Archive Page 3

Some updates . . .

It has been 10 months since Parker’s surgery. Last week we were down in Cincinnati for his routine follow up. It was an eventful trip. First we went to the Voice Clinic where they assessed and analyzed Parker’s voice. The hospital is running a long term study to research vocal quality post LTP and he is enrolled in the study, so we will attend the clinic probably once a year for the forseeable future. His voice is great. Little of  the growly, husky vocal qualities that can be present after this surgery are present in Parker’s voice. It does show up occasionally when he forces sounds but our goal is give him alternatives so he doesn’t fall into a routine where that is just what he does.

The next day we headed back in the OR for a bronchoscopy. Unfortunately, Parker has had some nighttime breathing issues. We felt confident waiting until our scheduled appointment but also knew they needed to be addressed. It turns out that once again the “Perfect Storm” afflicts our little stinker. There are three issues that come into play while he is asleep. None of the issues by themselves would be causing issues but combined, they do.

First, when he falls asleep his tongue falls back into his mouth pushing his tonsils over part of his airway.  Second, his arytenoids are partially prolapsing. (This is a piece of cartilage near the vocal cords.) Third, the muscle at the back of the tracheal rings is flopping partially into his airway. Each of these things takes a little bit of his airway away while he is sleeping and the result is that he has to work harder to breathe than he should. This might explain the constant waking and a sleepy mommy. 

The plan is to have a sleep study done to see how serious the issues are while he is aleep – how hard he really is working, what his oxygen levels are, if he is sleep deprived, etc. From there we will make a plan moving forward. We could take a watch and wait approach or we may need to intervene surgically by either removing the tonsils and/or lasering down the arytenoid cartilage.

We  also learned that Parker has a testicular hernia that will require a surgical repair. We are working with Cincinnati Children’s to try to coordinate the sleep study and the surgery for the same trip. I hate to laugh at my son’s big, blue man parts but really, all Ian and I can think is that only this kid would get that . . . The stories we will tell him someday!!!

Our new favorite movie is “Everyone’s Hero.” So, in the words of Brooks & Dunn . . . we’ll “Keep on Swinging.”

Advertisements

9 months later . . .

Hard to believe that Parker’s surgery was nine months ago. We’ve had a lot of changes in that time . . . no more trach, we moved, Parker started preschool for the first time, and we’ve started speech therapy.

Parker is doing really, really well. He seems to weather illness and colds quite well, which was a concern of ours going into the first cold and flu season post surgery. He does seem “junky.” Meaning I always try to get him to cough because it seems that there is crud jiggling around in the back of his throat. This is a common note of parents of kids who have been decannulated. I guess these kids are used to having that stuff suctioned out for them and more importantly they are used to something (a trach) being there and they just have a higher tolerance for something that would drive me absolutely batty.

Speech is coming . . . slowly but surely. Each day, he trys to say new words. His voice is very immature. He says words the way you would expect a 12 or 15 month old to say them. He can’t say sounds that require his tongue to touch the front of the roof of his mouth. Do he says “rink” instead of “drink” and “a a” instead of “da da.” It is frustrating for all of us because he clearly knows what he is saying and we don’t always know what he is talking about. He does still use a lot of sign language, but interestingly, as soon as he clearly connected that he could make verbal words, he has less interest in learning for ASL and in using it.

Parker was supposed to go to Cincinnati next week for another follow up bronchoscopy but he has an upper respiratory infection so we’ve post poned it for a month. We will be interested to hear what they have to say and we hope that he will be cleared for annual visits moving forward.

Happy New Year!

A heavy heart . . .

I woke yesterday to the news that one of my favorite trach babies passed away in the evening on Wednesday. Tommy won a special place in my heart with the first picture I saw of him. He was always happy and smiling and seemingly blissfully unaware of the danger his little body was in. He was not only a trach baby, but also a heart baby. Tommy needed one more open heart surgery to repair his tiny heart, but on Wednesday, after going into respiratory distress his heart couldn’t go on. He would have turned two next month.

My heart is so sad for Tommy’s mother, Rene. She, too, found a special place in my heart. Though our personal circumstances were different and we lived half a continent from one another, here was another mother of boys who suddenly found herself thrust into an unknown world of doctors and specialists and medical terms. Each day, I enjoyed reading about Tommy’s successes and Rene’s hilarious stories of raising her boys.

As you know, raising a child with significant medical needs can be a financial strain. There are many things that insurance and government programs do not provide. These things aren’t luxuries, they are necessities and often they are very costly. Rene and her husband Rob have struggled over the past two years to meet every one of Tommy’s needs and also the needs of their other children. Often at great sacrifice to themselves.

Today, a memorial fund has been set up to help this family meet Tommy’s final expenses. They live in South Carolina but their hometown is in Kentucky and they are working to come up with the funds to assist the family in their travel to and from Kentucky so that they may lay Tommy to rest in a family plot.

I ask that if your circumstances allow that you consider a small donation in honor of Parker to the fund. There are two options:

Paypal my account (suzanne@suzanneuptonphotography.com) and on Sunday or Monday I will contribute the funds together from Parker’s friends.

Or you may mail a check to: First Federal Bank – Thomas Lee Dereksen Memorial Fund PO Box 118068, Charleston, SC 29423-9910

Thank you.

First Follow Up

Last week we went to Cincinnati for Parker’s first follow up appointments since his surgery. We had two appointments. On Tuesday we went to voice clinic. At this clinic they did a few things to evaluate his vocal quality. First off, they took us into a sound room and recorded his voice. Parker doesn’t exactly “speak” on command, so we had to resort to some fun and games with bubbles and tickling to get him to squeak and giggle. They record the voice and evaluate its volume, strength and tone.

Next, we did a video scope of his vocal cords. This isn’t the most fun part of the visit as it requires a large fiberoptic camera to go in through the nose and down the throat to just above the cords. It is actually pretty interesting for us to see because we get to watch it real time. At one point Parker coughed up some nice lung snot that (on the screen) appeared to be flying off the screen and into my face. I ducked . . . causing some chuckles with the doctor and speech pathologists who were in the room. I guess they are used to snot bullets on screen. I’m used to snot bullets from the trach and with those you’d better duck or you will be covered!

The consensus was at voice clinic that anatomically everything looks perfect. The doctor believes that there is no reason that Parker shouldn’t have a perfect voice. At this point, he just needs to learn how to use his voice and manipulate his mouth and the air in it with purpose. He will begin speech therapy in a few weeks. In the meantime, we are working hard to teach ourselves sign language and it has been a lot of fun. He’s learned a lot of important words . . . hungry, eat, drink, potty, help, NO!, done, sleep, book, etc. He’s also learned some words that don’t seem so important . . . weiner and porcupine come to mind. I shouldn’t be surprised, really. He is a boy after all!

On Wednesday, Parker went back in the OR for a rigid bronchoscopy. We knew going in that if they saw any issues that could be resolved that they would take care of them on the spot. Potential issues would be granulation tissue or potentially the airway would need to be expanded (think balloon angioplasty). When the scope took longer than usual I started to get worried that they’d had to do something extra. All of my worry was for naught . . . the doctor said that Parker’s airway looked PERFECT! Music to our ears. Perfect voice potential, perfect airway! It turned out that the extra time was from trying to get his IV started. They had to stick him four times to get it. I’m glad he was asleep for that part.

After our appointments we went on to Alabama for a few days to visit Ian’s mom. Now we are in Indiana for a few days to visit my parents. I have a lot of great pictures to share . . . I will post a slide show when we get home.

I have to admit that Ian and I still look at each other and occasionally say “wow, three months ago we’d be doing this with a suction machine, isn’t this nice!” I can’t tell you how much we hope that day comes for all of our trach friends.

Yes! We are home.

I know, I know. I’ve been remiss. That and a little busy. Between enjoying Parker’s newfound voice and preparing to move next week I haven’t had time to post and confirm that we are, in fact, home. Parker has not missed a beat. He’s up to his old antics and we are reasonably certain that once he actually starts talking that he will take after the Turpin side of the family and never shut up. I promise to post pictures of his naked neck, just as soon as I find my camera and take some. Stay tuned.

Today is Mother’s Day. In the last year and a half I’ve had the pleasure to meet a lot of amazing mothers. Mothers who endure so much more than I did with Parker and who don’t complain nearly as much as I did. One of those mother’s is Angie, her son Ayden has a very rare form of dwarfism and is in Cincinnati recovering from an LTP that he had on Friday. Ayden is 4 years old. While we were in the hospital the doctors told us how over the last few years they’ve really been pushing the envelope on how long they sedate and ventilate LTP patients. The ventilator can cause airway issues in and of itself and longterm use of sedatives and paralytic drugs don’t come without their consequences either. One day they mentioned that they’ve been able to rapidly wean kids as young as 4 off of the ventilator early and keep them just on pain management drugs. They have to be mature. They have to be willing to lie still and not compromise the graft site. They have to understand what is happening to them and what all those tubes and wires are for. These are not things we could see any of our children handling at the tender age of 4! Today, Angie got a wonderful Mother’s Day present. Ayden has been awake today! When I read this on Ayden’s blog it brought me to tears. Angie went on to talk about how the pictures of Parker during his surgery helped Ayden prepare and understand what was going to happen, they helped him be awake today. You can see Ayden’s blog here: www.aydenava.blogspot.com

Someone posted this on my trach forum. I can only truly relate to parts of the story. But, I now know too many moms who can relate to the whole thing. Happy Mother’s Day to each of them!

Mothers Lie

By Lori Borgman

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips,
button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe
points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palate that didn’t close. The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of
devastating news. It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

There’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper
to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, the
well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy columns like this one-saluting
you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.”

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of the draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July,
counter-balanced against the stubbornness of an Ozark mule. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a woman I pass at church and my sister-in-law.              
You’re a wonder.

Lori Borgman is a syndicated columnist and author of All Stressed Up and No Place To Go

Happy Day!

We are back from the OR. I don’t think Parker has ever been so happy to see a graham cracker in his life!

The scope went well. His airway looks great and the best news: we don’t have to come back for three months! Of course, if we have any issues, concerns or questions we can come back sooner but we don’t have to!

We will stay in the hospital tonight and get discharged in the morning. Ian will be here tomorrow to pick us up and we will head to Michigan for the night and then on to Whitby and big brothers Thursday. I anticipate a crazy homecoming.

Monday update.

We have had a busy few days. On Saturday, Grampa Ed and Nana (Ian’s dad and his wife) came to visit. On Sunday, Grandma and Grandpa “Bug” (Suzanne’s parents) came to visit. Today, our friend Robin from the tracheostomy forum came to visit. Robin is a trached adult. She was one of Dr. Cotton’s first patients when he came to Cincinnati (after his Fellowship at Sick Kids). He still follows her to this day, so she was here for a visit. The forum is for the families of kids who are trached but I can tell you that it is absolutely invaluable to have Robin and the couple of other adults with trachs. They can answer the things we wonder about: what does it feel like to get suctioned or have your trach changed? How does it feel to eat? Etc. Robin even brought us a loaf of homemade bread which we plan to break into soon!

Parker didn’t go into the OR today. He is scheduled for 8:45 a.m. tomorrow. Hopefully there will be no “news” from the scope and a definitive time will be set for his release from the hospital. He’s starting to get a little stir crazy and bored I think. Can’t say that I blame him. I know that seeing his brothers will be a big push to get him closer to his former strength and stamina. And getting an uninterrupted nap won’t hurt either.

I spent a long time on the phone today with a nursery school in Grand Blanc where we are moving. We didn’t put the other boys in a program when they were two years old but we (along with the speech therapists) think that getting him into a program next year will help his language development. This school already incorporates sign language into their toddler program and they seemed very willing to learn more and help Parker, should we enroll him. Our goal is to have Parker’s language, vocabulary, and voice quality as “typical” as possible by the time he enrolls in Kindergarten.


Where in the world . . .

Blog Stats

  • 23,043 hits
Advertisements