The Best Thing Ever

Nolan's weight has skyrocketed. He still looks..skinny, but holy moly - the overnight feeds are working.

In late July, Nolan weighed 31 pounds. He was nearly five years old. We started the overnight feeds 2 and a half weeks ago, and he is now (drum roll please....)

THIRTY SIX AND A HALF POUNDS.

Yes, folks. You read that right. 36.5 pounds.

Did you know that Nolan has dimples in both cheeks? He does. He has been so underweight for so long that they weren't visible. They're coming back. Which is why I was teary-eyed in the surgeon's office, thanking the nurse for going the extra mile and working through the insurance company/home healthcare agency mess.

There have been some unexpected side benefits from the overnight feeds as well. Nolan has always been a zombie boy when we attempt to wake him in the morning. He would sleep until 10am if we allowed him to, and is so floppy and unresponsive that he often won't eat breakfast. We always blamed this on the apnea, but C-Pap never helped with Morning Zombie Boy.

Since we started the overnight feeds, he wakes before us. He is able to walk and talk. He has energy.

The surgeon made a mention of hypoglycemia, which would make sense since he spills ketones when sick and literally flips out if it has been more than an hour or two since he last ate. His blood sugar is kept stable throughout the night with the feeds, so the theory goes, resulting in "normal boy" every morning. Zombie boy has vanished. The theory makes sense, though we haven't tested for hypoglycemia and likely won't, since he's getting the overnights already.

In any case, he is absolutely thriving. It is likely that his weight will level off a bit soon, as his body is in overdrive and making up for lost time. He's had some joint pain and is probably experiencing growing pains.

His heart murmur is a lot more noticeable lately - both the substitute nurse and the regular nurse heard it, and people don't hear it very often. It was quite loud and obvious last Friday. It's something we'll keep an eye on. He had an echocardiogram at the age of three (before he had developed a murmur) and they saw nothing unusual, so it is likely an innocent murmur.

It is nice to have things settle down on the medical front and have Nolan so healthy and growing.

I love it.

Kindergarten: The First Few Weeks

Nolan loves Kindergarten. "Loves" might be an understatement. He is absolutely thrilled to go to school each day. He loves his teacher and he loves his TOD (teacher of the deaf). He's doing really, really well.

He is getting some help from the Occupational Therapist. His fine motor skills are lagging and his hyperflexible joints/hypotonia in his hands does create a few minor issues. It is something we're monitoring and we haven't written the OT into his IEP yet, but that is on the table. Hopefully a few sessions with the OT will help him develop some coping skills for his weak(er) hands.

He knows all of his letters (except for G, which he has apparently forgotten over summer vacation). He knows most of his letter sounds, with the exception of E, L, U, X, and Y. Not too shabby, though I'm a little bummed that he forgot a few of his sounds over the summer. We did work on them, but we also had a lot of other experiences (like fossil digging and swimming) that I feel are equally important to creating a well-rounded child. We'll work on the forgotten letter sounds and he'll have them down pat soon.

His FM system is working wonderfully. He came home today and recited the following poem to me:

"I am mother circle, round like a pie.
I am baby triangle, three sides have I.
I am papa square, my sides are four.
I'm cousin rectangle, shaped like a door."

This thrills me for a lot of reasons. Firstly, he is hearing his teacher very well. Secondly, his auditory memory is excellent to remember the entire poem. His hearing aid batteries died at school last Friday, and his teacher changed them without incident. I love her.

His eating is hit-or-miss at school. He often only eats a couple bites of his sandwich at lunch, a Go-Gurt and a small clementine. Sometimes he manages to eat more of his sandwich. He does eat all of his snack in the afternoon. On the days he doesn't eat well, he'll often come home and eat a large after school snack - which then impacts dinner. We're not too worried about it - if he's hungry, we give him food. If he is bloated or simply "too full," we just let it go. We can always make it up at night.

I can't wait to see him blossom throughout the year. He absolutely loves everything about Kindergarten, and is happy to be participating in gym again. Now that things have quieted down on the medical front, we can relax and enjoy the school year!

Finally Up and Running

The Home Healthcare Company (HHC) dropped off Nolan's supplies on Thursday, but we still had no formula. I'll cut the story short, but several phone calls to Rite Aid (our pharmacy) and our surgeon's office left everyone very frustrated. Rite Aid stated they needed prior authorization, our surgeon's office stated they had sent in the prior authorization to the insurance company, and Rite Aid continued to state they didn't have the prior auth.

Sometime on Friday I was so frustrated I started using my Angry Voice. Eventually, we discovered that the HHC had made two errors. Firstly, they were not to charge $500 per month for the pump and accessories, because we had met our deductible. Secondly, they were supposed to provide the formula, because the prior authorization had been set up between the insurance company and the HHC.

The nurse came on Friday afternoon, and I ran to Walmart to buy some over-the-counter Pediasure. It was $10 for three nights' supply, which isn't terrible. Still, that cost would add up over time, and the OTC Pediasure isn't the same as the formula ordered by our surgeon's office. They had ordered Pediasure 1.5, which is a medical food and has a higher calorie density per ounce. The HHC finally delivered the Pediasure 1.5 yesterday.

We ran the pump for the first time on Friday night. It went well, though the feed ran out early for some reason. The alarm went off at 3:30am and we had a steep learning curve ahead of us. Dennis had taped the connections together, because we were terrified something would come apart in the night. As it turns out, this is a bad idea - primarily because you can't get anything apart at 3:30am, and the frustration is worse when you are exhausted. The type of tape used was bad, too - we couldn't get it off Nolan's skin and struggled with it for quite some time. Once we got it off, I went downstairs to rinse everything out and came back to flush his button.

The second night, we worked out the logistics. We didn't use any tape on the connectors (the "Christmas tree" port from the formula bag fits pretty snugly into his Mic-Key extension). We used a tape with less adhesive to secure the tubing to his tummy, so it would come off more easily. I also primed a large syringe with water, ready to flush his tube once the feed was done.

Nolan woke at 2:00am and had to go to the bathroom. My brain was in an utter fog, so I grabbed the IV pole and followed him to the bathroom. I managed to hit our hall light on the way, and I am pretty sure I wasn't entirely conscious. I put Nolan back to bed and he cried out every 10 minutes because he was scared. I eventually put my blanket and pillow on the floor and dozed next to his bed for the next three hours. I couldn't really sleep, of course, but at least I didn't have to sit bolt upright next to him. He was having nightmares and really wanted some reassurance. I disconnected him at 4:45am and that part of the process went very smoothly.

We finally hit our stride on the third night. Yes, Nolan did wake and have to go to the bathroom. This time, however, I had a few more brain cells firing. I put the pump on "hold" and disconnected the boy instead of hauling the IV pole to the bathroom. He went back to sleep after this and I disconnected him when the formula run was done - it took all of two minutes.

We're getting into a routine with the "Grow Juice," as we call it. Nolan has actually asked to go to bed and get hooked up for the past two nights. He likes the idea of growing and has a lot more energy in the mornings. He used to be a rag doll in the mornings and very zombie-like. We used to blame that on the apnea (which could certainly play a part), but since starting the overnight feeds he has been waking without a problem in the mornings and has come bounding downstairs. The slow drip of nutrition overnight agrees with him.

We have not started his C-Pap therapy alongside his overnight feeds. I will try the combination tomorrow: we wanted him to get used to the "Grow Juice" without having the mask over his little face.

Here's to a growing boy!

Finally - Back to "Normal"

Oh, I love the Mic-Key button. It is so much nicer than the log PEG tube. Nolan wasn't happy (to say the least) about having the tube change done, but I am glad it is done and over with. The tape used to hold the g-tube in place while he was at school left a lot of adhesive residue. He's also allergic to adhesive (even the hypo-allergenic tape causes a reaction), so he has some open sores on his belly. His little tummy should heal up over the next few days and I'll use some baby oil or adhesive remover to get the "gunk" off.

He had some bloating last night and didn't eat dinner, but fortunately ate his breakfast this morning. The nurse comes this afternoon to help us set up his equipment.

Finally! New Button, Pump, and Supplies

Oh, thank goodness. Nolan's new Mic-Key button, pump, and accessories were delivered. Though I have to admit, it is strange to have an IV pole delivered to your doorstep.

It will be a relief to get the new button in place, so that he can ditch the long, old-school style PEG tube.

The nurse is coming tomorrow at 4pm to teach us how to set all of this up.

Now, I just have to call the pharmacy to see where his formula is!

Jumping Through Hoops

The short story: we have a button and pump coming on Thursday. The formula should come into the pharmacy shortly thereafter.

The long story: The Home Healthcare Company (HHC) called me back early yesterday afternoon. They are in our area on Thursdays, they said, and could drop off the pump and his Mic-Key button that day. Our insurance, however, would only pay half the cost, so we would have to pony up $500 per month to pay for his pump rental.

I told them to go ahead and schedule delivery, because we really needed to start the nighttime feeds to see if they help him gain weight. I then called our Amazing Nurse J and told her what the cost was going to be. She was concerned at the cost and told us that we could also do gravity feeds at night: basically, we could set an alarm and get up twice during the night to feed him with a syringe. Considering we couldn't do $500 per month as a long-term solution, I thought that sounded just fine.

Still, something didn't set right. I looked online and found brand new pumps for $1,000. The HHC charges $12,000 per year to rent one. Are you kidding me?

In the meantime, Dennis was on the phone with our insurance company, to determine why they would only pay 50% of the cost. As it turns out, they do only pay 50% of the cost if the tube feeds are supplemental. If they are his sole source of nutrition, they pay all costs. The upshot is that we have met our maximum out-of-pocket for Nolan this year (I haven't finished calculating, but let's just say our expenses this year are in the $10,000 range - and we haven't bought new hearing aids yet).

Since we have met the deductible for him, the pump rental will be free until the end of the year. The formula will only be $50 per month.

This required another call to the HHC to determine why they calculated a $500 per month bill when we had met our deductible. As it turns out, they were billing us without looking at our individual policy. They know that our insurance only pays 50% for durable medical equipment (DME), so they billed us half the monthly cost. After talking to a few high level managers, they corrected the error and we won't get a $500 bill in the mail each month. They also re-trained their employees to look at the individual policy rather than the payment rates, since many people with complex medical needs meet their deductible early in the year.

In January, however, we will get a bill for $500 every month. We will be returning the pump before January 1, 2013.

The sad thing is, the HHC charges $12,000 to rent a pump that only costs $1,000 to buy outright. There are used ones on eBay for $200. We mentioned this to the HHC and they stated that those pumps don't come with a service contract.

You know, Dennis and I both have degrees in biochemistry and have worked with peristaltic pumps for a long time. Pumps that are much more precise and fickle than a feeding pump. You can buy a pharmaceutical grade pump (with service contract) for about $4,000. We're not so worried about the service contract. For $12,000 per year, we could buy 60 pumps on eBay.

I honestly can't figure out why the insurance company (which is willing to pay half the cost every month) hasn't figured this out. They could buy every child who requires feeds a pump (minus exorbitant service contract) for a lot less money than renting one through the HHC. They could even buy each child two pumps and come out ahead, and the family could have one as a back-up if the first one breaks.

Anyhow, if there are other families out there who are hit by this same ridiculous fee (in the USA), go take a look on eBay. It'll save you some serious money.

Button, Button, Where is the Button?

Honestly. How hard can it be to get a mic-key button that your doctor ordered for your child? And formula and a pump when your child is failure to thrive?

Very, very hard.

I called our surgeon's office to see about the status of the Mic-Key button, since Nolan has been stuck with a full g-tube for nearly 2 weeks and is prohibited from gym, has horrible skin ulcers from the tape, and is getting granulation tissue from the pulling/rubbing of the longer tube.

Insurance, of course, put every roadblock in the way. The doctor's office sent over all of the weight data and medical information. It was finally approved, so the home healthcare agency (a new one, since our old one was useless when it came to g-tubes) is in the process of getting everything together.

Of course, insurance will only pay half of the cost of the formula, mic-key button, and pump. Health insurance is really only for healthy people, not for those who actually need medical care (despite having paid premiums forever). Half is better than nothing, but with all of Nolan's issues, the cost of his care is difficult. We're looking at new hearing aids ($4,000) and glasses (relatively cheap - $100) over the next couple of months. Not to mention several visits to specialists with a $40 copay each time.

In any case, I called the HHC this morning and no one answered the phone. I called a little bit later, and someone finally did answer the phone. They sent us to the person in the pharmacy, who handles deliveries. She said she didn't know about our status, so she was going to send us to the person who handles Nolan's case. Except that the person who handles Nolan's case is on vacation until Monday.

And the back-up person is on lunch. She might call me back if she feels like it. She might not.

I'll call back again this afternoon. The nurse said they were planning a delivery on Thursday, but I doubt it since his HHC "person" is out on vacation.

It has been 2 months since Nolan was diagnosed as failure to thrive. Two months and STILL no treatment due to our lovely medical system.

I will call back this afternoon in a dogged determination to get something done for my son. In the meantime, I have ordered a button online. Just like I did with his C-Pap masks. Sometimes you have to take matters into your own hands.

Still Waiting for a Button

I really, really miss Nolan's "button." His Mic-Key button is so much better than the old-fashioned PEG tubes. He is currently sitting out gym at school because we're worried the PEG will get caught on something. The button is so tiny and doesn't require tape or ACE bandages to keep it in place. The PEG, however, does.

I did make a "pocket" out of some 4x4 pads, but the PEG keps falling out of the pocket. It was a good idea at first, but the ACE bandages work better. A mom on the LTBM Australia board* sent me information on how to make a wiggly bag, which is a bag that hangs around the neck and holds the PEG so it doesn't flop all over the place.

Through a few online contacts, I managed to find a mom who has an extra 12 french, 1.2cm Mic-key on her hands. This is the size Nolan needs, so I'm going to pay shipping and she'll send me the extra button (her child is now in a bigger size and no longer requires that particular button).

In the meantime, I get to play Fight the Insurance Company for his formula and replacement button. I did order one online because there was a sale ($114), but the buttons normally cost around $300 - so we do want insurance to cover them.

Nolan loves Kindergarten and ate really well on Friday at school. This is a big relief! His TOD followed him all day and monitored his hearing in different environments. He doesn't hear at all in background noise, and is extremely reserved and quiet at school. Fortunately, there is one child in his class from last year, and he has been paired up with that child to facilitate socialization. He'll warm up in a few weeks, but the noise of a classroom is a bit overwhelming for him at first.

As a side note, the boy has really taken a liking to sweater vests. His fashion sense cracks me up.

*The LTBM Australia Facebook group is excellent for parents with children who have severe laryngomalacia, TOF/TEF, laryngeal clefts, tracheomalacia, bronchomalacia, etc. It's the only group I have found where there are older children with the more severe complications of these conditions.

First Day of School

Kindergarten. I can't believe my baby is in Kindergarten. Class of 2025, here he comes!

Birthday Boy

Nolan's 5th birthday party went off without a hitch. I was so worried about not having organized games and a lot of cute decorations. As it turns out, small boys don't really care for decorations or games. They were far more interested in running around in the yard.

I had punching balloons out for the kids to play with when they arrived. The kids seemed to like that a lot. Most of the balloons popped on the dry grass within an hour or so, but that was fine as they had moved on to other activities by then.

I also had silly string for a game of Spiderman tag. This was a BIG hit for the boys.

I made "superhero swords" out of pool noodles. This turned out to be a wonderful idea, as the boys spent a great deal of time chasing each other while waving their foam swords.

I did throw a couple of games together. Nothing really themed or overly exciting, but at least the kids had fun. The first game involved tying a balloon around each child's ankle. The kids tried to step on each other's balloons - the last child with an inflated balloon was the winner. The boys loved this and immediately went to chase each other and step on their friend's balloons. The winner of the game had matching chromosomes and wisely went off to the side to avoid the melee of boys. She giggled as she collected her prize.

The next game was a water balloon toss. Except I couldn't find the water balloons and Dennis couldn't find any at the store. We used real balloons instead - and it turns out that real balloons will never, ever break.

We changed the rule to state that the winner would be the first pair to BREAK a balloon. We finally managed to accomplish that task!

Nolan was excited to have his cake, and we sang him the birthday song and he blew out his candle.

He opened his gifts and loved all of his presents. He loves pretend play (and superheroes) and he received several toys that really made his day.

Even though I didn't have much time to prepare for his birthday party and didn't have all the really cute activities I saw on Pinterest, it didn't really matter. The kids all had a good time, we had cake, and Nolan had his friends around to celebrate his special day. It was a very Happy Birthday!