Mommy Medical Update

I've been procrastinating on updating because to update on my medical well being, I have to think about my medical well being. That's something I don't want to do. But here it is...

April 2nd was my last appointment with the neurologist. 

-my bloodwork came back clean. I didn't have heavy metal poisoning. 

-the MRI of my brain showed I had a healthy "beautiful" brain. 

-He did an EMG to test my nerves and it showed that my nerves were fine. Whatever's causing the numbness and tingling has nothing to do with my nerves. 

Basically he found nothing neurologically wrong with me and is unable to treat me or continue to see me. How can my nervous system be effected yet not be effected. It's very frustrating. 

Today I went to the cardiologist and have a ECO done of my heart. All EKGs I've had in the past showed nothing wrong but because this problem continued everyone felt I needed an ECO. I didn't get the results of the ECO. I didn't even see the doctor today. A nurse hooked me into a heart monitor that I am wearing until tomorrow. Then I'll go and have it taken off. Again I don't think I'll get any results. 

I doubt they'll find anything wrong because that's the story of my life, or my "illness". They never figure out what's wrong with me. There's no reason why I should be in constant pain or have constant headaches or fatigue, but I do. 

And it sucks!

I've been suffering from dizzy spells and vertigo lately. Today there's been a lot of dizziness. I can't seem to shake it. I jus want it all to go away. 

On the plus side, Liam went to my appointment with me and he behaved. He was quiet in the waiting room (which by the way was akward because I was the youngest patient there and everyone kept giving my weird looks. I had to just avoid looking at anyone because they wouldn't stop staring). 

I was also able to spread CDH awareness to several of the staff members. The ECO tech was curios why Liam was so curios about the machine and why he climbed up on the table, rubbed my belly and kept saying "it ok mommy. Your ok" over and over. I explained his medical history and how he was just so used to all the procedures. I almost started crying because my baby boy was making sure I knew he was there for me just like I had done a million times over for him. That's was a sign I was doing things right. 

The nurse who put the monitor on me fell in love with Liam. She asked him for a hug and then picked him up in a hug. All of a sudden a weird look crossed her face and she asked how old he was. Hearing that he was almost 4 years old she commented on how light weight he was. That opened the window to explain why. After hearing he was failure to thrive and had a feeding tube she asked if he could have some candy. I laughed and explained he could eat whatever he wanted so she loaded him up with a sucker, Reece's fast break and a lindor truffle. Liam thought he hit the jackpot and laid on the puppy dog dreamy eyes and a huge smile on her. It was adorable. 

But the best moment of the whole day was Liam telling me "it ok mommy. Your ok". ❤️❤️❤️

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.

Turning Of The Tides

We may be getting our hopes up here BUT we think we are at a crossroads here with Liam and oral eating. It's a turning of the tides. A huge step. 

Liam hasn't been tolerating his continuos for about a week now. I've tried lowering the calorie content and lowering the rate and it hasn't worked. He wakes up screaming in pain and this continues until I stop the feed. After the feed stops he sleeps without waking up at all. 

I tried Milk of magnesia in hopes that it would calm his stomach but it did nothing. I tried Motrin for pain but it only did so much. 

The last couple of days Liam has been making up the calories by eating them! Yes folks I said EATING!! 

So Liam hasn't been gaining it loosing any weight on his formula feeds. I am extremely curious to see if he gains weight eating. I've been packing his food full of calories where I can. Let me share with you what Liam ate yesterday:

(Pic from Saturdays breakfast because I could find Sundays breakfast pic. Sat breakfast was home style hashbrowns eggs and biscuits and gravy)

Sundays breakfast was eggs, sausage, pancakes and syrup. 

When I make his scrambles eggs I add lots of butter. Same for the potatoes. It adds extra calories where I need it to be added and I noticed he eats more when I use lots of butter. 

For snack he ate an entire package of fruit snacks. That's 80 calories in that one sitting. I discovered strapping him I to the high chair he was more. 

Before dinner he wanted apple suace. He ate all this apple suace and a few peices of cereal. 

For dinner we went to Casa Grande. Liam ate lots of chips. I know I gave him 5 and I'm sure his uncle, aunt, grandma, papa, and cousins gave him more. He also ate a French fry, the cheese off 4 tacos (everyone is always more than willing to share their food with him knowing he needs to eat), some taco meat and a few bites of beans. He also tried cutting his meat and cheese. It was the first time he held a knife and I was shocked he knew what to do with it. 

After dinner we had desert at basken Robbins. I shared my ice cream with him. It was called tax crunch and had lots of chocolate in it. He ate 15 half spoon fulls. Every time he asked for more I was more than willing to oblige. 

As you can see yesterday Liam ate ALOT.  I am so proud of him and am praying and hoping that he has gained weight eating and that maybe we can start discussing what to do next with his GI. I know it's always 1 step forward and 2 steps back but still just watching Liam eat brings me joy. 

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