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.

I miss these kids

We're getting some smiles!

Doing better...

Kyle is doing much better than earlier in the afternoon. He is doing better with his oxygen and taking his pacifier. He came out of surgery with a really dry mouth (he was intubated for the first part) and didn't want his pacifier. I am so glad he has it now though. It's helped his crying spells be shorter and that helps his oxygen.

He still has all the other cords: IV, blood pressure, heart rate monitor, oxygen monitor. This makes him very difficult to hold, but the snuggles are so worth it. I love his little hand gripping Jeremy's shirt.

They are going to attempt to start a very slow drip (5 mL/hour) of breastmilk and see if he tolerates a little food in his belly.

And they have pediatric coban! What's cuter than a blue camouflage foot?

In the PICU

We are out of surgery and settled in Kyle's room in the PICU.

Dr. Milczuk said that Kyle's repair was difficult because the workspace was small, but he felt good about it when he finished.

We waited a long time before they called us back to see Kyle. When we saw him, he was struggling to keep his oxygen levels up. There was a lot of crying and not enough breathing. He stabilized well enough to leave the recovery room.

Now we are just trying to manage his pain while the anesthesia wears off. The poor kid is disoriented and uncomfortable, but he is doing well.

On the eve of surgery

I never meant for my blog to be dormant for so long.

I have a lot of pictures backlogged that I kept thinking I would get posted. It's not going to happen.

But, I reactivated because I really regret not keeping a more complete journal of our time as a family these last 10.5 months. We have a big step coming up tomorrow: Kyle's repair surgery.

I am nervous. We've been in this holding pattern, and tomorrow starts our journey. All this mess with the g-tube is in between stuff. The real goal is not to learn to manage that well (which I think I have) but to teach Kyle to eat. I pray that tomorrow Kyle's surgeons' hand are steady and sure as they operate.

We expect to be in the hospital with him for 3-5 days. I don't know what to expect with a crawling baby in the hospital. Last time we were there, I could spend 6 hours in the hospital and get maybe 5-10 minutes of eye contact. Now...well, now this kid can hardly hold still. He wants to look and go and see.

I will do my best to update on the blog as we go. I know that a lot of people have offered prayers for Kyle and our family over the last year. We appreciate every single one.

Road trip!

Today was supposed to be Kyle's big debut at church. We would have our entire family at church for the first time since mid-December. But plans changed, and we braved a trip to Olympia to see my grandparents.

We did some maneuvering to get the driving in around Kyle's feeds and the time he has to be held upright, but we made it. In fact, it went astonishingly well.

 We were able to introduce Kyle to my Grandma

 And to my Grandpa...

 

 This is my favorite picture. Of course, it is blurry, but that kiss was too precious to miss.

The other kids got in some good snuggle time too!

The big news around our house is not what has come in, but what has gone out. Our bookcase has a nice empty spot on top of it right now.

This nice little machine used to sit there. This was Kyle's pulse oximeter that we hooked him up to every night to make sure his reflux, of which there was plenty, did not enter his lungs. Or, at least didn't do so enough to impair his oxygen.

When we first brought Kyle home, I relied on this machine to make me feel like I was doing enough to keep my baby safe. I cursed it at times when the alarms would go off because of a bad read. Some nights it felt like I could hardly sleep because of it. I knew that without it, I would also hardly sleep out of worry though. It gave me peace of mind when little else did. As Kyle grew older, his reflux didn't cause his oxygen levels to decrease as much, and, because of the machine, we knew that his oxygen always rebounded as soon as he worked the spit up out. The machine now only beeped at us when it was malfunctioning. Our insurance authorization was about to expire a few weeks back when the probes quit working. It was around midnight, and we didn't have a backup, so we went to sleep without the machine on.  A few days later we called our home health supplier and asked them to pick it up.

It was so nice to be sending medical equipment out the door never to be seen again.

The other item we've removed from our life is this:

Kyle's food no longer has to be fortified to increase the calories. He is on straight mama's milk and doing well. In fact, the little man has tripled his birth weight!

Sunday evening entertainment