Saturday, August 9, 2014

Gross Things That Can Set A CF Mom Into A State Of Panic

Because of the thick, sticky mucus that resides in a CF patient's body, germs have a tendency to really set up shop, fester, and cause big problems.  I find that I am and was no different than a lot of CF parents, especially when Judith was so little.  If you've been following us for a long time, you may remember reading about our times under lockdown to protect her from a bad flu outbreak, RSV, etc.  And as a new CF parent, I wanted to sanitize everything and was pretty anal about who and what Judith came in contact with, just to name a few.  There are still things that I won't let her do (barefooting it on a hospital floor, for example), and honestly I wouldn't let any child do that because hospitals are gross places.

There are also many things that I have learned to relax with so Judith can have as normal a childhood as possible.  CF is a part of who she is, and yes we do have to revolve some parts of our lives around treatments and appointments, but I also don't want it to become so consuming for her and us that she won't get to experience some normal childhood things.

As a side note, I totally realize that this is what WE are choosing, while other families will choose to do something else.  And that is completely ok.  No two families are the same or function the same, just like no two people with CF will be affected by the disease in exactly the same way from every angle.  The important thing is choosing to do things that work for your family and your individual situation.

I admit that part of the reason for this post is a pat on the back to myself, because I didn't flip out and immediately want to put Judith in the tub for a bath or want to sanitize everything she would come in contact with.  In fact, with her starting to attend Sunday School this past year, both John and I were able to really learn to relax over her touching "community" toys that many other little kids were handling during cold/flu season.

This past Friday, we went to my in-laws' house for a visit.  My father-in-law has a good sized hobby farm, and Judith wanted to go see some of the animals.  My father-in-law walked her around, showing them to her, and she tried petting some of them but couldn't get close enough to actually do it before they wandered off.  We just made sure she washed her hands really well with soap and water before we had lunch, and I could see that she got really dirty while she was with her grandfather, but she also had a lot of fun.  At least she didn't drink stagnant water out of a puddle like she did last year around this time.

I think what makes a lot of CF moms panic, at least initially, is the fact that some of the really nasty bugs our children can culture, like pseudomonas, live in soil and water.  Trust me, it's something that I think about, and is the reason why we get Judith to wash her hands as soon as we can get her to a sink.  But for us, it's not a hill we're going to die on, especially since she loves animals and loves to dig.  So I don't want to keep her away from it, and want her to be able to enjoy something that's a pretty normal part of childhood.  I feel the same way with splash parks/water parks and pools.  Some of the only things we avoid are any bodies of stagnant water and hot tubs.

I also have to laugh at myself a bit, because I'm realizing how much I did put her in a bubble, mostly out of necessity, but there were those small little things that I now realize weren't worth panicking over.  Sure, I still have days when I panic over something silly, and I would think that's normal for a lot of CF moms.  I've been working with myself, though, to try to relax, because once she goes to school she's going to be doing things that I can't control, and is going to be exposed to way more than what I can control as well.  We're certainly still proactive and do what we can to keep her as healthy as possible, but I also am realizing that we're rapidly getting to the age where we're going to have to start letting her get into things and letting certain things go because it is out of our control.

Wednesday, August 6, 2014

Miscellaneous Musings

I kept forgetting to update the blog, because things have been rather busy around here the past few weeks.

Trying to get things regulated for Judith has been... interesting.  I know why we have to keep her on the high doses of miralax, and with her bowel as stretched out as it is, we need to make sure she's taking all of it to keep things moving so we don't end up inpatient again anytime soon.  However, I also knew that it was going to create some nightmare diaper change situations based on her past reactions to 1+ caps of miralax, and I was spot on.  The latest clean out has put a total halt on potty training, even for pee.  I want to try the training underwear to see if that will help her realize when she's wet, but with the poop situation I need something that's going to contain that mess.  I don't even trust to put her in a pull up because they're not absorbent enough.  The good news is we were able to cut her daily amount back to 1 cap a day instead of alternating between 1.5-2 caps a day, so I'm hoping this will help.  I'm also feeling guilty because we're going to run another fecal elastice test to get her pancreatic function numbers since that hasn't been done for more than 2 years, and I haven't collected the specimen yet.  They want it a certain consistency (gross, I know), and I'm honestly not even sure how I would've collected something in the past few weeks.  The good news is that Judith's 2 week follow up x-ray looked good: she's not backed up, and the loops that were really stretched out are showing signs that they're starting to move back to a normal state.

Still no action or news on our house.  The market in our area really slowed down in July, which is apparently typical, so we kind of hit at a bad time.  Things are showing signs of picking up, and we're getting ready to tweak the price to freshen things up, so I really hope this will help get us an offer soon.  John has a little more patience with this than I do right now, which is funny because he's usually the impatient one.  I'm starting to get exhausted looking at properties and trying to find one that both John and I like and that will work for our family.  We did find 2 houses that we really liked, but 1 already sold and I have a feeling the other will sell before we get a chance to submit an offer on it.

We had some gorgeous weather last week, and I really want that back!  For July standards, it was way abnormal: low temperatures and very low humidity.  It felt more like fall than the middle of summer, and considering this happened at the end of the month it completely threw me off, making me think that September was finally here.  Talk about disappointment when I realized that we still have to get through August!  Knock on wood, the entire summer hasn't been crazy hot, and I hope it stays that way.  We've certainly had some hot days, and the humidity levels have been high, but compared to last year, this year has been pretty awesome.  I like not having to run the air conditioners and saving some money on electricity!

Friday, August 1, 2014

Birthday Boy!

Today Buster is 9! He is handling his senior years very well. I'd say he is slowing down with age, but considering this is the pup who takes laziness to a new level, it's impossible to tell if he really is slowing down! He still loves to snuggle, burrow under any and all blankets, and Ned's to know that his Lady is happy. Buster has a soft spot for Judith... when she has food. The rest of the time he tends to ignore her, choosing instead to claim the sunbeam coming in through the windows or to claim the coveted spot on the couch next to me.

One thing that I did notice is that he tends to follow me around the house more than usual. In the past, he was ok being in another room while I was working in another, but now I know to expect my little shadow to make an appearance if I'm gone for more than a few minutes.

Buster certainly has his quirks, but he has his hilarious moments as well, and he helps keep things interesting.

Happy birthday, Buster!

Saturday, July 19, 2014

Tips & Tricks: Hospital Admissions

After going through 3 admissions in as many years (1 NICU admission after birth, and 2 short admissions), I think of things to bring for the next admission and things not to bring for a future admission.  I wanted to share my tips and tricks, with the hope that it might help another mom or dad with their packing list when their child is admitted.  I am by no means an expert, and this list certainly is not exhaustive.  It is a "work in progress," and I'll try to remember to update this often when I discover new things.

Please make sure you talk to your NICU staff about what they permit at the bedside before doing things on your own.  Each NICU typically has it's own set of rules, and some will allow certain things while others will not.  Some things could also depend on your baby's situation.

 * Bring some pictures to put at the bedside: you, your spouse/significant other, any pets, other family members, etc.  Even though baby can't focus on them, it can give the bedside and even the isolette a comforting touch.

* You can bring your own clothes for baby to wear, but it's not a requirement.  If you do bring your own clothes, label EVERYTHING.  Tell the nurses that you want to use your own clothes, and if they don't put a note at the bedside alerting everyone that you're using your own, make a little sign yourself and hang it on the isolette/open crib.  If your clothes are labeled and they accidentally get tossed into the hospital laundry, it'll be easier to track them down.

* Blankets are a great way to spruce up and decorate the bedside.  A clean, soft blanket from home can be used for kangaroo care, and can also be draped over the isolette for a personal touch.

* If you are planning to try to breastfeed, a nursing pillow can help.  One can also help with bottle feeds.  Ask if you can keep your Boppy or My Brest Friend (or whatever your pillow of choice is) at the bedside so you don't have to haul it back and forth.

* Ask for Snappis/breastmilk storage containers as often as you can, even if it's every day.  Get a couple packs at a time if possible.  You go through them fast, especially once your supply is established, and it's a good idea to have plenty of extras around in case you can't make it to the NICU for a day or 2 (or longer).

* Watch what kind of clothing you get.  Avoid zippers, because you can't close them completely or easily around monitor leads.  Snaps are always the best option as it allows for monitor leads to easily come out of the clothes.  Pull over outfits also work well, but ask your NICU team first since some aren't as wild about them.

* Take lots of pictures!  You'll be amazed by how much baby changes in a really short amount of time.  Grab some videos of baby as well.

* Bring some things to do while you sit at the bedside during times when baby can't be held.  Books, portable DVD players, laptops, iPads, scrapbooking supplies, etc. can all help pass the time.

* Pack some snacks and small bottles of water in your bag so you don't have to get them in the cafeteria or from vending machines.  It's much cheaper to bring stuff yourself.

Admissions for a Young Child
I'm sure there is some cross over for admissions for other conditions, but since my experience is CF related, my tips and tricks will reflect more of that than anything.

+ = things to avoid if you are being admitted for a GI clean out; don't have them on or in the bed for sure, but you may still need some of these things to go home at discharge

Things to Bring:
+ Favorite blanket(s) for your child
blanket(s) and/or sheets for you
soft mattress topper for bed chairs/fold down beds/cots
+ pillow(s) for your child
pillow(s) for you
+ pajamas and very comfortable clothes (think sweats, cotton pants and tops, etc)
clothes and pajamas for you
books, puzzle books
+ favorite toy/stuffed animal/doll or 2 for your child
laptop, iPad, or phone (or any combination of these) and chargers for all electronics
entertainment for your child (books, coloring books and crayons, etc)
toiletries (toothbrush, shampoo, deodorant, etc)
combs, brushes, and other hair supplies that you use regularly
money for food
your own vest system (optional; the hospital may have their own machines you can use)

* As noted in the key, really watch what you bring if you're being admitted for a clean out.  Don't keep ANYTHING in the bed that you or your child really cares about, because the odds are incredibly high that said item will be ruined by poop.  You can bring blankets, a favorite stuffed animal/doll/toy, etc, but keep it safe on a shelf away from the bed until you're ready to go home.  Stick with hospital gowns and not your own clothes (including socks if you don't want to have to buy a lot of new ones) for the same reason, since it will get ruined.

* If you're in for a clean out with a really young child who is still in diapers or is potty trained but will be in diapers as a backup, ask for the heavy duty chucks to line the bed instead of the thinner blue chucks/linen chucks that they lay down.  We got big, purple ones to line the bed for our last clean out, and it saved us from changing the linens extra frequently.  You may still have some linen changes, but hopefully not as many.

* Ask your hospital if they have the option for a parent's tray to be brought to the room.  Our hospital offers one for a cheaper fee than what you could end up paying in the cafeteria.  You can also nibble off your child's tray, depending on the diet they're on (that doesn't work as well if they're on clear liquids).

* Don't hesitate to ask the nurses to keep an eye on your child so you can take a walk and get food or just get away from things for a few minutes if you need to.  Even a short-ish walk to the cafeteria to get a meal can help give you a small boost of energy.

* Child life specialists can help during procedures, even for something as "basic" as a blood draw or IV placement.  If your child has a hard time with these things, ask if they can help offer distractions.

* If you're going to be in for a longer stay, bring some things to decorate your room to make it more homey.  I saw a neat tip on another CF blog I read, and the mom decorated her child's IV pole with Christmas lights.  Make paper chains to hang, or have your child draw/color pictures to hang up and display.

* Bring some "cooler weather" clothes for yourself and your child if you or they tend to be cold.  Hospital rooms are often kept colder, and you can adjust the temperature, but bring some capri-length or long pants and maybe a long sleeved top or sweatshirt if you get cold easily.

* Bring enough socks for you and your child, and possibly slippers (that are easily washed) or sandals to walk around.  Everyone has their preferences, but I personally do not go barefoot or allow Judith to go barefoot in a hospital room.  Think about it: those floors are nasty, and hospitals are germ-filled places.  The floors are certainly cleaned, but yeah.  If you're comfortable going barefoot, though, go for it.

* Try to outsource phone calls if you think you'll be constantly bombarded by calls and/or texts.  Have a couple contact people that you can give updates to and let them pass the word on, or let people know you'll post updates on Facebook, Twitter, a blog, through a mass email, etc.  During our first post-NICU admission, it was getting extremely difficult to field phone calls from tons of people on top of changing many diapers, scheduled tests, and discussing things with the doctors and nurses.

* If a spouse/significant other cannot be at the hospital for whatever reason, even for a visit, Skype or Facetime with them.  You and your child can still see and hear them that way, and it can help.  You can always do the same for family and friends if they want to visit, but are unable to.

Friday, July 18, 2014

Our Recent Inpatient Adventure

As you already know, I tend to talk about poop.  Sometimes a lot.  Ah, the life of a CF mom!  So if you're keeping score on poop posts, go ahead and add another tally to that list.

Last wee, I fully admit that our meals weren't always the greatest in the evening.  Well, at least mine weren't.  Judith still had some great meals at VBS at our church.  Even so, she didn't eat anything that typically binds her up and causes her to get really constipated.  Yet by Saturday, she was already going on day 2 of no poop, and by our clinic visit on Monday she was on day 4.  Poop is always something we discuss at clinic because it's one of those things that can tell us how she's doing, and I made sure to mention the lack of poop rather quickly.  We had to do labs anyway, so Dr. G. added a KUB to her x-ray list.

The rest of the visit went relatively well.  Judith was extremely cooperative in the triage room for vitals, and was even telling the nurse everything she had to do (smart kiddo!).  However, she did decide to hide in the cabinet under the sink when Dr. G. came into the room because she kept claiming she didn't "need a checkup."  She's such a stinker like that, and it gave everyone a good chuckle.  We got her cultures, she got 3 stickers and a lollipop, and she was happier... at least for a bit.  Labs are never fun, but at least the lollipop distracted her long enough for us to walk over to the lab.

A half hour, 3 sticks with butterfly needles, and 2 finger sticks later, the phlebotomists got enough to send for testing.  This time, these ladies were slick (unlike others we've had in the past where I was seriously questioning how many peds patients they've stuck), but Judith's veins just did not want to cooperate.  We got what we needed, though.  Then we got her x-rays: lungs are still as clear as always, but we found out the following morning that there was quite a stool load hanging out in her intestines again.  I wasn't really surprised by that considering by Tuesday she was going on day 5 of no poop.

Tuesday morning I called our CF nurse to get the results, and she said that everyone talked it over, and they were willing to prescribe and let us try some fleet enemas at home, or we'd have to bring her to the hospital to do another inpatient flush.  Initially I thought we could try the fleets at home to save us an inpatient stay, but John and I decided to pass on that level of fun, particularly because the house is on the market and neither one of us really had a burning desire to be cleaning feces off the floor (or anywhere else it might hit, for that matter).  So inpatient we went.

Dr. G. ordered a barium enema that we did while we were waiting for a bed to become available, because he wanted to rule out Hirschsprung's.  That scan looked clear, so we know that's not contributing to the overall issue.  We got settled into a room relatively quickly after we finished the barium scans, and then we faced the fun of trying to place an IV.  Last year, it was no problem and the nurses in the ER got it in super fast.  This time was a complete 180.  It took 2 different people and 4 sticks for them to finally get a line placed.  They would've had it on the 3rd shot, but something happened (my MIL was explaining that sometimes the IV can go the whole way through the vein and make it unusable, so I have a feeling that's what happened) and they had to go for a 4th stick.  I have no idea what they would've done if they couldn't get it in that time, but I was thisclose to telling them to give her a break and trying again later that evening.  I also feel a little guilty, because I got sarcastic and snarky with one of the ladies over a passive-aggressive comment she made.  The first lady would only stick her twice, and was getting pissed because Judith would move.  After the 2nd majorly failed attempt, she threw up her hands, declared herself done, looked at me and said, "I wouldn't have a problem if she'd stop moving.  You need to talk to her and MAKE her understand she can't move a muscle!"  I looked at her and said, "Yeah, well, she's 3 so good luck with that."  I don't think she cared for my response too much, but come on.  Judith has to be in the toddler beds yet, and this lady works in a freaking children's hospital so you'd think she'd be used to this kind of thing.

Anyway, the team Judith had decided to take a more conservative approach to start, and tried using fleet enemas and miralax to attack the blockages from the top and bottom.  Judith didn't drink the miralax, which didn't surprise me, and they wanted to try to get her out of there as quickly as possible, so we ended up having to get an NG placed and start Golytely to break things up further.  The barium helped, and the fleets did help break up the spots that were really low, but the golytely was needed for the higher spots.  The nurses started that Wednesday mid-day, and by about 3 or 4 AM Thursday morning, were able to completely stop it.  Overall, we were there almost as long as last time, but once the golytely was started the entire process did move faster.  And knowing what to expect this time helped as well.

Follow up this time is going to be interesting.  Because of the size of the blockages, there is a big part of the colon that is really stretched out and will take a while to go back to normal.  So we're going to have to do monthly x-rays to make sure that things are still moving, and we have her on 2 caps of miralax daily to assist with that.  The GI team that was following her in the hospital said it's likely that we could end up inpatient again sometime soon (like within the next 6 months) to clean things out again as her colon bounces back, but her CF team and I are doing everything we possibly can to avoid having to do that again.

This stay was, emotionally, harder than the previous one.  I was bummed that we were right back to square one from approximately this point last year, and Judith was extremely unhappy because now she really understands what's going on, and remembers more.  I did joke that maybe we should make a standing appointment for sometime within this 1 month block every year to do a clean out since it seems to be Judith's preferred time to back up.  Realistically, though, seeing this happen again in a little less than a year just kind of cemented the fact that Judith's issues, at least right now, are heavily GI related, and that we're going to be challenged by them for a long time.  There's no way to really tell or predict how frequently we'll have to go through this, or if we'll get longer stretches between clean outs, but for now we're focusing on keeping things moving as best as we can and trying to do as much of it at home as a part of her daily maintenance so we can avoid going inpatient too often.

As a small tag here at the end, I have to give a huge shout out not only to our CF team, who is as awesome as always, but to the fantastic doctors and nurses that took care of Judith during her stay.  The doctors were great at taking the time to explain things to us, and her nurses were more than willing to take it a step further and explain things even more if I had questions.  They did a fantastic job with Judith, and that's something I always appreciate!

Happy 5th Gotcha Day!

It's crazy to think that it's already been 5 years since we rescued Buster and Lady, and that both dogs will be 9 very soon!

Both dogs are doing well, and right now are just exhibiting age-related problems.  Lady's arthritis flares up a little more frequently than before, and she's had a few days recently where she's been on restrictions and not able to play as often as she would like.  Buster's pinched nerve acts up occasionally, but a little bracing helps resolve that.

They will constantly "battle" each other, one shoving the other out of the way for the preferred spot on the couch next to me, or the preferred spot in the sun that comes in through the doors and windows.  They really love Judith, and love her even more when she'll drop something during meals and snacks.  Both dogs, but especially Buster, love their blankets, and any blanket is fair game for burrowing.  If you can't find one of the dogs laying in the sun, it's a good bet that they're snuggled in a little blanket nest!

Happy 5th Gotcha Day, Buster & Lady!

Tuesday, July 1, 2014

What We've Been Up To

It's been a crazy last few weeks!  Our house officially went on the market a week ago, and we were able to start the fun part of the process and look at real estate.  It's been crazy busy around here getting things prepped, but the house looks fantastic.  Now I'm at the point where I'm in "maintenance mode," feeling like I live in a museum, but I know it'll be worth it in the end.

Amid all of the chaos, Judith came down with a summer cold, causing her MRSA to flare, and was gracious enough to share her germs with me and my mom.  Her team put her on bactrim right away like they always do, but go figure now she's wised up to the crushed pills in her Pediasure and was fighting us with drinking it.  I'm hoping that in another year or 2, I can start to teach her to swallow pills so she won't have to worry about the nasty taste from the antibiotics.

We've also been using the new vest, and we seriously LOVE it!  Judith now has the independence and control with it that I really think she wanted with the other vest, and even though I still need to help her put hoses back on if she unlocks it mid-treatment, the majority of the time she can handle it herself with minimal help (typically one of us has to support the hose so she can lock it in place).

Making our lives even easier was the arrival of the Raksog cart!  I'm seriously glad that so many people recommended this cart, and that we have a vest system that I know would easily fit into it!  It took some tweaking to get the middle shelf placed at the proper height so I could get the generator in and out of the bottom shelf, but overall the cart was easy to assemble.  I bought 2 plastic "woven" storage baskets at Lowes (a perk, because they're super easy to clean) that fit beautifully in the top shelf, and Judith's meds and neb supplies now reside in those.  Her nebulizer is housed on the middle shelf, along with her vest, and the generator is on the bottom.  The one thing I want to do is try to find some hooks that will hang on the side of the shelves so I can hang the hoses on them.  Currently they're draped over the top of the cart, and that works, but I'm thinking hooks will make things look neater.