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.



NICU Tips
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.


KEY
+ = 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
socks
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.

Tuesday, June 24, 2014

Big News From Vertex

The Phase 3 results for the Kalydeco/VX-809 combo are in, and the final step is submitting everything for FDA approval!  For the approximate 50% of the CF population that is homozygous F508del (or those that have 2 copies of that mutation), this is HUGE news.  Heck, it's pretty big news for the rest of us as well.

It's going to be a while before the heterozygous F508del studies reach this point, and possibly longer yet before VX-661 gets there, but this is exciting news!  It's not a cure, and we still need to look for a cure.  But this drug has the potential to dramatically improve life expectancy and quality of life in CF patients who can get access to the drug.

Personally, I'm remaining cautiously optimistic.  There are a lot of good things with Kalydeco, and I'm excited to read the phase 3 study results in-depth to see the positives that came out of it.  At the same time, I've also read some of the negatives that are happening, and I really want to know what the long-term effects are going to be.  I'm fully aware that we won't know the long-term effects for a while, but it's still something I can't help but think about.

In any case, it's an exciting day for the CF community, and I'm hopeful that the FDA will expedite the approval process so we can get this into the hands of patients as soon as possible!

Friday, June 13, 2014

So About That New Vest...

I got our call back Wednesday afternoon, and it was shipped out yesterday!  Talk about fast service!  Between the 2 insurance plans, everything will be 100% covered, so we'll have no out of pocket payments.  Insurance was waiting for the final paperwork and whatnot to give approval, so hopefully everything continues to go through smoothly.

The next step is to wait for the call from the respiratory therapist who is a rep for Respirtech so we can set up an appointment for them to come to the house and train us on the machine.  Since we're already using a vest and are familiar with how it works for airway clearance, we had the option to waive the training, but I told the rep that John and I would still like to go through with it so the RT can show us the ins and outs of the new machine.  I'm sure I could easily figure out how to use it by reading the instructions and whatnot, but it's just going to be easier for the RT to show us what to do since my reading time is limited these days.

We're hoping that we can get an appointment set up for the end of next week.  I'm also planning to order the Ikea cart that I linked in a previous post.  I'm going to bite the bullet and pay the $15 in shipping, because if the fuel cost estimates are accurate on mapquest, it's going to cost almost that much for me to drive round trip to the nearest store.  The extra dollar or 2 that I would be saving by driving will go toward saving my sanity because I won't have to worry about driving on the highways around Philly, which can be pure hell.

I'm also keeping my fingers crossed that the novelty of a new vest will stick around for a bit, because Judith's been fighting me during treatment times... again.  I know full moon last night has not helped with anything around here, but even once that has passed each month she's still a nightmare.  At least she's been eating a little more, so I guess that compensates for the constant whining I hear for the entire half hour she's on her vest.  After an hour each day of listening to that awful whining, it's no wonder I'm ready to pull my hair out some nights, and just feel like I want to fast forward to bed time.

Wednesday, June 11, 2014

Vest Machines

Side note: I really want to reply to comments, but for some reason my account isn't letting me comment on anything, including my own blog.  Silly blogger.  I need to figure out what's up, so please don't think I'm ignoring you!  I appreciate the comments, and am definitely reading them!  :)


One thing that I look forward to every few months is the new parent support group for our clinic.  We all have kids ranging from newborns to age 5, and I can't begin to say how awesome it is talking to other parents, IN PERSON, who totally get it and you can exchange tips with!  I enjoy connecting with other CF patients and CF parents via the internet, but there's something about the face-to-face interactions that can make a difference.  It just stinks that the disease carries the risk of cross-contamination from 1 patient to another (hence the 6 ft. rule), because if things were different we'd be able to let our kids play with each other and just talk with someone who knows exactly what they're going through.

Anyway, somehow we got on the topic of vest machines, and while I know there are still plenty of people out there using the SmartVest system, I discovered I was in the minority of the group because everyone else was using the inCourage system.  Everyone had nothing but positive things to say about it, which is awesome!  I have to admit I was a bit jealous that they were all using the system already, because I've been getting exasperated with Electromed.  After some encouragement and more positive feedback, I decided to call and leave a message with our nurse coordinator to talk about switching.

Long story short, she said that there were management changes with Electromed at some point, and she wasn't overly happy with them anymore, either.  This had to have happened at some point within the last 2 years, because when we got our current vest Electromed was the company the clinic definitely preferred.  I told her my concerns, and she said we would definitely get the ball rolling to get a system from Respirtech!  I really think this is going to be a good move for us for many reasons:
1. The last few times I've had to call Electromed to get parts for our SmartVest, they weren't nearly as friendly and helpful as they used to be, and the last time the rep got a little snippy with me over the phone because I must not have been describing our problem adequately enough.  Sorry, but I don't know how else to describe what the generator was doing other than telling you it sounded like the air from the generator was hiccuping halfway through the treatment cycle, which it never did before.

2. The SmartVest just doesn't fit Judith properly.  In 2 years, we've been in the same size vest, and at first I figured it was just because she was still so small and literally just met the height requirement to fit into the SmartVest.  For a while, I've been observing that no matter what I try to do to adjust the fit, something just seemed off with the way it was inflating and fitting on her.  Even getting the new bladder and outer shell didn't make a difference.  SmartVests only come in 8 sizes, and after talking with one of the other moms on Saturday I felt better knowing we weren't the only ones who had problems with the fit.  Respirtech, on the other hand, offers 23 size options for the inCourage system, and that alone made me feel more comfortable about petitioning to get a different unit!

3. The single hose on the SmartVest is certainly a perk, and always will be.  However, when that hose gives you problems with the connection, it's frustrating.  Lately, the hose either seems to get stuck in the connection point of the bladder, or it pops out relatively quickly depending on how Judith moves.  If I don't seal it in hard enough, out it pops, and she gets mad because she can't put it back in herself.  If I get a good seal, then it gets stuck and I have a heck of a time getting it out.  User error?  Possibly.  But the other problem is Judith acts like an ox on her vest sometimes, and will pull that dang 23 lb generator along the floor to get to something she decides she wants, and that always ends in the hose popping out as well.  Could we have the same problem with the inCourage?  It's possible.  The big attraction for me, however, is the locking hoses.  I'll gladly give up the single hose mechanism for a double hose setup when they'll lock into place, and will be easy for her to pop into the vest herself.

4. The older model SmartVest generator is huge.  And loud.  And weighs a ton.  Ok, not a literal ton, but it's 23 lbs.  I know I've complained about this before, and I even expressed my concerns about that to the customer service rep when I called with our generator issue the last time.  Since they had to send us a new generator (and we had to send the old one back so they could inspect it), I asked if we could get one of their newer model generators that is much lighter and quieter.  I was told that nope, they refuse to send me a new model generator, and said that maybe with a new prescription from our doctor they could switch us.  I then asked if they were planning to ever phase out the huge generators and transition everyone over, and she told me no.

The inCourage system's weight is probably going to be closer to the weight of the new SmartVest system, according to what people told me.  So I'd guess somewhere around 16-17 lbs.  That's going to be a huge difference for me.  Obviously I'm still planning to get a cart to store everything on, but for transport purposes having a lighter machine is going to be easier on everyone, including my parents.

5. The other moms were telling me about the ease of programming the inCourage system, and I'm excited about that!  This vest cycles through things itself instead of you having to program and start/stop things on your own, plus the way it inflates and shakes is supposed to clear the airways better.  Judith's been doing so well respiratory-wise, and I want to keep that up while her lung involvement is minimal.  If we can keep clearing things efficiently now, I can hope that we can delay or minimize some of the damage the disease causes as it progresses.


We have no idea what our insurances' response is going to be to this process.  I can guarantee they're going to deny payment at least the first time.  They always do, especially given the costs of the equipment.  I was told that because our current system is about 2 years old, and we also switched our secondary since we had the SmartVest (and they didn't have to make any payments toward the purchase), we should have a little more leverage.  Our nurse coordinator is going to do everything she can to help us, as is Respirtech.  I felt really good after the initial phone call with Respirtech Monday afternoon, and feel very confident that this is a good decision for us.  I'm hoping that the process doesn't take too long, and we can get the new system (and trained on it) quickly.