Friday, August 31, 2012

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.


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.

Thursday, August 30, 2012

Kindergarten Open House

We went to visit Nolan's classroom this evening. His classroom is very colorful, with lots of centers. It is a great contrast to Matt's Kindergarten classroom, which was very sterile in many respects (and had few centers).

Nolan's teacher plays the piano and has one in her classroom. I really love the inclusion of music and center time into the kindergarten day. I didn't get a lot of pictures of his classroom, because I was talking to his Teacher of the Deaf. She had his new FM system set up and waiting.

I will have to return the county-provided FM system, which is sort of a bummer. On the other hand, the school district is allowing me to take his FM system home, so I consider this a big WIN.

We can still use it at home, and I will set it up each morning and take him to school with it on, just as I did last year. This worked well for us last year, so we'll keep doing it again this year.

I did tell his TOD that his reporting skills were hit-or-miss. If both hearing aid batteries die, he will always say something. Since he is functionally deaf without hearing aids, two dead batteries really impact him. If one battery dies, however, he won't say anything. As long as he can hear something, he figures he's still good to go. If the FM isn't working, he'll often insist that it is - until you fix it and turn it on, when he'll declare, "I can hear you now!"

Fortunately, he has hearing aids so his occasional failure to report malfunctioning equipment can be checked - we can listen through his hearing aid/FM combination to be sure it is set correctly.

School starts on September 5 - we're all excited for a great year!

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!

Wednesday, August 29, 2012

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.

Monday, August 27, 2012


I'm not sure how it happened, but somehow my baby has turned five years old. Five. I'm pretty sure there has been a rupture in the space-time continuum, because there is no way five whole years could have elapsed from this:

 to this:

Man, I am lucky to have this kid in my life. I'm not sure how I deserved the awesomeness that is Nolan, but somehow I won the lottery.

He totally cracks me up. "Mom," he said, "take a picture of me like THIS!"

"And THIS!"

"And THIS!"

He is hilarious, brilliant, quirky, and fun. I'm so glad I get to be his mom.

Friday, August 24, 2012

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!

Mighty Milk

Since Nolan didn't like the Pediasure, the dietitian suggested adding 1/3 cup powdered milk to a cup of chocolate milk. They call this "mighty milk" and it has double the calories of a regular glass of milk. We went out and bought some carnation powdered milk and added it to a cup of chocolate milk - Nolan liked the taste, so that was a big win.

Yesterday, he ate breakfast (one and a half waffles) and then I gave him his morning "mighty milk" snack at about 10:30am. He would drink a little and then be done for a while, then drink a little more. I spent most of the day chasing him with a sippy cup, trying to get him to drink the entire volume. It took until 4:00pm, and he didn't eat his lunch or much of dinner because of it. We still had one more cup to get into him, so we sat over him and didn't let him move until he had downed the entire cup of milk.

He drank this one over the course of an hour, and didn't feel well. His stomach bloated and he was "too full."

He then had severe diarrhea and, while still bloated, seemed to feel a bit better.

For comparison purposes, his stomach is typically flat and not tight-as-a-drum and bloated:

I have emailed the surgeon and I am waiting for some direction - I can't make the kid sick like this, but obviously he needs more calories.

I really wish they'd look into the "why" of the bloating, because maybe we could treat that and have a boy who is able to eat normally without all of this craziness!

Tuesday, August 21, 2012

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."
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.

Monday, August 20, 2012

Back From Vacation

We are finally home from our 2 week vacation in California - we had such a great time! Nolan's ear infection did clear before we left, which was a relief. The flight was no problem at all and we had a great time visiting Sea World, Lego Land, and a spur-of-the-moment trip to Disneyland.

We also visited the beaches, went miniature golfing, and ate as much Mexican food as our bellies would hold.

Nolan did really well on the trip, with only one day of tummy trouble. The day we left San Diego, we decided to visit the KidSpace Museum in Glendale/Pasadena. About 20 minutes out from the museum, Nolan begged us to vent him. He doesn't ask for this very often, but I figured his breakfast of nearly 2 pancakes must have generated a little extra air or was causing discomfort. I tried to vent in the car, but nothing came out of the tube. We shrugged our shoulders and Nolan seemed a bit fatigued, but said he was OK.

We walked into the museum and the temperature was over 100 degrees, so we went to the indoor gallery first. The kids climbed a bit, then Nolan walked over to the pretend ant-hill and sat down. Then he vomited.

This was pre-stomach-explosion. Not feeling so hot.

I took him to the office, where he proceeded to vomit about 4 more times. I had the museum staff find Dennis and Matthew, we gathered as many plastic bags as we could, and we headed back to Oxnard. Nolan vomited about every 10 minutes on the ride home, which took about 2 hours. Once we got him to my parents house, he was extremely drowsy and fell into a deep sleep. When he woke 2 hours after that, he was a bit "off" for the first 30 minutes, and was then totally fine. His energy was back, he ate, he drank... he was completely fine.

It wasn't like he had the stomach flu, or even reflux. It was very odd - like a "vomiting attack," if you will. Whatever the cause, I was grateful that he was right as rain by the afternoon. We didn't see a repeat of the episode for the rest of the week, which was a relief!

I will put pictures on our other blog as time allows (and as I transfer them from our laptop computer). I have several articles to write for Hubpages to finish my required minimum as part of the Apprenticeship Program. I also have the kids' school registration information packets to complete and Nolan has a dietitian appointment in Rochester tomorrow. These last two weeks of summer are going to be busy!

Sunday, August 5, 2012

In Which Nolan's Name Suits Him

Before Nolan was born, we settled on his name because we liked the sound and the Irish origin (we lived in Ireland for a while) - and then we saw the meaning of his name, and the meaning sealed the deal.

Nolan means champion.



We had no idea how perfectly his name would fit him.

We woke him at 8:30am on Saturday for his 9am soccer game. He couldn't wake, and was in pain when he did wake. He requested that I vent his tummy, which contained some air and a lot of tummy fluid. It didn't help much, so I tried to get him to eat. I gave him a children's chewable Pepto Bismol tablet, as he was begging for help because he was in so much pain. These really only have a placebo effect for Nolan, but at least they help him feel like he is able to do something for the awful stomach pain.

We were going to skip soccer, but he was sobbing. He loves soccer. He's remarkably good at soccer. So we carried our hurting boy to the car and went to watch his last soccer game of the year. I told his coach that he was probably out for the game, and he sat on the sidelines while his team battled for the ball.

After the first period, he decided to play defense. In U-4 soccer, the defenders mostly sit around in front of the goal and don't do a lot of running. By the third period, he asked to play offense, where he immediately scored three goals.

A lot of the parents watching from the sidelines shouted, "Wow, he must be feeling better!" Except he wasn't, really. He was simply playing through the pain.

He played one more round of defense, standing in front of the net and resting. The game ended early, and everyone got their snacks. Nolan's Popsicle melted in its wrapper, as he couldn't eat it. We went home as soon as he had gotten his participation award.

I am so proud he is my son. He is so young, and fights so hard. He doesn't let anything get in his way.

Thankfully, our little champion started to feel better by noon on Saturday. He has been eating today, so hopefully we are getting past this nasty bout of "tummy not working."

Friday, August 3, 2012

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!