Doing Better!

New prescription sunglasses!

Nolan is almost completely recovered from his supraglottoplasty. He isn't on pain medication anymore, and we have stopped his steroids. I have to say, I am glad to be down to two medications again!

He is still choking on thin liquids, but that problem should resolve with time. He is able to eat most foods again, and we experienced one of the "good" side effects of steroids - they make people hungry. While Nolan still can't tolerate large volumes of food, he was eating constantly when on the steroid. I was very excited and thought that perhaps we could keep him on steroids to maintain the hunger - and then found out that steroids cause things like diabetes and liver issues and can't be continued at high doses for a long period of time. Still, it was great to see him hungry for the first time in...forever.

The little guy has been outside to play a bit, but does tire out easily. He rode his Green Machine for a few minutes yesterday, but couldn't pedal it on our driveway and started to scoot it around with his feet before heading inside for a rest. We also went to Matthew's first baseball practice last night, and Nolan did play on the playground for a few minutes.

It was nice to see an actual smile! He was completely wiped out by the time we got home, so he didn't eat dinner and had some serious bloating issues. He had trouble tolerating his feed last night, but seems fine again this morning. Even though he seems largely recovered, he doesn't quite have the stamina to do his normal activities.

Still, he will be ready to go back to school on Monday. We are all looking forward to the return of routine!

Sweat Test

Since Nolan has both digestive problems and respiratory issues (along with chronic sinus and ear infections), a sweat test was ordered to determine if he has cystic fibrosis. We went up to Buffalo Children's on Tuesday and checked into the lung center.

The technician cleaned his arms and placed the electrodes on his right arm. She added the Pilocarpine and turned on the electricity - the electricity generator looked like a giant car battery.

Nolan was very brave and sat still for the test. The technician said it feels like the pins and needles when your leg falls asleep - a very strong tingling sensation.

Nolan did say, "It hurts, Mommy," a few times, but he sat still for the test.

After five minutes of stimulation on his right arm, the area was wrapped and the same process was repeated for the left arm.

Once both arms were finished and wrapped, we went off to wait for about 30 minutes. Nolan's sweat was collecting into the filter paper as we waited in the small waiting room in the CF center.

After the thirty minutes had passed for each arm, the gauze was unwrapped and the filter papers were taken by the technician to be weighed and analyzed for the concentration of chloride in his sweat. We left and went to Chuck E. Cheese as a reward for being so very brave.

I called the pediatrician's office today to find out what the results to the test were. Sweat chlorides over 60 mmol/L are positive for cystic fibrosis, chloride levels between 40 - 60 mmol/L are equivocal (might have CF), and levels below 40 mmol/L are considered negative.

Nolan's sweat chloride level was 9 mmol/L - very NEGATIVE for cystic fibrosis.

I am glad we have ruled it out, as our treatment strategy would change if he had CF.

I am extremely relieved that his lungs are healthy and we won't ever need to worry about this again.

Expecting a White Christmas

It has been a very dismal fall, with no snowfall to speak of and an absolute lack of sunlight. A blizzard was moving across the Midwest, and I was very happy to inform Matthew that his seventh birthday should dawn with an abundance of snow.

When we woke, over a foot of snow had fallen. The kids spent all day Saturday doing this:

Nolan's stomach has decided to give us trouble again. He's coughing and "choking" a lot, which is typically a sign of reflux. He quit eating yesterday, and only had a few grapes and a piece of string cheese throughout the entire day. Today, he ate 2 doughnut holes in the morning and five hours later, he was still bloated.

He's back down to about 36 pounds on the scale, but the overnight feeds are keeping him from getting any lower. Hopefully his tummy will decide to start working again soon, because this really isn't much fun. He isn't sick in any way, just can't eat and very bloated. He also has white diarrhea again, which no doctor seems to care about.

Despite the tummy trouble, we're all resting, playing, and enjoying a quiet weekend before Christmas arrives!

Broken Mic-Key Buttons

I called Kimberly Clark about Nolan's (two!!) broken Mic-Key buttons. Their customer service was wonderful, and they sent me replacements via FedEx by the next day. They also sent a box so I can send in the two broken buttons for testing.

For those unfamiliar with g-tube buttons, the stem is inserted into the stomach and a small balloon is inflated with 5 ml of distilled water or saline solution. The balloon keeps the button from falling out of the stomach, and usually lasts about three months. These buttons had the balloon burst wide open, which causes the button to fall out.

Both of these buttons are from the same lot, and the button placed in September broke on the same day we inserted it - it lasted about 6 hours in Nolan's belly. We replaced it with another button (also of the same lot), and that one lasted from September to December - the typical "three months" one would expect from a Mic-Key button. It became clogged and the balloon had a slow leak, so we replaced it in early December.

A week later, Matt comes running and yelling that Nolan's button was gone. This isn't a good situation, because the stoma (hole in his belly) can begin to close and then we have to drive three hours to Rochester for surgery to dilate the hole again. Our local hospital can't help him, and this is when I don't like living in a rural area. After having a mini panic attack, I managed to get him onto the floor and put another button in - it was a very tight fit and caused some pain, but it went in.

Matt found the other button on the living room floor - judging by the amount of stomach acid leaking out of the stoma, the button had fallen out a while before anyone noticed. Nolan had no idea it had come out of his tummy, which is scary because we can't rely on him to report "button problems." Ugh.

In any case, a new button is now in (though it is the same lot as the "broken" buttons). We have back-ups from a different lot, graciously supplied by KC's customer service.

Hopefully we won't have another bursting balloon!

Still Here!

We are still here, despite the lack of blogging activity lately. This time of year is always insanely busy, and our activities in real life have precluded my ability to keep up with this blog.

I have also reached the maximum photo limit for this blog. I'll have to start a new one if I want to upload any additional pictures. Nolan looks exceptionally cute lately - you'll just have to trust my written word on it! *Update - I broke down and paid for the extra storage. See? He's really cute.

As for updates, Nolan's eyes are doing really well. His amblyopia continues to improve and we are happy to have a six month reprieve from the pediatric ophthalmologist's office. I do need to get his new prescription filled, so we will do that next week.

We also had his follow-up appointment via the ENT. Things are going well with regard to his ears. He's been infection-free for a month, which is fantastic. We will have to discuss the possibility of another airway surgery in the spring - we have another appointment in February to make the decision. In the meantime, he's going to have another sleep study/C-Pap titration in January. Since Matt often snores, we're having a sleep study done for him at the same time. Killing two birds with one stone.

We are also going to get aided testing via a different audiologist, since our current audiologist simply refuses to do aided testing with hearing aids. It's beyond ridiculous, so hopefully this new audiology group will perform that testing on a regular basis. They can't do cochlear implants, so if we decide to go that route, we will need to find someone else. Our area isn't the best for medical or audiology care.

His stomach issues are still frustrating - he's doing really well with the overnight feeds, but we aren't seeing any progress with his daytime eating. We'll take it as it comes - as long as the overnight feeds are enough to maintain growth, we're golden. Our ENT did mention a gastric pacemaker as an option if his stomach function ever declined in the future.

We've been having a lot of issues with our insurance company and getting replacement Mic-Key buttons. Our insurance company only allows a new button to be issued every 91 days. Unfortunately, not every Mic-Key lasts a full 90 days. Nolan had a balloon burst on one in September. We replaced it and he had a good one from September - December, when we had to replace it due to clogging and sheer age (the balloon developed a slow leak). Our insurance company told us we couldn't get a new back-up until January. Fortunately the Home Healthcare Company sent one in our monthly shipment (there was a lot of anxious whining on my part to get them to send one). We're three hours from URMC and we don't really have a lot of options if it falls out and we don't have a back-up. Our insurance company will get to pay for surgery instead of a button if it happens.

I am REALLY glad the HHC sent us a backup button, because Matthew started screaming, "Nolan's button is GONE and his tummy is bloody!" Yep. Another Mic-Key failure. The balloon burst on this one, too. The same lot number as the one that burst in September. I am so frustrated. I was very glad to have the backup, and we managed to get it into his stoma (with a bit of a struggle - the stoma starts to close up very quickly).

I'm starting to wish we had gone with a Bard button. It has to be changed in the OR, but at least it lasts a year or so!

I have to start thinking about getting a new blog - if I do, I'll link to it from a new post. Pictures are sometimes necessary!

Time Flies

I can't believe how fast time flies in October. There are so many fun things to do, and the weather is usually pretty decent. I feel like we blink and then November arrives with all its gray glory.

Nolan is doing extremely well. We have the nighttime feeds down to a science, though we have still had a few rough nights with Nolan waking frequently. He slept through the night last night (with the exception of falling out of bed once), which was a relief. His dimples are definitely making a return - you can see one in the picture above. I love it.

He hasn't been eating very well at all. He's been sick - just a cold - but with Nolan, a cold means that he can't hear and that he won't eat. At all. It makes for a grumpy boy. He went to school with no breakfast again this morning, and he's only been eating his orange and go-gurt at lunch. He ate nothing for dinner last night. I wish the cold would hurry up and go away, though colds linger with Nolan... it could be a month or more until this one disappears.

He has a hearing test on Monday, so hopefully the congestion will clear out before the test. He has tubes in his ears, so that helps immensely. I don't want any questions as to the reason behind any mysterious drops in hearing ability. Nolan has complained that his right ear isn't working, which is concerning. This is the ear that recently took a 20dB dive in the high frequencies, so we'll see what's happening there.

We have an October packed with activities:

October 5th: Enchanted Forest at the Audubon.
October 6th: Big birthday party celebration with a friend.
October 7th: Port Farms/pumpkin patch visit.
October 8th: Hearing test.
October 15th: ENT appointment.
October 25th: Travel to Washington, D.C.
October 28th: Dennis runs the Marine Corps Marathon.
October 29th: Drive home from D.C.
October 31st: Halloween parties at school and trick-or-treating.

The kids are extremely excited about all of the festivities and the upcoming travel. They are going to love riding the metro in D.C. and seeing the Smithsonians. Matt is particularly excited about the Air and Space Museum. Nolan just wants to ride the "underground train."

Here's to a fun October!

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.

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.

Absolutely Exhausted - Good News and a Fixed Tubie

We woke at 4:30am to start the drive up to Rochester for Nolan's upper GI. It is slightly over three hours to get to the hospital. We were checked in and in the waiting room by 8:30am.

Nolan wasn't feeling all that well and wouldn't walk. I was a bit concerned about the Foley at this point, and was very glad we had an appointment immediately after the upper GI.

Strong Memorial is a much better hospital than Buffalo Children's. The difference is astounding. At WCHOB, parents are separated from their children for all x-rays. At Strong, I was able to don a lead vest and stay with my child during the procedure. Instead of a crowded waiting room with broken toys and waiting for a ridiculously long period of time, we were in a quiet pediatric waiting area and were seen within minutes. They let him keep his hearing aids on for the test, since they were only x-raying his belly. I don't think I'll ever have another test run at WCHOB again. It's worth the extra 90 minute drive.

Nolan drank the barium and we got many images. The radiologist then told me the results, right in the x-ray room.

BIG SIGH OF RELIEF.

His fundoplication is intact. The vomiting is likely due to his delayed gastric emptying/gastroparesis. When his stomach decides to shut down and gets too full, then he will reflux past the fundoplication. This isn't due to a failure of the operation, however - this is just something that might happen periodically.

We also saw that the Foley catheter had migrated into his small intestine. He was in pain and we needed to get the Foley replaced with a g-tube quickly. We headed up to the sixth floor where the most wonderful nurse in the entire world (I'm not kidding) set aside plenty of time to help our family.

Nurse J knows that our current Home Healthcare Company (HHC) sucks. They don't do g-tubes (we were set up with them for C-Pap supplies initially). She looked up a good HHC in our area and is setting us up with the new company. She is also going to get us a pump and formula to start overnight feeds.

She also said we can ditch the dietitian, who was frankly the opposite of helpful.

We talked about bolus feeding (giving the Pediasure via tube in three doses), but since Nolan bloats with that amount of volume, I really would prefer to try overnight feeds. We would really like to keep him eating "regular" food, even if it only constitutes 1/2-2/3 of his diet.

I showed the nurse pictures of his bloating. She asked if he had had a gastric emptying scan (GES) recently, and I said that he had one at the age of 2, but hadn't had one since. We know there is some dysmotility going on - his esophageal bolus transit time is slow and the test in 2009 showed delayed emptying, plus he has the bloating and frequent bouts of uncontrollable diarrhea. The fantastic, amazing, wonderful nurse J suggested we might think about doing another GES. I am so glad someone is thinking about why his tummy is bloating/he won't eat instead of just trying to patch the problem.

If his emptying is normal, then maybe we can push the feeds a little more and help his tummy expand to accommodate the extra food. If his emptying is abnormal, there are other things we can do.

She changed out his Foley to a Mic g-tube. This was rather traumatic for Nolan, so we were glad to be past it and on our way out the door. Nolan was really unhappy for a while, poor kiddo. He was still upset over having to go through another tube change, and was also upset he didn't get a "button." We taped the tube to his skin really well, and that seemed to help him (he doesn't like the sensation of the long tube rubbing against his shirt or skin).

The g-tube is a standard PEG tube - the grandfather of the modern buttons. These are much cheaper than the button style (the hospital pays about $12 for them - we'd pay about $35 if we bought one on-line). The buttons are over $150 to buy online (and our former HHC was trying to charge us over $300 for the same item). Our insurance will cover the buttons now that we are feeding with them, so we should get a button in the mail soon.

We went to Panera Bread for lunch and Nolan was feeling much better.

We managed to really get the tube secured with tape. The life-saving Nurse J gave us an entire roll of tape before we left (really, I might send her flowers).

We ate lunch and then headed home. We made it home by 3:30pm, which is good because we have a birthday party tomorrow.

My house isn't clean. I don't have much planned or organized. Such is the life in a week of crazy - but hopefully our friends love us and won't care that we aren't having a "fancy" birthday party. Sometimes, it is enough to get together and simply enjoy each other's company on a happy day.

Emergency Foley When a G-Tube Falls Out

Oh my, it has been a week. Dennis and I managed to change out the ruined Mic-Key button with the emergency Foley catheter we had on hand. We learned a few things during the process.

1. People will give you weird looks if you go to a store and buy ace bandages and KY Jelly.
2. The resident on-call will tell you to change the Foley catheter, but omit vital steps that should be contemplated BEFORE the said change takes place.

The Mic-Key button was easy to remove - I tried to pull water out of the balloon and the syringe only returned gastric fluid. We pulled out the Mic-Key and saw why - it wasn't a slow leak, but the entire balloon had ruptured.

The balloon is on the end of the stem above, and you can see how it is split wide open. I think there was an intrinsic weakness to the balloon since I only added the recommended 5ml and it obviously had a catastrophic failure.

Anyhow, here are the important things the resident failed to mention:

1. The Foley has no clamp. Once you insert it, the tube is open and gastric contents are able to flow out. BEFORE you insert the Foley, cut a clamp off one of your extension sets and slide it onto the Foley. We didn't do this ahead of time, but managed to crimp the line with one of our extension-set clamps anyway - it isn't as secure as if it were on the catheter, but it will do for a short period of time.
2. Tape the Foley catheter up the belly. This allows gravity to help keep stomach contents where they belong.
3. Tape the Foley catheter well, so that it can't slide back into the belly. If it isn't taped well, it can slide back into the belly and the balloon can block the pylorus. If this happens, the child may start vomiting.

I found these problems (numbers 1 and 2) as we were doing the change. Fortunately, Dennis was able to take care of Nolan while I ran to the world's best medical advisers: other parents of complex kids. Within seconds, these amazing Parents of the Internet told me how to clamp the Foley and to make sure it was taped up. 

The third bit of critical information came from the nurse this morning. I called the clinic this morning and the nurse called back. We're set for an upper GI study at 8:45am in Rochester on Friday, so we'll go ahead with that study, then head up to the clinic where the nurse can change out the Foley catheter for a Mic-Key button.

In the meantime, we have a Kindergarten and First Grade open house to attend. Nolan is happy and feeling just fine, despite being taped and ace-bandaged to the hilt. His birthday party is on Saturday. On Sunday, we may collapse from exhaustion. 

I am mightily relieved that by this time tomorrow we should have a boy with a nice, secure Mic-key button in place and knowledge that his fundoplication is (hopefully) intact!

Because We Really Needed More Drama

Nolan's mic-key g-tube was three months old, and the balloon that holds it in place sprung a leak. Since the tube was falling out, I replaced it this morning with a new one.

I called the Home Healthcare Company (HHC) that takes care of Nolan's respiratory equipment (and has the prescription for the g-tube replacements) to order another new mic-key to have on hand as back-up. The HHC stated they are no longer doing mic-key buttons and referred us down to Hamot medical in Erie, Pennsylvania. I called Hamot, and they stated they are not taking new referrals, but to have the prescription sent to them and they would send it to Pittsburgh.

I called the surgeon's nurse (who must be rather sick of hearing from me) and told her the situation. She said she'd send in the prescription. She also asked if we had heard from radiology (we hadn't). She said she'd follow up on that again (they still haven't called).

In any case, I went to Nolan's kindergarten parent meeting tonight. Since Matt was in kindergarten last year, none of the information was new - but it was good to see his new teacher.

I got home and Dennis jetted off to hockey. I put Nolan in his pajamas and noticed that his new tube was hanging half-way out of his belly. Not good. I checked the fluid level and pulled out stomach fluid. The balloon has burst. Since I didn't have another back-up on hand, this was not a good situation.

I taped it in place and called the surgeon's emergency line. The resident eventually called back and instructed me to remove the mic-key button, put the emergency foley in, and tape everything in place. I'm to call the clinic tomorrow and try to get him in for a button change in Rochester.

I have a feeling I'll be making a three hour drive tomorrow - unless it can wait until Friday (which was when we were supposed to have his upper GI done anyway, if radiology can manage to call and schedule it).

Dennis is now at the store buying some KY jelly (lubricant to get the foley in) and an ace bandage to hold everything in place.

My blood pressure is through the roof.

In Which I Nearly Lose My Mind

With the bloating from the Mighty Milk causing Nolan pain, bloating, and diarrhea, I called the dietitian's office and left a message. I also sent a picture of his bloated belly to our surgeon, as this plan simply didn't seem to be working.

Besides the bloating, Nolan has stopped eating solid food with the Mighty Milk. He will eat breakfast, but lunch and/or dinner are not on the menu - he's simply too full and bloated to eat. Call me crazy, but chocolate milk is not a nutritionally complete meal option for a five year old child.

Our surgeon wrote me back and was concerned. The dietitian called me back yesterday morning. My concerns, and her responses, are below:

1. He isn't eating food with the mighty milk. Her response: keep at it and make him drink it. His stomach will grow with time.
2. He is bloating and uncomfortable. I am stressed because he isn't eating and he is in pain. Her response: keep at it, don't get stressed. If you get stressed, he will sense it and use food to control you.
3. We don't have the script for DuoCal. Her response: I decided not to give the script to the surgeon. I sent it to his pediatrician instead. His pediatrician knows him better.
4. He starts school in one week. I don't want him to miss instructional time due to leaving class for extra meals during the day. Her response: I'll write a letter to let him leave the classroom as much as he needs to, so that he can get food in the nurse's office.

I was so upset once I hung up the phone. She wasn't listening to the concerns at all - she isn't the one watching him bloat and have horrid diarrhea. She isn't watching him leave his lunch and dinner untouched due to the milk. She doesn't seem to care that he'll miss time in the classroom to accomplish her plan. 

Before meeting with the dietitian, Nolan didn't have any food issues. Sure, he didn't eat quite enough of it, but he likes a lot of different types of food. He ate salmon the other night, for goodness sake! With her plan, he is learning to drink only milk, and is getting sick off it. Instead of supplementing his meals, the mighty milk is replacing his meals. 

In fact, we can't even get 2 cups of mighty milk into him during a day. For the past two days, he has only had one cup. Yesterday, he refused to drink more than a quarter of a cup. It makes him feel bad, and he isn't stupid. He isn't going to drink something that makes him feel sick. The mighty milk is just a bad idea for him.

It isn't working. Plain and simple.

My intuition flickered at her note that she was now sending his prescriptions to our pediatrician. I had told her (in our initial meeting) that his pediatric group rotates doctors, so he often never sees the same one twice. In fact, he hasn't seen his "official" primary care doctor in approximately three years, as a nurse practitioner has been the one to see him for at least the past two well-child visits. Her comment that his "pediatrician knows him better" tipped me off that the surgeon might not agree with her assessment. She was purposefully avoiding talking to the doctor who had seen Nolan the most frequently over the past six months. Something wasn't right.

I decided to call the surgeon's office and schedule a follow-up appointment for the end of September, since that is when Nolan's "four week oral trial" will be finished. The office staff could tell I was a bit stressed, so I told her (in a slightly higher pitch than normal) that "Nolan-is-bloating-and-has-diarrhea-and-the-mighty-milk-makes-him-sick-and-I-don't-know-what-to-do-and-he-threw-up-in-California-and-I-think-he-might-have-reflux-again-and-I-am-really-stressed-out!"

I feel badly that she ended up with the call from the crazy, stressed out mommy. She was wonderful, though. Instead of telling me that I was silly, or overreacting, she took care of it. She told me that she would put him in for September, but also that she was going to page the nurse. The nurse would call me back.

I still felt a bit silly, as it wasn't really an emergency, but something just wasn't sitting right. The dietitian had insinuated that Nolan's intake was a behavioral issue. Having lived with the full brunt of Nolan's digestive tract for the past five years, I heartily disagree. 

I was walking out to the car to go to Nolan's sleep neurologist appointment when the phone rang. It was J, the surgeon's nurse. She was a great calming force.

"What's going on, Mom?"

I gave her the lowdown, from the issues the mighty milk was causing to the vomiting attack in California. 

By the tense tone in her voice, I knew she wasn't happy with the dietitian. Apparently, the dietitian had been told to order a pump, and refused to do what the doctor ordered. I told her,

"I might be overreacting, but I'm worried that the delayed gastric emptying is causing a big problem. And I'm worried that the reflux is back, with the vomiting being so severe."

She simply said, "This is why we wanted to do overnight feeds. Some children cannot physically, medically take in the right amount of food to grow. This isn't a behavioral issue, this is a child with a known history of severe GI tract issues who had a fundoplication and needs nutritional support."

As a side note, the dietitian also lied to me. She told me that overnight feeds were not possible with the C-Pap. After conferring with other parents who have children who require both, I found that this was patently untrue. Children CAN receive overnight feeds and use C-Pap (or BiPap) at the same time - as long as a nasal mask is used in case they vomit. His sleep neurologist confirmed this at our appointment later that day.

I especially loved the nurse because she had a plan. I didn't have to continually fret over something that wasn't working. Her plan is:

1. Do an upper GI barium to ensure the fundoplication is intact and functioning. If it isn't, this is the cause of his vomits and feeding problems. If it is, then we can relax about that portion and focus on step #2.
2. Get a pump and do overnight feeds. This will allow him to eat normally during the day, won't cause him to miss classroom time, and will allow him to grow with a nutritionally complete formula (as opposed to chocolate milk).

The upper GI will be done this Friday. I am waiting for the hospital to call with the time. They can put the barium through his g-tube, so the procedure will be extremely simple for him. In the meantime, he is eating regular food and is happy to stay away from the horrid mighty milk.

Back to School Shopping

In less than two weeks, school starts. Nolan's kindergarten information packet has arrived, we have his teacher assignment (Mrs. H) and his supply list. His teacher seems pretty wonderful and has already called to see how things are going for us.

Instead of worrying about how we're going to keep Nolan fed in school, I buried myself in retail therapy today. I took the kids to Erie, PA and we went to Target in a quest to find backpacks, lunchboxes, and school supplies. Apparently, kids in Pennsylvania start school before kids in New York, because the backpack section was wiped out and they were not re-stocking. I did manage to get everything else, though, so I'm calling a huge WIN on the shopping trip.

After the necessary supply shopping, I took the boys to the mall to find the Crazy 8 store. For those who aren't aware, the store is owned by Gymboree and the clothes are adorable and low-cost. I managed to get several really cute outfits for both boys - the shirts were about $4 each and the jeans were $7 for Nolan.

The shirts run big at Crazy 8, so I picked up some 3 year old size shirts (Nolan normally wears a 4T). I absolutely love this dinosaur outfit:

Nolan's Giant Tummy of Bloat is a bit better today than yesterday. His surgeon already wrote me back and asked if the bloating was from air (he asked if he had been crying a lot, if he liked the milk, etc). I told him that he hadn't been crying and simply got too full - he likes the "mighty milk" taste. The surgeon suggested venting him if he bloats and draining off the excess so that he remains comfortable. Even though we might lose some of the calories by doing this, we can't have him in such distress.

Sorry for the details, but this blog is as much a way for me to keep records as it is for keeping friends and family up-to-date. Stop reading now if you don't want a blow-by-blow account of What Nolan Ate. It's dreadfully boring.

Instead of making waffles for breakfast this morning, I gave him some dry cereal with the mighty milk on the side. This let him get in his 8 oz. without too much discomfort, since he had an empty stomach. We drove to Erie and ate lunch at Panera Bread - he didn't eat his macaroni and cheese at all, and only ate a tube of yogurt. We went shopping and came home - he had a little bit of bread, but really hadn't eaten anything since breakfast.

He did eat dinner well -one stuffed shell, some green beans, and a small clementine. He drank the last 8oz. of mighty milk and then had some orange juice. He was bloated and uncomfortable, so I vented off some air and a small amount of fluid.

We're looking forward to the weekend and Nolan's birthday on Monday. I can't believe my baby is five!

Dietitian Appointment

I am never so grateful for the invention of the DVD player as when I am driving two small boys for six hours (round-trip).  I am even more grateful for the $5 bin at Walmart that supplies cheap kid's movies. The drive to Rochester went well, though Nolan's batteries died somewhere between Buffalo and Rochester.

Nolan: "Mom, I can't hear. My batteries died!"
Me: "OK, Nolan. I'll change them when we get to the doctor."
Nolan: "MOM, my BATTERIES DIED!"
Me (shouting): "I'll change them when we get there."
Nolan (at top volume): "MOMMMMM!!! MY BATTERIES ARE DEAD!"

Suffice it to say that I heard a repeat of "my batteries are dead" for the next thirty minutes. Note to self: change batteries before the next long car trip, even if its premature.

In any case, we made it there in plenty of time. The boys were really good in the waiting room, which is something of a minor miracle in my world. We were called back and Nolan was measured and weighed on the dietitian's scale. He weighs 33.7 pounds on her scale.

When she came in, she had no idea of his medical history. She simply knew that his surgeon was recommending overnight continuous feeds, and that he had had a fundoplication and g-tube placed in March. He is failure-to-thrive, and is only consuming half the number of calories he needs to grow. She had no idea about his hearing loss or other medical issues, which is par for the course (each specialty is myopic and only sends on information about their particular subject matter).

I didn't go through his entire medical history, as I had a feeling she would like to eventually go home for dinner, but I did discuss his reflux and bloating issues. I showed her pictures of the bloating. Pictures are always good at these "first meeting" appointments, as Nolan's issues have been a long-standing battle and not something that has cropped up recently. He hasn't gained weight in over a year (and has actually lost a little), which is generally not a good sign.

She said that she normally likes to have kids try DuoCal (a fat/sugar additive) and Pediasure orally before tube feeds. They normally give kids 3-6 months of an oral trial.

Nolan would need to take in three additional bottles of Pediasure plus 5 tablespoons of DuoCal plus his normal intake to grow.

She is giving Nolan 4 weeks of oral trial time - if he hasn't gained in four weeks, it goes into the tube. She gave us chocolate and strawberry Pediasure and told me to take it home and see how he likes it. If he likes the taste, she'll order it along with the DuoCal.

We're already running into problems. He HATES the Pediasure. HATES it. Apparently, it tastes a little like baby formula. I haven't tried it yet.

The other problem is there is no way I can get 3 whole bottles of Pediasure into that bloated little tummy without causing vomiting. He took a few sips tonight and most of it ended up on his shirt (spat out, not from vomiting - but he has no desire for more). I have to call the dietitian tomorrow and see where to go from here - perhaps we can simply use a ton of DuoCal instead of the Pediasure. I also have tips from other parents who have been-there-done-that to ask about Carnation Instant Breakfast, as that might be more palatable.

There is a very high probability that Nolan will be tube fed in about 4 weeks, to supplement the other half of his caloric needs. The dietitian said that he cannot be fed overnight while using C-Pap. This means that he would have to be fed during the day, which further complicates matters. If he is fed during the day, we run into the same bloating problem. Plus, the tube feeds are more likely to take the place of food. I'm currently scurrying about trying to find other parents who have been in the C-Pap/overnight feeds situation, to see what their solution was. I think the concern is that the formula could be refluxed up and then sprayed into his lungs by the air pressure of the C-Pap - we're not confident that his fundoplication is holding since he has been vomiting so easily.

I suppose this is another thing we'll take one step at a time. Blurgh.

Referral to Feeding Clinic

The surgeon called back, and gave me the phone number for the feeding clinic at Strong Memorial. They are such a fabulous facility - the ability to email your doctor and the fact that they actually call you at home is fantastic. In any case, we have learned a few things. One is that Nolan is not taking in enough food - at the moment they don't care about the nutritional quality of the food as much, since we simply need to get calories into his body. Obviously the nutrition is needed, too, but he is not a case of sensory food aversion or other behavioral issues- his stomach simply cannot handle a normal quantity of food at any one time. It's not a great picture, but you can see the bloating that occurs when he tries to eat a sandwich:

His stomach cannot digest the food fast enough and he becomes bloated. This causes pain and nausea, which prevents him from eating more. It can take 2-3 hours for the bloating to go down. I will sometimes vent via his g-tube to remove air from his tummy, but we don't want to vent off the food he just ate. So it is a bit of a tricky business, but we are usually able to get the air out and then allow the food to go back in by gravity (at least, as much of it as his tummy will take).

The bloating can get so bad that it will actually push his belly button out. Once we vent he usually feels a tiny bit better, but it is a difficult and frustrating process.

Nolan currently needs 600 more calories per day to obtain growth. His weight and height are stunted, which makes the situation a bit more urgent. The body uses energy for the brain first, height second, and for putting on weight third. When both the weight and height are affected, it indicates his body is not getting enough energy for proper brain development.

We cannot get those calories into him with regular food. We are feeding him as often as possible and it still isn't enough. The solution to this problem, at least for the time being, is to slowly give those extra calories overnight. When (and if) he is able to get those extra calories in by mouth during the day, we can wean down the tube feeds.

The nutritionist was willing to meet with us over the phone since he has such a medical history, but I always prefer to meet the people in person so they can meet Nolan. I made an appointment for August 21 and we will drive up to meet the nutritionist and discuss his history.

In other news, his hearing is still touch-and-go out of the right ear. I think the infection is healing, but we still get a significant amount of feedback if we put a hearing aid in that ear. I am still very hopeful the infection heals before we fly!