And We're Back...

Just when we thought we were in the clear to unpack our hospital bags and settle into our new routine with the g-tube and pump, Matthew decided to throw us a new curve ball...

He pulled out his own g-tube.

Yesterday morning I hooked him up for his morning feeding and he began screaming hysterically. I paused the feed, vented him, gave him gas drops and it seemed to do the trick. Until I restarted the feed, then the tears started all over again.

We had an appointment to see his new gastroenterologist to follow up on the Nissen, g-tube placement and to see how he was doing on erythromycin for gastroparesis. I called and rescheduled because of his behavior wouldn't let me travel with him safely due to possible seizures.

I continued getting him ready to leave for our now later appointment and started to clean his g-tube site and change his gauze when I saw this:

I may be a newbie to this whole feeding tube thing, but I do know enough to know that it shouldn't look like that.

I called the nurse back to see whether or not to bring him in or go to the ER.  She advised to stop feeds and come in so the doctor could assess and then send us to the ER.  As soon as I showed the doctor the picture and he saw that the tube itself was not able to be manipulated, he sent us over to the radiology department at the hospital and had the pediatric surgery department that did Matt's initial surgery meet us there.

Radiology results were inconclusive, but when dye was injected into the feeding tube Matt began to scream again and his abdomen began to swell again. The surgeon consulted with the gastro team again and decided the next step would be a sedated endoscopy with both teams present to fix anything they found.

The procedure took about an hour, most of it involving sedating Matt. Sure enough, the endoscopy showed that Matt had pulled his tube hard enough to disconnect it. The surgeon jumped in to take out the bad tube and lucky for us, he was able to place a new tube in the same site as the previous tube with no further surgery needed. Thank God we caught it early, it could have turned into peritonitis and been fatal.

So, that all happened Monday afternoon and night. We have spent the past three days getting his feed schedule back to normal, treating pain from the procedure, and fighting off a tube site infection with antibiotics. With any luck, we will get sprung tomorrow.

Life with our sweet boy is anything, but dull!

Long Time, No Post

It has been over 2 months since my last post here. I've missed writing and hope that you've missed checking in on our little family.

I had all kinds of posts planned and in my drafts folder-- a Mother's Day post, a Father's Day post, a post about a rare and amazing date night for me and the hubby, posts about Matthew's amazing new school and his last day of school. All of those will come eventually, we've been busy lately.

About a month ago, Matthew began gagging and retching when it came to eating and drinking. Then the vomit would come. It would happen with solid food, with bottles of Keto eggnog, and even when we would touch empty spoons to his lips. After the retching and vomiting he would be all smiles and like nothing was bothering him.

 That was the start of our latest little adventure. One month that equalled 4 trips to the ER, 2 hospital admissions, firing our long-time Gastrointerologist and hiring a new one during a hospital admission, an NG tube, a pH probe, multiple x-rays, and my little guy being stuck at least 12 times for IVs. And another crappy part for me particularly was having to see the smug staff pediatrician who told me when Matthew was 6 months old that all of this was going to happen and that he would need assistance with feeding as he got older because "all kids with his kind of issues do."


The pH probe showed severe levels of acid reflux that his Prevacid wasn't even coming close to touching. Also when filling out his probe journal, Matthew's nurse suggested that I include all of the times he would have an episode of Infantile Spasms. Turns out those episodes were occurring exactly when his acid levels were the highest. The diet is controlling his seizures, now we may have an answer about the spasms.

And now here we are, 2 weeks status post a laproscopic Nissen Fundoplication and g-tube placement. I worked so hard with Matthew to keep us from getting to this point: working with a speech therapist and an occupational therapist on feeding, trying new textures, using a Nuk brush to get him to practice biting down. I so badly wanted to prove that smug doctor wrong.

 Even though he is feeling so much better now that his acid issues are resolved, part of me still feels like I failed him because I didn't work hard enough with him to keep him from needing the g-tube. Silly I know, because I know that a child needing a g-tube isn't a failure and that moms aren't failures because their kid needs one, it's just something in my head. Us moms have the bad habit of always blaming ourselves and saying we should have done more.

We just got home from the hospital on Monday. He actually was released from the hospital last Tuesday, but we were readmitted the very next afternoon due to gastroparesis and c diff. It has been a very long two weeks being in the hospital and an even longer month seeing your baby in pain. Now we are fighting insurance and dealing with home health companies to get supplies delivered and learning how to live life with a g-tube and a feeding pump.

For all of our readers who are still here, thanks for hanging in with us. If any of you are parents of Tubie kiddos, any helpful hints or product recommendations for a rookie mom?