Upon reflection...

It has been a while since I posted to this blog.  I need to go back and post updates from his two hospitalizations this year.

The good news is that Ricky has been doing pretty well.  He went to live with my mom at the end of November of last year.  He has continued to be very compliant with his medications and treatments.  He switched to the school near my mom's house and the program there has been amazing and wonderful for him, including a summer where he attended more school and participated in a workability program where he learned job skills.

Last week I took Ricky for his senior pictures, and today I took him to pick up his schedule for school.  It hit me.  His senior year.  He's a senior in high school!

When Ricky was born, the average life expectancy for people with CF was 26.  It's now late 30s.  Had Ricky had been born in the 80s, chances are he would have died by now.  So for me, seeing him entering his senior year and reaching his 18th birthday is monumental.

While we still have eight (at last count) specialists to see on a regular basis, an IEP a half inch thick, and a hospitalization at least once a year, I consider us incredibly lucky.  There are parents out there who have recently lost their children around Ricky's age or younger to cystic fibrosis, even in this time of medical advancement.  My heart is heavy every time I hear about another child or adult lost to CF.  In time this battle for a cure will be won.  I hope it is in time to save Ricky and others whose parents and families and friends are fighting to keep them alive.

And on that sobering note, here's my boy in his ASB card picture, taken today.  By the way, as of today's visit to the kidney doctor, he is 6' and 167 pounds.  Not bad for a scrawny 33 week premie, eh?

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.

an odd ultrasound

Ricky having his ultrasound
Originally uploaded by Beckerbuns

For quite a while now, Ricky's gastroenterologist has wanted him to have an abdominal ultrasound to rule out other issues that might be causing the pain he's been having for a couple of years now. We've always figured it was bowel issues, common in CF, since he had such a hard time with bowel obstructions during his last two hospitalizations.

In recent months, CCS and Medi-Cal have decided that the gastroenterologist, who has seen Ricky since he was a neonate in the NICU, is no longer someone for whom they will pay for services rendered. So I had to turn to the CF doc (lung doctor) to get Ricky's ultrasound ordered. Today he had it, at Packard.

First off... The tech asked if anyone had ever mentioned Ricky having situs inversus. I said no, I didn't think so -- what was that? He said it was where the organs are reversed. He said that Ricky's liver seemed to be in a different place. I quickly Googled the term on my phone and puzzled over it.

Then the tech asked if anyone had ever told me anything about Ricky having issues with his pancreas. I said that other than pancreatic insufficiency, no.

I was asked about whether he'd had surgeries. I mentioned the several centimeters of small bowel that were removed when he was a few hours old. I said as far as I know, nothing else had been removed then.

Then things got really weird. He couldn't find Ricky's gallbladder. He had him turn this way and that, hold his breath. No gallbladder. And as it turns out... No right kidney either. What. The. Heck?

He called in another ultrasound technician. She couldn't find either organ either, after a lot of looking. Then the two of them brought in a radiologist. Even with his help they couldn't find the right kidney or the gallbladder. Curiouser and curiouser.

The exam was wrapped up with ultrasound tech #1 saying that the report would be completed soon. He mentioned that other imaging studies would probably be ordered.

When we got home I left a message on the CF nurse's voicemail. I talked about the weird ultrasound and asked that she call me as soon as the results were received, since I figured it would be pretty soon with how weird things were. I got a call back shortly thereafter from the patient care coordinator. He let me know that they felt Ricky needed to be referred to a gastroenterologist, I'm assuming one there at LPCH. So... results of the ultrasound? We don't have them yet.

How does someone lose their kidney? And gallbladder? He's had so many x-rays and at least one other ultrasound and CTs and... No one noticed this before? Or the strange liver placement or pancreatic issue? I'm so confused.

Hopefully more answers are forthcoming this week.

UPDATE:  I heard back from the gastroenterologist eventually.  She said that, in fact, both kidneys were visible, but the right kidney was obscured by bowel gas (which was odd, since he hadn't eaten since dinner the night before).  The gallbladder was there, but greatly compressed.  The gastroenterologist said this could be indicative of a number of problems, and suggested that Ricky have an abdominal MRI.  This will have to wait til we see the new gastroenterologist at LPCH.  We're waiting for that to happen... Hopefully soon.

Guest Post: To Ricky From Nana

A note from Rebekah: My mom wrote this for Ricky and gave it to him on Saturday for his sixteenth birthday. Every year, I blog about the day Ricky was born and the weeks and years that followed. This year I want to share what my mom wrote. She says it all so well!

Here are some things I remember:

Your mom was taking good care of you even before you were born. We had Thanksgiving, and soon after that she noticed that you were having trouble – not moving as much as you had been. Thank goodness she called the doctor so they could start taking special care of you and of her.

I remember the first time I ever saw you. Pop and I, Grandma and Grampa Senn, and lots of other people were looking through a little window at a tiny baby with a very fat tummy, hooked up to lots of tubes and wires, wondering if we’d ever get to see you grow up. I’m so glad we have!
You were in the hospital in the Neo Natal Intensive Care unit for about two months right after you were born. You slept in a special little bed, hooked up to lots of tubes and wires – it was pretty scary.

After a while, we were allowed to hold you, being careful of all your connections. I was too afraid I’d do something wrong, so I don’t think I ever held you in the hospital, but I did love to touch you and just watch you. While you were in the hospital, Pop went to see you every single day. He’d stop there on his way to work and take your picture and cuddle you. Then he’d take the pictures to work and show them to all his friends and his customers, so lots of people knew all about you! He loved you so much and was so proud of you.

One day while you were still in the hospital, your mom and I went shopping. As we were parking, she saw a lady get into the car with her baby, but instead of putting the baby in a carseat, the lady held the baby in her lap and they drove away. I thought your mom was going to jump in front of the car and strangle that lady – how dare she take chances with her baby, when our baby was so sick? Didn’t the lady appreciate what a treasure she had?

The first time I ever got you to myself, your mom and dad and Pop went to a CFRI meeting and I got to babysit at your apartment. I’d promised myself the whole time you were i he hospital that someday I’d get to just sit and hold you. And that’s what I did. I think they were gone for about 3 hours, and I just sat on the couch and held you and touched you and loved you and looked at you. It was wonderful!!

Since you’d been so sick and had such a hard time digesting your food, Mommy wasn’t able to nurse you. Instead, she pumped out her milk and donated it to other little babies who couldn’t drink formula. She gave GALLONS! Your dad called her the “Dairy Queen”. You, meanwhile, had to have this really smelly special formula. We had to open up an enzyme capsule, dump it into your mouth, then give you your bottle and hope you’d stay awake long enough to drink it. I must admit, lots of times I’d promise to buy you a pony if you’d drink the whole bottle. I think I owe you a few ponies.

For a long time after you came home, you had to wear a monitor and we had to have oxygen available just in case you needed it. It was quite a production taking you anywhere, but it was worth it! Sometimes I think about that when I see you with your DS carrying case – you’re still attached to electronics!

One of the funnest things to do with you when you were little was to show you the white nose-and-mouth mask that’s hanging by my front door. You really liked it, and you’d do your funny happy thing – making a little circle with your mouth and making your arms go in and out.

Whenever you came to visit, Pop could hardly let you go. He wasn’t very good at sharing you! And when you left, you always wanted to have “datchers” - that was your word for crackers. You’d look for something in the treat drawer, and we’d have to put some in a baggie for you to take along.

After you got a little bigger, you and Mommy would go to Pop’s work. You loved to get onto the creeper and roll under the cars with him to help. He’d let you use his tools to “work” on the cars. You were so proud of yourself, and Pop was so proud of you! Nobody who came in to the shop when you were there could get away without Pop taking you up and introducing you. Then you and Mommy and Pop would walk down to the Juicy Burger and have lunch.

Ever since that first day, your mom has been a tiger when it came to taking care of you and getting you the things you needed. When we found out you had CF, she learned all about it and insisted that all the doctors talk with her and gave her lots of information. I remember her trying to get Dr. McCracken to have a meeting with her. I think the doctor thought she was just a worried mom, but after she finally met Becky she understood how smart Becky was, how much she knew, and how dedicated she was to you. Whenever your mom has heard about anything that might help you, she’d do her research and see to it that you had the very best care.

I love you so much, Ricky. I am so proud of you, and so glad to be able to see you grow up into such a great young man. I wish Pop could be here to know you now. He’d be proud of you, too, and you guys would have such a good time together!

Sixteen years ago...

06
Originally uploaded by Beckerbuns

Sixteen years ago right now I was lying in an uncomfortable hospital bed, scared and exhausted, having sporadic contractions. Eight hours later Ricky was delivered by emergency c-section. 9:26 a.m. on Sunday, November 26, 1995. 33 weeks' gestation. That's when this incredible journey began. I'm so challenged and so lucky and my life has been changed in ways I never could have imagined!

Hypoglycemia and other stuff

I called the nutritionist today to ask what was up. Basically, Ricky's glucose test last week showed that he has reactive hypoglycemia. Basically his CF affected pancreas sends out the insulin late, causing a late precipitous drop in blood sugar (in this case 2 hours after he drank the stuff). His blood sugar during the test spiked like it was supposed to, to 220, but then at the 2 hour mark the insulin hit and it dipped to 50. (That's when he passed out in the parking lot!) It took him the rest of the day to recover.

What does this mean? Basically he needs to be careful to eat three moderate meals per day and snack in between, and not eat a huge amount of carbs at any time. Carb overload followed by reactive hypoglycemia may be what has caused his dizzy/sleepy spells (with irritability) over the past few years. We just finally happened to catch it in a test.

I asked if this meant he will develop CF related diabetes. I was told there's a 50% possibility of this anyway, but he could go on for years this way before developing full blown CFRD. So he'll just keep having the annual testing (oh, joy).

It feels good to at least have some answers.

Going home now... Ricky's bone scan went fine and so did his PFTs. He brought his FEV1 up 10% to 81% in the brief time since his CF clinic visit. Go Ricky!

Update

Ricky had a rather traumatic blood test last week. This included his annual labs followed by a 3 hour blood glucose tolerance test. That test involves blood being drawn periodically throughout the 3 hour wait after taking a big drink of disgusting glucose solution. A lot of pregnant women have had this test in 1 or 3 hour varieties.

Poor Ricky started to feel badly right before the half hour draw. He was fasting, so I don't know whether he was just hungry or what. We had to battle him for 10 minutes to get the 3rd draw, making it late. He was tired and hungry and physically fought. The fourth draw went off without a hitch. After the fifth and final one, he was dizzy and unsteady, stumbling around, and on the way out to the car he passed out cold on the pavement. It was scary. And the CF nurse, when I called her, said she hadn't heard of that sort of reaction before. She suggested he might be dehydrated and I did let him rest and give him fluids.

After waiting a few days this week for all of the blood test results to come back, this afternoon I heard back from the CF clinic. Sort of. Ricky's labs are all back, but the nurse is going to talk to the nutritionist about the vitamin levels and glucose tests before they get back to me. That doesn't sound good, does it? (The glucose part; we've had to add extra vitamins before -- that's no big deal.)

Also heard back from the gastroenterologist's office today. Ricky is supposed to have an abdominal ultrasound to rule out other stuff given his frequent abdominal pain. But CCS and Medi-Cal will not cover the GI doc anymore, for bizarre reasons known only to them. So the GI doc is going to call the pulmonologist to strategize. Ricky will probably end up being referred to a GI doc who's also at Stanford and getting that test. It's kinda sad, since the original GI doc has seen him ever since he was diagnosed at 3 weeks old. But we will deal.

Tomorrow (Friday) Ricky's having his annual bone density scan and full pulmonary function test. And we will hear back about the blood tests. What a week it has been!