Friday, January 15, 2010

Our Journey to Pukeville and Back...Don't go. It's not fun.

I am one thankful Mommy. Let's just start with that. You'll see why when I explain the last four months, attempting to leave out most of the gory details. Oh, and did you know I have a serious phobia of vomit? Cause I do...a SERIOUS phobia, which obviously God wanted me to get over...stat.

The last week of September, 2009, Porter started acting funny when it was time to eat, often saying "owie" and then crying so hard he would throw up. This went on for a few days, so I took him to the doctor. She said that he probably had a viral sore throat, and just to keep an eye on him. Later that week, Porter and I flew to Florida for two weeks. The week from you-know-where. Throw up is bad enough at home. Much less in other people's houses and cars. I called his Dr. from FL wondering what the HECK was going on, and he had me take him to the ER to see if there was something lodged in his esophagus. Luckily, there wasn't anything in there, but this began the journey to specialist after specialist to try and find out what was making Porter throw up every day, and almost every time he ate.

Over the weeks, it got worse and worse. He could only tolerate stage 2 baby food and yogurt at his worst point, and even that was a battle with tons of gagging and ugliness. We were referred to an ENT after we got home from FL and went there immediately. They recommended a barium swallow study, and a modified swallow study, where he eats solid food as well, and they watch and take x-rays to see what happened when he swallowed. All went normally, despite the fact that they saw him aspirate some of his milk into his lungs.
This was taken right before they shoved barium down a tube in his nose into his stomach, and then made him lie still for 3 minutes!
And this is how he felt about that. Aren't I rude for taking his picture? Poor noonie. He pulled the tube out while they were squeezing barium in, hence the white stuff all over his face. He kept saying "bye, bye! BYE, BYE!"
After that, the ENT suggested an upper endoscopy to look for anything abnormal in his throat and esophagus that they may have missed during the swallow studies, and to test the 'gunk' in his lungs to see if he was aspirating on a consistent basis. He also got a Gastroenterologist on board to be there at the same time and look further down into his stomach and small intestine. The GI also decided to fo a flex sigmoidoscopy (up his little bum) to rule out infection in that end. This was ot a fun experience for our family, as you can imagine. It was supposed to be an overnight stay in the hospital, but luckily they let us go home. Seeing Porter come out of anesthesia was one of the hardest things I have done as a mommy. He was crying so hard and I could tell he didn't know where he was, and he just felt terrible. They left a tube up his nose and down his throat called a Ph Monitor to measure the amount of times he refluxed. We had to write down the exact minute every time he sat up, laid down, woke up, went to sleep, coughed, gagged, or vomited. Phew. They gave us one page to journal on, and we filled out four. They also saw bronchitis when they were in there that we didn't know he had, so we wrote down LOTS of couging. In a nutshell...all test results came back normal, except for one tiny biopsy in his small intestine came back inflamed for an 'unspecified' reason. In other words, it wasn't Celiac Desiease (one of the many theories), and they thankfully found out he wasn't aspirationg chronically, so he didn't have to drink thickened milk...ewwww. We also made it through the 24 hours with the probe in his nose successfully, and that test came back normal as reflux or GERD. Meanwhile, my 'healthy' baby is throwing up at least once a day, every day.

We have lots of sad pictures of him crying from that day. He looks only semi-sad in this one. The nurses were wonderful, though, and they tried so hard to halp him feel better. They even let me go back and hold him as he went to sleep. This is right before the surgery.

He was so upset, they had to give him double medicine to put him back to sleep.

See the little tube in his nose? It was taped to his face and the back of his neck, which was the worst part for him. He was such a trooper!

Alright, moving along...the GI then decided to order and ultrasound and stool tests. The ultrasound ended up showing some swelling in the ureta, so we were referred to a urologist...YAY! More doctors! He said it was how Porter was born and it would probably go away on it's own and they want to see him in a year. The stool tests were negative for infection.

At this point, I'm sure you can imagine the frustration as a parent not being able to figure out what is wrong with your child. I called the Speech Pathologist (in tears)who originally did Porter's swallow studies. I could not clean up puke one more time. I was exhausted. By the grace of God, she referred me to someone, who referred me to the Oral Feeding Clinic at Children's Hospital in Denver.

I knew in my heart of hearts this was the right move for us. Porter hadn't eaten normally in over three months, and I knew his issues were becoming behavioral. He forgot how to feel hungry or to chew and swallow properly without it weirding him out. He still had the oral skills, but it made him uneasy, so he wouldn't even try to eat. I was SO thankful to get an appointment just a couple of weeks out.

Miraculously (seriously, nothing short of a miracle) Porter began to make gradual improvements on his own in those two weeks before our appointment at Children's. He started acting interested in our food and would take a bite and then spit it out. He began throwing up less and slowly eating more. By the time we got to the Oral Feeding Clinic, he had made great improvements, and the four professionals at that meeting really helped us capitalize on the improvements he was making on his own. We saw a dietician, a speech therapist, an occupational therapist, and a developmental pediatrician. They were all so helpful, and in answer to MANY prayers, the pediatrician sat down with me and said "I'm going to tell you what happened to your baby." I wanted to hug her. Hug her and kiss her and hug her again. I had waited SO long to hear that.

Basically, what she said is that Porter did indeed have a viral sore throat waaaaaay back in the beginning of this nonsense. It hurt to eat, and it made his gag reflux work seriously overtime. Then, either that same sweet virus, or another equally charming one moved it's way down his GI tract into his small intestine (hence the swelling, which the GI doctors told me not to worry about). Well, this doctor disagreed intensely. She used the term "the perfect storm" to describe what happened to our little noonie to cause him such pain and discomfort that he couldn't eat anything of substance. Then, he learned to not eat.

We have been spending the last few weeks teaching him to eat again. Teaching him to get hungry again. He is doing REMARKABLY. The day after that appointment, he was a different child. Not only does he eat like a normal 19 month old, but he SLEEPS. It's amazing how babies act differently when they feel better. Porter is on medication for three months to help the swelling in his intestine, and they say he will never even know this happened, or have any effects from it.

All I can say is THANK YOU to my Father in Heaven for hearing our pleadings and prayers to help our baby. I really think that when your baby eats and sleeps, there is not much else to worry about in the world. It is a miracle, and we are so, so, so thankful to have a healthy boy again.

We had his 18 month well visit this morning (so he's 19 months?! I was a little preoccupied!) and he is doing so well. He is 22 lbs. 5.5 oz, which is the 8th percentile for weight. Not surprising, since he hasn't had many meals since he was 15 months old! He is 32 inches long, which is the 30th percentile for height. He is, understandably, completely and utterly terrified of doctors and screams as if they are pulling out his fingernails as soon as we come into the waiting room. Nevermind when the nurses or doctors weigh, measure, or even look at him from across the room. Hopefully now that he is through having things stuck inside of him, he will slowly realize that not every doctor's visit is miserable (and there was NO WAY I was letting him get shots today for that reason). He is doing fantastically in all areas of development now, and we are so thankful!

So, after a loooong 3 months, and probably over 120 throw ups...there is no more throwing up. There is food ingested and many hours of great noonie naps. I. am. so. happy.

Here is living proof that my child actually eats!!! It's awesome!!!

Yay, noonie!!!
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Andrea and Zach said...

Wow! I'm so glad things are returning back to normal for you and your family. Dang virus....

Patrick and Brooke said...

Wow, I'm so sorry you had to go through all that. Poor little guy but he is such a trooper! I know when Jackson had his surgery it was awful. Coming out of anesthesia is the worse, I cried and cried right along with him. That was bad enough, I can't imagine going through what you guys had to endure. I'm sooooo happy that he is doing better and I hope you/he never have to go through anything like that ever again. Give Porter hugs from us. (And 19 mos., seriously! Wow how time flies....)

Holly said...

Oh I'm so glad he is doing better! That must be so hard! I do know what you were feeling. My first was so colicky and cried and screamed for no reason all day every day. After every test in the world done, it was revealed he just was" colicky" And I had to deal with it. It sucked! I am so glad that things are getting back to normal for you.

My 19 month old doesnt eat either but he is just insanely picky.

Hope you guys are doing well!

Vivid Vinyl said...

No fun! Sorry to hear about all that. Thanks for the Christmas card - I never got mine out. I'm glad he is better. I know that not knowing is SO FRUSTRATING!

We miss you guys!