Blog

To read about Gage's story from the beginning you may visit http://gagejohnsonisafighter.weebly.com where mommy blogs.

Getting Sick Perhaps

Gage is scheduled to check back in to Rady Children's Hospital this upcoming Wednesday. He's going to be getting his G-Tube put in. The surgeon is also going to perform a procedure known as Fundoplication where they wrap the upper portion of his stomach around the end of the esophagus. The goal is to prevent Gage from vomiting as much as he does and help reduce the problems caused be his reflux.

We're worried that if Gage gets any sicker, he'll have to be at the hospital longer than the one week that was scheduled. On the plus side, at least he'll already be in the hospital in the event that he does get worse. Right now he's got a little bit of a runny nose. The nasal congestion seems to be much less than last week however, his cough and throat seems much worse. It's that kind of cough that you know must be painful.

Still, he's as happy as can be most of the day!

An ER Night

Gage was back at the ER last night for another NG Tube placement.  We all went out as a family for Taco Tuesday's and in the 20 minute card ride there, his tube managed to back out. We didn't really notice until we began eating because it was still stuck to his face close to his nostril.

He was a few hours late on his evening meds since he had no way to take them until his NG Tube could get put back in. By the time Kristy got home it was after midnight. He's sleeping good tonight though, that's for sure. We've been told that he's on the surgery schedule to get his G-Tube soon. Kristy and Gage meet with the surgeon tomorrow.

Eight Months Old

Gage turned eight months old on the 3rd. He's still having trouble keeping his feeds down. He just pulled out his NG Tube this morning so mommy took him to the ER to have it placed back in again. Gage won't take his meds without it, so it's pretty important to get it back in as soon as possible. His upper gastrointestinal x-ray looked good apparently and he's still scheduled to get the G Tube placed sometime in the next week or two.

He was vomiting much more last week. There were some days where he only kept a couple of feeds down. This weekend the doctor had us try continuous feeding to try and reduce the chance of a vomiting and losing the nutrients. He basically feeds all day continuously and at a pace that is slow enough to prevent him from having a full stomach. This means he's pretty much glued to his IV pole now.

He seems to be doing better on continuous feeds though. He only up-chucked once in the last 48 hours roughly. He also seems to be less uncomfortable which means more smiles! I added a few photos to the Photography section. I'll have more on the way. I'd like to try adding a video clip as well. Stay tuned!

Hanging in There

Mr. Gage continues to do well at home overall. He's only ripped out his NG tube one more time since the last post. His reflux has been the biggest problem so far. He spits up nearly twice a day and it's got us worried that he may not be getting enough calories or electrolytes. He's just so sensitive when he's feeding or has a full stomach. Lay him down and he hurls. Sit him up right and he's sure to spill everything. We took him to the hospital on Saturday for some lab work so that they could determine whether he was deficient on anything.

The visit lasted three hours and Gage was poked six different times with no success drawing the amount of blood needed to complete the tests. It wore him out and he didn't act like himself for the rest of the afternoon. We always try to give a heads up that Gage is a "tough stick." It seems nearly impossible to draw blood from the hands or feet. Anyone new to Gage that try's, seems to think they have the magic touch. Unfortunately Gage proves them wrong. An hour of needles poking around in his veins is torture enough for us all.

Gage is currently on a halter monitor since the last time apparently didn't return good data. He's scheduled for a swallow study some time in the near future and we're expecting the switch from his NG tube to the G tube. I hate the thought of another surgical procedure so soon after being home but I think it's time for his nose and throat to take a break from the NG tube. Maybe he'll be more inclined to oral feeds again.

The photos above were taken when Gage went back on 1/15 to have his NJ tube placed again.

 

 

Home Sweet Home

Mr. Gage is finally home. He and Kristy got back last Wednesday evening and just in time for big brother Gavin's birthday.  Since Gage has been home, he's been his super happy self as usual. He managed to pull out his feeding tube (NG Tube) twice so far requiring a rush trip to the hospital both times.

Without his feeding tube, he'd get no nourishment since he still isn't taking a bottle and doesn't like being spoon fed either. Without his tube, he'd also get fed up with his oral medication very quickly. In only one day we manage to administer about 19 different doses of medication. We go through syringes like they're paper towels.

I can't imagine him making it a full day on his med schedule without that NG tube. Giving meds by mouth is extremely difficult to do and ensure that Gage takes the full dose without spitting any out. Especially when most of them don't taste like candy. Still, we hate seeing that tube stuck to his cheek and can't wait until we get to go back to normal feeds.

Mommy does an incredible job of keeping up full-time with Gage's hectic schedule. He just started teething too which makes him fussy especially in the evening. All things combined make for very little sleep time in our home. Worth it though to have Gage back.

We're continuing to try and get Gage to drink from a bottle or eat baby food from a spoon but he's definitely stubborn. Ironically though, he'll stare you down while you're eating a meal as if by some chance he might telepathically redirect the food into his mouth.

My apologies for the delay on this post. Free time is very rare.