Week Twenty-three - Walking the Walk.....

The "dailyness" of Babygirl's illness is beginning to truly sink in.  There is a new definition of courtesy here.  "Honey, I'll set up the machine for you." or "I know it's your turn to be up, but I'll take it. I'll be fine."  We watch each other for signs of wear and tear, and check frequently for breakage.  She seems fine.  It is hubby and I who must be alert to each others' weaknesses, for her sake as well as our own. 

It comes down to this, really:  What we do for her each night with that dialysis machine is both a blessing to her ongoing health and a very dangerous process.  We are both strongly aware of how fragile this system is, and how dependent it is on our ability to keep cool heads and clean hands.  We must not ever let our escalating exhaustion and frustration lead us into carelessness.

So let's discuss peritionitis.  Peritonitis is what happens when germs enter the peritoneal cavity.  Since this is naturally a sterile area with no natural entry point, the peritoneum is not equipped to fight infection, or to comfortably cohabit with germs as a matter of course (as such areas as the mouth and rectum can).  Peritonitis occurs when something breaks and releases germs into the area (ie appendicitis or pelvic inflammatory disease).  It can also occur when germs are accidentally introduced from the outside (stab wounds, for example).

In Babygirl's case the risk is that we will somehow get germs into her dialysis catheter.  During the day the tube is capped with betadine laced cover.  At night, though, we have to remove that cover and hook the tube to the machine.  And we have to hook fluid bags, and clamps, and so on into THAT tube.  The possibility of error is great, and we have to be very focused during set up to avoid touching any open port. 

For me, I think the fear is greater than it is for hubby.  Not that he isn't careful, he really is.  But I have seen peritonitis, and realize that not only could it be fatal, it frequently is.  It is also excruciatingly painful (and that's a word I don't use lightly, since it derives from the pain equivalent to crucifixion). I think about it every single night when I hook her up, and every single morning when I unhook her.

I truly think I would die if I knew that some carelessness of mine killed my baby.  Truly.

DeeDee

School Update.....

One of the struggles we have had throughout our baby's life has been solving her educational problems.  When she was a toddler, she qualified for Early Intervention Services.  It's easy to get into these - you can self-refer your child, the child is assessed by a group of great folks who do nothing but take care of kids with special needs, and they treat what they find.  But when the child turns three, they age out of that system and must be taken over by the local school district.  Even that wasn't so bad - the district looked at the evaluations done by EI and pretty much agreed to continue the special education, speech, occupational therapy and physical therapy she'd been getting in a special preschool. 

Then we came to kindergarten.  The school looked her over, declared her "caught up" and dropped her IEP (Individualized Education Plan). I found out later that "caught up" means "only a full two years behind other kids her age." She struggled thru K and 1st and then we discovered that she couldn't SEE.  We asked for more help.  We were told she didn't need it.  Second grade, same.  By the end of third she was barely funtioning at a 1st grade level and I put my foot down and insisted she be held back, so she had some time to do some catching up.  She is closer to where her classmates are, but still has to struggle with a lot of basics, despite repetition at home as well.

And now the medical stuff.  So last week our social worker from dialysis took on the school district.  And now, after all this time, they are going to assess her for an IEP!  Dang, all it takes is a deathly illness and the school suddenly pays attention! (Sarcasm intended.)  The bonus of this is that she is finally going to get assistance academically that she should have had all along in my opinion.

I guess every ugly cloud has some silver lining.

DeeDee

Week Twenty-two - More Gratitude....................

Once you start counting your blessings, more of them become obvious.  So I am going to mention a few that I forgot, or at least one that has appeared since my last post.

Sunday I needed to take Babygirl to the tertiary center for two doctor visits.  One with anaesthesia, so they could see that she was healthy enough to survive sleeping through a five hour procedure.  And one with pulmonology since (she has a history of asthma), to make sure she is breathing well enough to survive transplatation.  We had no difficulty with either exam,since she just had her first surgey without complications, and since her last asthma attack was about seven years ago.

But what am most grateful for is that a good friend who lives about a thousand miles away suddenly turned up at my door while I was loading up to leave.  You see, I had this insane plan to run Babygirl's gravity dialysis IN THE CAR while we were driving the three hours to my sister-in-law's house.  The principle of that is that you dump in a liter or so of fluid, leave it in for an hour and then drain it out, repeat times six.  I figured we could get half of it done on the road, half at my sister-in-laws's house, and then be able to SLEEP.  But my friend, who has known me since we took a prenatal exercise class together twenty-two years ago, looked at me and said, "You are in no condition to drive.  I'll take you."

Now, seriously.  She drove from Florida.  To Boston.  And then five hours HERE.  And she wants to hop in her car and drive another three hours?  And back the next day, all while her lunatic friend juggles dialysis bottles on her garment hooks?

That's the kind of friends I have.

I'd be insane not to be grateful.  So she drove, we caught up with each other's lives, and I ran the gravity dialysis for the first time.  Needless to say it was a learning experience.  Can it be done in a car?  Yup.  Is it a good idea?  Not bad actually, but better maybe on a longer journey.  I screwed up enough that she got three runs instead of six, but I figured that was better than skipping altogether.

And after our appointments I stopped at the transplant unit to drop off a copy of our local heart doctors visit (done to make sure her high blood pressure hasn't damaged her heart - it hasn't).  They kept us an extra hour to have me sign permission to get her on the active transplant list and draw a tube of blood.

So now we are listed in two states!  Yippee!  And it WAS bliss to sleep a whole night.  Now, if it isn't to much to ask, I'd like to sleep a whole night in the same bed as my husband ;o)

DeeDee

Things to be grateful for.....

Since the last few posts have been, um, a bit negative and depressing, I thought that this morning I  would start with a bunch of the things I am grateful for.

Our city just survived the worst flood in its history and our home was not damaged or even wet.

My oldest daughter.  She is raising three kids, building a new house, surviving in interim housing, and still praising God every Sunday morning.  I am grateful for her husband as well (it's his birthday today!) for being a loving and supportive man. I am proud of them both.

My next oldest.  She just graduated from an Ivy League school, and she's in California right now, about to leave for France, then Italy, on a wine-studying scholarship.  She's one of only 10 people nationally to win this award. She has a job and an apartment lined up in NYC when she comes home. I am so incredibly proud of her.

My middle daughter.  She and her boyfriend survived the flood and are not complaining at all about losing everything from their first floor.  They just figure they'll start over!  Their baby girl is the cutest, but she is one of those needy demanding little souls, but they take turns and handle it pretty well!  Living with grampa and gramma for a few weeks until the apartment is cleaned up may help ease that a bit - at least she doesn't have to cook! I am proud of her parenting skills, and of her boyfriend's determination to support them all so she can stay home at least a year with the baby.

My next youngest daughter.  She is juggling collge and early pregnancy, making wedding plans and all of that.  She's clearly exhausted, but hanging in.  I am truly proud of her too.  Her boyfriend also lost a great deal in the flood, as did his mom and siblings, so he's here to, and he never says "no" when I ask for help!

Babygirl.  I am so proud of her.  She picks her tired little self up in the morning, heads off for school, and almost never complains about how radically her life has changed.  The other day she told me, "The only thing I like about this is that when I get my new kidney, I'll be able to eat chocolate!"

And lets not forget Hubby.  Whosever turn it is to set up, it is both of us who listen to tech support, amusing each other with funny faces and rude gestures.  And cleaning up to remodel and prepare for our next stage of life, which was SUPPOSED to be a nearly empty nest LOLOL.  In a way I guess I am proud of us both.

There is always someone to play a game with. God seems never to let the population in our house drop below six (three just moved out, four just moved in, and we are up to eight).  And when someone tells me, "Man, your hands are FULL!"  I usually say, "Well, it's better than having them empty."

DeeDee

Fighting the new machine

The old dialysis machine failed The Bubble Valve Test and was sent to the happy hunting ground.  The new machine worked fine for the first two days, and then it refused to acknowledge that we had a bag on the warmer.  Then it couldn't find the second bag and insisted that we didn't have enought fluid to finish treatment. 

Tech support loves us.  (Thanks, Maria and April!  You guys are great, really LOL.)  So....we learned a lot more about how to make these machines talk to us.  Who knew that there was an entire touch keypad hiding in there?  Despite the fact that we (okay, I) actually threatened to shoot the machine after 2 hours of fiddling with it, we (okay, hubby) got the scale reset.  Seriously, the scale was off tare by 20 grams.  We are playing with 5000 cc bags, which, because they come with extra fluid in them anyway, weigh about 5100 grams.  That's a very low tolerance for error, which I suppose I should be grateful for, since it helps protect my child.

But gratitude is hard to scrape up when it's a school night.  Set up should take 15 minutes, and I allow half an hour.  So from 8:30 until nearly 11:30, we were in her bedroom, discussing cartridge fit, scale balance, pulling IV poles in and out of closets, ripping open boxes and bags and throwing away yet more opened but unusables supplies. And her school only just reopened after the flooding.  And she has two doctors appointments this week, and has to take a day off next week to go to the tertiary center for additional tests.  And since then (two more nights), the new machine has been setting off alarms during the fill cycle - like it's too weak to push fluid in, as well as causing the usual pain with the drain cycle.

They say that uremia affects school performance, and that dialysis will improve her ability to concentrate and learn.  Right now all she is learning is how to survive on six hours of interrupted sleep.  And how to make do with only four days of classes instead of five. And probably some cuss words that mom and dad might not otherwise say in her presence.

Her best friend's mom asked her how her night was.  She said, "Oh, you know, the usual."  Like it was no big deal, the pain that wakes you up every two or three hours.  Like it's no problem, trying to sleep while your parents take turns quietly crying in frustration.  Like having a ginormous air mattress taking up all the available floor space in your new room is just an alternative decoration scheme.  Like never being able to attend or have a sleepover again is perfectly okay.

Dear God, give her her life back.  Please.

DeeDee

Week Twenty.....Machine failure

Last Thursday (I think it was Thursday.  Sleep deprivation makes it tough to tell.), the dialysis machine announced as I was setting it up that it had failed "The Bubble Valve Test."  It advised me to push the "Okay" button to acknowledge this failure and to re-run the test.  I can tell by the sound of the machine that SOMETHING isn't working because instead of groaning and creaking it's peeing into the drainage container (oh, this machine is quiet, but it still makes plenty of identifiable sounds LOL).  I got the same message and instruction several times over without having the machine make any reasonable suggestion for how many times failing The Bubble Valve Test made it a bad idea to proceed.  But about the fifth time, I figured it was time to pull the cartridge and set up again.  Well, it seemed like time to ME, but the machine would not permit me to pull the cartridge.  So  I powered off, started over, and it still would not allow me to remove the cartridge, and I still couldn't pass The Test.

Time to call hubby.  He, of course, repeats all of the above.  While he is frustrating himself, I find the manual, find the list of failure warnings, and confirm that warning 30.1 IS indeed what it claims to be. Sadly, however, the manual also does not give any advice about what to about said warning. 

Time to call tech support (they are starting to get to know us LOL).  We discuss the problem, while hubby continues to randomly fiddle with the machine.  Since the thing is peeing instead of setting itself up, he clamps the pee tube (yellow clamp, get it?) and suddenly we are no longer failing The Test. 

Tech support is mystified, both by the failure of The Test and the inexplicable resolution of the problem.  They recommend that we remove the cartridge (which we now CAN do now that we've PASSED The Test).  Well, this goes on, and on, and on and finally, after burning through several days' worth of supplies, Tech support decides that the machine just isn't working.  So they offer to FedEx us a new one by morning, with supplies to go with it.

Hubby and I burst into laughter.  Tech support is utterly dumbfounded.  You see, they don't really know where we are, and they are in Wisconsin.  But we here in the Northeast are in the Flood that floated Noah, and we can't even get to a store for a loaf of bread, let alone a truck with a pallet full of supplies.  The National Guard is evacuating our kids from their low-lying homes, the airport is closed, and there isn't an open bridge anywhere in our two-river city.

Nothing daunted, Tech support says that if worse comes to worst, the National Guard will help them.  Dang, I feel kinda important!

It took a day and a half instead of half a day. But they did it. And I finally figured out what the bubble valves were.

DeeDee

Financial Alternatives.....

With the grim financial information that we have gathered, we have obviously come to the conclusion that we need to do some serious work on balancing the budget.  I don't know anyone in any profession who can cough up an extra $2900/month for any length of time.

I am still disabled.  So I am unable to pick up extra work, which would actually come close to closing that gap.  Hubby is really really needed at home to take care of babygirl so I can continue my almost-full-time work and maintain our health insurance. So we have no immediate way to increase income.

So...cut expenses.  We have already started this process.  We live in a two family house and have been using it as a one family, and are rapidly prepping it to return to two family status.  This will increase our income by $700, and decrease our expenses by $200 (one less power bill).  We are negotiating with our insurance.  Turns out that if you argue a bit, they decrease the copayment for out-of-town specialists (if we don't have one like it in town) and dialysis to $25, so that decreases dialysis costs from $2250/month to $750, and saves us over $100/month on doctor visits.  They will also pick up $900 of the $1000 copay for the surgery, eventually.

And, in two months, she will qualify for Medicare, which will pick up all of our dialysis costs!  Whoohoo!  So we have to hang on, fight, argue, fax, keep copies of EVERYTHING, document, document, document.

And survive.

DeeDee

Ongoing dialysis struggles......

Peritoneal dialysis has been a struggle for our daughter from the start.  Each and every night since we started home dialysis (was it really August 22?  I must redefine "eternity") she has awakened numerous times per night in pain from the suction of the fluid removal part of the cycle.  We had permission to take two nights off this past weekend, and even though we didn't go camping as planned, we took those nights off anyway. 

Restarting was less painful.  I think the days off allowed for a bit more healing.  Right about now would have been the surgeon's first preference for using the tube anyway.  But remember what I said about wondering what we'd do if the power went out?

Well, we found out this morning. The machine misread something about a bag clamp, and at 4:30, after trying everything the manual said, I had to call the company hotline. They suggestioned  all the things I'd already tried (maddening when you've been listening to an alarm for half an hour already) and then told me to power off and start over. That didn't work either, so we were told to disconnect her and attach a gravity drain. Well, I have 5 boxes of drain tubing (which we don't need). Three boxes of drain bags (which we don't use and won't work alone for this purpose). But we apparently lack the little blue hickeydoodle that allows us to hook her up to a gravity drain. Oh. 

So we move on to the on-call nurse. The kid has 700cc's of fluid in her belly right now. The on-call nurse asks if she can handle that. Huh???? Oh, you mean when she's AWAKE??? Hard to say since she is never awake and upright during this part of  her treatments! She always awakens on empty, not full.  Nurse tells us to unhook her as if the treatment were done and leave the fluid in.  Fortunately, she has an appointment at the dialysis center today, so they can drain her out there.  Hopefully they will fill hubby in on what to do next, and we will get it all sorted.

And I was SLEEPING. She had only awakened once during treatment due to pain, instead of hourly as she had been doing. Dammit. I really miss sleeping!

DeeDee

Week Nineteen - Financial Reassessment......

I don't think it's possible to plan ahead for a medical disaster of epic proportions.  I think that everyone knows that having health insurance is a good idea, but there is no way for anyone, layperson or otherwise, to be able to think up all of the questions that would need to be asked for every possible disease scenario.  Cancer?  Heart disease?  Rare pediatric illness requiring input from several hospitals?  How could anybody know what they might or might not be covered for for diseases they may or may not get?

Here's the general gist of how OUR plan works per visit (yours, of course, would be so different as to make this discussion almost irrelevant except for a 'heads up' about what you don't know):

Our doc: $20
Our in-town walk-in or associated specialists: $25
Our local out-of-town secondary specialists: $75
Tertiary specialists participating in our insurance: $75
Proceedures (surgery, xray, lab etc) done by local specialists: included in office visit
Proceedures done by secondary and tertiary specialists: $1,000 (yes, per visit)
Copayment for dialysis: $75 per treatment (and we "treat" DAILY).


So here's the general gist of how that works out in dollars and cents for our budget:

In December I was hospitalized and transferred to an out-of-network local hospital ($100 for ER and admission, $1,000 for other hospital)
From November to now I have not had one month go by without at least one doctor's appointment for me, all local ($45/month minumum)
In February, hubby had surgery ($25 for surgeon, $75 for anaesthesia, $45 for 2 preliminary doctor visits, and $300 in $25/visit copays for PT)
March, same for me, with slightly less PT
Don't forget dental visits for kids and us ($300) and glasses ($300)
Starting in April, no fewer that 2 visits per week with somebody somewhere for Babygirl, usually not local ($150/week)
Surgery $1,000
Dialysis training week ($75/day = 300)
Daily dialysis from August 22 - now = $900.
Ongoing dialysis costs: $2,250/month.

Current outlay for health care (not counting what I actually PAY for the health care) since November of 2010:

Roughly $6000 in out-of-pocket costs.  And I forgot medication copayments, increased grocery costs to manage Babygirl's horrible diet, gas costs for the frequent 150 mile/round trip to the secondary center, and mileage and tolls for our trips to the tertiary center.  That's all well over $650/month, and that's about to increase due to the daily dialysis to an incredible (drum roll, please....) $2900/month.

Add to this that I've been disabled and on part-time work since mid-December. I am almost out of sick time, and I had 1000 hours banked as of last November.  I also used to work a couple of days a month in the ER or walk-ins for and extra few hundred dollars/month, so that is gone, decreasing our monthly income even more.

I feel a certain nausea thinking about this. No wonder Pollyanna is having such a hard time!

DeeDee