so much next time.
Lucas about to get his trach out...just got his versat and he's very happy!
A smaller trach was put in and capped before they actually took the trach out.
First pics without the trach!
