Sunday, August 11, 2013

Super Joe- Post Surgery Blues

Reporting for surgery!

This will be short, sweet and quick. Joey did awesome in surgery on Thursday to have his adenoids and tonsils removed and his ear tubes reviewed. He did need a little oxygen post-op as well as some morphine and Decadron. He came out of being intubated with a very "croupy" cough according to his surgeon, so they kept him on Decadron (a steroid) during his hospital stay.

This mini-car was a saving grace! Surgery wasn't until 12:15 and Joey last had food the night before at 7pm.

We had a scary incident on Friday when Grandma and Grandpa brought Tommy to the hospital to visit. Joey had gotten some of his medicine and then after his nurse left the room he started choking, and choking and choking. Tommy stood to the side of Joey and kept saying, "Just keep calm, Joey, just keep calm, Joey." I was holding him and it got scarier and scarier. They think his throat must have spasm-ed and then sealed because he started to turn blue and could not breath. Tom ran in the hall screaming, "My son is choking!" and I remembered in the back of my head to pull the cord out of the wall if there was an emergency and so I pulled it. Within seconds there were 10 nurses in our room and he finally started to breath on his own.  That was our big excitement in the hospital and we were so glad when it was over. I felt horrible that Tommy had to be there, but he was such a great big brother.

Finally sleeping after surgery.

His new position.

He recovery and post-surgery has been a lot like some of the other experiences we had heard about. He has very little appetite and for the most part doesn't want to eat or drink at all. He's gone from a boy who loves to eat and drink his milk and water to a boy who might eat once a day and might drink half a sippy cup. As long as we can keep a little something in him and as long as he keeps having wet diapers- we can hopefully stay out of the ER. 

His breath is even more ridiculously ghastly than I had imagined. We were warned and warned again and I had no clue that his breath could really be THAT bad! Well- it is. It's comical- I feel bad because I feel like the entire house smells like his breath. Aggghh!! Poor kid-- cannot imagine what that tastes like!

So we've got the bad breath, his not wanting to eat or drink and then there is the process of trying to get his medicine in him. Joey. Hates. Taking. Medicine. He just does. He's had too much of it in his life and he cries and chokes and it takes Tom holding him and me squeezing a tiny bit of liquid ibuprofen in his mouth over about a 10 minute period. Normally I will just crush up the kid ibuprofen, but since he won't eat, that hasn't been working. I made home made chocolate pudding and put it in there- no dice. We gave him vanilla Haagen-Daaz (thank you, Uncle Tim!) with a quart of Hershey's syrup, plus the ibuprofen crushed up in it- no dice. Super Joe can smell the medicine a mile away.

Since getting home on Friday he has mostly laid on the floor saying "Ouchy". It is seriously the saddest thing ever. If we can get enough of his medicine in him he perks up, but it's been a major challenge trying to get it in him every 6 hours. For 7 days.  Bubba has been extra cuddly, but also extra angry. Kind of like we are living with a mini Jekyll and Hyde. He will either want you to hold him or he has started scratching my face. It kind of hurts my feelings. But I get it.  Every six hours I force feed him some nasty berry-flavored liquid ibuprofen he hates. I really do kind of get it.

What else? Oh yes-- we found out that Joey definitely can say the word, "No." Ask him any question right now and he will quickly say, "No."

Other than that- he's going to get through this. We will get through this. Lots of people do. Just kind of bummer right now. But friends and family have been super kind with meals, Popsicles, balloons, a mini bottle of rum (thank you!!!) and more- thank you for the kindness and prayers.

I thought 2 weeks off of all his therapies was a bit extreme, but he isn't even at the point where he is able to leave the house, much less exert any extra energy. It is nice to be able to focus on getting him better. 

Hope you have a great week and maybe by the next time I can sneak in a chance to blog, Super Joe will be back to himself!

We have to go to bed because Joey just went to bed 2 hours ago and we have to be up in 4 hours to give him his medicine. Night!

Wednesday, August 7, 2013

Mommy- Why Are Joey's Hands and Feet Blue?

That was Thomas Henry's question tonight when we talked about Joey having surgery again tomorrow. I explained that Joey had to go into the hospital and that I was going to stay the night with him, but that Daddy would stay the night with Tommy. And that's when he said, "Mommy- why were Joey's hands and feet blue?" And I turned around. Then he said, "Mommy- why couldn't Joey breathe that day?"

I said, "Well, honey, Joey had pneumonia that day, but we didn't know it and he was very, very sick.  But then he went to the hospital for awhile and he got much better. This next surgery is going to try and help him not get so sick anymore."

"Mommy, I'm going to stay the night in the hospital with you and Joey."

"Oh, honey. Only mommies or daddies are allowed to stay the night because the rooms are very small, but Joey and Mommy should be home by Friday. And-- you and Daddy get to stay up extra late while we are gone!"

He seemed skeptical and suggested that I take some DVD's for Joey to watch, "Great idea, Tommy. Let's make sure to pack some of Joey's favorite shows. Great idea!"

Oh- my heart swelled up for a moment. On one hand, Joey has no idea what is about to happen and on the other hand Tommy doesn't exactly know either, but he knows it's a trip back to the hospital. He's a good brother. Such a good brother. We are both going to miss Tommy tomorrow night.

Tomorrow morning, we take Joey in for him to have his tonsils and adenoids removed. He's had some breathing issues when he gets sick and he has had multiple episodes of croup and a brutal case of pneumonia this past spring that he is finally (knock on a MAJOR piece of wood) getting over. It seriously took him about 3-4 months to get over pneumonia. All kinds of secondary upper respiratory infections.  The eye surgery on June 21st didn't help much and just re-irritated his airways, but he seems (again- knock on wood) to have finally reached a calmer place.

His operation is scheduled for 12:15 pm at Akron Children's and then he and I will stay the night and hopefully go home on Friday. If you think about it- please say a little prayer that all goes well and that this procedure will help him to not be as sick this year. Every sickness and every hospitalization sets him back just a little bit more and they all add up. We have big hopes for Super Joe as he turns 3 this month!

He has come so far in the past year and as my husband says-- Joey always makes progress. Sometimes it can be slow, but he always makes progress. 

Here is the Buddy Walk video we made for him this year and it is a great testimony to all of his hard work and progress.

If you would like to walk with us on August 17th-- you can register the day of the walk.  Here is more information on the walk. 

Monday, August 5, 2013

Join us at Yoga Bliss on August 9th!!!

Joey earned his Victory Gallop medal today after finishing his first session of horse therapy. His face says it all!
Our local Down syndrome organization, The Up Side of Downs, hosts a Buddy Walk every year. For the past three years I have worked on this committee and have helped try to raise money, raise awareness and help the chairs put on an incredible walk that over 4,000 people attend. 

For our family, the local Buddy Walk is an incredible day of joy, camaraderie, seeing friends we don't get to see often enough, meeting new friends and making memories.

A small portion of the proceeds from the Buddy Walk (7% to be exact) go to the National Down Syndrome Society, which is one of the larger national advocacy organizations for Down syndrome.  

The other 93% of the money raised is used locally to serve over 800 families caring for a loved one with Down syndrome.  Some of their amazing programs include: Parent to Parent NetworkBuddy WalkFamily Grant ProgramUndergraduate Scholarship Program for General Education (K-12)Directory of Local, National & International ResourcesParent Support Groups, Disability Awareness Program, Education Conferences and last but not least-- Social Events.

Yoga Bliss Benefit on Friday, August 9th from 7-9pm

This is our third year of walking in the Buddy Walk since Joey was born on August 27, 2010. Our goal for this year was for him to walk by himself in the walk, but we are not quite there. He is working really hard on this and we have no doubt that by the 2014 walk he will walk across home plate at Progressive Field. This year we will help him across-- but he's getting there!!! Every day he gets a little bit stronger!
Joey playing peekaboo with his door.

This year, some of Joey's friends are lending helping hands in all different ways to help us raise funds to continue the very important work of The Up Side of Downs. My parent's have donated the purchase of all the hand fans for this hot day, another friend has donated radio air time, another friend has donated ad space, another friend has donated gluten-free cake balls, another pair of friends have donated an 18 Liter bottle of French wine that we are selling raffle tickets for (email me here if you would like to purchase a raffle ticket for that one!) and Tracy has donated an awesome Yoga Class Event to help our Buddy Walk team raise money!

The first event is this Friday, August 9th from 7-9pm.  Our talented and beautiful friend who I teach spinning with, is also a yoga instructor and she has put together an incredible evening of Vinyasa Yoga for all levels. Tracy is one of those amazing moms, teachers and humans who I met when I first moved to Ohio and who I have admired and aspired to be more like since the day I met her.  Here is all the info on this awesome event she has created:

Join Tracy in supporting Joey's All Stars and the Up Side of Downs Buddy Walk.
Located behind Macy’s at 3045 Smith Road Akron, OH

Your $35 donation includes a ninety minute (friendly vinyasa) practice, 
opportunity to win one of many GREAT PRIZES, refreshments, child care and
all kinds of yoga-feel-good!
Prosecco, desserts and chocolate will be served afterwards!
All proceeds go directly to Up Side of Downs.
Please sign up in advance…
indicate your need for child care. 
To sign up-just call Yoga Bliss: 330-576-6687
Let’s pack the house for Joey!!


  • Polished Nail Bar Pedicure and Gift Basket of Nail Polishes (Value: $100)

  • Sara Fraraccio Designer Blowout and Conditioning Treatment for Two (Value: $104) and Gift Basket of Kerastase Products (Value: $137). Total Package Value: $241

  • Dave Towell Cadillac Saab Car Detailing (Value: $200)

  • Pink Petals Floral Shop $50 Gift Certificate and Gift Basket (Value: $100)

  • Ritzman Pharmacy Beauty Basket (Value: $65)
If you have any questions about the event, please send me an email.

We hope to see you on August 9th for a beautiful evening filled with exercise, positive energy and fun!

If you can't make it to the Yoga Event- we hope you can walk with us on Saturday, August 17th at the Buddy Walk. Registration begins at 9am. Or, join us as a virtual walker by clicking here.

To order raffle tickets for the 18 Liter bottle of French Bordeaux-- click here.

Namaste and Happy Monday!!!

Thursday, August 1, 2013

Tonsillectomy and Adenoidectomy Recovery Strategies for Children with Down Syndrome

One week from today is the day! Joey is going in for a tonsillectomy and adenoidectomy. This will be his sixth or seventh surgery (I can't believe I am losing track) before he turns three at the end of August.

I have tried to come up with every excuse in the book not to go through with it and to figure out a way to cancel it, but I can't. He's had too many stressful breathing situations when he gets sick. A case of Croup usually sends Joey into the hospital and sometimes it sends him in for a few nights. After his last eye surgery in June he had multiple scary breathing issues from the swelling in his throat from being intubated. He just doesn't have much room in there and when he gets sick it gets really hard for him to get enough oxygen. Add that to his congenital heart disease and we get completely freaked out when Super Joe can't breath. 

Photo: Physical therapy, Speech therapy, Swim therapy, Horse therapy, Occupational therapy ... And it's only Wednesday. Super Joe and I are beat!!
Sleepy Joey. 
The good news is that I have heard multiple stories of little ones coming through their T&A recovery without a lot of difficulty! The bad news is that none of those little ones I heard about have Down syndrome. 

People with Down syndrome often have much smaller passages and airways. Because Joey hates taking any medicine (we will have to crush up his jr. ibuprofen and sneak it into yogurt) and because he is not able to verbalize most of his feelings, I expect that we will be facing some challenges following his procedure. 

This is an excellent discussion on the issue of airway obstruction from the NDSS website:


Airway obstruction is common in children with Down syndrome, with some studies suggesting that nearly all persons with Down syndrome have some form of sleep-related obstruction. Loss of sleep due to apnea and poor quality sleep due to sleep disordered breathing can result in sleepiness and disturbances in fine motor skills, and can also affect behavior and learning. Many people with sleep disorders fall asleep with passive activities such as riding in the car or school bus. Long term complications of sleep apnea include systemic hypertension, pulmonary hypertension, heart failure and even death.
Obstructive sleep apnea occurs when the airway is blocked during sleep. This can be caused by the small upper airway, large adenoids and tonsils, obesity, collapse of the airway due to hypotonia of the muscles of the throat, and increased secretions that can be characteristic of persons with Down syndrome. Obstruction can also occur from glossoptosis, a condition where a relatively large tongue falls back into a smaller airway during sleep.
Obstructive sleep apnea is often overlooked by caregivers and medical professionals, as sleep disturbances often occur unobserved or have been present for so long that parents assumed that was “normal” for their child.
A comprehensive clinical exam, X-ray, and thorough sleep study should be conducted if sleep apnea is suspected.
Airway obstruction can be treated both medically and surgically, and sometimes both treatments are necessary. Saline spray can keep the airway clear. Other medical options include the use of a Continuous Positive Airway Pressure (CPAP) machine during sleep, which provides some pressure with each breath, keeping the airway open while a person sleeps. Weight reduction may also help address sleep apnea. Surgically, removal of the tonsils and adenoids (T&A) is the first line of treatment of airway obstruction and sleep apnea in children with Down syndrome. Although removal of the tonsils and adenoids is usually curative of most sleep apnea in children, more recent studies suggest that this is not always the case with individuals with Down syndrome and further evaluation and treatment may be needed after T&A. 

Tonsillectomy and Adenoidectomy Recovery Strategies for Children with Down Syndrome

I have been trying to talk to other moms and find some strategies for helping Joey recovery from his T&A surgery next week. One of Joey's friends just had the T&A surgery and did not eat for almost 8 days. His family relied on pediasure and Motrin to get him through. They also found that days 3-6 were much more difficult than days 1-2 post-surgery. 

One mom I spoke to recommended that in addition to making sure to give Motrin on a regular schedule to also make sure that Joey has plenty of liquids so that he doesn't get "backed up" if you know what I mean on all the pain meds. I love that advice!!!

Finally, there is another mommy blogger over at The Chronicles of Ellie Bellie Bear (her daughter is simply GORGEOUS) and she is a nurse so she has some wonderful mommy with a degree advice.  Please note-- this is not medical advice in any means-- it is just meant to be one parent's experience to help some of us other parents. Always consult with your physician for medical advice (instead of relying on the internet and Google like I often do). 

Here you go- a mommy advice guide for T&A survival! Thank you so much Miss Anna for sharing your experiences with Ellie and her T&A journey!

1. The pain varies from individual to individual. It depends on just how "attached" the tonsils are to the throat. Some kids have huge wonking tonsils but they just hang by a thread. Other kids have smaller ones (or large ones) but they are firmly adhered to the throat by a whole lot of tissue. You will not know for sure how Super Joe's are until they actually remove them. As in, you cannot tell just by looking into the throat. . .
This is why some kiddos are bouncing off the walls two days later and why others (like my kiddo) moaned and groaned and laid around.
2. Hospitals have different rules around the US. Bear desatted a lot during sleepy time. 79-88%. She got to have some O2 on over night. Surprisingly, they let her go home. It was up to the doctor and the thought was Bear was oxygenating low pre-surgery so let the poor kid recover at home. At CHOP, kids have to be satting >95% without oxygen even when asleep. This can lead to living in the hospital for a few days. Honestly, if we had been at CHOP, we would still be there. . . okay I am exaggerating but we would have been there a few days at least. My thought is to charge the iPad, bring the charge, bring spare clothes. (KEY MOMMY POINTS!!!)
3. The more hydrated the child is, the easier the recovery.

When they remove the tonsils and the adenoid, scabs will form. Keeping those scabs moist decreases pain. Hydration also prevents trips to the ER due to dehydration. Fluids include semi-solids too--think ice cream and apple sauce. I had this kiddo chugging apple sauce because she wouldn't drink anything else. STRAWS--okay some docs say no to straws after T&A while others say no restrictions. (just as some say they can go to therapies when feeling better while others say no for 2 weeks).
4. The 5-10 Day Mark:

As with any scab, it will fall off--this occurs 5-10 days post op. When the scabs fall off, it hurts and there is a risk for bleeding. This why kiddos often need an increase in pain meds. That being said, some kids are running around like wild banshees and you would never know that the scabs fell off.
With Ellie, on day 6 she slept. A LOT. I think she was only up for 6 hours total. She also wouldn't drink. That was the only day she would not drink. That was the day she lost most of her scabs. She lost the rest after week 3.
5. MUCUS or SNOT or DROOL or all of the above

It will be thick. Really thick. And copious. Surgery is surgery and as you already know, cutting into tissues is trauma and trauma leads to swelling and fluids. Expect to see some snot for several weeks post-op. Expect to hear some snoring as well--remember the swelling.
6. Don't forget the iPad and spare clothes. A few sets.
You know what is fun? Post op emesis (vomiting). What is even more fun is dried blood post-op emesis. Right after you change into the bedtime clothes. Bring several shirts. Between the ice cream, the snot, the drooling, and the vomiting, you will want something semi-clean and non-smelly to sleep in. I learned this the hard way. The iPad is so that you can google everything that looks funky. Or to play Signing Time over and over and over again to keep Super Joe calm 
7. This may be the most important one for pain and recovery: CHEW CHEW CHEW.

I know this sounds strange but you want to keep the jaw, cheeks, and neck muscles loose and relaxed. Especially the neck. Tensing up will increase the pain. Relaxation helps with healing. Gummies, fruit snacks, whatever to move those muscles. Like you mentioned in your post--I avoided all red items--red juices, red pedialyte, red gummies, red jello.

Photo: Super Joe! Working hard at swim therapy!!
Joey is now up to five different types of therapy: PT, OT, Speech, Horse and Swimming!!!! He really loves his Horse and Swimming therapy, tends to be a little bit ornery in OT and Speech and often ends his PT sessions in tears from working so hard. He makes us so proud at each session- even when he is not feeling well he tries his hardest!
Super Joe's doctor wants him to take a break from all of his therapies for the two weeks following his surgery. In the meantime, we are trying to LIVE IT UP before his next adventure!!! This past weekend, this meant a day at the Summit County Fair (thank you Jennifer M. for telling me it was going on!). 
Growing up in Western Nebraska there was one time of year that was more than special, more than awesome-- it was magical. It was the Box Butte County Fair. I remember driving over there with my Grandma Freimuth while she entered a photograph, a painting or a baked good into the fair. I remember attending rodeos and watching the older cowboys and cowgirls ride horses and lasso cattle. The memories are a little fuzzy and vague, but this weekend's trip to the fair brought it all back home. What memories are you working on this summer?

Joey going after Daddy's caramel apple.

Tommy showed off some serious, mad dart skills. Is he going to be an expert at parlor games like his dad?

Joey has become very fond of horses after his sessions at Victory Gallop. He didn't understand why he couldn't ride the horses at the fair.

Learned my lesson on this one- I was staring too long at this beautiful bird when its owner came over and offered to give me a better look at it while I took its picture. Yikes!

The "Fun Slide".

My favorite ride!!! The helicopter. The four of us all got to go on it together.

Have a wonderful weekend!!!