RSV

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

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.

:)

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.

The dreaded...(warning: this is gross stuff)

So, ever since June 2, 2009 when I brought home a tiny baby boy with short bowel syndrome, we've been taking precautions to keep him healthy--lots of hand sanitizer for everyone, no daycare, limited outings during cold and flu season, no sick contacts, blah, blah, blah. We made it through all of the winter of 2009-2010 without much more than a common cold or two (which are more serious to Ryan since he gags and pukes from a runny nose and loses weight with every cold, but anyway). I thought we were doing well this year--then Nora woke up with a weird diaper on Saturday, and I had a feeling this was it. She got sicker over the weekend--a fever up to 103, one episode of vomiting, little to eat, tired, tired, tired. We did extra hand sanitizer, gave Ryan yogurt whenever he would let us, made sure they weren't sharing cups (I'm usually pretty relaxed about this since it's a battle I couldn't win anyway, since I can't keep track of whose cup is whose and since they can reach the table and the counter now anyway). Saturday and Sunday Ryan was fine...then this morning he ralphed all over the family room. repeatedly. and then some more. and then again.

Poor Ryan. I couldn't get him to eat a thing after his morning formula (which he promptly puked after drinking a nice, solid 8 ounces). He begged for a nap but wouldn't let me leave him alone. I am MAJOR softy for a sick child. I set Nora in her room for a nap, and then snuggled in with Ryan in bed and took a little nap with him for a while before transferring him to his crib.

During naptime, John came home early from work. Not feeling well--ugh. But he rallied and helped me steam clean the family room carpet (in reality he took over and excused me from the job altogether because I almost broke it twice) and get a few things in order while the sickies slept. Then he went to take a nap.

Nora woke up strangely cheerful--then proceeded to have about 5 diapers in the next 3 hours. She did eat and drink some, so that's an improvement.

Ryan woke up ravenous. He gulped down a whole sippy cup of water--YAY! fluid! Then he coughed a little, burped a little, looked at me concerned and said "mouf" and pointed in his mouth and proceeded to puke up every ounce of water he drank--and then some. But that did not deter him. He wanted crackers, crackers and more crackers--and then: barf. More water: barf. Poor Ryan ate and puked in a nasty GI-bug cycle from naptime to bedtime. I do think he may have held on to the last couple of sips he took. He got 3 baths today (should've had 4 but once I sniffed him after he threw up on himself and decided it wasn't that bad, I wiped him down, changed his clothes and declared him good as new--I was kind of exhausted, ok?) and had 5 clothing changes.

On the plus side, as a typical male, Ryan allowed me to pamper him more than usual while he was not feeling well. I got in more cuddles with him today than I do in a typical week. He fell asleep on me three times. I totally let him. I prayed for him more today than I have in a long time. And also, the best part: he knew to eat and drink--he was hungry and thirsty! this is a big deal! in the past he's struggled with an oral aversion and been in therapy to help him eat, etc and when he's gotten sick, he's stopped eating altogether even when it was just a common cold. This time, despite all the puking, he still wanted to eat. I'm taking that as a good sign that his body is telling him when he's hungry, when he's in need of water, etc.

On the minus side, he may have kept down 1-2 ounces of fluids today. max. If he pukes tomorrow, I will put a call in to his pediatric gastroenterologist and see what she thinks. We had a plan in place for when this would happen. 45 ml of fluid per hour via his G-tube. That would replace fluids lost through diarrhea. Problem. No real fluid loss through the diarrhea at this point. He cannot keep anything in his belly, his problem is vomiting---I'm not sure the gtube will save this. I'm going to try though tonight--way less than she said, maybe just 15ccs at a time, and see if he can make it through the night without barfing some more and take it from there.

He's still perky and happy. After I laid him in bed tonight he woke up when I brought Nora in to bed and he was jumping up and down in his crib as usual. He still has big tears, so he's still hydrated as far as I know. Tomorrow will tell.

If you made it this far, would you please pray with us that the vomiting would subside. Thanks! Hopefully my next post will be an update sharing how quickly he recovered from his first GI bug :)

Cookies and snow.

My ever thoughtful friend, Petra, made some awesome sugar cookies for Caitlin and sent them to her with sprinkles and homemade frosting ready to decorate. What fun! and YUM! We had a great time decorating with Eliza...

mmmm...then on to snow play

...which didn't last long. They were in and ready for hot chocolate within about 12 minutes. I'm thinking we've had plenty of sugar for the day....

Letter to Caitlin

My dear Caitlin,

OH MY--how you are just growing and learning and being hilarious and smart and loving. You have survived and thrived despite all that we, as a family, have gone through over the past 2 years. You have rolled with all these punches and I am amazed at the big girl that you are and the big sister that you are. Sometimes I look at you and think about how mature you are--and have to remind myself that you are only four (almost five, but not yet! I'm not quiiiiite ready for you to be five). You take showers by yourself, pick your clothes out and dress yourself every morning, will not accept help with zippers or shoe ties--tonight we went out to dinner and you asked to go to the bathroom by yourself (reader: do not worry, I still walked her in, no one was in there, no one else was in the restaurant either).

You have such a sweet heart. You are so quick to make me feel better if you sense I am sad--hugs, words of encouragement, snuggles, asking me if you can pray for me. You look out for the cats now. You look out for your brother and sister--sometimes too much--you are not quite big enough to pick them up, but that doesn't stop you.

You are such a girly girl. Where did you get that from???? You love sparkles and pink and glitter. You wonder how I can wear gray and black so often since they are "so boring." But at the same time, you do love to play hard! You especially love to rough house with your dad and your brother. Nearly every night after dinner you ask for either a pony ride from your dad...or you ask to wrestle.

You are smart! and fiesty! and hilarious! Tonight you tried to convince me that the music we were listening to (Florence + the Machine) was making you fart. Earlier today, you told Daddy where Russia was on a world map. You probably learned it at school? I love to pick you up from school on your school days--you run up to me and shout "mommy!!" and you are finally starting to tell me more about your day. Speaking of school....kindergarten is approaching. I have no doubt you will absolutely love it. I do dread the day that you are gone while I am home. I have had a profound realization recently that we have a finite number of days together--I am working harder on enjoying these moments with you. That mostly translates into your favorite activity: Art Projects together! You LOVE art of any type. You love to do art together or alone--you love to close yourself into your art room for hours--you make a new project for your dance teacher everyweek (I mostly forget to bring them to your dance class--sorry!). Your current favorite thing is cutting out characters from coloring book pages and then gluing them onto little wooden sticks and using them as puppets.

You are soaking up everything bible-related or Jesus-related--you tell us bible stories. You sing what you call "praise and worship" songs all the time--in the car, on the toilet, at bedtime. You are so excited about our Advent activities. You could not wait to get Christmas decorations and the tree up this year and have been so helpful with getting gifts wrapped and sent out.

We sing a song a church that goes "A thankful heart prepares the way for you, My God." This has really made me think. I've tried to really focus on a spirit of thanksgiving. Everynight when I tuck you into bed, I say 3 things that I'm thankful to God for (the mundane and the grand--the simple and the profound) and then I ask you to do the same. You usually express gratitude for your friends, your teachers, your family. But tonight I challenged you to thank God for 3 things that you've never thanked Him for before. Your response was "hmmmm....I have to think wisely....I'm thankful for my picture frames. I'm thankful for my stuffed animals. I'm thankful for the whole wide world."

Thank you for keeping me grateful and for bringing such a vibrancy to our lives.

Love you,

mom

Who's the adult here?

Last night I was trying to herd the kids upward to bed when Caitlin asked me about having some candy. I told her she could have a piece tomorrow because she'd already brushed her teeth. Then we got everyone in to bed and tucked in and I snuck downstairs for a few mini peanut butter cups. I parked in my bedroom to indulge in my reward while going through the Sunday paper's ads. After ripping off the shiny metallic wrapper and popping one in my mouth, my bedroom door was opened. Caitlin was coming in to let me know she was just up to go potty again and began walking toward me to give me a big hug. I set the paper down on top of the evidence and turned toward the hug she was offering. We had a short little chat. After a hug, she was off for the potty. As she got to the door she turned around and said, " Mommy?" "yes?" "I know you are having candy right now." And she turned away and went about her business and then back to bed.