17 years old!

Ricky with my mom tonight.

So here is my yearly "OMG Ricky is another year older" post.  This year he is 17 years old.  I am not sure just how that happened, but there it is.  He is now about 130 lb and a solid 6 feet tall, having grown a half a foot (at least) this year.  Not bad for a kid with cystic fibrosis!

Every year I refer back to these posts from 1995 (read from the bottom, up) about Ricky's birth and the days preceding it and following it.  Those days seem farther and farther away with each year, and yet I find it so hard to forget them.

Healthwise, Ricky is doing pretty well.  His lung function is the best it has been in many years (!).  He is fairly compliant with his treatments and medications.  His attendance in school is not fabulous, but he's doing what he can and always goes to school cheerfully.  Ricky still sees a number of specialists on a regular basis, and that's not going to change.  Issues recently have included reflux, necessitating a change of medication, and increased chronic sinusitis issues.  He had a sinus CT scan last week and we'll find out in late December what the verdict is on that.

He is very much into computers and video games, including the website ROBLOX and his Nintendo 3DS (faithfully hanging in its bag from his shoulders almost all the time!).  If you give him the chance he will tell you enthusiastically about these things and a few other fascinating, in his opinion, subjects.  :)

Onward to 18!

March for Babies

Becky and Ricky
Originally uploaded by Beckerbuns

This is a reboot of an old post, but as it talks about our NICU experience I wanted to share it... Since the March for Babies is coming up in a couple of months.

On the day after Thanksgiving, 1995, I was admitted to the hospital because my baby was not moving. Shortly after an abnormal ultrasound I was transferred to a hospital with a level 4 NICU and Ricky was born two days later, November 26, 1995, by cesarean section.

The baby (who had no name for several days, having surprised us by coming 7 weeks early) almost immediately had bowel surgery and then spent seven tumultuous weeks in the NICU.




About 10 days into his hospitalization, the genetic tests came back and we learned that our firstborn had cystic fibrosis. It was the beginning of our long journey.

Sixteen years ago it all began.

Won't you consider helping us to support March of Dimes by making a contribution via our walk page?

Home!

Ricky came home today.

It was a relatively short stay, at 10 days, but it had some tense moments.  Heck, tense days.   His tummy issues eased up after a few difficult days.  Then it was a matter of getting his lungs back into shape.  He was actually on oxygen all the way up until yesterday.  His PFT numbers were up only slightly from where they were at admission, but the decision was made to get him home and keep him on oral antibiotics.  He'll go back to the pulmonologist in a month, and will also see the LPCH gastroenterologist for the first time in a month.

I'm just so glad to have him home.

Back in the hospital

Ricky is in the hospital... He was admitted early on Wednesday after we spent Tuesday evening in the ER.  He's been sick since New Year's Eve, with a cold he never really kicked.  After finally having a 10 day course of antibiotics that still didn't improve things, I took him in.  The chest x-ray was so-so but his lungs sounded god-awful.  And so now he's in for the first time in 2-1/2 years.

His pulmonary function test on Wednesday showed his lung function down 10% from the previous clinic test.  So that precludes home IVs for now (you might recall that we did that in 2008).  If he can bring it up after a week, we might be able to finish up at home.

When he was first admitted, a culture of his port grew out something.  So they put him on IV Vancomycin for that and IV Bactrim for the lung infection.  A re-culture of the port (which is acting strangely... it likes to infuse but balks at blood drawback until he contorts into strange positions) showed nothing growing so the Vano was dc'd.

Today we started having some trouble.  First I got sick during the night with another one of my stomach episodes.  I was supposed to work but I ended up emailing in sick and took some meds to sleep it off.  At some point the resident doc who was looking after Ricky called to let me know that he hadn't pooped since he'd been in.  I had an inkling that something was up when someone came to take a KUB (belly x-ray) of Ricky when I was there with him Thursday morning.

A bit of background... The last few times Ricky has been in for lung infections, the major issue has ended up being bowel obstruction.  The hospital policy is to not let CF patients leave their rooms during inpatient stays, due to fear of cross-infection and fear of infecting immune compromised patients (such as chemo patients).  This means Ricky doesn't get to walk around like he would do if he were sick at home, and therefore the poop doesn't move on out.  The last year he was in the hospital, over two years ago, he spent weeks in the hospital past what he should have been, because of the poop issue.

So when he went in this time, I made sure the admitting docs knew that Ricky needed physical therapy to keep him moving around the room or whatever, and came prepared with a med list.  So, you know, he'd get his Miralax and stool softeners.  And yet, the admitting doctor ordered the meds as prn (as needed).  *headdesk*  So he went a full 36 hours without getting them and BAM... he's blocked up.  The KUB showed that the blockage this time is in his small intestine.  Meaning... He was fine and clear before he went in.

Sigh.

So I went up there today and got the "skinny" (ha ha) from the resident who was on.  She had mentioned on the phone that they wanted to put Ricky on Go-Lytely (nasty stuff, commonly used as prep for colonoscopies) but he was refusing to drink it so they wanted to put an NG tube down.  Ricky had apparently told the doc and the nurse that he would not take Miralax either, and he wouldn't do the magnesium citrate they had because it was lemon-lime, the nastiest of the nasty flavors.

The doc and I came to an agreement... Ricky would go on Miralax as long as I could sneak it into his shakes (Carnation Breakfast Essentials, which we brought with us).  The doctor obtained a whole day's worth for us so we could give him as much as possible.  I went out to Walgreens and got him the blue flavor of Gatorade, which he likes (and I could put Miralax in) and three bottles of the grape mag citrate, which he would drink.

Before I left the hospital tonight, Ricky drank a medium-sized bottle's worth of Gatorade, one entire bottle of mag citrate, and two shakes each with a one dose of Miralax.  When I left, he said he could feel things happening in his intestines.  No surprise there!  I go back tomorrow afternoon, and I'm going to spend the night.