Friday, February 04, 2011

Expect the Unexpected

"Who of you by worrying can add a single hour to his life?...Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own..." (from Matthew 6)


Wow. I am hoping that the weekend really does mean we can relax a little. Because every time we've tried to this week...the rug got pulled out. How quickly plans can change...

Here are the highlights...

Wednesday about lunchtime Mason was in the middle of eating when he started crying, and turned into REALLY inconsolably crying for the next 2.5 hrs. He had no fever, he didn't seem sick...but absolutely seemed like something was hurting, and bad. Being completely out of character for him we figured better be safe than sorry so Brian rushed home and we headed to the ER. The roads were bad but passable. Long story short, seven hours, a ton of docs, two x-rays and an ultrasound later, at around 10 pm or so we were relieved to hear that the biggest fears had been ruled out...intestinal blockage or intussusception being the biggest (where the small bowel gets telescoped into the large). They think he may've actually had an intussusception at home but possibly self-reduced it at the hospital since he did not have it anymore on the test but had the "classic" clinical presentation when he arrived. They gave us the option of admitting him because it is standard for intussuception follow up and because Mason was still not happy at the time we left but admission would involve an automatic IV and we figured if the most dangerous things had been ruled out at least for the time, we'd just watch him over night and bring him back if needed. If not any of the original ideas, they thought the biggest possibility was that he had gas-bloat syndrome (due to inability to burp from his fundo) causing so much pain. They said his ultrasound did show lots of air pockets. After he finally was able to eat that night, we headed home...and in the car Mason returned to his happy little self and slept all night uneventfully :) But we heard lots of coughs and fluid coming up into his throat as he slept so we wondered if maybe his fundo was letting too much reflux through and maybe that had caused his pain?

The next morning (my birthday), Cardinal Glennon called to follow up and said they wanted him to come back again (groan....but I'm glad it was just a visit and not an admission!!) so they could do one more test, and upper GI to check the position of the G-tube to make sure milk wasn't flowing into the wrong place, and to make sure the fundo was still intact. So...back downtown, and we did that test which showed no problems (yay! but still no answers on his pain). Then the GI nurse cut away yet another stitch that his G-tube had spit out at us (#3 so far); and wanted us to stop using steroid cream on it for his granulation since it was probably the stitch causing the irritated tissue and maybe now will go away on its own. Then they said nursery follow up wanted to see him down to registration for that and another hour later we were finally on our way home from that, again relieved that all seemed well.

Fast forward to 4 am Friday morning. Time to get ready for Mason's next feed. Brian got up and discovered that Mason's bed was sopping wet. "Not again..." We feared that his extension had popped out (that kept happening with the non-Mickey extensions we'd been given this month by the medical supply, and entire feeds of milk had spilled on several occasions already). I got up to help and when I checked the extender to see if it was disconnected, one of my biggest fears came true: there was his stoma (the hole that leads into his stomach) staring at me, no button anywhere! It had come out completely. It was still hooked to the extension line laying on the bed, and milk had soaked through

Now..normally we could deal with this...we would just pop it back in and reinflate the balloon and restart his feeding. But this was different. When I checked it, the balloon had completely ruptured. Re-using it was not an option. The only backup button on hand was the old one that we had removed a few weeks ago due to it being broken (valve was stuck open so formula leaked everywhere from it). I poured some soda in it and apple juice to try to clean it up enough to function and try to get it into him. But the worst part of this whole situation was TIME...

From everything we could gather in our semi-conscious state (although having a tube out at 4 am will wake up even the bleariest-eyed sleeper!) we figured it was probably at least 4 hours had passed since the tube had come out, and likely even more, judging by the amount of milk that had drenched the bed (his entire 12:30 feeding that clearly did not make it into his stomach) and that it was almost 4:20 when we discovered it. The surgeons had warned us that if this ever happened, time was of the essence, because the stoma can start healing in as little as 2 hours...a healed stoma that won't allow the tube back in means one thing: REPEAT SURGERY....

While it takes me a while to explain all this, it all hit me like a ton of bricks upon seeing that tube out that WAY too much time had passed and we HAD HAD HAD to get it back in RIGHT NOW...because it would take another 45 minutes or more to get down to the hospital and by then the hole would surely be closed....we got the backup tube lubed up and .. of course it would NOT go in :( I tried several times (and this was nothing like the other times I put one in ... it would not budge; then Brian tried...all we were succeeding in doing was making him bleed and making him this point I was a mess. To think that we hadn't noticed something as important as this, and that it could make him have to have a totally preventable major surgery...forget about composure. I was beyond tears, I could hardly think about anything but GO GO GO, we have to move, or else it is another surgery, more pain drugs, more seizures, more time lost to recovery...yeah. It wasn't pretty :( Sometimes the spiritual reminders are a little quieter than I need them to be, more like whispers than the fears trying to snow you, and I wasn't able to hear very clearly that morning...

But believe me I prayed all the way to the hospital...please please please Lord hold open that little boy's tummy hole with Your finger!! Don't let it close!! Don't let him have to suffer because his mommy didn't catch this problem in time!!

When we got there the nurse tried to put a catheter in to hold the place open and could not get it. :( Mason was screaming about it but she was getting nowhere.

I was about to be sick to my stomach.

She tried again, a smaller tube...and it went in!! THANK YOU THANK YOU LORD!! That was the most amazing answer to prayer...I was more relieved than you can imagine. But she said they would still have to try to get his original size tube back in, which would mean dilating the stoma...(fancy term for jiggling the stoma to stretch it out to fit). Mason was not a happy camper to have his already-tender tummy messed with, but I was one happy mommy that the hole had not sealed up totally, even after that many hours had passed!! The doc was able to switch out the foley tube to Mason's old button and gave us a new backup ... along with some foley tubes of a smaller size so if this incident repeats itself we have another weapon at home to try. We fed him to try it out, and it went very smoothly, so they gave us our discharge papers.

As we are packing up to leave, the doc comes back in..."Change of plans, sorry, now we have to send you to x ray to be sure it's in the right place."

Seriously? He just ate an entire meal...wouldn't he have been in distress or wouldn't we see some puffiness or something if it was wrong? We really didn't want to do another x ray after all he's had, even this week...especially not an unneccesarry one. "Clinically everything looks great, it's just in light of all the issues he's had this week." took some doing but we got out of it...hopefully they don't think we're trouble parents or something for going against doc's recommendations but he has continued to do great with feedings all day, and we thought that x ray would've been overkill.

So...WHEW. Between that and Micah having a fit of hysteria this week over a tummy ache that I thought would land us in the ER too (and of all things ended up in him needing to PEE for like 20 minutes because he doesn't remember to go when he needs to!!!) I'm sure I have truly earned a nice white head of hair for my birthday lol :)

So thankful God went before us and gave me sanity (just enough!) to survive this craziness and that He kept Mason safe through it all. As you can see he is no worse for wear after all these adventures...

and neither is his big brother, who despite quite a bit of emotional upheaval this week, is just as happy as can be about sporting a new haircut :)
Hopefully the weekend will bring some much-needed zzzs. But I guess I better sleep with my sneakers on, just in case...

Mason's Mix

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