New stuff . . .

I’ve been slow in updating. Part of that is because we’ve been so busy! Part is because, honestly, we’ve been digesting.

As you know, Parker had a sleep study done a few months ago. Per the sleep study, his ENT wanted us to discuss the possibility of placing on CPAP breathing support at night.

Another issue re-surfaced after the sleep study. Most of you will need a little back story on this one: when Parker was about 4 or 5 months old he started having these spells. From the beginning they were obviously triggered by a couple of things: he was mad, hurt, or scared. If we were out of his sight for too long, or his brothers took a toy away, or he fell and hurt himself, these were all sure triggers. The spells are scary. Essentially, he passes out and as soon as his body loses consciousness he finally starts breathing again.

We talked to every doctor we know and described the episodes in detail. Everyone independently assured us that our feisty redhead was holding his breath and that he would outgrow it and our job was to try to avoid the episodes and also avoid collatoral injury if one were to happen.

I never bought it. Those who see me often know that I never, ever felt that was what was happening but despite many late nights on the internet researching I also never came up with a plausible (in my mind) alternative.

Finally, after two years, Parker had two episodes in the recovery room after his hernia repair. He was wearing an O2 monitor and each time his levels dipped into the 40s. The nurse calmly assured me that that was NOT breathholding. I went home and hit the internet again. This time I found an article that resonated. I was certain that what this article described was exactly what was happening to Parker. I passed the article to his ENT team at Cincinnati and they agreed to refer him to Dr. Robert Wood.

In Cincinnati CPAP is managed by the pulmonolgy department. That turned out to be our lucky break. We were going to need to see pulm anyway for CPAP so we got referred to Dr. Wood who is the head of the department. He runs a world class and award winning department just as Dr. Cotton does for the ENT department.

A week ago we saw Dr. Wood. I braced for an appointment where we talked a lot about Parker’s airway history and a lot about CPAP and if I was lucky I might get 3 minutes to say my thoughts on these spells. I couldn’t have been more wrong.

To make an already long story a little shorter, the bottom line was that after lengthy discussions, Dr. Wood agreed that what was happening with Parker was not likely typical breathholding and very likely what was described in the article. He believes that Parker is having an abnormally strong emotional reaction to some stimuli and they are causing an anxiety attack of sorts that renders him unable to breathe temporarily. Further, he is concerned that these attacks have the potential to be very, very dangerous. There is the obvious concern that he will hurt himself falling (he’d fallen down the stairs just a few days before our appointment). Second, Dr. Wood feels there is a possibility that one of the episodes could cause a cardiac arrythmia that could be hard to recover from.

End result was that Parker is currently trialing a medication called clonidine. The drug is used for a myriad of things – lowering blood pressure, meth detox, ADHD, brain injury, among other things. It also acts as a mild sedative or anti-anxiety drug. The article (actually a research article) showed some significant promise in limiting or eliminating the episodes with the drug.

Parker has been on clonidine for a week. He slept for most of the first 5 days but yesterday and today he is mostly back to his normal self. He has not yet had an episode since we put him on the drug. That is good but I don’t count those first 5 days. So, the jury is still out as far as I am concerned but things look promising.

If you are still with me. Wow. There is more.

That was a Thursday. On Friday we went into the OR together with Drs. Wood and Cotton. In looking at Parker’s airway and reviewing the results of the sleep study it was decided that Parker’s apnea is not severe enough to warrent CPAP. In fact, with the exception of tonsils that will eventually probably have to come out, his airway is looking really, really good.

Then the other shoe dropped. Dr. Wood said that there were several concerning events during the sleep study. Several times during the night Parker desat into the low 80s or low 70s for no apparent reason. They weren’t associated with an apnea or really anything else that they could tell from the sleep study. His average sat during the night was 94. That didn’t phase me, because that was pretty typical during his time that he was trached. Dr. Wood wasn’t impressed. In fact, he didn’t like it.

The conclusion was that there is something else. Whatever it is is not airway related. Next stop: lungs and heart.

We are going back in three weeks for a high res chest CT scan and an echo cardiogram. We will also meet Dr. Wood again in pulm clinic to discuss our clonidine trial.

We have no idea what the future will bring. For now, we remain thankful for the fact that Parker in many ways is a very typical little boy. He knows his letters and shapes and is learning to ride a bike. He learns new words each day, though his favorites remain NO and WHY.

Our journey continues . . .

Quick Update . . . and a request.

Parker’s last day of preschool is today. I’m sure he’s going miss it. Somehow, staying home all day with mommy just isn’t as fun!

In two weeks we are headed back down to Cincinnati Children’s. We are meeting with the head of the Pulmonolgy Department to discuss a few things. It seems likely that Parker will need to go on CPAP at night to support his breathing. At this point it is just too labored and too interupted for him to get a good night’s sleep. He will also go into the OR with both Drs. Wood (pulm) and Cotton (ENT) to look again and make sure that that is the right option at this point.

We are all hopeful that CPAP is a temporary measure (6 months to 2 years) to allow Parker’s airway to continue to grow and perhaps avoid the need for future surgical intervention.  Of course, there is a strong family history of obstructive sleep apnea so I, for one, am not going to hold my breath that we will ever get this kid off of a nighttime breathing machine. I’m still playing in my head how exactly we are going to get a feisty, redheaded bulldog  to wear a mask on  his face at night.  Not to mention  we get to go back to the days of a pulse oximeter machine as well.

Ok. Now, for the really important part of my post . . . my sister in law is a marathon runner. This makes her a  crazy person in my book  but I still like her anyway. Well, she’s signed up for Team in Training. If you aren’t familiar with the program it is a marathon training program designed to do massive  fundraising for blood cancer research. Since very few of us have not been touched by cancer, I thought I’d do my part to help her with her fundraising goal. Every little bit counts. And to sweeten the deal, Cathlin offers the following incentives:

For $50 you can add a song to her play list for the race

For $100 she will sell you a mile (mile 25 costs $120)

For $250 she will make you 250 peanut butter cookies with or w/o Chocolate Kisses (or Chocolate Chips) or 250 Chocolate Chip cookies and overnight them to you

For $500 she will write your name on her racing top

For $750 she will help you with your personal tax returns (she’s a CPA, don’t worry!)

For $1000 she will create a one of a kind bejeweled/bedazzled snuggie for you (I have NO idea what this is but it sure sounds fun, doesn’t it? Anyone want to donate $1000 and let us know?

So, if you can donate, please do.  Her fundraising page is here: Cathlin Chyzy – Team in Training.

Thanks!

Lots to celebrate.

April 10th is a big day. This day marks one year since Parker’s reconstruction surgery. One year trach free. It is hard to put into words what this means for us but I assure you it is big! We will probably celebrate somehow – that  is still to be determined and like many things in our crazy household we will probably fly by the seat of our pants! And that is ok – we are used to it by now.

In other news this week: we learned that Parker’s spinal MRI was normal.  No tethered spinal cord. Great news there. Parker also had his hernia repaired on Monday. Another scar to add to his battle wounds. Ian and I celebrated our 9th anniversary this week. I don’t think either of us could have predicted all that would come our way in our first decade together but I’m happy to say that nine years in we are still in love and we still like each other. At this point we plan to keep it that way for at least another 100 years or so!

Coincidentally, this week has brought back a lot of memories for me about Parker’s very first days. Last week, our friend and neighbor had an emergency c-section. She had been diagnosed with a prolapsed cord and was sent straight to the hospital. Thankfully, the newest addition to our neighborhood arrived safe and sound. But in talking to her mom about that day and the delirium and exhaustion she experienced I was reminded of the day Parker was born. After being awake for nearly two days, and going through labor and childbirth I was really not at all in my right mind. Looking back I’m so thankful that we didn’t have to make any really important decisions that day  . . .  big decisions, lack of sleep and epidurals just don’t mix! By the way, I had the supreme good fortune to take portraits of our new neighbor today. If you want to see some of them, peek here: www.suzanneuptonphotography.wordpress.com.

Happy Easter everyone!

Home from the sleep study.

The sleep study was . . .  interesting.

Parker was, once again, an amazing little trooper. He had 10 electrodes on his head. 4 on his face. 2 on his chest and 2 on his legs. He also had two things in his nose, an O2 monitor on his toe and 3 belts on his tummy and chest. And he actually slept, at least as well as he did at home.

Mommy, on the other hand, did very little sleeping. Once he got to sleep I peeked at the O2 monitor. My heart sank as his sats were ranging from 84-89 with rare spikes up to 91. This is, of course, not good. Obviously there are issues. Hopefully they will be easy to fix, like removing the tonsils to eliminate the snoring and apnea. Maybe it won’t be so simple. Now we just wait to hear back from ENT about the official results. I reminded them that we would be down there on the 6th for his hernia repair and that it sure would be nice to coordinate some things. One less trip is always nice. I know they will see what they can do, but I also know that is only a few days away and there are more urgent situations out there.

Here are some images of Parker at the sleep study:

“Nothing good can possibly come of hanging out in this room. Why do all those people in scrubs keep coming in and asking my mom the same questions over and over again. Doesn’t their computer tell them that I was born with paralyzed vocal cords and got a trach and that that trach came out last April when I had an LTP right here at Cincinnati Children’s? Sheesh. I’m getting bored of hearing that story over and over again!”

“What the heck is this thing in my nose? They said they were whiskers like  a cat but I think that was a ploy to let them shove this thing on my face.”

“No comment. I look and feel like a goofball and I’m sure my mom is going to plaster these all over the internet.”

We got to have dinner with Nathan. He is cute as a button. I was just flat out astounded at how amazing his voice is given the fact that he doesn’t have vocal cords and that he doesn’t wear a speaking valve. Kids never cease to amaze me. Unfortunately, Nathan had a cough and developed a fever overnight, so his surgery was postponed. It was a long drive to have dinner with us . . .

One of the hardest parts of this whole experience for me is the fact that we lose trach babies. Two weeks ago we lost Jonah. He was five years old and pulled his trach out in the night and by the time his parents got to him he was gone. It is hard to begin to fathom that life can change like that in an instant and yet it does.

Another little boy, Alize, has come home under palliative care. He’s battled and battled with shunt failure and now they’ve run out of places to place a shunt. His family is spending his last days by his side making every attempt to manage his pain.

We will let you know how next week’s spinal MRI goes.

Busy few weeks ahead.

Tomorrow (Tuesday) Parker and I will head to Cincinnati for a sleep study. I’m sure it will be loads of fun because I can’t imagine there is a two year old out there who doesn’t want to be slathered with electrodes measuring who knows what while they sleep. I promise to post some pictures.

While we are there we hope to meet up with our trach friend Nathan. Nathan is three and will have having a reconstruction surgery done on Wednesday. Please keep he and his family in your thoughts and prayers over the next few weeks. Everyone hopes that Nathan will go home without his trach but his airway is considerably more complicated than Parkers. He was born without vocal cords and with an essentially closed airway. He was trached at 2 hours old and it was by sheer will power that he survived those first few hours.

Next week Parker will have an MRI on his spine. He has a sacral dimple. We like to refer to it as his little crooked bum crack but . . . cute as it is it can be a symptom of a tethered spinal cord among other things. We have very little reason to believe that Parker has a tethered spinal cord but at this point we are just checking out everything to make sure. He’s been full of suprises before so why stop now?

The following week is his hernia repair. We will be back in Cincinnati for that one. It’s spring break for the big boys so we will stay the weekend at Grandma and Grandpa Bug’s in Indiana and do the day surgery in Cincinnati from there. Some of you may be wondering why we are going to Cincinnati for this surgery. It is, after all, a relatively common surgery. The answer is that at this point we are still very concerned about any procedure that requires an intubation. We’ve heard stories of cavalier anesthesiologists using an ET (endotracheal) tube that is too big for a reconstructed airway. This is problematic, sometimes very problematic. We aren’t ready to take any chances.  I’m not sure we will ever be ready to take any chances, truth be known. He’s our baby. So for now, we will pursue all surgeries in Cincinnati with the complex airway anesthesia team at the ready.

Probably sometime after the hernia repair we will learn the results of the sleep study. We may be in for more surgery, we may be in for some watching and waiting. I’m not sure how quickly we will get the MRI results. I’m cautiously optimistic that there is nothing there to worry about. But, hey, if there is an issue, what’s one more surgery? It’s funny. Surgery is never something to be taken lightly. We are all too aware of the risks that anesthesia brings. But, somehow it does get easier. I won’t soon forget that first time we wheeled our tiny baby to the OR for his first broncoscopy it was a truly nervewracking hour before Dr. James came back out to talk to us.

Happy Spring, by the way!

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.”

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