Therapy...oh how we missed therapy

After way to long of a hiatus we finally got Deklin back into OT (occupational therapy) and speech. This makes me one happy momma, my little sensory boy was a wreck without OT. We've also noticed some regression in his speech since he hasn't been getting regular speech therapy. Deklin loves his new therapists, and looks forward to his "play time" every week. It has definitely made our already busy schedule a little challenging, but so worth it. He was referred for a PT eval at the same time due to increased falling and tone issues, but we were having trouble finding a pediatric PT in the area. Deklin's wonderful ped was finally able to find one and Deklin will have his PT eval on Friday.

Things have finally started to warm up around here, which unfortunately it's not good for my heat intolerant little man. We have seen Deklin struggling quite a bit on the few warmer days we've had so far. I was able to (kinda of) make a cooling vest for him, and while not quite perfect helped tremendously. This may be a long summer...or maybe we just need to move to Alaska.

We are very busy the next few weeks, with end of year party's, conferences, IEP meetings, doctors appointments, therapy,  and finishing up soccer. We are counting down the days until summer break.

Sleep (or lack thereof)

Alternate title: I Need Coffee
I really need to find a way to get more caffeine in me in a day. Deklin averages about 15 hours of sleep a day. Roughly 10-12 hours at night and a 3-5 hour nap. Yet still at 5 doesn't sleep through the night. And before you say it, I know take away his nap, tried that. 2 weeks of hell and still didn't sleep through the night. On a good night (no tummy aches, leg pain, headaches, or any other random pain)he wakes up and goes right back to sleep fairly quickly. Mommy on the other hand doesn't fall back to sleep quite as easily. On the bad nights (usually because of GI issues) he will be up for a couple hours at a time. Most nights involve 3 or 4 wake up calls a night, plus the pump which has to  beep at least twice (or more) or it feels left out, and add in the fact that I frequently end up sleeping sitting up on the couch with him or with him in my room I'm tired. And yes late night blogging doesn't help, but some nights you just  give up on sleep. I need coffee.

Long overdue update

I really need to try and update this more frequently.

The last few weeks have been crazy around here. Deklin had his GJ-tube switched back to a G-tube, switched to a new formula (which he reacted to), and went just back to his old formula again.

still trying to get used to G feeds again
Lots of bloating lately

We (barely) made our flight to AZ.

We went swimming.

Enjoyed time with friends and family.

Had a quick ER trip (whats vacation with out a trip to PCH)

and yes all 3 have hospital bands on, they were all seen
Do we know how to party or what

We celebrated Easter

And Deklin's 5th Birthday

AND...Last but not least Deklin started soccer

 

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.

GI and Pulmonology

Last week Deklin saw GI and Pulmonology for follow ups. GI was supposed to be a follow-up from motility testing. We were supposed to go over the results and put a plan in place. Well none of the happened, instead we were told Deklin is too complicated for Madison so they would be referring him to Milwaukee for his GI care. So now we have to wait until April for his motility follow-up.
At least his Pulmonology appointment went well. Pulmo doc is happy we think we finally found a good maintenance regimen for Deklin (we haven't seen his lungs this healthy in a LONG time) unfortunately for my hands (and arms and wrists) this includes 3x day chest PT. His pulmo and I have talked a little bit before about getting Deklin the vest, but for various reasons never went ahead with it, last week we finally decided it was time to order one. To my great surprise it arrived today! I am so happy, this will be a huge help to have.

After Deklin's pulmo appointment we picked up the car and headed down to Chicago to meet up with my mom and sister. We had a blast in Chicago. Deklin loves spending time with his auntie Em and Omi, and I of course love seeing them as well. Sunday afternoon we stopped Auntie Em and Omi of at the airport and headed for home, only to discover that his J-tube had coiled again. So we made an over night pit stop in Madison,  got his tube changed Monday morning, and headed home.
Deklin has been having lots of bladder issues lately so Monday he is headed for a renal ultrasound, and Friday is his MRI.

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 Valentine's day

What is the best thing that has happened with tube feeding? What benefits have you seen? What progress would you like to celebrate?

I really wanted to do a big long post on this tonight. unfortunately it's that's not going to happen so here's the quick version. When Deklin stopped tolerating feeds he started losing weight. In a matter of months he had dropped  dangerously low and the decision was made to switch to a gj tube. Without this tube he would have continued to wither away right before our eyes. His G tube and his gj tube have literally been life savers for him. These pictures were taken about 7 months apart. The one on the left was take shortly after he switched to the gj. He is SLOWLY starting to put weight back on and will hopefully start looking like the picture on the right again soon.

Official 2013 Feeding tube awareness video

http://www.youtube.com/watch?v=0jBX05Gs-RQ&feature=youtube_gdata_player

Motility testing

Deklin has motility testing done last week to try and determine why he is so c chronically constipated, and why he doesn't tolerate G-tube feeds (feeds into his stomach). As usual we left with more questions than answers. The thing with motility is out can vary from day to day, we know he deels with delayed gastric emptying, so we may have just caught him on a "good" day. The test showed that his stomach and small intestines are contacting like they should be, but the large intestine didn't contact until meds were given to make it. The good news is that the large intestine did respond to the meds, the bad news is he was in severe pain with every contraction. We also didn't catch any retching episodes during testing because he was given anti nausea meds just before the test because he was vomiting. They did take biopsies during the scope so we are still waiting on the results of those. We have a follow up with his GI at the end of the month to go over every thing and come up with a plan.

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.

10 days

Motility testing in 10 days. I have been counting down the months, weeks, and now days since September. I am hoping and praying we will get some answers from his motility testing. This poor boy needs some sort of relief. He needs relief from the constant pain of chronic constipation, the pain and nausea, relief from monthly (or more) tube changes because reverse motility keeps coiling his j tube. Most of this evening was spent cuddled on the couch trying to find some relief from the pain and retching. Hoping tomorrow is a better day.

Genetics

Saw genetics this morning, didn't really learn anything new. We are still looking at mitochondrial disease as a possibility. The last round of testing we had done came back inconclusive, so we are now moving on to mtdna testing. It will take 3-5 months to get those results back. She also ordered a few other labs that we will have drawn at his peds office, as well as referral for an MRI.

In 1 1/2 weeks we will be heading down to Milwaukee for motility testing. Praying for some answers there. We will follow up with GI at the end of February to discuss what we see with the motility testing.

In other news Deklin can now say Popsicle! For anyone that doesn't know him on a day to day basis,  we have been working on this forever. Popsicles are one of the few foods Deklin is allowed to eat, so he has one almost daily, which means lots of chances to practice saying it correctly. Yay Deklin.

Undiagnosed

Undiagnosed sucks! I never in a million years thought I would ever hope to have a doctor walk into a room a say ma'am your child has (insert diseases/syndrome/chromosome anomaly here). 4 years ago when we realized that Deklin had something more going on than just your average baby sickness we started down the long, scary, frustrating road of genetic testing. The first test we did was for cystic fibrosis, his docs were sure that was what was plaguing my little man. They were so sure in fact that he has now been tested 4 times for CF (because one negative test isn't enough)... he doesn't have CF. I remember waiting for the test results to come back and just hoping and praying it would come back negative, and being so relieved when it did. At some point over the last 4 years that thinking started to shift I started going back and forth between wanting this test or that test to be negative, but at the same time hoping it would come back positive. Feeling both relieved and discouraged when it came back negative. It's not that I want my baby to have some terrible disease, it's the fact that there is obviously something wrong with him and I want to know what it is. It is so frustrating to be told over and over again "there is something wrong with him. We just don't know what, or how to treat it". I am so tired of  test after test coming back negative or inconclusive. Having  some test or lab come back with something off, but no one knows what it means. 

Deklin sees genetics again tomorrow...I am both looking forward to the appointment, and dreading it. I want to know what it is we are fighting. I am under no delusion that once we know what we are dealing with there will be some magic pill that will cure him instantly. I just want to know what his prognosis is, I want to know what we are dealing with so that maybe we can better manage him, I want to know every time he regresses or we add a new med or medical device if it will be our new normal or if it is just a temporary set back. I JUST WANT TO KNOW.

For those of you that got through my long rant stay tuned tomorrow for an actual update. 

Deklin

A little bit about Deklin...Deklin was born a happy healthy (we thought) little boy. The one thing we did notice from day one hour one was the the reflux. He spit up all day every day as a baby, but he was a "happy spitter" so the doctors said no need to worry, he would grow out of it. As an infant he was sick a lot with various respiratory illnesses, some requiring hospitalizations and oxygen support. Deklin is still currently Undiagnosed, but we are working with a wonderful team of doctors and hope to one day have a full diagnosis for him.  Although we don't have that "all encompassing  diagnosis for Deklin we do have plenty of individual diagnosis for him. As of now he has been diagnosed with reactive airway disease (later asthma), Dysphagia, severe GERD, food allergies, Autism, sensory prcessing disorder, ADHD, developmental delay, speech delay, chronic constipation, sleep apnea, hypotonia, thracheomalacia, Gastoperisis, Motility disorder, pseudo obstructions, and visceral hyperalgesia.   (I'm probably forgetting something). Deklin has been hospitalized many time for Aspiration pneumonia, GI related issues, and various other things. He has had countless other surgeries and procedures, but powers through it all like a champ. Deklin is currently has a G/J tube and is 100% J-tube fed with the G-tube draining/ venting continuously and uses supplemental oxygen. He has a closet full of meds and supplies,  and a wonderful team of doctors working very hard to keep him happy and healthy.