Jackson has been trach free for over a month now and I can't believe how much our lives have changed. We are not strapped down to the house, or worrying about how much battery power we have left anymore... life just seems simpler. Yes it's still chaotic, but it's a 'different' kid of chaos. We can now focus all of our time and energy on his therapies, and most important eating food by mouth. Jack gets 100% of his 'food' through a G-tube, which has been a lifeline for him, and has given him the ability to gain weight while he had his trach. Jackson sticks EVERYTHING in his mouth...except FOOD! It baffles everyone, especially his feeding therapist. He has such an adversion to food in his mouth that he will actually gag when you put food on the tip of his tounge. On the plus side, we know it's behavioral versus an actual anatomy problem, so with lots of coaching and reinforcement we can and WILL get him eating... just on his own time. Our next therapy Goal is to get Jackson sitting on his own by January (his adjusted 2nd birthday). In just 4 sessions with his new Physical Therapist, Jackson has made some awesome progress. We know that he will achieve the goal, again just on his own time. He is getting stronger every day, and is making awesome progress in his therapies.
Be strong in the Lord and never give up hope, your going to do great things...I already know! -Sidewalk Prophets
Showing posts with label Trach. Show all posts
Showing posts with label Trach. Show all posts
Sunday, July 10, 2011
Thursday, June 16, 2011
A Whole New World!
The day finally came. After 15 long months of suctioning, cleaning, protecting, and not to mention worrying- that awful piece of plastic is GONE! Bye Bye Trach!
It's almost surreal, and it all happened so fast. We checked in to the hospital hooked him up to some monitors, and then they just told me to take it out... that's it. I sat him up and unhooked the straps and pulled it out. He cried initially and it was music to our ears!
Hearing your child cry for the first time always melts your heart... hearing your child cry for the first time and then saying MAMMA... bring on the tears! His first word...Mamma! It was absolutely beautiful. His voice is still soft and a bit raspy, but that will go away as he uses it more. After the trach was taken out we put a bandaid over the Stoma (hole where trach was placed) and just waited a few hours to make sure he was not going to have any issues. We then moved in to a short stay unit and just hung out all day and watched TV, and played with toys. He went back to the sleep lab that night for a full Sleep Study with full monitoring. They didn't get us in until about 10:30pm and Jack was getting sleepy. Heck we were all sleepy! He cried himself to sleep as they attached monitors all over his body. Nick and I stayed in the room with him and were "cozy" on a child sized hospital bed. We were so tired it didn't matter. They woke us up around 6am and started taking all of the monitors off of Jackson, and then put us back in the short stay unit while we waited for a doctor to review his sleep study. Apparently all was good because the Doctor said he does not need the trach, and he does not need oxygen any more! We packed up Jackson's stuff and headed home! For the first time in his life Jackson was a Wireless baby! (except for the feeding tube).
It has been a week since Jackson's trach was removed, and wow does time fly! There have been so many opportunities opened up for ALL of us! The biggest thing is SLEEP! Jack does not need suctioned anymore, and does not have anything attached to him that would need attention in the middle of the night. Where before we would suction him 3+ times during the night, and occasionally get up if he pulled his oxygen mask off of his trach. Oh and there are no more ALARMS! Nick and I both still have dreams that Jackson is BEEPING! We also don't have to pack the entire house when we go places anymore! We used to always be on a timer... 4 hours is the longest we could stay out without running out of oxygen. Day trips and over night trips were few and far between, but I now see MANY of them in the near future! It's very different to have just Jack and a Diaper Bag... is this all a kid really needs?
On Saturday we took Jackson to the Pool for the first time! He was not too sure what to make of it at first, but he finally got used to it. He loved watching the other kids play and splash. We were not 100% sure if his trach stoma had closed yet so we only had him in water up to his waist. It was a good time to get some much needed sun. Jacks cheeks got a bit Rosy even with SPF 50. Overall it was the perfect day, and we will be going back to the pool as often as we can!
We have some more exciting news. Jackson was evaluated for a Gait Trainer today. It is essentially a glorified walker. It comes with full supports, and over time as he builds up muscle strength the supports are taken away. I actually got to see him take his first steps during the fitting! There is no stopping this kid! So it will replace the order for the Stander that we initially ordered to help him stand... well he mastered that before the stander could even get shipped, so we are moving on to the next thing! Jackson can stand at a coffee table unsupported, but he can not get in to position by him self. It has perplexed a few of his therapists... he can stand, but not sit... interesting. Hopefully the Gait trainer will help strengthen his back muscles, and he can start sitting while he is learning to walk. He will get there... just at his own pace in his own way.
I wanted to especially thank my mom who has been a wonder-woman through this whole thing. She was my savior! She took the time to learn how to care for Jackson and his trach. She comes over almost every day and relieves me for a nap, grocery shopping, or whatever I need to do. She even would babysit so Nick and I could go out for an evening. Caring for Jackson was not an easy thing, and there was A LOT to know. She did it all because she loves this little boy, and the reward of watching him grow and thrive! Jackson absolutely adores my mom, and I do too!
I can't express just how happy of a boy Jackson is. If you ever spend a day with him, believe me it will change your life. His smile is so infectious! Now that he is trach free his laugh is to die for! Things are falling in to place, in God's time. Thank You Lord for blessing us with such a precious gift!
It's almost surreal, and it all happened so fast. We checked in to the hospital hooked him up to some monitors, and then they just told me to take it out... that's it. I sat him up and unhooked the straps and pulled it out. He cried initially and it was music to our ears!
Hearing your child cry for the first time always melts your heart... hearing your child cry for the first time and then saying MAMMA... bring on the tears! His first word...Mamma! It was absolutely beautiful. His voice is still soft and a bit raspy, but that will go away as he uses it more. After the trach was taken out we put a bandaid over the Stoma (hole where trach was placed) and just waited a few hours to make sure he was not going to have any issues. We then moved in to a short stay unit and just hung out all day and watched TV, and played with toys. He went back to the sleep lab that night for a full Sleep Study with full monitoring. They didn't get us in until about 10:30pm and Jack was getting sleepy. Heck we were all sleepy! He cried himself to sleep as they attached monitors all over his body. Nick and I stayed in the room with him and were "cozy" on a child sized hospital bed. We were so tired it didn't matter. They woke us up around 6am and started taking all of the monitors off of Jackson, and then put us back in the short stay unit while we waited for a doctor to review his sleep study. Apparently all was good because the Doctor said he does not need the trach, and he does not need oxygen any more! We packed up Jackson's stuff and headed home! For the first time in his life Jackson was a Wireless baby! (except for the feeding tube).
It has been a week since Jackson's trach was removed, and wow does time fly! There have been so many opportunities opened up for ALL of us! The biggest thing is SLEEP! Jack does not need suctioned anymore, and does not have anything attached to him that would need attention in the middle of the night. Where before we would suction him 3+ times during the night, and occasionally get up if he pulled his oxygen mask off of his trach. Oh and there are no more ALARMS! Nick and I both still have dreams that Jackson is BEEPING! We also don't have to pack the entire house when we go places anymore! We used to always be on a timer... 4 hours is the longest we could stay out without running out of oxygen. Day trips and over night trips were few and far between, but I now see MANY of them in the near future! It's very different to have just Jack and a Diaper Bag... is this all a kid really needs?
On Saturday we took Jackson to the Pool for the first time! He was not too sure what to make of it at first, but he finally got used to it. He loved watching the other kids play and splash. We were not 100% sure if his trach stoma had closed yet so we only had him in water up to his waist. It was a good time to get some much needed sun. Jacks cheeks got a bit Rosy even with SPF 50. Overall it was the perfect day, and we will be going back to the pool as often as we can!
We have some more exciting news. Jackson was evaluated for a Gait Trainer today. It is essentially a glorified walker. It comes with full supports, and over time as he builds up muscle strength the supports are taken away. I actually got to see him take his first steps during the fitting! There is no stopping this kid! So it will replace the order for the Stander that we initially ordered to help him stand... well he mastered that before the stander could even get shipped, so we are moving on to the next thing! Jackson can stand at a coffee table unsupported, but he can not get in to position by him self. It has perplexed a few of his therapists... he can stand, but not sit... interesting. Hopefully the Gait trainer will help strengthen his back muscles, and he can start sitting while he is learning to walk. He will get there... just at his own pace in his own way.
 |
| A preview of the Gait Trainer we fitted him for (this is not Jack in the picture!) |
I can't express just how happy of a boy Jackson is. If you ever spend a day with him, believe me it will change your life. His smile is so infectious! Now that he is trach free his laugh is to die for! Things are falling in to place, in God's time. Thank You Lord for blessing us with such a precious gift!
Saturday, March 5, 2011
The "Aunts" Come Marching In!
Friday night we packed up and headed to Cicero! Jackson is 100% back to his happy self just in time to see Aunt Betsi & Aunt Susan! Wherever we go Jackson is inevitably the life of the party and Nick and I are just "escorts." :) After a fun filled evening we were sure Jackson would come home and tucker out. He fought his sleep the entire ride home, and crashed as soon as he was in his crib!
We are resting up for another big week next week. Jackson's Synagis shot is on Monday... only 1 more after this one, which means we have ALMOST made it through Jackson's 2nd RSV season! (fingers crossed). Then his therapies (PT, OT, and Speech) are back in full swing after taking 2 weeks off while being sick. Hopefully Jackson will be up to it (more like I hope I am up to it!)
We are resting up for another big week next week. Jackson's Synagis shot is on Monday... only 1 more after this one, which means we have ALMOST made it through Jackson's 2nd RSV season! (fingers crossed). Then his therapies (PT, OT, and Speech) are back in full swing after taking 2 weeks off while being sick. Hopefully Jackson will be up to it (more like I hope I am up to it!)
Jackson loved lounging with Aunt Susan. He was all smiles!
Aunt Betsi and Grandpa Jim move right in when Jackson offers up a free head massage!
His new favorite thing to do...daddy's too :)
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