Holland

Holland... A good friend of mine, and fellow special needs mommy, posted something on Facebook the other day about hating Holland and I have to say right about now I am hating Holland as well. For those of you that are thoroughly confused at this point, you can read all about Holland HERE. This past week has been a crazy one. It has stressed me out, pissed me off, brought me to tears, worn me out, but most importantly it has also reminded me of all of the good things Holland has to offer.


The normal everyday life in Holland...
 Last week started off with a few clinic visits to the pediatrician for bladder problems, a bad cough and the usuall breathing difficulties that accompany that, and a strep test . After a prescription for steroids and antibiotics, and  few days resting at home Deklin's cough and respiratory issues were good as new (kind of). We Scheduled an ultrasound for his bladder and kidneys, and his strep test was negative. Wednesday his GJ-tube coiled again so first thing Thursday morning we headed down to Madison to have that changed. Deklin was already scheduled for an MRI on Friday so we spent the night at Ronald McDonald house Thursday night.

After his MRI, still a little loopy. 

The good things Holland has to offer...

Over the last 4 (almost 5) years I have met some wonderful people, who like myself have unexpectedly found themselves navigating through the streets of Holland. This weekend Deklin and I got to spend the weekend with one of those families. Deklin had so much fun playing with K and Z. K and Deklin are the same age and are both tube fed, have many of the same allergies/ restictions with food, and get along really well. The mommies spent the weekend chatting, sewing, venting, comparing stories, and not getting nearly enough sleep. It is wonderful for the boys (and mommies) to have someone to play with who is just like them. 

The boys

The part of Holland I hate...
We planned to head home Sunday, but Deklin's tube had other plans...It coiled again. So we spent one more night at our friends house and headed in to the hospital Monday morning. (Deklin's tube has to be replaced in IR and they aren't there on the evenings and weekends. He wasn't dehydrated and was keeping down some fluids so we waited until Monday morning) We went in through the ER because that is usually the quickest way to get his tube changed and he had an ultrasound scheduled for later that day at our local peds office. His GI doc came in to see us in the ER and told me that we could not replace his GJ anymore. Because of Deklin's anatomy any GJ that we put in is highly likely to coil at some point, and we can't keep changing them every few days/weeks. We are currently in the process of switching Deklin's GI care from Madison to Milwaukee, so Madison GI wanted to consult with Milwaukee on what the plan should be. The plan ended up being to admit Deklin to the GI floor in Milwaukee and that is where we have been since Monday. We were supposed to be flying to Arizona on Saturday but it looks like we are going to have to reschedule our trip.

Trying to play the PS3

The plan....
We are hoping to be able to transition Deklin back to G-tube feeds. With Deklin's history of aspiration there is some concern about transitioning back to G feeds, so we have been running tests and making sure it is safe to transition him back to G feeds first. The plan is to medicate him with anti-nausea and pain meds for the first 24-48 hours as we try to slowly work our way up on his feeds. Right now he is running at 30ml and hour and he needs to be able to tolerate 55ml and hour before he can be discharged. The plan is to continue going up 5ml every 2 hours until we reach 55. Deklin has had some discomfort, nausea, and vomiting, but we are hoping over the next few days his tummy will adjust to having food in it again and all of that will subside. If the G feeds fail we do have a couple of other plans in mind, but we will cross that bridge if we come to it.

But I'm not tired mom

The good new is we've had time to complete his 335 piece Power Rangers Lego set.

Food Trials

Food, we all need it to survive. But what happens when, for whatever reason,  you can't eat or eat enough? For some it means a feeding tube. What happens when you are a 4 year old who  likes food and desperately wants to eat but can't? This is where we are at with Deklin. He misses eating, he wants to eat, he doesn't seen to care anymore if it makes him sick or not. He just wants to eat. In January we started food trials again with him and he is enjoying that. We have a growing list of both fails and passes. Food trials are hard because a "fail" can manifest itself in a few ways. Sometimes it's obvious like vomiting or bad stomach aches, other times though it isn't as obvious. Sometimes it's more behavioral, how do you figure out what is normal 4 year old moodiness and what is a food reaction? Other times (like now) its a rash that comes on more than a week after the last "new" food was introduced. The rash is hard because some things for Deklin like wheat are fine initially, but react after eating it a few times in a row. He has also been refluxing a lot again, so not sure if he is having a mild reaction to one of the new foods, or if he just refluxes anytime there is anything in his stomach. One other issue is some days his stomach works better than others, and on the bad days he wont tolerate anything in his stomach, allergy or not. There is also the issue of him getting excited over a food (bananas) that ends up being a fail. As frustrating as this process can be, I am just thrilled to be taking this step forward. Deklin is also very happy about being able to eat again.

Deklin's doctor and I have talked about blending food and putting it through his tube for food trials with the hope of eventually moving toward a full blended diet if possible. This will allow me to trial a food without having him eat it. This way if it does fail I don't have to give him something that he is excited about just to take it away. Now every food I give him to eat orally will be something we know already passed. Also as he gets more okay foods we can supplement some of his commercial formula with real food. The problem was that to put food through his tube the food needs to be fully blended into a thin liquid consistency so it wont clog his tube and I don't have a blender good enough to do this, and they are expensive to buy new. We have however recently had a wonderful company step in and help us make this process a little easier by providing us with the blender necessary to do all of this. (go to you tube and type in "will it blend" this blender should do the trick)   I am so so thankful for the generosity.



Deklin has GI and Pulmonology appointments coming up as well as an MRI so I will do an appointment update soon. 

FEEDING TUBE AWARENESS WEEK (day 1)

DAY 1 TOPIC: Tell your story. Educate others about what life is like with a feeding tube and with your child’s/family member’s/your medical condition. Why does your child/Why do you have a tube?

Deklin was born a full term presumably healthy baby. When he was just a few hours old Deklin nursed for the first time, afterward he spit up everything. At the time no one thought much of it, a lot of  babies spit up. The next few months were a continuous loop of feedings and spit up. At 4 months old Deklin was diagnosed with GERD and put on medication to try and control it. It was around this same time Deklin also started getting frequent respiratory illnesses and was diagnosed with reactive airway disease. The next few months were a blur of spit up, vomit, and nebulizer treatments. Just before Deklin's first birthday he was hospitalized for pneumonia, and it was then that his doctors discovered he was aspirating. After many tests, medications, and hospitalizations it was discovered that Deklin was aspirating liquids he took in orally as well as from his reflux. After many discussions his doctors and I decided to go ahead with a Nissen (surgery to prevent reflux) and G-tube placement.
When Deklin's G-tube was originally place it was used for venting (he couldn't burp because of the nissen) and supplemental feeding. Over the last year Deklin's reflux has comeback with a vengeance, and he stopped tolerating G-tube feeds. After frequent vomiting losing almost 10lbs over about 4 months the decision was made to convert Deklin's G-tube too a G/J tube.
Deklin is currently fed an elemental formula 23 hours a day directly into his intestines via his J-tube and We use the G for venting/draining his stomach. If it weren't for Deklin's tube he wouldn't be able to get (and keep in) the nutrition, hydration, and medications that keep him alive.