My Unique Flowers: Feeding Tube Awareness Week

Sunday, February 8, 2015

Feeding Tube Awareness Week

Today is the start of Feeding Tube Awareness Week!!

This is our first year.

Nathan just got his G-Tube on June 24th, 2014.

My favorite part of being a Tubie Mom is this ......... all the crazy mistakes that happen.

Okay, I'm lying, it's my least favorite part.

But seriously - how many times do you need to "forget to close the med port" before you learn??? How many times does it take to be BATHED in medicine before you finally figure out you have to check it ten times (literally) before you pour the meds in. And when the med ports take on a mind of it's own and opens on its own...

I mean - REALLY??? Then let's throw in the beeping in the middle of the night of kinked lines because they are laying on or wrapped up in the tube .... or the random mystery problems with the pumps.... or how about things are just not working and you just ... can't ... figure... it ... out.

Really - my favorite part is how well it's working for Nathan. Probably too well.

Nathan - June 24, 2014 - right before G-tube Surgery

Nathan - January 2015

Nathan's weight - June 2014 - prior to surgery .... (bottom weight is his brother Keadyn's)

February 2015 weight for Nathan .....

It's made a HUGE HUGE HUGE difference for him!!!

There are a lot of sites for Tubie kids accessories. We got our first pads through Patchwork Peddler (link for free sample! and leads to their website) and even though we had trouble getting our initial order - we got it and they made up for the mistake :) Which we were grateful for :) These are amazing pads! They are super soft on the inside (against the belly) .... we also had fun doing trial and error washing them - because we don't have a washing machine. So I had to learn to wash them by hand, without using fabric softener. (Because fabric softener can actually make it less absorbent.)

Tubie Friends is an amazing organization which will send your child a stuffed animal with a G-tube (or JG-Tube, and other medical procedures) ... to make things a little easier. We got Nathan one prior to his surgery. You don't get to pick out the animal, it's a bit of a luck of the draw. This is Nathan's though, he named it ARMY.

And if you homeschool you can use it for a science project!!! Try to suspend the medication!! I kept failing ...... not that failing isn't freaking cool too ....

But one night I got it!!!!

There is the million supplies that come with having a Tubie!!

But it's all about the attitude!! Make it fun!! Keep the smiles going!!!

It wasn't an easy first 7 months .... but it has really been worth it!

And we have fun with the bags!!

No comments:

Ongoing Fundraising ....

We are currently running a fundraiser for our kids, Nathan and Noah - who both have different rare genetic disorders. Please take a moment and read about them! We are trying to raise money for some things insurance doesn't cover, and to get to a conference next summer (2014) if we can. We are focusing on two things right now, both costing over $5,000. If you can donate, wonderful, every dollar counts and is greatly appreciated. Please click the link and check out our FUNDRAISER.. You can read their stories more by clicking on the page links above...

CALAHAN JOSEPH ~ January 5, 1996

Calahan was a surprise.. My ex-husband and I haphazardly decided to try to have a baby after we got engaged. I was only 18, he was 19 ... and it was silly - I was ready for a baby but he was NOT. Course you don't realize that until you fast forward yourself through life. He was due December 25, 1995 - Christmas Day. He was born January 5, 1996... coming overdue and in at 8lbs 7oz and 20 1/2 inches long.

Pregnancy Complications: (Mom)...Hypertension.... Limited Activity/bedrest, water leaked for a month (Delivered via natural labor, semi-induced, 13 hours 56 minutes, 2 hours of pushing)

Complications at Birth: Broken Collarbone (didn't find out until he was 6 months old) ... bleeding hard to stop after circumcision

Complications Past & Now: Night Terrors starting at 8 months old... nose bleeds & bruising since he could walk... at 2 1/2 he went through a Leukemia Scare (found out he didn't have it via bone marrow testing - very scary!!) ... Diagnosed with ADHD at 4... mild ODD at 5... ITP (Idiopathic Thrombocytopenic Purpura) Bleeding Disorder

May 29, 2009: Calahan broke his left arm in two places after having an accident on his bike.

September 2010: Calahan went through testing and was determined that he has a learning disability called Dysgraphia.

June 2012: Calahan started therapy again, he has severe anxiety issues and mild depression.

February 2013: We have realized that Calahan also has PTSD

NOAH ALEXANDER ~ February 1, 2002

Noah was a baby faught for... Found out at 4 months pregnant that he has a rare genetic disorder called MOSAIC TRISOMY 16. He was due St. Patricks Day 2002. He was born February 1, 2002... coming in at 1lb 12.2oz and 13 3/4 inches long. He was a fighter from the moment of conception.

Pregnancy Complications: diagnosed with rare genetic disorder MOSAIC TRISOMY 16 @ about 18 weeks, severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart decelerations, bilirubin in amniotic fluid
(Mom) Hypertension... Pre-Eclampsia ... Limited Activity to complete Bedrest, (Delivered via emergency c-section)

Complications at Birth: Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious, Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias ...

Complications Past & Now: Small size (At 5 he was 30lbs), mildly physically delayed (mostly due to his small size)... he has dealt with and continues to... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone (very bothersome)... hearing loss in his left ear (hearing seems to have gotten worse - 2007)... surgery to correct the hernias @ 6 months, surgery to correct the hypospadious @ 13 months, surgery to put tubes in his ears at 2 years.. went through various gastro testing due to mysterious vomiting issue...

April 2007 - got C-DIFF bacterial infection from antibodics and started to go into Kidney Failure, he almost died.

April 2009 - Noah's heel cords are very tight again, and he needs stretching out every day. If his tone is not better, then by early next year he'll have to be casted for 3 weeks.

August 2009 - Noah has been having increasingly more blood in his urine showing that his kidneys are getting worse. Right now the kidney tests are coming back okay but it's being kept an eye on.

March 2011 - We found out his tone issue isn't just below his knees but effects his whole leg, so they took casting off the table. Also, he doesn't really let anything hold him back. He doesn't really run, he sorta side skips quickly sometimes, and there are times he will actually run, but over all, Noah is just Noah. His kidneys are just something we're going to have to keep an eye on. Noah ended up being hospitalized for a night at Seattle Childrens when he had Influenzia A ... it was attacking his kidneys and he was spilling out a large amount of blood in his urine, his kidney's bounced right back but it was a scary moment. His hearing seems to be getting worse so he's got some hearing tests coming up.

August 2011 - Noah fell down the stairs to our apartment and broke his nose and had to have surgery to fix it. He couldn't go outside and play for awhile due to everyone being afraid he might hit it and trying to avoid another surgery.

September 2011 - Noah failed his hearing test in his left ear. Not only is it typical hearing issue but it's in his ear bones too. So it's a lifetime loss, it's not just because he gets fluid built up. So he was fitted with a hearing aid on his left ear. He was super excited to get it, but once he got it - it was very weird and sensory issues ... it was overwhelming for him. So he's only wearing it for school at the moment, even that was a fight.

NATHAN PATRICK ~ April 19, 2007

Nathan was a surprise.. My Husband & I were going to start TTC the month following the month we got pregnant... we found out at 20 weeks, there were complications... with another pregnancy... needless to say, I felt useless and broken. He was due May 13, 2007 - Mother's Day. He was born April 19, 2007... coming in at 3lbs 4oz and 15 3/4 inches long.

Pregnancy Complications: diagnosed with 2 Vessel Umbilical Cord, IUGR, Dandy Walker Cyst/Varient, ..(around 20 weeks pg)
(Mom) Fibroide Tumors, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but kinda last minute)

Complications at Birth: Low Birth Weight @ 36.5 weeks, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Dandy Walker Variant, Soft Cleft Palate/High Palate, Heart Issues (gotta look it up)

Complications Past & Now: Came home on an NG Tube (ended early June '07)... Feeding Issues .. Oral Sensitivity... Torticollis ... Hydrocephalus (August '07, Sept '07)... a Bifid Uvula (explained to me as an upside down heart shaped uvula), he also has some tone issues where they are very loose. Undescended testicles....Aortic Septal Defect...

9 months old: Poor kid has his first Ear Infection, pneumonia, his first diaper rash AND cut TWO teeth all in ONE WEEK! Poor baby!!!

updated April '09 .. there are now suspicions of Russell-Silver Syndrome, hypothyroid, and he has been showing some signs of some sort of Autism (has genetic tests pending, along with more blood work to be done and a evaluation with the Autism Clinic pending) ... He has officially been diagnosed with Failure to Thrive. He also has mild Scoliosis, and is most likely going to start HGH (human growth hormone) in the Fall.

updated August '09 ... All of Nathan's genetics tests have come back fine, including the RSS. Not sure what that means exactly since I read that the genetics test may not be 100% ... and the way he seems to fit. However at this point, it just seems to be one more diagnosis in a long line. He had tubes put in his ears in June and seems to be doing much better with hearing and slowly progressing with speaking. His appointment with the Autism Clinic is Sept. 16. It was determined that Nathan would need more testing before officially diagnosing him with "Autism" however there is more signs there to warrant further testing.

update November '09 ... Nathan had his first hypospadious surgery, and had his undescended testicle on his right side moved down to where it is suppose to be. It went well for the most part, but he came home with a catheter which had to stay in for several days. He'll have to have the second surgery in about 6 months.

Update April '10 ... Nathan has officially been diagnosed with Russell Silver Syndrome

Update August '10 ... Nathan has been going through a lot. He had started Autism testing early in the year, but we stopped due to the fact that we were making a big move from WI to WA State... we have re-started the process of the Autism testing here. We also have talked to his new Urologist about the 2nd surgery for his hypospadious, and in addition, he will need a 3rd surgery for his undescended testicle that has gone back up, they aren't sure if they can try to move it down again or if it'll have to be removed. We also ended up going to the endocrinologist for his hypothyroid and to discuss starting HGH (human growth hormone) after his official diagnosis of the RSS. The process has begun and we'll be going to "train" to give him the daily injections soon.

Update September '10: So ...he had his 2nd hypospadious surgery, and it ... for the most part ... went well, but we had the blessing of dealing with another catheter ... at least this time we didn't have to deal with the bag and whole deal, he just had the tube there so it could leak into the diaper. We actually had to double diaper him, the inside diaper to catch the poo and there was a hole for his plumbing to be supported (due to the surgery) where it could leak into the outside diaper. It was a very very rough week after the surgery, and even after.... but we managed, and survived. He was in a lot of pain. A little while after, we discovered that he had a couple of holes (fistulas) open up and so he has urine streaming through a few holes... so, hopefully he doesn't need a 4th surgery! We'll see though. But ... Part 2 is done! He also had dental surgery to put caps on all of his teeth due to them all rotting thanks to his high calorie diet. :/

Update January 2011: It's official, Nathan has been diagnosed with Autism (specifically, PDD that they believe is due to his multitude of medical issues) ... which I completely agree with. IN addition to that, it has been mentioned based on his last MRI that he is actually MISSING some of his cerebellum, specifically the Vermis .... and that he may not have Dandy Walker, but rather Jouberts (pronounced Joe-Bear's) Syndrome... we are seeing one of the nations #1 expert genetics Doc about it. So we shall see..... we... shall... see.... (no Jouberts Syndrome, sticking with Dandy Walker Varient & RSS)

Fall 2011 ... We've seen cleft palate specialists and they said that if he failed his hearing tests (which he did) that he would have to have surgery on his sub-mucus cleft palate. Also - a speech lady came in, she feels he has a speech disorder called "Dyspraxia" ... and she feels he's going to only be able to communicate properly through communication devices.

December 2011 ... Nathan had a one hour EEG done and then a 24 hour video EEG ... we recently saw Neuro and found out everything is a-ok :D No seizure activity found.

May 2012 ... My amazing Nathan has been through a lot this month! He has been approved to get a communication device, which we won't get for 4 to 6 months (thanks to insurance red tape) and on May 25th he had surgery to repair his cleft palate, got tubes in his ears again, and his uvula was patched. Now he's home and recovering!

September 2012: After a little debate and several failed hearing tests, Nathan was fitted for hearing aids in both ears. He will be getting them in November.

KAEDYN PHILLIP RUSSELL ~ September 9, 2008

Although I we knew we wanted another baby, that pregnancy test turning positive was a shock. Things were crazy after we found out that we were pregnant again. Dennis was worried about money and my health, and everything else. At 18 weeks we got the perfect amnio results showing everything was genetically fine and it was indeed our FOURTH boy!! I did get sick again, but I felt GREAT! For the first time I developed GDD, and I flirted with Pre-eclampsia like usual. But over all the pregnancy was great and I even ended up going into labor on my own 10 days before his September 19th 2008 due date. We had gone in for an amnio to check his lungs to see if he could be delivered and found out I was having contractions every 2 minutes and was 3 cm dialated! Oooooh boy! Things moved quick from there, and I was in the c-section room before I knew it. Kaedyn Phillip Russell was born September 9th, 8lbs 3oz and 18 3/4 inches. He started crying before he was even out of the womb (or had his mouth clear!) ... and he showed the world he had a GREAT set of lungs by not stopping until he was in my arms. He also baptized everyone showing his boy parts worked REALLY well over and over and over.. just when you thought it was done, it started back up!

Pregnancy Complications:
(Mom) Gestational Diabetes, Hypertension.... Limited Activity to complete Bedrest, (Delivered via c-section - planned - but moved quickly after found out I was in labor)

Complications at Birth: Jaundice

Complications Past & Now: None really - yay!!! He has eczema and that's about it.

January 2010: Kaedyn had a scare with his heart last fall. His murmur got load and everything turned out okay but it did freak Mom out a lot. And his eczema is horrible. It's full body and I can't seem to get rid of it for him. Now we've been back to the DR about it and got a stronger ointment to put on it (with steroids) and a ton of different lotions we bought to try to see what helped him. After only a few days on the new ointment he's much better.

April 2012: Kaedyn is taking after me by more than just looks! He has apparently grasped my allergies too. After a few days with extremely bad hives, he had to go into the allergist. He definitely has allergies, and I suspect it's to more than just dog, cat and grass ....

Pages

Sunday, February 8, 2015

Feeding Tube Awareness Week

No comments: