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 tower....at 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?

Mmmmmm...deliciousness....

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".