Saturday, June 25, 2011

Aspiration- Something You Would Probably Not Aspire To

I wrote portions of this blog months ago because I really wanted to put some information out there about aspiration and thickener and all that goes into it for other moms who are dealing with it.  However, before we get to the fun aspiration explanation...there are things to celebrate....

Why yes, that is Thomas Henry putting some money into his dinosaur/dragon (we can't come to terms on what it is-- I say dragon and he says dinosaur).  He gets money to feed Mr. Dinosaur/Dragon when he goes on the potty!!!!  Yay!!!!  And by going on the potty, I mean that he was buck naked and I begged him to try and use and then I left him alone and he came running into his room yelling, "I peed!".  It was quite a big event today.  I'm hoping we are making a turn for the better.  I told him yesterday that he wouldn't be allowed to start pre-school in September unless he uses the potty and to that he told me, "I don't want to go to school."  Okay.  Note to self that the school bribe/cajoling bit is ineffective.  So far money and gum (we're also working on learning to chew and then eventually spit out the gum) are the big motivators.

Freddie, Jill and Henry visiting the boys and bringing a yummy dinner.

Miss Jill had a very cool t-shirt made for Joey.  We LOVE it!!!

How many kids can fit into the least 3!

In addition to our potty adventures, we also had a big day on Friday at the cardiologist.  We were there from 9:30 am until 1:30 pm and Joey's heart was checked every which way-- even in 3D.  It was a wonderful appointment in which we learned that his repair looked great, the VSD has appeared to close, the mitral valve does not currently have significant leakage and that for the next 30 days he is going off all of his heart medications!  

Friday continued with a wonderful visit with Jill and her boys and then Saturday rolled into more playing with friends and a cookout.  I have said it again and again, but the kindness and the prayers and the incredible power of so many amazing people pulling for Joey to have a successful surgery and recovery have really helped both him and us to get through what would have been a much more difficult time without all the help and kindness.  It is honestly overwhelming and when I say overwhelming I mean my heart swells up, my eyes fill with tears and my throat gets choked up with gratitude and thankfulness.  There are so many things we haven't been doing and haven't been doing as a family because we were trying to get Joey safely through the winter and RSV season.  Then we were trying to get and keep him healthy before surgery.  All things that we wondered if we would be able to do this summer depending on how Joey did and how he would be doing.  To be doing those things-- playing with friends, family bbq's and trips to the pool-- are just incredible.  Joey just continues to heal and amaze us all every day and we are soaking in every precious moment to celebrate it!

Aspiration and Joey

When I started this blog I wanted to provide a forum to help educate and inform the world about what it means to have a child who happens to have Down syndrome.  One of the posts I’ve wanted to do for a long time is about a feeding problem called aspirating.  You know when you drink something and it goes down the wrong pipe and you choke on it?  That’s basically what aspiration is (a more clinical definition is: When solids or liquids that should be swallowed into the stomach are instead breathed into the respiratory system, or when substances from the outside environment are accidentally breathed into the lungs).  For babies, when you aspirate formula, medicine, or food it can lead to pneumonia or other upper respiratory issues.  It’s not one of Joey’s more exotic health concerns like his heart or the nystagmus, but it is one that affects him and us every single day and multiple times a day. 

Holding his own bottle!  It's empty, but it's a great start.

Joey has had a few feeding issues throughout his short life.  He tried to breastfeed when he was first born, but then he spent his first five days of life under the bilirubin lights and by the time we were allowed to hold him he was so tired from thrashing around that he usually just fell asleep out of sheer exhaustion.  We followed up with a lactation consultant multiple times and he just didn’t have the energy or muscles to latch on and feed properly.  We quickly realized that if we wanted him to receive breastmilk then I would have to pump.  And pump.  And pump.  For six months.  I know so many mamas who do it for a lot longer, but six months was my goal and it was the best I could do while working full time and raising Joey and Tommy. 

When Joey started on the bottle he did okay, but he was always wheezing.  Then coughing.  Then choking.  Feeding was becoming a very stressful event.  When you’re only a few weeks old it’s basically all you do other than sleep and have messy diapers.  We couldn’t figure it out.  Was the coughing and wheezing from his heart issues (for the first 10 months of his life it was an easy target to blame basically everything and anything on)?  He seemed like he was eating okay, but there was always something that was not quite right.  A few weeks after he was born he started having very scary episodes after he ate.  About an hour after we gave him a bottle he would start to gag and choke.  Then he would let out what was kind of like a burp, but was a more forceful “Pop” of air out of his mouth and then he would projectile vomit.  Yep—every hour after he ate.  It was one of the more stressful times.  I was already mourning that he couldn’t breastfeed and that we wouldn’t have that special bonding time.  Now adding in coughing, choking, wheezing and puking and it was a lot to take in.

We finally got him scheduled for a swallow study (known as a videoflouroscopic swallow study), which is a test for children who are having problems with feeding and/or swallowing.   This involved taking him to the medical imaging department at Children’s hospital , putting barium into his breastmilk and then strapping him up in this special carseat looking like chair and feeding him all while the radiologist and speech pathologist watch the “moving x-ray” to see where the liquid goes.  Special equipment is used to provide this “moving x-ray” of his swallow.  The barium that’s added to the breastmilk makes it visible on the x-ray.  The speech pathologist specifically watched the x-ray to see if there were any signs of aspiration -- when liquid goes down the wrong airway.

Bingo! They saw him aspirating immediately.  So we added the nectar consistency thickener and tried it again.  Still aspirating.  Then we added the honey consistency thickener and he was fine and able to swallow his bottles without vomiting, without choking and without wheezing.  Why does he aspirate? We are told that it has to do with low muscle tone in his mouth and also in his neck.  We hope that he will outgrow this stage and not have to use the thickener for two long.  We’ve been told that kids can be on it anywhere from 2-5 years. 

Simply Thick  is the thickener that the speech pathologist recommended.  Our first experience with the thickener was using these ketchup-like individual packets.  With the honey consistency we use one packet of honey thickener per two ounces of fluid.  We usually give Joey 6 ounce bottles of formula.  That means 3 packets of thickener.  If he takes between 6 and 8 bottles per day, that adds up to between 18 and 24 packets per day. 

The crazy thing about the thickener is that I can list of at least five babies I know who have had to be on it and none of them (other than Joey) have Down syndrome.  Another crazy tidbit is that a lot of insurance companies do not cover it.  Our insurance told me that they “do not cover food supplements”.  My response was that the thickener has no caloric value, so how can it be considered a “food supplement”?  Further, without the thickener Joey can’t eat and is at risk of getting pneumonia from aspirating the liquids.  Our appeal was denied.  Our second level appeal was also denied. 

Given that the thickener became a part of our life when Joey was about 8 weeks old and that there is not an end in sight, I knew there had to be another option other than the individual packets.  That’s when I found the 64 ounce pump dispensers on the Simply Thick website.  The bulk dispensers were a game changer!!!  One pump per two ounces of fluid.  Beautiful!  We order the Bulk Case of six 64 ounce bottles and pump.  The cost is $156.40 and there is no charge for shipping.  Joey usually goes through two cases (ie: 12 bottles) per month.    I know that there are other options for thickeners, but this one has been the best fit for Joey and I am so grateful for that.  Eating is now a peaceful and enjoyable experience for him and we are thrilled about that.   Given that, however, there have been some recent issues with some of Simply Thick’s products including the individual packets.  

Something else to keep in mind if your baby ever has to have his or her bottles thickened—the thickener makes it really, really hard for the child to get the thickened milk/formula out of the bottle.  We went through nipple after nipple after nipple.  It was like the Princess and the Pea.  This nipple was too narrow.  That nipple poured the food out too fast.  We finally found that the Born Free Level 3 nipple worked perfectly for Joey.  This was a part of the process that we weren’t warned about, so if you have to go through this—be prepared to have to try multiple combinations of bottle and nipple types.  *Yes- this paragraph used the word nipple in it seven times and I am both apologetic and amused.
Bottle making at night.  One pump per two ounces.  

Which bottle has thickener in it?


Who needs a shake weight when you can shake thickened bottles all day?

Joey will get a follow up swallow study sometime in the next year or so.   He got a bottle the other night that somehow didn’t have the thickener in it and started to choke, so I imagine we aren’t quite there yet and it will probably be some kind of weaning off process.    For solid foods (back when he used to eat them before his heart surgery—am hoping this has more to do with getting a new tooth rather than his recovery), they just need to be as thick as the liquids he takes.  I also need to give my husband, Tom, most of the bottle making credit.  He is our primary bottle maker and shaker (check out his biceps next time you see him) and he has been an integral part of Joey's success with nutrition and gaining weight.  We had been told that with having Down syndrome and a congenital heart defect that weight gain would be tricky, but we've worked really hard at it and Joey plots right at 50% on the"typical" chart at the doctor's office and he tends to hover on right between 99% and totally off of the "Down syndrome" (yes- we get our own growth chart!) chart.

In the meantime, the aspiration diagnosis as well as using Simply Thick has greatly improved Joey's quality of life (and eating--he is obviously getting his nutrients!) and while it seemed like a lot of work and stress at the time, it is now another part of our "normal".  

Wednesday, June 22, 2011

Progress Report - Two Weeks Post-Op!

Many blogs feature "Wordless Wednesday".  It's usually a day where bloggers take the day off from writing and instead post some pictures that do all the talking.  This is as close as I can get to a "Wordless Wednesday".  When it comes to writing, trying to keep it short is not my talent.  

Channeling his inner Elton John-- Rocket Man style. 

Two weeks ago we were debating whether or not to stand all not at Joey's bedside in the PICU.  There isn't an actual spot to sleep in there and I'm pretty sure it is made intentionally uncomfortable so that parents don't try to sleep standing up.  For the second time that day, we had to tear ourselves away from him and know that for the next 5-6 hours, while we did some power sleeping, that he was under excellent care.  The first time we had to let him go was when we handed our sleeping baby over to anesthesia.  

And now, tonight, only two weeks after his surgery his asleep in his own crib and the steri-strips are slowly starting to curl and fall off.  We're starting to slowly stop worrying as excessively as we had been (is he breathing?  is his chest moving?--those are my nighttime activities and worries).   He is off all of his pain medication (except for some ibuprofen) and is on lasix and aldactone to help manage the fluid in his body.  Right now his major source of discomfort appears to be one of his top teeth that is trying to break through.  

Happy belated Father's Day to an incredible father.

Friday he goes back to our wonderful local cardiologist.  Back to where it all started at about 24 weeks in utero.  I have the utmost and total respect for our cardiologist- Dr. Khan.  He told us then that he believed that Joey had an ASD and that it was probably the kind that would need surgery.  But he didn't just say it like that.  He said that he hoped that he was wrong and when he said it I knew he meant it.  Then when he had to confirm after Joey's birth that he would indeed need open heart surgery he was so gentle and kind to us.  He took his time with us at every single appointment and when things got hairy on a few occasions he was easy to access and gave me his cell phone number.  It's doctors like him and Joey's pediatrician and his staff that are game changers.  They provide not only care, but also comfort and compassion.  

Joey seems to be saying, "Hey- what are you doing?"

Checking out brother Joey's boo-boo.  

I cannot begin to describe what it feels like to be home and to know that this is behind us. Hanging out and enjoying the hot summer sun with our boys.  Catching up with friends and showing off Joey's battle scar.  
Look at these gorgeous blondes!!!  Tommy was napping-- he really missed out!

God is good.

Saturday, June 18, 2011

There Is No Place Like Home

Home sweet home!  We didn't make a single stop once we finally got the car packed up and head back to Akron.  Ann Arbor was great and all, but we were very excited to return to "normalcy" and especially excited to see Tommy.

Signs by LoLo, Tommy, Addie and Eloise

Thomas Henry-- we are back! 

Hershey couldn't stop "kissing" Joey.

A little tired after all the love.

Hi Miss Maureen!
We made it home late in the day on Tuesday and it was such a feeling of relief and happiness to have us all back together under one roof.

Tommy had a great time with LoLo last week, but was definitely ready for us to get back home.  While we were gone he told everyone and anyone that, "Joey has a boo boo."  We showed him Big Joe's battle scar and Tommy said, "That makes me very mad.  I am angry.  Cover it up."  Wow.  So profound and yet it about broke my heart.  It was exactly what a big brother should feel-anger that his little brother had to have a boo boo like that.  

Despite being angered by Joey's big scar, Tommy was back to being Tommy in no time.  Our first night home he had two different kinds of ice cream for dinner and about anything else he asked me for. 

Yep- that's chocolate all over his face.

Wednesday morning I went in to get him up and he said, "Mommy, can I go bye bye with you? Please, please, please."  For the past few days he has pretty much been my shadow and I've eaten up every second of it.  Usually he is a super independent (read: not overly affectionate) child and to have him stroke my arm while we sit on the couch or not want to leave my side was a big comfort this week.

The bubble machine!  4,000 bubbles per minute.

In the meantime, we're all trying to figure out how to get back to "normal"-- whatever that is.  When we first got back I was elated, excited and thrilled to have gotten past the surgery.  By Wednesday, there was a little bit of a letdown and I felt a little overwhelmed.  The piles of laundry that needed washed.  The bags that still need to be unpacked.  Trying to get everything organized.  

On Thursday Joey had his first follow up appointment to get the chest tube stitches out and get his bloodwork done to check his thyroid levels again.  The four of us went because we need to be together as a family and for the first time I had to leave the room during a "procedure".  It was a tiny, tiny room at the doctor's office with me, Tom, Tommy, Joey and the doctor all crowded in. He tried to find the stitch, but in the past week, Joey's skin had grown over it and it was hidden under the large scab from his chest tube.  His doctor started to dig for it and the room started closing in on me and I got really clammy and that weird sour sensation in the back of my cheeks started in.  Tommy and I escaped for a walk across the walkway to the children's hospital.  I've never had to leave before and we've been through a lot of procedures (although we didn't watch him get extubated or the chest tube pulled-- the doctors recommended that we step out for those), but this time I think I may have hit my current capacity.

The doctor's office called on Friday and instead of getting the voicemail that says all the bloodwork was fine, I got the one that said to call the doctor's office.  Ugh.  My mind immediately goes to the big C.  Cancer.  Every--single--time they run his blood count.  Why cancer, you ask? Well, children who have Down syndrome can have up to a 10 to 30 times greater chance of having cancer before they are five-years-old.  I literally had to read the section that explains this in our book, "New Parents Guide to Down Syndrome" about four times.  Do I think Joey will get cancer?  No, but if he does I want to at least be prepared.  I know-- wishful thinking, right?  I want to be prepared for everything and anything that happens to Joey, but I can't.  That small fact does not stop me from trying to be.

I called his doctor back and the blood counts were all good (yay!!!), but his thyroid levels were off again.  His T4 was normal (it was slightly elevated in Michigan before the heart surgery), but his TSH is more than double of what it is supposed to be.  The TSH- thyroid stimulating hormone-- is what tells the Thyroid to make T4.  Also- proper thyroid function is particularly important under age 3 when there is significant brain development.

We're working on our plan of action this weekend.  Treating it is not a big deal-- it basically would require being on thyroid meds the rest of his life.  It's more this in combination with everything else and all the heart meds he is on now.  On top of that, I started reading a blog about a little boy who has Down syndrome and there is an entire list of all the things he can do (he is 11 months old-- Joey is almost 10 months old). This little guy in the other blog can sit up, say ma ma, pick out colored blocks, play peek a boo, self feed-- my gosh-- the list goes on and on.  All I could do is read it and think-- but we can't do any of that, yet.  It's such an overwhelming feeling.  I feel like I have so much work to do-- so much to help Joey with.  I need to slow it down and take it one day at a time-- I know this.  I need to let Joey heal and recover.  I also know this.  That being said, we have a LOT of work to do and it's my new mission in life to help this precious boy start to thrive even more.  In the meantime, he just smiles at me and melts my heart along with anyone else who meets him.  Thankfully I have a husband who knows exactly when to help me slow down and calm down.

Shanna and Miles dropping off a meal (and Dos Equis!!!)

There's a lot on our "to do" list.  The process of getting home (for days I had no idea what the date was or what day of the week it was) and getting organized has been slow, but it has been greatly helped by a "meal train" set up by many, many kind and compassionate friends who have been cheering Joey on all the way.  It's also been greatly helped by the kindness of other friends who organized a clean up day in our yard while we were away last weekend.  Visitors, friends and family have given us so much love and it is truly making this recovery much less stressful than it would be.  We feel so blessed that Joey has touched and inspired so many people to go above and beyond.  We've gotten scar cream in the mail, cards and notes of love and good wishes for Joey, bottles of wine dropped off on the front porch (my personal stress reliever), a new changing table from Tom's mom for the family room so it is easier to change Joey rather than carrying him upstairs.  It's just incredible.  I try to mention every act of kindness and I'm sure I miss some of them.  I hope that people know how much the kindness means.  I go to bed every night feeling so incredibly thankful, grateful and blessed.  We wake up every day feeling the same.  

Let's see his big post-operative smile one more time for good measure....