Logan's Mystery

For: Logan
Organizer: Valerie Gonsalves
$3,035
of $5,000 goal.
Raised by 45 donors
60% Complete

The Story

Logan was born on July 11, 2012. As the newest baby in a close family of cousins, he quickly became known by a host of nicknames. Baby Slurpee didn’t stick (his birthday is 7/11) to the disappointment of his Auntie V, but Loggie and Little Loggie have remained. As we all celebrated this new addition to our family, we had little knowledge of how true the nickname Little Loggie would become.

Hilary’s pregnancy with Logan was normal, as was his birth. In fact, early on, there was little remarkable about Logan’s arrival into the world….with two decided exceptions: his hair and his eyes. Born to a family of decidedly dominant dark traits, Logan’s light hair and blue eyes stood out: he has always been strikingly handsome and unique from the rest of our family. Logan was a relaxed and happy baby from the start. He was content with many kisses from his big brother Ryan, and smothering attention and adoration from all his cousins. He passed easily from outstretched arm to outstretched arm of a loud, raucous family and rarely cried. His remarkable feature, his hair, which stood straight up in the back until very recently, delighted everyone who met him.

Logan was a spitter. This kid could vomit a substantial amount of fluid for a few hours after eating. Such a spitter, that people who asked to hold him were warned that they would be covered in stinky milk if they held on too long. Hilary lived in a perpetual state of stink, and began covering Logan in “perfume” (aka baby lotion) so he still smelled lovely, even if she didn’t. Still, even with the spitting, Logan never seemed distressed and continued to show signs of normal growth and development. His doctor diagnosed the spitting as Reflux, a condition his brother Ryan had, prescribed a standard intervention, and thought little else.

At the start of the holiday season, Hilary became worried. Logan was still spitting up remarkable amounts of fluid and his weight seemed to be stabilizing. At his doctor’s appointment, the pediatrician seemed unconcerned and against her better judgment, Hilary did not pursue the nagging feeling in her stomach that something was wrong. Shortly after Christmas, Logan began to show signs of distress. This usually happy baby was lethargic and fussy. Hilary took him to the doctor again, and despite showing weight loss, was still sent home with a message that she need not be concerned, after all she was told, he still looked okay visually. Hilary would continue to hear this message over the coming months as she fought for care for her child. She never expected that her baby’s handsome appearance and happy demeanor would serve as an impediment to treatment.

As the days went on, Little Loggie continued to be little. In early January, Hilary took Logan to the doctor again, as he still was showing signs of distress and demonstrated continued weight loss. A different pediatrician treated Logan that day, and after Hilary’s report that her baby looked “scary” to her, she and Logan were admitted to the hospital for additional treatment. During this stay, Logan was placed on an IV due to dehydration. He also received a number of diagnostic tests. What Hilary intended to be an overnight stay, turned into almost a week long endeavor. During that time, Logan was placed under anesthesia, and had an endoscopy. This revealed an enlarged pylorus, which was dilated with a balloon. We were all ecstatic, clearly, this was the cause of the problem. Though the doctor’s did not diagnosis him with pyloric stenosis, a common disorder in infancy, there were many signs and symptoms that were similar. We were expecting a full recovery.

We were not correct. Shortly after this procedure, Logan’s symptoms returned and he was re-admitted to the hospital, again showing signs of dehydration. At this point, his numerous hospital stays run together. But from early January until March of 2013, Logan spent more days in the hospital than at home. He celebrated his sixth, seventh and eighth month birthday’s in the hospital. Pictures demonstrate his ongoing developmental gains (he learned to sit!) despite dangerous dehydration and improper nutrition. During this time, Logan was introduced to doctor’s from a lot of specialties. He also underwent a lot of procedures that involved anesthesia, which is dangerous for anyone at any age, but of particular concern when you have a small baby with compromised ability to recover due to poor nutrition. He had an n-g tube, from his nose to his stomach, which was unsuccessful. He had an n-j tube, from his nose to his small intestine, which had limited success but was ultimately ineffective due to the high likelihood that he would pull it out (which he did) and the need for anesthesia when re-placing the tube. Additionally, Logan had numerous imagine studies of various parts of his body (including his brain!), tests of kidney function, tests of amino acids, and genetic testing. A lot of these tests revealed some abnormalities, but nothing was conclusive. A chicken and egg situation emerged: were his tests inconclusive because he was sick and his numbers were off, or were his numbers off prior to him becoming ill?

The above paragraph represents the shortest summary of what our family experienced ever written. During this time, several things were occurring simultaneously. Logan still had an older brother who required even more care and attention, given the upset of his normal routine. Ryan, a trooper in his own right, spent many nights with random family members so that people could alternate supporting Hilary and Logan at the hospital. Shaimai and Shaipai took on a huge burden of multiple, daily trips to the hospital with Ryan, carrying food and clothing in for Hilary. Tony also routinely made trips to the hospital with food and clothing. Auntie V came home from Madison every weekend to make sure that Shaimai and Shaipai got a little break, and to spend nights in the hospital with Logan so Hilary could go home. Auntie Melanie and the kids drove down from Canada in order to help out and see the baby. Reinforcements were called in the form of Debbie, Auntie Benita and Jo. These women helped to care for Ryan and provide support for Hilary. Rubin scheduled playdates with Ryan to ensure that he felt special and loved. Hospital staff routinely commented on the amount of support our crew was able to provide, in addition to their numerous comments on Logan’s good looks and stunning personality.

During this time, answers seemed few and far between, more questions were raised, and Logan got sicker. Our hope was shattered every morning, when the naked baby on the scale would show a loss of an ounce or two. Our hope was bolstered whenever it appeared he kept down a bottle, a feeding, or some medicine, only to be dashed as he nonchalantly puked it up at different intervals. We learned about occluded IV’s, that coloring on no-no’s is bad, and how to reattach Logan’s tubes to his feeding pump. There were moments of terror, when during Logan’s first procedure to place the n-j tube, he was gone for hours with no updates and when he woke up swollen everywhere with numerous needle sticks as the doctor’s searched for any vein that was viable for a blood draw. There was an ambulance ride to Lurie Children’s Hospital in downtown Chicago after the doctor’s shook their head in wonder and confusion and told a devastated Hilary that there was nothing more their hospital could do. There were more tests, more theories, and no answers. There were crushing disappointments, like learning that despite her very best efforts, Hilary would have to stop breast feeding Logan in favor of a formula designed for sensitive stomachs.

Eventually, Logan received a g-j tube. A tube that allows his stomach acid to drain into a bag and for him to receive nutrition through his small intestine. He was able to come home from the hospital and begin to grow. This tube was placed in March. Since then, Logan has done well. However, no one knows what the prognosis is, because no one knows what the diagnosis is. He continues to attend frequent doctor’s appointments with many specialists. He will have surgery again later this month to replace his tube, and during that time he will undergo more testing. We are thrilled he is growing and thriving, but without knowing what the future brings, we still seek answers.

So why am I writing this now? I got the idea a few weeks ago. I am gearing up to train for a marathon. I had wanted to run in the Spring, but Logan’s illness prevented me from training. I had the idea that I would start this fundraiser to coincide with my training. Hilary and Tony could certainly use the help to offset incidental medical costs, such as gas to the appointments, co-pays, etc. More than donations, we seek answers.  I’m hoping that by having a web site, we can reach people we haven’t spoken with before. So please, pass this link along!

Fundraiser Updates

Posted on February 19, 2015

Posted on February 19, 2015

2/19/15

Feeding Tube Awareness week is over. What did you learn?

I learned a lot by following the site on facebook. One of the main things I learned was the importance of loving the tube. Not the tubie, the tube. It's weird, I spend a lot of my day as a psychologist helping people to make their lives better. We talk about mindfulness, gratitude, and happiness. We talk about letting go of things that make us bitter and resentful and filling our lives with things that help us live in line with our values. This is much easier to talk about than practice.

It's easy to get caught in the unfairness of situations, of this situation. It's easy to focus on how much stress this causes, how much work this causes (mainly for Hil) or how unjust this situation can seem.

While all those emotions are understandable and make sense, it's easy to lose a sense of gratitude. That's what feeding tube awareness week did for me. It reminded me to be grateful for the tube. I don't know where we would be without it. I don't like to think about it honestly. I know the tube has given me a vibrant two-year old nephew, who tells me things like "I love my new shirt Auntie" or who says "dance with me!" to his favorite tv jingle. I know the tube let me watch as Logan and Ryan wrestled like fools last night after a long day indoors in the cold chicago winter. So, I'm grateful for the tube. And my super-tubie nephew.

And today, our tubie has more hospital time and more procedures. It's time for an endoscopy and to change his tube. So as I write this, he's either arriving at the hospital or almost there to prepare for more anesthesia and more poking. I wish things were different, but I'm grateful things are the way they are. Pray for our super tubie everyday, but maybe a little more today.

Posted on February 8, 2015

Posted on February 8, 2015

2/8/15

Happy 2015. I haven't posted an update in a while, but this is a good week. It's feeding tube awareness week. So first the update and then the awareness. 

We recently learned that the doctors at Mayo won't see Logan. We were hoping that they might be able to offer some new answers or ideas. Unfortunately, they said that since Logan has been seen at Children's in Milwaukee, which is a great GI hospital, they have nothing else to offer him. That's a crushing blow. What options does that leave? Logan will have had his tube for 2 years next month. He's definitely doing well with it. But the tube is work for Hilary, and it would be nice if eventually, sooner rather than later, Logan didn't need it.

Last month when I was home, Logan wanted to play. He lead me to the living room, and put me on the couch for my "x-ray." He put the pillow in front of me, I assume like the lead plate, and gave me my xray. Later, I was laying on the floor with ryan and Logan insisted I turn over. He pulled up my shirt because my tummy hurt and he needed to look at my tummy. He then asked if he could take off my pants (I replied no). He was pretty insistent so I asked what he was doing. He was looking for my "tubie". 

Now onto awareness. I've learned a lot from this site http://www.feedingtubeawareness.org/ and the parents who post on facebook. It can be sad. But awareness is important. So incredibly many children have feeding tubes for years, decades even. They are life savers. If there was another option, doctors and parents would be using the least invasive option possible.

I love a tubie. 

Posted on November 18, 2014

Posted on November 18, 2014

11/18/2014

I've been bad about updating this blog. Everytime I spend time with Logan (which is not reflected in how often I post, thank goodness) there's more stories, of a kid. Little of which has to do with his health. Though like a plague or a dark cloud, his health issues remain.

Logan's had a tough month. His tube was leaking, resulting in a replacement the week of Halloween. More leaking, resulted in more surgery, during which time they discovered Logan's stomach was full of area. The conclusion, after some time, was that his stomach has stopped working again, viral gastreoparesis, is the official term. They don't know why (that's the virus part) or what the course will be. They've started him on medication to stimulate the stomach, with limited success. He also had difficulty breathing after the anesthesia the last time, which is nerve wrecking as well. But he's trucking along. I'll post pictures soon. He also has a cold. And he's so loveable, that he gave me a big kiss full of his boogers. Which was awesome.

His speech remains incredible. He was actually able to jump and get both feed off the floor! We'd love any help or suggestions people have, it's time to get the kid off the tube.

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