Wednesday, February 23, 2011


Sunday Feb 13th I took Nora to Urgent Care--hoping to get someone to listen to her chest and look in her ear. She had been sickish for 2 weeks or so and spiked a fever the night before and got into a major coughing fit which made her puke in her crib. So I figured I'd take her in and get her checked out so that I didn't have to take the day off work (again) on Monday to do it.

We waited hours. They put the pulse oximeter on her and it read 91-92%. Hmmmm--doctor thought---she doesn't look like she's 92%---she's too pink---she's too happy---she's too playful. Let's get another pulse oximeter in here, that one must be wrong. Oh, hhmmmm, 91% again...maybe my technique is bad...get a nurse in here....another pulse oximeter....another nurse.
In all 4 separate people checked her pulse ox with 4 separate pulse oximeters. All 90-92%. Not good enough. She bought herself a chest xray and an ambulance ride to the ER. I had to sign her out "against medical advice" in order to spare an unnecessary medical expense of an ambulance ride. I drove her over to the ER myself where she was started on oxygen, iv fluids (which she didn't need), got an influenza swab and an RSV rinse. Oh, and at least an overnight stay until she could pick up her oxygen levels. The RSV was positive. Diagnosis: RSV Bronchiolitis. Probably because she's a preemie. Most 2 year olds would not be hospitalized for RSV.

She was on and off oxygen for the duration of her hospitalization. She was back to her normal self by about Tuesday, but just could not keep her pulse ox up to a reasonable level. And also, for the record, I was right--she had an ear infection--it just wasn't obvious until Tuesday. And also, Nana came and saved the week, as usual.

Typical Nora glare. As long as she is still giving dirty looks, I know she is just fine.

Meanwhile, Ryan was at home with John and Caitlin. I was getting reports that he was looking for Nora, asking for mama. He was sick, probably RSV, but was oxygenating well on Tuesday when John took him to the doc just to be sure. But, by Friday, he was very ill appearing. Our nanny called me and said she thought he wasn't right, she wasn't comfortable with the way his cough sounded all of a sudden. I thought I would come home and take him back to get check out at the pediatrician.

When I got home, he was napping--I watched him for a minute--he was breathing like 60 breaths per minute while resting, so I got him up and threw him in the car. At the doc's his pulse ox was 89-91%. Great. To the ER we went. Chest Xray showed multiple areas of pneumonia. Likely secondary to RSV. Oxygen, albuterol, ceftriaxone. Admission. Also, an ear infection.

Mercifully, they were able to get Nora and Ryan in the same room. So, while Nana stayed home with Caitlin who was such a trooper, the other 4 of us camped out at the hospital for the weekend. Ryan perked up by Saturday and was off his oxygen by Sunday.

Caitlin was reunited on Sunday after spending the night with some dear friends. Sunday also happened to be Ryan and Nora's birthday, so we spent that in the hospital.

Thanks, Botts!

Both kids were discharged Monday and transitioned to oral antibiotics. Nora after 8 days. Ryan after 3 days. Mom and Dad's diagnosis: exhaustion.

Happy 2nd Birthday, my loves. I love you both to pieces and am so glad you are on the mend. Please stay well. XOXO

Tuesday, February 22, 2011

Of course

After not seeing Caitlin for days while the babies were in the hospital (more on that soon), I got a chance to spend an hour with her on Sunday night. After talking to her on the phone, I knew she missed me--she had said she wanted to snuggle, for me to tuck her in, she said she missed me tons--I figured she was missing all the softness and cuddles that only a mama can provide.

So when I got home, I figured I'd ask her how she wanted to spend our time together. Our conversation went like this:

Me: So, Caitlin, I've been gone most of the week. When you feel sad and you miss me when I'm at the hospital, what are some of the things you wish we could do together?
Caitlin: ummmm.....crabwalk.

So, we had crabwalk races.

Wednesday, February 9, 2011

The aftermath

The reason I am posting all of this is just in case there is another mother of a child with short bowel syndrome experiencing gastroenteritis, post infectious diarrhea, dehydration and is frantically googling all of those terms together. Hopefully she will end up here and find a few resources. Anyway....

I was holding off on updating. Kind of waiting for some great news. I really thought he would miraculously pull through the GI bug kind of like he's miraculously pulled through many other obstacles in the past. But this was rough. Rough, Rough, Rough. For all of us.

My initial post was on a Monday night. When Ryan woke up on Tuesday he was just barely himself. He wouldn't let me put him down. He took sips of water on and off all day and I held him in my arms for the entire day. He got a fever up to 102 (Just like Nora had the 2 days before) and he did ask for banana and attempted to perk up once or twice but was just so weak. He wouldn't hold his head up or even sit up. Thankfully, the vomiting had stopped. Caitlin reminded me that I should be thankful for the opportunity to hold my usually-busy little boy all day. I guess that was the silver lining. We started giving pedialyte through his gtube as we had been instructed by his GI doc. The diarrhea set in. nuff said.

Wednesday I went to work and John stayed home. I checked in throughout the day and Ryan was eating a bit of crackers and taking sips of water. But he was still VERY lethargic. I got a call at 3pm at work and John said he was genuinely worried about Ryan not being very responsive. I asked if he thought I could finish the workday. He said no--so I knew he was truly worried. I tied up some things and left without too much delay and went straight home, grabbed Ryan and left for the ER.

Long story short, he was not severely dehydrated, but was a bit dehydrated. And he was VERY cranky. The ER doc says "I don't want you to leave here until he starts to act happy." Yeah, right, it's well past bedtime and he has diarrhea, a diaper rash and a fever. They helped us with a new plan for administering pedialyte in a nearly continuous fashion rather than a bunch at once each hour. At about 10:30pm Ryan started organizing the little 2 oz bottles of pedialyte and the doc happened to notice and said she felt comfortable with us going home. Exhale. No iv's, so that was really a miracle. We had some dear friends praying through that piece and I truly felt that unexpected peace that surpasses all understanding. Thanks, God.

AFter a bumpy couple more days, Ryan's appetite picked way up and he got happier. The pooping slowed down though the watery diarrhea was still present. He started drinking his formula again.
And then Nora threw up in the middle of the night about 4 days later and started up with diarrhea again. Hello, GI bug #2.

I almost lost my mind.

Then, of course, Ryan started in with frequent diarrhea again before he truly had a chance to recover. But the second one only lasted about 12 hours. It was just diarrhea, no fever, no change in appetite, no vomiting. We can do this! 2 GI bugs in 2 weeks.

So that was short and then he started perking up again. During the recovery, the biggest problem was that the diarrhea never went away totally. The frequency decreased to 3-4 diapers a day, but each time, he was soaked from shirt collar to socks. He'd lost 1.5 pounds and diapers were loose fitting, so we started stuffing the diapers with toilet paper in an effort to soak up the watery parts--Daddy gets the credit on that idea. That worked a little, but we were still doing 3-4 baths per day, crib changes at night, 3-4 outfits changes, sanitary loads in my washing machine. For 3 weeks. THREE! WEEKS! I was on the edge of sanity again. But, BUT, he was gaining weight--like an ounce a day back from when he was the sickest, he was happy, he was playing like his regular self. He was thirsty, hungry--had never eaten this well before.

I called our GI rehab clinic to see what the heck we could do about this diarrhea. We increased the cholestyramine up to the max dose and there was no change. We called back and we were told he is probably still sick (no, he wasn't). Or he could have small intestinal bacterial overgrowth (had no other symptoms except diarrhea, but has a lot of risk factors). They said keep letting him drink as much water as he wants. They thought we should check labs to make sure he wasn't dehydrated. I declined that b/c if you looked at the kid, you would know--he is not dehydrated, and I will not stick him with a needle to tell me that. Now, if there was a blood test they could do that would tell us what the heck was the problem with his stooling after the GI bug, that I would get! So I did some research and figured out what it was: Post-infectious diarrhea. That is my diagnosis. Ahem. :)

But what to do about the stooling? Well, besides not leaving the house and doing lots of laundry and losing lots of sleep--we did lots of research. Turns out there's not a whole lot of information out there in the medical literature for diarrhea associated with pediatric short bowel syndrome. We looked into the idea the GI doc had about bacterial overgrowth and we decided that we didn't want to get into it with the antibiotics unless we were all sure of the likelihood of that diagnosis. Even our wonderful GI doc was like "I'll start him on flagyl if you want." no thanks. We do not want.

So, what to do when medical literature is lacking? Read blogs! The short gut community is full of crazy parents like us who are scrambling to figure out something, anything to help them get to "normal." whatever that is--I can't even remember anymore.

Now, after 3 weeks of this, we tried our first approach: substituting oral rehydration solutions (like pedialyte or my wonderful homemade version from the WHO) for water. The thought is that since he has barely any colon, he was overdrinking water when he was thirsty--not able to absorb it, which is one of the colon's main funcitons. The ORS are more absorbable than water (osmolarity! chemistry!). Ryan is not really a huge fan of this stuff, but as long as it's icy cold, he'll drink it.
One day into this and we are back to 1-2 normal (for Ryan) poops per day! Amazing! He is back to his usual antics.

To celebrate, I did not even do laundry yesterday!!!!!!!!!!

We've also initiated probiotics and have a few other tricks up our sleeves that we can pull if needed--there are some reports that metamucil is helpful. another option might be prebiotics. So, we'll explore those once things calm down.

Thank you to The Short Gut News and Thriverx's amazing hydration module for pointing us in the right direction. I'm going to start getting more involved in the SBS community--these patients and parents are full of amazing experiences and information that is really difficult to find.