Feeding Tube Awareness Week

The last two years, Feeding Tube Awareness week has encompassed the anniversary of the date Kyle had his tube surgically placed. His first tube was a PEG, and we would use a safety pin to secure it to his diaper so it wouldn't pull down on his little tummy. It was an experience learning how to adjust to this tube hanging off his skin all the time.

Shortly after bringing him home, we noticed he had slight discoloration on his chest. We took him into the pediatrician because, even though he was our third kid, this new situation put us back into hyperactive parent mode. Our doctor examined him, checked to make sure it wasn't fungus, and then decided it was probably a superficial bruise from a thumb. His guess was that Kyle still had very fragile skin and accidentally got bruised one of the times we grabbed him quickly during a reflux episode. I felt embarrassed and dressed Kyle to go home. While I was resecuring his tube, I noticed that when I arced his tube to be out of the way, the port laid exactly over the bruise. I felt very silly for taking him in for a bruise

I did not love the PEG. It was very convenient because we could sneak meds into him while he was sleeping without unbuttoning his pajamas, but I didn't like the way it pulled on his belly, especially during baths.

After he had his tube for about 6 weeks, we went back to his surgeon, and he placed Kyle's button in. Now we could take off the 12-inch tube in between feedings and I felt more comfortable bathing him.

The surgeon taught me how to replace the button myself and gave me a spare to take home. I'm glad he showed me because a few weeks later, Kyle's extension tube got caught between my body and Kyle's crib, and the button pulled out of his stomach. It was nerve wracking the first time I put his button in, and I felt horrible that it was my fault. Since then, Kyle has pulled it out multiple times and we've replaced it because parts of the button begin to fail. We were regularly replacing it every 2-3 months until July 2013. His current button has been in for 7.5 months.

 Kyle had a feeding tube to keep him from aspirating his food and getting pneumonia. We were able to keep him healthy all through his first year until he was big enough and strong enough to have his repair surgery. We were even able to get him very chubby. It shocks me to look back through our pictures and see this super round face peering back at me.

Reflux and sickness have swung his weight to the other end of the pendulum, but he is thriving. Kyle loves to be outside, play with Carolyn and Blake, and is catching up developmentally.

Kyle doesn't spend a lot of time around children his own age, and it is easy for me to compare his progress to other babies that I see. I have to remind myself that he spent his first 14 months being held 10 hours a day to keep his food in him. It was a tough year, but it would have been so much worse without his tube.

Kyle's progress

We go see our therapist, Molly, weekly. We've spent hours talking about what we could do to help Kyle get over his plateau while Kyle refuses to try anything at therapy. Although Seattle Children's wasn't able to accept Kyle into their program, they have a therapist who has been so helpful to our therapist. She sent all sorts of support documents to Molly and helped her get everything lined up for us to do our own intensive tube wean at home with the support of our regular medical team.

We geared up for a mid-January wean and got doctors on board and lined up 2 appointments a day in Tualatin, 3 times a week for two weeks, etc. Then Kyle got sick right before Thanksgiving (sinus infection), mid-December (GI bug), and at Christmas (flu). The poor kid's weight was back to 20 pounds and we were struggling to feed him all of the required calories in a day either because of vomiting or he just wouldn't digest his food quick enough to get all his calories. This is a very familiar pattern when Kyle gets sick. It takes a long time for his system to recover. He had lost most of buffer he had for allowed weight loss under the plan.

Molly, Kim (his dietitan), and I all got together to discuss if January was too risky of a time to try the wean. Our big concern was that Kyle would lose weight (that was an expectation because of the plan) and then get sick and not have any reserves left on his body and end up in the hospital. Jeremy and I discussed the risks and benefits a lot and really felt it was best to put it off.

Thank goodness because two days after our planned start, Blake started vomiting, then Carolyn, then Kyle. It would have been disastrous for us to be in the middle of his wean.

We have a new tentative start date of March 31. Then we will be spending a lot of time at therapy appointments and with Kyle in a high chair. It would be lovely for this to get him off his tube feeds completely, but my main goal is for him to connect hunger with oral eating, and for him to feel more comfortable chewing. Kyle has made huge progress in the last few weeks, even without any tube holidays, regarding his comfort level with food. I can actually measure the food he swallows now. It is a small amount, usually about 10 grams a day/ but compared to 0 grams that is a nice uptick. His favorite foods are refried beans, spaghetti, and chicken quinoa chili. He actually drank smoothie twice last week--about a tablespoon. It is nice to feel like his therapy is paying off.

He often doesn't perform for Molly, so I take videos of his eating at home to show Molly what he's working on and the improvements he's made. I think we have more videos of Kyle eating than we do pictures of him doing everything else.

Insurance

I've mentioned some of the tricks we are trying at home to encourage Kyle's oral eating. Did you know there is a not-so-wide network of hospital programs that specialize in intensive food therapy? Some are hunger-based, like what we are fiddling with. Some are reward-based, like our food therapy sessions are. They have very high success rates.  One program even boasted 95% success. That looks pretty darn good.

So, why isn't Kyle in one of these programs? The short answer is insurance. Our therapists say that  they've never seen it be covered by our insurance company. The insurance's idea is that eventually the child will learn to eat, so no need to pay the ultra-expensive cost if in a few years the kid could do it on his own.

This thinking makes no sense to me. Because he has a gtube, insurance covers 100% of his formula. For the first year, we only used it as a supplement, so it wasn't very expensive. In January, we switched him to Alimentum RTF, which is a premixed formula without corn. Try finding a formula that doesn't have corn syrup in it. Seriously. It's hard. It was what helped us start having barf-free days. Our home health company delivered a month's supply with all of our other feeding supplies. They charged our insurance over $1,000 for the formula alone. You would think a company would want to invest more money upfront for these programs that have fabulous success rates and stop being on the hook for a giant wad of cash every month. Maybe they don't feel the pinch though because I started blending real food for Kyle and he hasn't had formula since June.

Jeremy and I have mulled over the idea of switching to an insurance that would cover a major portion of a program like these because it is cost-prohibitive to try to pay out of pocket. The hospitals willing to quote me a price gave me figures over $15,000. I decided that Seattle Children's was where I wanted Kyle to go. It is hunger-based, 2 weeks (some are 3 or more), and close to friends and family so I wouldn't be without a support system. We started calling to find out what it would take to get him into their program.  My grand plans were crushed because they are set up as a regional children's hospital to serve Alaska, Washington, Idaho, and Montana and won't accept children from outside that region. Nevermind that I am 20 miles over the border and live much closer than anyone in those other 3 states. Or, that yes, I have two children's hospitals within 20 miles, but neither one offers a program like this. The next closest one is in the Bay Area.

I tried to ask how long I would have to move back in with my parents in Alaska for him to qualify as being from Alaska. The therapist I talked to was interested in Kyle's case and said she would present it to the board of the program, but hasn't gotten back to us. Normally, we could wait, but Jeremy's open enrollment ended Friday. So, we are still with Kaiser. It was too great a risk to switch insurance without knowing they would accept Kyle. A switch would've meant getting an entirely new medical team, which I was okay with if there was this amazing program as a benefit, but it wasn't worth a calculated risk.

Instead, we hope to try these tube holidays and as he progresses and consumes more (hopefully), increase their frequency until we convince him that eating is delicious! And doesn't always have to include retching with it.


PS: We have fabulous insurance. It has kept us financially solvent over the last few years, and I will say this has been my first complaint.

Tube Holiday

Two weeks ago we experimented with a tube holiday for Kyle. Working with his medical team, we decided to encourage hunger by skipping his regular meals pushed through his tube. We drastically increased his time in the high chair and offered numerous options of food for him to try orally to see if we could get him to connect hunger with eating.

Sunday, November 3, we started off pretty well. He licked some drops of milk off a straw, had a sip of apple juice, put 3 cheerios in his mouth and mashed them before spitting them out and licked a tiny bit of hummus. He likes to suck off all the powdered cheese from Cheetos, so he did that too.

We took him to church and worked with him in his nursery class during snack time. Kyle's interest in food was way up. He was licking all the crackers offered and even got half a graham stick to dissolve in his mouth--here's the big step--and swallowed it! He rarely swallows anything besides water and never something that was solid.

Our next big success was at dinner. He loves the brothy part of taco soup. We made it for dinner and I blended it up to offer him. He was amazing. He fed himself some bites and when he got tired of that he actually let me feed him bites! This was the most he has ever eaten in one day. It is still a very small amount, but the progress we saw was wonderful and enough to bring tears to our family's eyes.

Even though we weren't giving him his regular meals, we did want him to stay hydrated. So we pushed about 20 fluid ounces of a pedialyte-water mix through his tube at meal times.

The next day didn't go well. He was too tired from not having any food to even try to eat. We canceled the rest of the tube holiday and started giving him small meals to perk him back up. By Tuesday, he was his regular self again.

When I showed the video to his food therapist, she was thrilled as well. We are trying it again for 48 hours starting tomorrow. But, this time, we are going to give him about 25% of his calories along with fluids and see if that will help him make it through a second day.

7 months is a long time not to blog...

We are going to jump right back in with some good news. The last 7 months have been challenging. There's really no other way to put it. We've been blessed immensely and have been able to juggle everything, but it's been hard. Kyle is not progressing with his oral eating. We thought we were making some progess because I could get him to eat about 40 calories a day. Then, under the direction of his doctors, we messed around with some medications. That sent all of our progress, including 3 glorious, barf-free months, out the window. We've spent the past six weeks trying to get his system calmed down.

During this time, I noticed some staining on Kyle's teeth and became concerned. I made an appointment with a pediatric dentist. After I gave his medical history and explained about his intense oral aversion, she did a quick check in his mouth and decided she should refer us up to the OHSU dental school for treatment. She was concerned about enamel erosion and that Kyle might need caps on his teeth to protect them from his vomit. Today, we drove to his appointment (I would be happy if we never had to go up to the OHSU campus again!), and had my best doctor's appointment in months!

Yes, he has staining. Much more than a typical child his age. But, they prodded in his mouth and declared no cavities and no erosion--which means no general anesthesia to undergo dental treatments. Oh happy day!

As far as his feeding goes, we are increasing his therapy from monthly visits to weekly. I love his therapist and am willing to make the long drive to work with her. Not that there are any closer food therapists, but we could always go up to the OHSU feeding clinic. Have I mentioned I would be happy never to go back? Although, their feeding specialist is pretty awesome too. We really hope that increasing therapy will help us see some improvement. Kyle seems to be afraid to swallow. When he gets food in his mouth, he starts gagging to try to remove it. Hopefully, as we are better able to communicate with him, we will be able to ease his fears.

 This picture is from one of the first times he put something in his own mouth. It was so momentous that Jeremy and I both had to take pictures of it.

Our Easter miracle

In short, the last few months have been very trying in regards to feeding Kyle.

Jeremy and I have offered many prayers asking for guidance.

We had our very own Easter miracle today. Kyle drank water from his sippy cup! He leaned in for more sips  and even put it in his own mouth once or twice. I cried tears of joy.

Home again...

We went back to Doernbecher today for Kyle to have an endoscopy of his upper GI system. This all came about because his reflux, maybe we've moved beyond that term to vomiting, was happening 20 times a day. No joke.

His pediatrician ordered lab tests for allergies and iron deficiency. We know there are white blood cells in his GI tract, which typically signals allergies. We are waiting for a blood test that will tell us to what he might be reacting. We tried a hypoallergenic formula with no success. We have him back on my milk from the elimination diet days.

The procedure today was to rule out other conditions like eosinophilic esophagitis. All of his parts looked good. They took some biopsies of his esophagus and stomach. We'll hear back on those in about a week. There was no indication that the results would give us any help with finding out what is causing all of his troubles.

We wore him out by going to visit a new baby at the other hospital on the way home. He has his bear in one hand and cookie monster in the other.

Happy birthday, Kyle!

There are so many events to track time from: December 15 (bed rest starts), January 21 (Kyle's birthday), February 23 (Kyle came home from the NICU), and March 3 (Kyle's due date).

Then:

 

 

Now:

 

Today, my baby turns one!

Kyle's favorites:

Food: none. He refuses everything.
Toy: singing helicopter. He has it in his little hand in the picture.
TV: anything. This kid could be asleep and he sits up and cranes his neck if a show comes on.

He is learning to cruise with a little walker. He pulls himself up to standing. We can't keep him out of the dishwasher or fireplace. His speech has grown by leaps and bounds since his surgery. Prior to his surgery, his home nurse was discussing Early Intervention as he fell further and further behind in speech. Since he's healed, he's gone from barely forming single syllables (ma, ba) to babbling non-stop. He can even say "Kyle." He has no idea what that means, but it's just about the cutest thing you've ever heard.

No matter what date we track time from, it's been a crazy year for our family. And though Jeremy and I are always exhausted, in the evenings, when our house is finally quiet and Kyle is asleep in my arms, everything just feels right. We love you, little man!

Speed bumps

Kyle has started food therapy. We've been to one appointment and have another one scheduled for this week. But we have had constant phone calls with his therapists.

The transition started very smoothly. Kyle was very interested and we went with it. Then two days he woke up with the same cold his siblings got over Christmas. He completely lost interest. Then his reflux started flaring pretty bad, so he was actively against the idea of anything going in his mouth. When teaching a kid who hasn't been allowed to eat, the prevailing wisdom is to let them take the lead. A refusal of food means you stop and wait until next time. There is no cajoling or trying to sneak a little more in because we want Kyle to learn that eating is pleasurable. So, we've been at a standstill.

Also, the elimination diet made it extraordinarily hard to find foods to offer Kyle. We weren't offering him anything on a spoon from us because we were forcing a medication down his mouth 4 times a day that had to be given orally. We didn't want him to associate the medicine with eating. I went on a hunt at Whole Foods for things Kyle could hold that fit in his diet limitations. I found exactly one item and hoped he liked rice mum mums.

Then we had another switch because after six weeks the elimination diet hadn't helped his reflux. There were times when I thought he was on the upswing only to slide right back in to his regular barfing pattern. We tried to eliminate even more from my diet, but after ten days with zero improvement, I stopped. I discussed it with Kyle's therapists and dietitian. We decided that with no results, I would resume eating a regular diet. It's been 5 days of that, and, again, there's been no change in his reflux. We are still going to go very slow with Kyle's food introduction and see where that leads us.

One therapist recommended more visits to a GI doctor for additional testing to rule out some conditions. We will be following up with that in the next couple of weeks. It would be nice to have some answers. Our pediatrician said last week that Kyle's case of reflux is the worse he's ever seen. I know it isn't the worst ever, but it was nice to have some acknowledgement that Kyle's reflux isn't normal.

Serious upgrade

Yesterday our doctor surprised us and said if Kyle's repair looked good today, we could do a swallow study after Kyle came out of the anesthesia.

They quickly made us an appointment in Radiology as soon as Dr. Milczuk said that everything was now as it should be.

Here's Kyle in his fancy positioning chair. He happily played the drums on the wall until...

it was time to do the test. We were all in our lead aprons and he was really sad. I had performance anxiety for him. I asked our doctor how a baby like Kyle does getting food put in his mouth after eleven months of not having anything orally. Would Kyle even know what to do with it? He said that was the million dollar question.

The speech pathologist took apple juice and yogurt and mixed them with barium. We got the concoction in Kyle's mouth and tried to time the x-ray with his swallow. They did a thin liquid test (like juice or breastmilk), then purees, and one more try on the thin liquids. He didn't like the test, but he passed them all with flying colors.

This is a big freaking deal. A normal swallow study after a laryngeal cleft repair is very rare. We were not expecting these results.

This was my stunned face as the speech pathologist was telling us Kyle's results and what that meant for his eating plan.

  The speech pathologist gave us a lot of information, loaded us up with some supplies and told us to feed our baby.

So, when we got home, we busted out this...

 

but that ended like this.

 

We switched to a sippy cup, and he did much better. He would smack his lips and try to lap up the drops that came out of his mouth.

We tried again before his last feed for the day. Kyle is really interested in milk. He gets excited for it and opens his mouth for his cup. He took about 10 mLs this time. Right now, we are focusing on getting him to enjoy drinking milk, and later, we will slowly work on increasing his volume.

Waiting for Kyle...

We are back at Doernbecher, waiting to find out if Kyle's laryngeal cleft repair held. Because his wound is in his airway, he is sedated, back in the operating room. I don't know if Kyle remembers being here 3 weeks ago, but he was unhappy as soon as we went to the pre-op room...

Kyle's surgeon just came out and said that his repair looks great! He is waking up from anesthesia and they will attempt a swallow study today. That is where they try to feed him food or liquids with barium (tasty!) and x-ray him while he swallows to see how his swallowing mechanism works. We didn't expect to do this until end of January, but we are thrilled Kyle is moving along on his journey!

Here's a picture of Kyle on Christmas Eve wrestling his new crocodile cuddleuppet (courtesy of his sweet cousin). He loves it!

Home again, home again, jiggety jig

We've been back home for about a week. The fear that followed me when we first came home has dissipated. Kyle's breathing is back to normal and he no longer has any stridorous episodes.

Here two pre-op pictures of Kyle in his styling hospital gown. 

 

I love this picture. The first almost 24 hours after surgery, Kyle was very disoriented and confused. We held, rocked, and sang to him, but he didn't seem to find comfort in our presence. I'm pretty sure the anesthesia was still doing its dirty work. The next morning, he woke and had his sparkling personality back. 

  

 We've seen improvement of his vocal cord function as he heals, but the reflux is still voluminous. Every medical person I've talked to has said he will naturally grow out of it, but we're past the point where I find it acceptable. I finally contacted a friend who does food intolerance testing and asked if she thought Kyle could benefit. His reactive list is extensive, and now I am on a strict elimination diet to see if we can get his system to calm down. For now, I'm off gluten, corn, quinoa, oats, turkey, pork, broccoli, asparagus, white potatoes, grapes, apples, garbanzo beans, etc. As you can see, this means no more Oreos. So, my oreo/joe-joe habit is now broken. I have high hopes for this because I don't want the medical field's alternative: a surgery to wrap the top of his stomach around the bottom of his esophagus to make it physically impossible to vomit. We aren't too that point yet, but the surgery keeps getting mentioned. I'd rather avoid an extra trip to the OR. 

We're in another brief holding pattern while his airway heals. December 28 we go back to the OR, so his surgeon can sedate him and get a good look at his repair. At that point, we should know if the repair worked. If it did, we will schedule a swallow study around the end of January to find his baseline function and put together an "introduction to foods" plan.

December 15

I've spent the last week reflecting on where our family was one year ago. I see myself chowing on a box of Candy Cane Joe-Joe's. I remember trying to figure out how to make a silhouette in photoshop for teacher gifts. I hear myself promising Blake over and over again that I would get his birthday cake made. I spent my evening at a meeting trying to map out the next month for the kids at church. I came home way too late and crashed into bed. The next thing I knew I started the wildest ride that I've ever been on.

This year, I woke up and got to go downstairs in my own house and hug the sweetest birthday boy. I saw his glee as he opened his birthday presents, and I heard him tell me I was the best mom ever when he saw the birthday cake I made him. It didn't happen last year, but there was nothing that would stop me from making his Special Agent Oso cake.

His cousins joined us at Chuck E. Cheese and he got his Bucky toy that he's asked for over the last two months.

I am so grateful that I could be there this year. Blake is fun. He is sweet, and he is learning so much every day. At 4, his favorite food is french toast with buttermilk syrup. He loves Carolyn so much, and he is constantly singing, "Stop! Collaborate and listen! Kyle's back with a whole new edition!" It's awesome.

Happy birthday, Blake!

Getting close

Kyle's back in big boy clothes. He's eating full feeding amounts. He wants to cheese for the camera. This all adds up to a hospital discharge!

We are waiting on paperwork, etc., but his surgeon has cleared him to go home.

End of day 2

I guess it isn't really the end of the day, but it feels like it should be. Jeremy and I decided that we should alternate who stays with Kyle. Last night I got to stay. Kyle had two more episodes where he got really mad and his oxygen levels dropped. They turned on the oxygen and tried to calm him. The first time they suctioned secretions out of his throat; and, the second time he stayed mad until he got some morphine. Since 5 am, he's been on room air. There's been a time or two where his levels dropped, but he was able to recover on his own.

We didn't start any milk yesterday. Because he was still having problems, we wanted to hold off as long as possible. He had IV fluids and was content without milk. Around noon today, we gave him 2.5 ounces of milk over two hours (opposed to his usual 5 ounces over an hour). He did really well with that and was given permission to leave the PICU.

We are still here though. They don't have any beds on the other unit, so we are just chilling. Dr. Milczuk says once we get him up to full feeds, he will discharge Kyle. I would love to have him home, but , man, it makes me nervous. His little voice has changed and the tenor of his breathing is different post-op. This is all to be expected because they modified his anatomy, but it makes him feel a little bit foreign to me. It is just another transition phase, and we will get the hang of it soon enough.

Right now Jeremy and I get to spend more time together than we have in a long time. I like it.