Picture Day and more

Friday was picture day at school. Or as my kids chanted excitedly "picture day picture day it's picture day yay" until I thought my ears would bleed or my head expload lol. They were so excited and it made for a fun morning dressing up, doing their hair and pretending to be a wild thing.

Yes pretending to be a wild thing because where would we be if Liam didn't sport his wild thing sweatshirt with hood up and walk around the house roaring at everyone. 

What a fun sweatshirt!!

Liam had so much fun that he refused to let me take the hood off so that I could do his hair. I had to take a brush to his school with me and fix his hair as they lined up to take pictures. 

He wouldn't even take it off to take a picture with sister. Neither seemed to mind since we're all used to the antics around here. Lanie wore a new outfit picked out just for pictures. She proudly sported her healed boots that I never let her wear. (See how she's trying to make it known in the picture lol)

The snags didn't end there though! I had forgotten to go by the bank to pull money out to pay for pictures so we had to leave early to do so. After getting to school I discovered that the picture envelopes were left at home and had to hunt down two more! Thankfully Mrs B, Lanie's teacher had extra!

Once the envelopes were filled out and stuffed with money, I sent Lanie off to class and returned to Liams since it was my scheduled volunteer day. It didn't take long before his classes lined up and left to take their pictures. 

After picture time the teachers lined them up on the tables on front of the class to take a big group picture. I was able to snap a few but can't post them due to safety reasons. 

I did snap this cute picture of Liam on the bench however. I really hope he smiled just like that for his picture because it's adorable!!

The class mascot was included in their group picture so of course we had to take a selfie with her. Her name is Franny and every morning she sings songs with the kids and they tell her good morning. Liam thought it was hilarious to cover my mouth up. 

Later Friday night I took the kids out to Bella's school carnival where they had a blast playing games. 

Lanie has a pretty good arm on her. She tried out the pitching booth and did great. 

We couldn't leave without a picture at the photo booth. 

We stopped off at the 4H booth to pet the bunnies. Liam kept telling us how soft the sweet bunny was. He had no interest in the baby goat though lol. Guess he had enough of goats at the fair!

We played King Kong ping pong many many.....MANY times. Liam loved watching the ball make its way down the board. 

Liam wouldn't let us leave without trying the water gun race game... Twice. He won the second time around. By this time Liam was true my exhausted but we still had tickets to use up. 

So we went back to he photo booth and took a picture with their cousin Steven. 

And this next will have you doing a double take if you know our little lamb. 

We had to at least try the cotton candy. Well truthfully I bought some cotton candy for myself and we sat on the grass to relax. Liam took one small taste then stole the whole thing from me!! He ate it!! And he loved it!!! We ended up going through 4 cotton candys throughout the night between the three of us. Liam ate at least 1 1/2 himself. 

This is HUGE!!! Finally little lamb is fighting through his oral aversion and trying new things and loving them!! 

Friday was exhausting. We didn't get home till almost 9pm. We didn't have much recouperating time before one of our favorite littles 7th birthday party. Little Jada (whom I like to call a sour patch kid) celebrated her birthday in style today with a frozen themed party that rocked it!! 

Her mom worked so hard to make it special and it was perfect. I am lucky I got to help a little with decorations and making frozen themed candy for the kids. 

I found the Wilton mold at Michaels and used the 40% off coupon then bought winco's melts. I went to a local cake shop for edible glue glitter dust for that extra wow factor. Pictured is the first batch which turned out with too much in some spots. The kids loved them though. 

Liam and Lanie enjoyed playing with their friends and seeing some they haven't in awhile. Liam are pretzels, chips, cake and had a blast hitting the piñata. 

After a long two days id say we could use some R&R. In all honestly it's been a long two weeks for me and I desperately need some R&R but it doesn't look like I'll get any anytime soon. 

I tend to end many of my post in a similar fashion but here it is...

This is what life is all about. Enjoying every moment and making it happy and fun. Not hospitals and pain and sickness. Thank you God for another great day with my babies. 

<3 <3 <3

Surgery Tomorrow

Tomorrow is the day. Liam must be at Children's tomorrow no later than 7am for his scope and possible relocation of his gtube. We have to leave at 5:30a to make sure we get there on time. I'm nervous that Liam is going under and nervous that he's most likely going to have to have another hole cut into him. We need to do whatever we have to to stop the pain he's having now though. We also need to be able to use the feeding pump again at night. It's that moment of complete and utter "my hands are tied and there's nothing I can do" kind of situation. To top it off his allergies are bonkers again causing his asthma to act up. Please pray for Liam and pray that the doctors make the right decisions. Thank you ❤️❤️❤️ #cdh #cdhsucks #surgery #gtube #tubie #spoonie #feedingtubeawareness 

Taken last night when Liam woke up crying in pain saying "my belly button hurts". Breaks my heart 

Go Away Tubie Go Away

(Pictured in Liam with his first post NICU feeding tube featuring tagaderm cut into the shape of a heart by me because this was the first NGtube I ever put in)

Tube feeding.

Not the hardest thing I've ever had to go through with Liam.

But I still cried when they said Liam was failure to thrive (FTT) and needed a tube.

3 years and 3 months later and it isn't getting any easier.

Liam ditched the NG just about a month after receiving it and "upgraded" to a Gtube.

He then went from a Gtube to a GJtube and back to the Gtube.

Last week Liam started crying over Gtube pain.

I rushed him to the GI because I thought it was infected.

I was told it didn't look too bad so we just did antibiotic creams.

That was last Wed.

Thursday I changed his tube out for a new one.

That badly irritated it and caused bleeding and worse pain.

Liam hasn't made it through a whole 3 hours of school because of the pain.

He doesn't go an hour and a half without crying in pain.

Today I called GI back and explained the situation.

She (Brittney) said that we need to try oral antibiotics.

She called our main GI and he said that if the antibiotics don't help within the next 3-4 days that the next course and to try a different type of tube.

I explained that that wasn't possible because the AMT mini one balloon-less button has been the ONLY button that worked for him.

She asked why the mickey didn't work and I explained that the balloon hits his pilorex muscle causing him to vomit.

This concerned her immensely.

She said that means the position of the tube is too low and that it needs to be moved higher.

So the conclusion is that if the antibiotics don't work that Liam will need to go into surgery to have his stoma closed and a new hole made for the tube.

I don't want this.

I don't want him to have to have surgery.

Yes I think he needs it.

I think this is the right move for him and it will help.

I just don't want to have my sweet boy have to go through surgery again.

As a mom I want to protect my little boy.

I want to keep him from pain and to keep him happy.

I'm scared for him.

You Don't Tell A Boy No

If you know me, Liam or what we've been through since he's been born then you know about his tubie Journey. 

You know that he's failure to thrive, meaning he doesn't grow like a healthy child. He doesn't eat enough my mouth to gain proper weight so he has a feeding tube. Gtube. 

If you've followed us you know that Not only does Liam not eat enough but he's very picky on what he will eat. This is caused by a severe oral aversion due to all that time being intubated and all the times he's vomited. No one wants to eat if they're just going to bring it back up. It's painful. 

So of you know all this, than you probably know that I don't deny Liam food. Just about anything he wants to eat, he's allowed. At any given moment. 

So it's probably no surprise that Liam's sitting here eating popcorn after dinner. Why? Because he wanted it. 

I do try to help him make healthy choices. I still sit him down for breakfast, lunch, and dinner with a plate of whatever we eat. He knows he must sit there even if he doesn't want to eat. For a few minutes anyway. We try to get him to at least try the foods even if it means eating off our plates. Whatever gets those calories into his mouth and down to his stomach. 

Once he knows he likes the food, he is willing to eat it off his own plate. I make a lot of the same things repeatedly because I know he will eat them. After all, the goal is to eventually get rid of the feeding tube. 

He loves meet in almost any form, including beef jerkey. He loves eggs, French fries, cereal, pop tarts, popcorn, chips, potatoes, bananas. I could keep going but I won't. 

After working and talking to many specialist and GI's, and everything failing, I had to find a way to make eating happen. I had to teach Liam how good foods can be. Nothing anyone did helped. Except what I've done. I'm not trying to brag, just simply stating a fact. 

I've worked very hard to get Liam where he is today with eating so I'm not ashamed to say I hardly ever tell him no when it comes to food. 

Even if it means popcorn for desert. 

Untainted Joy

I see other kids Liam's age and I can't help but compare Liam to them. I mean let me honest here, it was a knee jerk reaction. 

"Awe look at your kid running, that's so awesome" Why doesn't mine run?

"Awe she/he just said the cutest thing" I have to decode what my son says. 

"Wow she/he ate all their food!! And wants seconds, sure sweetie here you go" I'm lucky if my kid take 3/4 bites of something. 

Yep knee jerk reaction. I just couldn't/can't help it. Yea I understand the difference between a "normal healthy" child and well mine. He's in a category all by himself. Atleast that's how I felt. There were few others in the category with him but none close and none we've met. Two, maybe three, at max 6 kids.

Other tube fed, cdh survivor or medically fragile child I've followed either doesn't have their tubie long, doesn't eat at all by mouth because they're basically paralyzed or have severe gastroparesis, or eat their hearts out and still don't gain weight (meaning eat everything in sight).

I really thought Liam would be in the 'eat their hearts out and still not gain weight" category. Really did. Nope. Instead my son eats when the mood strikes and doesn't give a hoot to eat on a sched. He's also extremely picky. Yet this kid will stick anything and everything that is not food in his mouth. Yea not fun to wrestle non food items out of a child mouth who have a mouth full of teeth and knows just how to use them!! 

Anyhow I'm getting off topic and not saying what I really wanted to say.

There were times people would post about how their child got their feeding tube removed and how happy they were. The same people would barely post about their tubie journey or give insight to just how they got their once none eating child to actually eat. It's quiet frustrating. Here I am trying to spread awareness about all thing CDH related including and not limited to feeding tubes. 

But still. I congratulated them and on some level was very happy for them and especially the child. Woo hoo tube free!! Amazing. And it is. It really really is. Honestly. But on some sub-level I was dismayed. Disappointed that after all my hard work my son still has his tube and still refuses to eat more often than not. And everything revolves around spaghetti, noodles, Doritos and French fries. Oh and at times fruit snacks and maybe once or twice a month dry cereal. 

But even offering the go to fave foods he still refuses more often than not. And do I really want him to live off those items? Not really. There's not enough nutritional value. 

So you can imagine my frustration (or I hope you can). I've resigned myself to tube feeds, sticky stinky formula, getting up for feeds through the night, having to put the tube in when it comes out, tube infections and fight over food. Yea I'm resigned. It is what it is. 

But today. Today I had a complete different reaction. It was a knee jerk. There were no "why won't my kid do that?" Or anything else. My reaction was pure, unfiltered happiness for someone else's child's accomplishments. I was truely happy for this little boy. And for his momma. 

I was actually taken back by my reaction of pure simple happiness and joy. This was the first time I didn't think about how I wish it were me posting this and not someone else. Nope. Not once. And do you know how that made me feel? AMAZING! 

Truely utterly amazing lifted up in a cloud of happiness. 

I was truly happy for someone else's bliss and improvements.

It felt like a weight being lifted off my chest. Some people don't realize how very stressful it is to constantly worry about your child's health and improvements. Most people never have a reason to have to constantly worry. It takes a toll on your body and your mind. 

It can drive you to the breaking point. To a point where your not sure you can ever return from. And to never be 100% happy for someone else without thinking "why not me" or "why not my kid". It's draining. 

But today I've reached a new platou. Life looks a bit brighter. The sun is shining a bit brighter. Everything has a bit more color to it. I can breathe a bit deeper and smile a guinuine smile that hardly makes an appearance. Yes this is a great day. 

I know a lot of people who if the read this would probably be offended by the fact that they never knew I wasn't completely guinuine when I said I was happy for them. It's not that I wasn't guinuine because I was, but it was tainted by...by jealously I guess. Or maybe it was despair at my own situation I don't know. But they would take this wrong. Twist the words and manipulate it until it's ugly. 

No I was happy for you but yes it was tainted but the tainted was more for my life than yours. Yes I was happy for you bit I wished mine could be doing as well. For a girl whose lived her 31 years on this world filled with more misery than anyone could ever guess, you have to admit that if I can still feel happiness for someone else after all my misery that that's HUGE. Maybe in a way I've been overly happy and overly giving to others to maybe make up for that. I don't know but that's for another post. 

When I saw this picture of a little boy whom I've been following for years now, eating corn, I was overcome with joy. Pure untainted joy. And when his momma told me all he had eatin for dinner my jaw dropped and instantly I wanted to reach into the computer and hug this little boy and his momma. 

This little boy is a CDH survivor and has basically traveled the same exact road Liam had. I bonded with this momma over it. I gave advice where I had the wisdom to share. I prayed for this little boy and his momma more than I can count. I sent his big sisters hair bows. 

When I saw this post about this little boy eating I thought:

Way to go momma!! Wait to go P!! You did it!! 

Pure unedited, untainted joy!! That felt better than anything. 

You learn so much by following others journeys through life weather it's a medical journey or not. But I believe you learn more following those who've had to fight for every breathe they take. They see live differently and are unashamed in sharing how they feel about what they've been through because it's made them who they are today. They appreciate life more. Same can be said for the families of these people. Some cases touch my heart more than other.

In the case of baby P, his story just captured my heart. Not just because he and Liam have the same birth defect or that their journys have been so similar it borders on scary. No two CDH kids are alike. Each one is different and follows his or her own path. There are probably none two as alike as Liam and P. And that fact did help to capture my heart and make me feel close to his momma. But when I looked at his face and into his eyes I felt I could see a peice of his soul. Same as with Liam. Some babies are like old souls and their eyes shine with just love, knowledge and wisdom. Their eyes seem to see into your very soul.

When I looked into baby P's eyes (via pictures) I felt this. Just as I had with Liam. It's like theres an instant bond and you feel connected to these kids. P reminded me of Liam in so many ways I just felt connected to him and therefor his momma. And like me, how I love Liam, P's momma just loves P to peices and wants the best for him. How could you deny a love like that? 

You could tell me a thousand times my son ate a whole meal and I wouldn't believe it unless I saw it. When momma posted a picture of baby P eating corn on the Cobb and mowing down, I could just see the utter joy in this babies eyes. I could (or imagine) him in his cloud of happiness just chewing away. I instantly light up like fireworks. My brain pumped out so much serotonin it was crazy! 

This picture below...this picture makes me feel total untainted joy. And for that I am so greatfull. Because of this I have reached a new platou in this journey where I no longer think "why not my son?". 

(Picture taken by P's momma and shared with permission) check out his FB group 'Baby P (fight the fight little man)

Why not my son? Because it wasn't his time. It was P's and that's something we can rejoice and celebrate. 

I say completely overjoyed and untainted:

CONGRATS BABY P!! YOU DID IT!! YOUR AMAZING!! 

And momma your doing an amazing job!! I know how hard the journey is to get your tubie to eat but you overcame than with hard work and dilligance. You never gave up. That's inspiring to all of us other moms working on getting our tubie to eat a substantial, or even unsubstantial amounts of food. Think about it for a minute. YOU did this. Your hard work is the reason he's eating. You may have a few stains on your shirt but you made it through the food fight. This is the start of a new chapter for you both! You deserve a round of applause 👏, a high five ✋, two thumbs up 👍👍...or maybe a cup of coffee ☕️. 

I don't normally go out on a limb and do this kind of post but you inspired me. I know I helped you through some rough times and you helped me through some rough times, but when I was starting to feel like giving up you inspired me to keep at it. You also helped me grow as a person just being able to follow P's journey. For that I am so thankful. Because of you I can now be joyous for others and untainted. 

You go momma! 

TBT July 24 2011

#tbt #timehop wow 3 years ago Liam was in the NICU and I was so excited that I got to change his diaper for the first time on my own. It was also the mark of when I healed enough from the csection that I could put on jeans and wear real clothes. I was 4 1/2 hours from home in a city I knew little to nothing about. It was a Saturday when justin, Lanie and my mother in law came to visit. We took off walking in hopes of finding a store with reasonable prices clothes since all I had were sweat pants that started falling off me. We walked down Haight street just looking. We were about to give up when we ran right into the GoodWill, only it didn't look like any GoodWill we'd ever seen but a nice shop. That day I scored a few pairs of jeans and some tops and sweatshirt. We also scored a few books for me to read to Liam.

So why is this relevant to our CDH Journey?

From the very minute I found out I was pregnant with Liam I had to overcome situations, fears. When Liam was born sick so many things were thrown at me. I had to overcome my fear that he wouldn't make it and have absolute faith that he would. Yes there were moments when I had my doubts but I'd push those aside and think of the good. I had to overcome my fear of being alone in a city I knew little to nothing about to survive. I had to break through my shy quietness and stand up for my rights and my sons rights. 

If I was going to survive on my own I had to figure out how. If I was going live this new life and make the most of it I had to learn. I had to walk a mile alone on hills to wash my clothes. If stuff the dirty clothes on bags then into my backpack with soap and walk to the laundry mat. Then I'd have to sit there alone surrounded by strangers and wait while my clothes went through the process of washing and drying. Then is have to fold them and place them in my backpack and walk back to the hospital where I slept in a sleep room with 8 other mothers whom I didn't know and put away the clean clothes in my suitcase. There was no privacy. Something I ALWAYS had to have. 

I had to get over it and realize that this was it. This was my new life, our life. At some point I resigned myself to thinking that this was what our life would be from now on. I clung onto the simple things like routine. The doctors and nurses had a routine for Liam and I had a routine along with them that flowed perfectly. 

At one point even that changed as we were finally approved to live at the Ronald McDonald house and justin and Lanie could come and stay permenetly. Again I had to improve and chane the routine until we got one that worked. It was easier to accept that this was it. Our family was together and complete. 

Anyhow. Today three years ago marked the day things started to get better. The day our story started changing from one of tragety to one of success and inspiration.  Just 3 days after his repair surgery and the beginning of great things happening. 

The Normal Things : Part 2

There was a time when we weren't sure there would be a future with Liam. When we weren't sure he would survive CDH, the repair surgery, his damaged lungs or anything else thrown at him. Imagining him older than he was or healthy was nearly impossible. 

Then there was a time after he survived CDH and all of what NICU offered, that we didn't know if he would have a future where he could do normal things. The future seemed sketchy so I tried to live for just the day, maybe even the following day if I felt brave. I couldn't see my baby  boy playing in a pool or attending races or riding a bike. I couldn't see him walking through the mall just taking in the sights. I always wished and prayed for it and kept hoping. 

You look at Liam today and it's hard to believe that tiny baby in NICU that was fighting for his life was him. 

But I've learned from my own past as well as Liam's life that the past does not always dictate the future. 

You can choose to let the past claim you and overtake you or you can choose what your future will be. 

For me happiness is all I need. 

In the past we never would have even thought of taking Liam to the races... Of ANY kind. Between the noise and the crowd of being potentially carrying viruses it wasn't an option. 

Now look at us:

We used to go to the mini sprint races all the time before Liam was born. We loved it. We haven't been since he was born. Last Friday night we decided it was time. We bought both kids eat muffs to cut out the noise just in case. Lanie has sensitive ears and wore her most the time.

Liam however is another story. He LOVES the sound of the cars loud engines roaring as they race. We kept putting the ear muffs on him only to have him take them off again. 

Liam has racing in his blood. He doesn't are what kind of cars are racing, he loves them all. 

I loved watching him cheer on all the cars. 

He even took his sister purple checkered flag to cheer on the race. 

Both kids had a blast. We can't wait to go again for the next race. 

Cheering is very hard work and Liam finally lost the battle against sleep during the last race. 

The normal things are what make all the medical appointment, meds and hospital stays bearable. They make life fun and give us reason to carry on. 

The Normal Things: Part 1

Life with a CDHer isn't easy. As a family, everything changes. Things we used to do before seize to happen. You take for grantit all the little things that make life fun and interesting:

Going to the mall just to walk around and window shop. 

Going swimming. 

Attending parties with friends and family. 

The occasional dinner out. 

Even something as simple as taking an hour to yourself to go grab coffee with a friend. 

When Liam was born with CDH everything changed. It's taken me awhile to realize how much the little things mean and how badly I need them. 

No this is not a post to rant and rave but to celebrate the little things. It's taken 2 years and 10 months now to get back some of those little things. 

We recently tried taking Liam swimming. We knew he loved water because he never wanted his baths and showers to end but we weren't sure how a pool would go over with our little lamb. 

Turns out he LOVES the pool. As of Friday he's been swimming 3 times. We only have two issues:

1) Liam has no fear!!

2) Liam's stoma isn't too fond of the chlorine water. He's good for about an hour and a half at max before his stoma gets seriously angry red and starts bleeding. After this we spend the whole day trying to keep him from pulling out his tube. Neosporin helps. This is an issue that I will be bringing up to his pediatrician and his GI at the next visits. 

Besides those issues, Liam is a guppy when he hits water. His natural instinct when he hits water and his feet don't immediately touch bottom is to kick his legs! I am very very happy about that. 

At the pool at our gym there is a kiddy side where the deepth ranges from a few inches to 2 feet. There's also a frog slide. Liam climbs up the slide on his own then slides down into my waiting arms. I let his body get halfway submerged and even then his legs just kick as fast as he can. 

I figure this is really great excersize to strengthen his weak little legs. Since we started taking him to swim he has slowly tanned. He's not dark by all means but a shade or two darker than ghostly pale. It's a bit strange seeing some color on his for in the past he's never been allowed outside long enough to tan due to allergies or he was always stuck in a hospital room. 

Was our pediatrician right when he said he thinks this is our year? That things would be different from here on out? (This was said in December)

Honestly? I believe so. 

He's eating.

He's active.

He doesn't get sick often. 

We can truely enjoy him being a little boy now with much less worrying about what could happen. 

The following pictures were taken Thursday (his second trip to the pool). I hope that in these, even though they we're taken at a distance, that you can see how much fun he was having and how much joy it brought me to watch him. 

Choose Your Battles

Having children has taught me to pick my battles. Especially with Liam. Do I fight him when he only wants to eat Doritos or do I rejoice in the fact that Atleast he's eating something? It's not worth the fight to say "no you can't eat that" because it defeats the purpose of getting him to eat. 

Do I let Lanie wear mix matched socks or fight with her to find a matching pair? Fighting with her only causes emotional distress for both of us and who cares if her socks don't match when you can't see them anyway. 

#makeitcount #chooseyourbattles #cdh #cdhawareness #chroniclungdisease #asthma #gtube #tubie #spoonie #gastroparesis #malrotatedstomach #biotinidasedefficeincy #chronicpain #makingthebestoflife

4/7/14 5:26am

It's one of those nights where I'm even more sleep deprived than normal so more emotional. Really it's been like this for three weeks now. Something has to give. 

Did you know it's a proven scientific fact that those who don't get enough sleep loose brain cells resulting in irreversible brain damage? It affected your memory. Having trouble finding your keys or phone or glasses? Forgot you had then in your hand or in your pocket or on your head? Yep I do! Why? Because I'm sleep deprived and am suffering the ill effects of it. Lame. 

Tonight's trigger is Liam's Gtube. I am so frustrated with feeding tubes and the fact that it's always causing trouble. It's infected again and causing Liam pain. It's just not fair. The poor kid can't catch a break...and I can't catch sleep. (If I had the energy id insert a hysterical laugh here) ;)

He woke up in pain at 2am. Finally as I'm writing this at 5am, he is snoring on the floor. 

Lately I've been experiencing wanting to just take the damn thing out and let him learn to eat by mouth. (That's my depression, anger, frustration and exhaustion working) Logically it wouldn't work. It would cause more problems. 

I'm working so hard to get him to eat more by mouth. Problem is everything he gets sick he just stops and were back at square one. What worked last time usually won't work this time. He's also pretty much ditch the cuppie for the most part as well. It makes me sad and it makes me angry. 

Why angry? Not angry at Liam but angry at CDH, the reason he has these problems. I find that yes I am Infact angry at God. Why would he let Liam be born with CDH? Why would he allow Liam to continue to suffer and have problems? Why would he allow any baby to be born with CDH? I also find myself thanking God. Thank you for allowing my son to survive when so many other haven't. It's a confusing ordeal. 

I'm angry Liam has to have a feeding tube. I am also thankful that feeding tubes saved his life when he stopped eating. The feeding tubes and feeding pump have been the bane of my exsistance since he got it. It's caused so many sleepless nights and frustration. His stoma has caused him so much pain. And through it all Liam is still failure to thrive and not putting any weight on. He's been 22 pounds since June 2013. No matter how much we pump into him he just doesn't grow. So what's the point to all of this? Being as I am extremely exhausted and sleep deprived I just don't know. Maybe tomarrow I'll remember or figure it out. 

But tonight I hate the thing. If we don't keep his stomach wrapped in an ace bandage the gtube falls out or gets pulled out and we (me me me always me) has to put it back in. The bandage can be uncomfortable. Like tonight because his tube is already hurting, any amount of pressure makes it worse. He cries, makes me wanna cry. It's not helping my anxiety. And I know it's not helping Liam either. 

We (me me me) had to flush hi a mediport again today and he wouldn't stop wiggling and crying (don't blame him). In the middle of it I almost broke down crying myself. An anxiety attack just hit and I almost couldn't do it. I thought to myself how unjust and unfair and crappy this all was. I realized right after these thought ran through my head that I was having an anxiety attack so I took a few breathes and sucked it up. Needless to say his mediport got flushed. 

Life is just one miserable mess after another. Liam can't catch a break from being sick. I can't catch any sleep. Were a miserable pair I tell you. But Atleast we have each other <3 <3 <3

Ugh feeding tube failings

3/28/2014

Liam was crawling off the couch and guess what...

His feeding tube gets pulled out. 

I don't know if he's just extra hyper today because he's exhausted or what but he's been wallering the furniture, using me as a jungle gym and running around like an absolute crazy boy. 

So he slid of the couch, looks down and back up at me and says "uh oh. Mom out mom out" and points to his button sitting there on the floor. 

I grab our little tool and proceeded to put it back in. I've never taken pics of the process before and since I'm always being asked how it works I thought I'd share. Thanks to Daddy I was able to get pics. 

Be warned though, the pics aren't pretty. They're pretty gross. 

This one it was it looks like right after the button gets pulled out. I use a rag and ripe off all the fluid and blood. The reason it bled so much was because he stretched out the stoma when it came out. 

Next I insert the little tool and flatten out the buttons barb just enough to go back through the tube. That's it! It's ready to go. 

I did put triumcunilone cream on his stoma and a tubie pad. I also wrapped his belly with an ace bandage to keep it in. 

I am irritated that it came out because Liam was on a break from having his belly wrapped. The wrap hadn't been off but 45min. Figures though. 

Feeding Liam: Bolus

Liam's day time tube feeds are done bolus. That means he gets a bigger volume of formula at one time. Liam gets 3 bolus feeds daily of 4 oz in one sitting. Here how it's done:

I hold the button firmly with one hand then insert the extension by making sure the line on the extension is lined up with the notch in the button. 

Then I turn the extension locking it into place. 

Next I connect the 60ml syringe to the large port of the extension. The small port we use for his meds. 

I start his feed by pouring in the first 60mls (2oz) into the syringe. At this point the extension is still clamped so I can get an exact measurement. 

Then hold the syringe up, unclamps the extension and let gravity do it's job. When the formula gets to the bottom of the syringe, I clamp the extension and pour in the last 60mls of Liam's feed. 

I let his feed run all the way then just sit there letting him vent. This allows has to escape. I also do this because sometimes Liam will burp or retch and end up vomiting if not. This way it all goes through the tube and not his mouth and possibly lungs. Liam usually only needs to be vented for 2-3min or so. The while feed process takes us about 5 minutes. Liam has been fighting it lately. He wants to eat by mouth but doesn't want anything. Luckily yesterday and today things started going better. He didn't fight the feeds today and he ate. 

Good news is he's getting high cal stuff. All his favorites. Bad news is it's all empty calories. Well mostly anyway. He loves apple sauce, Doritos, French fries and random other things. He's been refusing actually meals. For lunch yesterday I did get him to eat some top roman noodles. It wasn't much but it was something. He has his moments. His GI said to give him whatever he wants to eat to get him eating regularly then we can start working on types of foods he needs to eat. OT said the same. Me? I decided nothing will ever be perfect and I need to stop trying to make everything perfect and just work on one thing at a time. Gotta keep his tube feeds going and him tolerating them. And I have to continue to offer him food in hopes he will eat them. Like with all thing partaining to Liam, some days are better than others. <3

Attached by the cord

Last night I did a post on how I set up Liam's night feeds. Tonight I want to do one that shows how I get Liam ready. 

He is literally attached to the cord, or in this care tube, all night long. When Liam had a GJtube I had to worry about it getting pulled out because that resulted in a immediate trip to children's ( 1 1/2hrs away) so they could put in a catheter to keep the hole open. He would end up with an IV and have to stay until they could get him in to surgery to replace a new GJtube. Then they would keep him until he tolerated full feeds and gained so many KG per day. This would usually be a week long process. 

To avoid this I started wrapping an ace bandage around Liam's belly to hold the tube in. Yes Liam does have a Gtube now that I can replace myself but we want to avoid stretching the hole. We also don't want it coming out in the middle of the night and leak all over as well as take a chance at his hole closing. Here's how Liam gets ready for bed:

This is the top part of Liam's stoma. It's actually looking really good compared to past. 

And the bottom of his stoma. He just stopped antibiotics for an infection of the stoma. It's a little irritated here because Liam pulled his tube out today accidentally. This is how we start, with a clean stoma. 

After cleaning Liam's stoma I use triumcinolone cream. This help with all that red tissue you saw above called granulation tissue. It's shrunk his in half in just a few days. Sometimes if the stoma looks really irritated and is sensitive ill use neosporin with pain releaver in it. It really does make a huge difference. 

Now tonight I had to use this stoma paste stuff instead of the normal stomahessive. We're still waiting on his refull to get here. This stoma paste seems to burn Liam and it smells bad. Putting the cream around Liam's stoma actually prevents this paste from burning and irritating. I had to figure that out on my own. You'd think they're be a warning on the tube but there wasn't one I could see. Still it's the only stoma anything we can get at our local walgreens or any local pharmacy. Liam's regulate stuff, stomahessive has to be filled by the walgreens at children's hospital (1 1/2 hrs away) and sent to us. They are a specialty pharmacy that deals with the special needs stuff like this and know how to work with CCS. I love the stomahessive because is a powder that when it gets wet turns into a glue like substance. Liam's tube leaks a lot on ots own I apply lots of the powder and it works like a charm. It also is easier to remove than that paste. 

Next comes the split gauze. I prefer 4x4s over 2x2s because they seem to soak up more when needed. I place the gauze between the button and belly. The paste or stomahessive bonds the gauze to his belly. What I didn't get a pic of was how I put in Liam's extension the. Take more gauze and place it under and around the extension but above the button. This braces the extension keeping it elevated and flat. If I don't do this the extension pulls on Liam's button causing the hike to stretch and causing Liam pain. 

Lastly I wrap his belly with an ace bandage. The one shown I had cut in half because it was so long, then sewed it so it was wider and fit his abdomen perfectly. I also used Velcro for a fast way to secure the bandage around his belly. Ace bandaged are pretty cheap these days. You can even find them at certain dollar stores. Velcro is only a few bucks and you don't need much. Your looking at maybe $3 spend to keep in his feeding tube. It's amazing how $3 saved us many many hospital stays and surges when Liam had a GJ.

When Liam was hooked to his pump during the day we couldn't keep him cooped up. Thankfully the ace bandage had given him the chance to realize his tube was being pulled out before it actually happened. He ended up stopping before the tube would come out. Liam's night regimen is pretty straightforward and simple as can be for a tube fed child.