2 Month Journey

So.... Life's been a bit crazy. We went through 2 months of Liam being in pain caused by his feeding tube. GI thought it was just irritated, then changed her mind and thought it was an inner infection. We did a topical antibiotic cream for a week that did nothing.

(Image is of Liam fast asleep on my lap after crying himself to sleep from the pain)

Then Liam went on a 10 course of one antibiotic that even fights MERSA "just to be safe". That did nothing. 

Then we tried a second antibiotic (Clendimiacyn) for a 10 day course. That didn't nothing. For two months he just kept getting worse and worse. Crying constantly in pain. 

Finally they scheduled him for an ENDO so check and see what was going on, with a biopsy and possible relocation. This was last Friday (Feb 27th). We were sure his tube was just going to have to be relocated. 

All I really knew for sure was that my baby boy wasn't getting all the calories he needed and was loosing weight rapidly. I cried with him because I had done all I could to help him. I even tried numbing his stoma with lidocaine to no avail. 

(Image is of Liam playing with a balloon I devised to distract him from the pain. He's wear size 12 month shorts and they're barely holding on. You can also see his ribs and hipbone) 

(Image is of Liam with the kind nurse who was wheeling him to OR. She taught him to say beep beep to everyone all the way down the hall. Everyone was in a for of laughter as he passed)

We discovered a lot from the ENDO. Turns out Liam's stomach lining had grown almost completely over his feeding tube causing an occlusion. Basically there was just the tiniest of a hole allowing formula to go through. This was why the feeding pump wouldn't work. This also caused his tube to be pushed into his stomach lining creating very painful pressure sores. 

(Image is a scope shot of the inside of Liam's stomach where the stomach tissue had grown over his feeding tube all bit that one tiny hole)

His GI cut away the tissue that was creating the blockage and cartilized the area to hopefully prevent this from happening again. When he came out of the operating room and told me this and gave me the pictures, I was shocked. But I was also please that this was not only an "easy" fix (nothing is ever really easy when it comes to Liam) but it was fixed and my baby boy would no longer be in pain. 

(Image is a scope shot of after the GI cut away the extra tissue that had grown over the feeding tube)

In true Liam fashion, he came out of anesthesia rocking it and shocking everyone. 

 

(Image is of Liam being wheeled into recovery with the nurses flocking behind him like moths to a flame. Everyone just loves him) 

No one ever expect anyone to come out of anesthesia alert, happy and ready to eat so when Liam is just that, it baffles everyone. 

(Image is of Liam drinking his apple juice to prove he can keep it down. He also ate all his Grahm crackers and asked for more)

They said if he held down the juice and crackers he could go home. Well it was a no brainer because Liam always handles good fine. In fact he always comes out of it starving. They said to take it easy on his stomach but like always, Liam wanted French fries about 20 minutes after we left lol. 

(Image is of Liam giving two nurses high fives while all were wearing gloves. He thought he was awesome)

After 20 min in recovery, Liam was discharged. The nurses tried so hard to talk him into staying with them but Liam said he was ready to go. 

Since surgery, Liam hasn't eaten much by mouth. I've been keeping up with his daily bolus feeds to help catch up on the weight he lost. He's been able to be on a feeding pump for 12 hours a night so far though and that hasn't happened in months! He's also been on oxygen 3 out of 4 nights since surgery. 

(Image is of Liam just relaxing as he gets a bolus tube feed) 

Now that the pain is gone, I've got my happy little boy back. In fact his like a new kid. He's onry and back to "causing trouble" and being Liam. Finally I get to hear him laugh at the world as if everything is funny again. I LOVE IT!! 

(Image is of Liam taken tonight with his arm raises so I can see that sister drew on his armpits with blue marker. Yes both pits! Why? Because she wanted him to "look funny". Well it worked lol)