New Year, New Hoops

There's nothing like New Years. Clean slate, fresh start, new beginnings, resolutions. Every thing starts again and it will be better than ever!

 That lasts until the fist real work days of the New Year.

Then it's just January.

The worst thing about January to me is all the new hoops through which I have to jump. There are new rules, new deductibles, new requirements and new documentation etc for Maggie from several corners. Each of them requires hours of attention and even if successful, will cost me more money. Medi-cal changes eliminate  some of her medications. The regional center is changing the way the nurses will be paid so that each nurse needs to complete a 40 page packet of information and wait longer for their checks (just initially, to be fair), the city needs new documentation that Maggie is actually entitled to a parking pass (for $100) for her nurse, PG&E also needs documentation of Maggie's medical needs, and the insurance company has a fresh new deductible along with new rules about getting Maggie's medications. Yet another form signed by the doctor may or may not excuse us from that. I won't know until I actually jump through that hoop.

So if you don't see me around as much for the next week or so, you will know where I am:

Making a list and checking it twice

 The great floor adventure 2011 looms ever closer. I have been cleaning out shelves and closets preparing to move everything upstairs to the bedrooms or downstairs to the basement while we get the floors sanded and refinished in the living room, dining room, hallway, stairs and upstairs hall. (The bedrooms will have to be done another time.)

This is something we should have done at least 5 years ago, probably more like 10. I believe it's been 20 years since we did it and the floors are in terrible shape. This picture gives a good illustration. I pulled the rug back to show the amount of wear on the floors. Even under the rug the floors are dull but not worn out. When we return they will be gleaming

It's not the expense that made us put this off, it's the hassle.  When we did this 20 years ago we had too little boys. Maggie wasn't even born. We packed a bag and stayed at my parents house while the work was done. Now, we have Maggie and grandma's house is out because of the number of steps she has. I cannot carry Maggie up the stairs and would be completely unable to get her wheelchair in and out. We are going to stay in a friend's house across the Bay. There are three or four steps into the house, but then it's all one level.

We are lucky to get this offer. It's a fully furnished house, but no one is living there, so we won't be imposing on their lives.

And believe me we would be an imposition on the most generous family. These days it's not as simple as "packing a bag". We have to bring all Maggie's supplies. In addition to cleaning things out I have been gathering supplies we will need for our four days out of the house.  The more things I put in, the more I think of.

Finally I decided it was safer to make a list which I've pasted in below. The ones with x's are already in the box, so I have dozens of things to add, but I can't do most until the last minute. Note this list does not include clothes for Maggie (there is one word that says "clothes") and does not include anything at all for Steve and I.

Can you imagine seeing house guest pull up and start unloading all this stuff to stay in your house?
I think I would pull the curtains shut and bolt the door and hide. I kind of want to anyway.

Time to repeat my mantra - it will all be worth it.
_______________________________________________________________________________

Equipment

Wheelchair

Tray

Dynavox and charger

pole

Feeding 1.5 cases Vivonex, feeding tubes and syringes

 Meds

pulmicort

 Albuterol

atravent, twice a day,

 pulmizyme – in fridge

tobi – in fridge

flonase

 prevacid

detrol

 80mg aspirin

calcium carbonate

Phospha Neutra

Claritin

trinessa 

 zinc oxide

nystatin

triamcinolone

 elidel

saline bullets  XXXX

Machines

SAT monitor (plus sensor)

Compressor (plus tubing)

Nebulizer (plus tubing and nebs)

Suction machines (plus canisters, tubes, little suckers, and catheters)  

Feeding pump – don’t bring feed manually

Vest machine – don’t bring – do manual chest pt

Oxygen – order concentrator from CHME

Supplies

Diapers (3 packs)

Chucks (3 packs)

Catheters (I box)  XXXX

Gloves (I box)   XXX

Wipes    XXXXXX

Qtips

Trach masks

Trach sponges  XXXX

Extra trach XXXX

Extra g-tube XXXX

Big bottle of soap

sanitizer

Vinegar

Masks (for tobi)

Roll of garbage bags

Skin creams

10cc syringes

Power strip

10-12 scarves XXXX

Music – IPOD and Player

Clothes

books.

Cultural Exchange

We spent yesterday morning up at UCSF getting some tests done. Maggie has been having trouble keeping her oxygen levels up and i was worried about pneumonia. It looks like a slight lung collapse. She is on antibiotics and should be ok in a day or so. Hope so. I'm supposed to go to out of town tomorrow for 24 hours.  We shall see. 

We were waiting to get her meds at Walgreens. I just sat in the chair because they kept telling me it would be "just a few more minutes" (we left after 45 min). Maggie was worn out and looked quite peaked. She had the oxygen hooked up but the was still smiling and talking with her dynavox. 

A  woman went by and gave me the puppy dog eyes. and I groaned silently to myself, thinking "here we go." She walked by several times looking at Maggie, clucking and looking sad. I ignored her. She got in line to pick up meds and stared, waiting to catch my eye. Finally I looked up and smiled at her. She was well dressed and I would guess from her accent that she was  South American. She asked with a thick accent how old Maggie was. I told her, " she just turned 17". She clucked."17, ohh my"  I waited. She then asked "Is she your daughter." I smiled and said yes she is. She sighed heavily. I  knew the pity was there and she just had to express it. I waited, but not too long. She then said in the saddest possible voice, while slowly shaking her head,  "It just breaks my heart."  

There it was.

I tried to say nothing at all because it didn't really warrant a response. She was talking about herself, not Maggie. She's entitled to feel and say whatever she wants.I don't have to agree with her.But the clucking continued and  she clearly wanted me to tell her how hard Maggie's life is.  I just met her gaze, smiled thinly and said politely but with very little warmth, "You know, she's just living her life." I busied myself looking at my phone because I did not want to continue the conversation.

The woman was perfectly nice and she undoubtedly meant well, but ... please. I cannot handle pdp. (public displays of Pity). Have questions? I'm happy to answer them Want a place to dump your pity party? No thanks. There may be a cultural element at play in this particular exchange, but I cannot be responsible for that.

I suppose I COULD have said, HEY, DON'T CRY FOR ME ARGENTINA" but that might not have been appropriate. Of course I laughed at the thought of that all the way home.  

Cross your fingers that Maggie decides to get better today. 
. 

A break from Spring break

Maggie is off school this week. It is her spring break.We planned a fun outing at least once a day in the morning before the nurse arrived. We haven't done that well. We did go shopping on Monday, we went to grandpa's house on Saturday and had a trip to the park on Sunday. Monday was just one errand in the afternoon. Tuesday we did have fun doing some shopping for the opening of baseball season - including a walk around AT&T park in Maggie's panda hat.

 (For those of you NOT SF Giants fans 1) why not? and 2) "Panda" is 3rd baseman Pablo Sandoval's nickname.)

Today was supposed to be another trip to Fisherman's wharf. The weather is fantastic and we were going to hit the wharf early. But it was not to be.

Early was redefined.

Tim arrived home at 1:00AM and the nurse told him to wake me up to come and check on Maggie. She was needing increased oxygen. I hung out for a while evaluating and basically told the nurse to marshall on. Yes. It was concerning and I needed to check in with the doctor in the AM. The nurse may have wanted more, but Maggie just wasn't sick enough to justify a trip to the ER in the middle of the night. Basically they (read "I") would have monitored her all night and I had a private nurse to do that. I went back to bed and tossed and turned until 6:30.

In the morning, Maggie looked better. The nurse left and I was in charge. She was doing ok, but I had to report this. i called the nurse practitioner. The message said she was on vacation but the other NP would be checking messages and returning emergency calls. Were we an emergency? No, not at that point. I chatted with my sister on the phone and kept an eye on Maggie. By 10:30 she was looking pretty pale. I told her O2 sat and it was alarmingly low. I put the oxygen on and decided to page the pulmonologist. (First time I have used her direct pager since she gave it to me a couple of months ago.) I was hoping we could just get an order for a chest xray and whatever labs Maggie needed. Nope. We had to go through channels. She told us to go to urgent care.

Urgent care has punted Maggie to the ER too many times for my liking. They decide based on her description alone that Maggie has to go to the ER. Maggie is not sick enough to need the ER and it is a waste of time and money to go there. I called Dr. Aicardi, her private pediatrician. As usual, they were extremely accommodating and we could be seen there at 11:30. Perfect.

We were there for an hour. Maggie had (another) breathing treatment and her numbers improved dramatically. We took a prescription along with orders for blood work and a chest xray to use if she got worse instead of better.  It could go either way. We waited for the drugs for 45 minutes and then gave up and went home, arriving around 2:00PM. By 3:00 PM I talked to the doctor and they changed the antibiotic they had just ordered. I needed to go back to Walgreen's to get the new drug. ugh.

Tonight Maggie's numbers are a bit lower again. She is a little worse, but not terribly. Still, things are not gong in the right direction. It looks like our outing tomorrow will be to the lab for the blood work and xrays.

Too bad. We had much more enjoyable things planned.

10-4(0) over and out!

Like every other good American, I am getting ready to file my income tax return. Of course before I can send it to the accountant to figure out, I have to do all the grunt work of going through the receipts etc to determine our deductions.

Because of Maggie's extreme medical situation, the medical decuctions are always the biggest part of everything. I generally keep every receipt throw it in a file and this time every year I regret not being more organized. I know there are better and neater ways to do this, but I'm still patting myself on the back for saving stuff.

Right now there are piles all over the dining room. I have the doctors and hosptials separated from the dentists and supplies. Once everything is separated, I make an excel spread sheet so that it makes sense to someone other than me.  If the spreadhseet is set up right, I can input the stuff easily into the accountant's form.

The single biggest pile is from Walgreens Drug Store. Maggie has a lot of prescriptions - I mean a LOT. I counted 166 prescription receipts, and a ton of others for supplies. I'll bet 162/166 of those are Maggie's. The rest of us might have the occasional prescription, but nothing ongoing.  I am also willing to bet there are other receipts in bags and pockets that never made it to my high tech filing system.

I can show you the Walgreens' pile because it's by itself on a sideboard. I can't possibly capture the rest of the medical and charitable stuff spread out all over the table. This doesn't even include most of the supplies which are delivered by other companies.

Don't be jealous.

 Oh and don't drop by for the next day or so either.

Glass Half Full

There was one particularly curious circumstance while Maggie was hospitalized. We had to be protected from the medicine, but not from the disease.

Because Maggie had a flu virus, the medical personnel had to take "droplet precautions".  That means they had to put on a mask when they came into the room. Also anyone who was going to touch Maggie had to also put on a gown and gloves. The reasons for this are obvious. Maggie's virus, like all viruses, was contagious. Keeping masks and gloves on protects the health care workers and the other patients form contracting the virus.Steve and I did not take those precautions. We had already been exposed anyway and we were not in contact with any other patient.

We were, however, required to wear special face masks when they administered the tobrymyacin because it is done via nebulizer and the medication is in the air. If one had sensitivities or allergies to that drug and didn't wear the mask they could have a reaction because they would be inhaling some of it. So we protected ourselves form the medication. Steve looked particularly good doing so, though, don't you think. I believe he's watching the Giants game in this photo. (Note Maggie laughing at him while she gets her treatment)

Maggie continues to improve, but also continues to need the oxygen supplement. The most difficult thing is getting her to keep it on. She yanks it off and various connectors go flying. I never did find one of the pieces last night.

But in the "lemonade from lemons" department, I did discover that the oxygen tank makes a perfect coaster for my glass of Cabernet. (For some reason Steve took issue with this and moved it as soon as I took the picture)  

Now THAT's what I call a glass half full.

what we have here is a failure to communicate

Maggie and I made a trek to Walgreens today. This is nothing new. I am at Walgreens at least twice a week, sometimes more. . I generally go without Maggie because the aisles are narrow and the pharmacy department is in the back making it tough to navigate her wheelchair in there. It is accessible, just tight. Today, I had to bring Maggie. The pharmacy was crowded which made navigation even tougher. We slogged our way through and waited in line to pick up the meds.


I always go to the same Walgreens. Maggie’s meds are numerous and complicated and staying in one place makes things a little less confusing. At least 20 different people work in the pharmacy department. Not all at once, of course, but I am certain that between pharmacists and assistants I have seen that many different faces. They are very helpful. In fact, if I had to grade them, 15 of them get an A. Two get an A++There are a couple of b minuses and one gets an F.

Guess who waited on us today? That’s right, F for Friday.

Ms. “F” retrieved two of the meds but the one I came in for was not there. I asked about it and she said.” No. You didn’t order it.” Actually, I brought in the prescription myself last week. (Check computer again) “You picked it up on the 14th”. Well I picked up what you had but it wasn’t filled and they were supposed to order more. (checks computer again) “Oh then it’s too soon.” Too soon for what? “Renewal” I am not renewing anything, I did not get the full amount. This is a permanent prescription and there was only enough in stock for three doses.

Just as she does EVERY TIME she waits on me, she directs me to the drop off window to present my questions. I look eight feet to the right to the drop off window, which had a line about eight people long. I said I am not going to stand in that line. I just stood in this line to get here. You must understand that the drop off and pick up windows are openings to the same room. From the outside its two lines and two windows, but the two clerks are standing almost together. Moreover, shock of shocks, they are using the same computer system.

Every other clerk in that store deals with whatever questions arise with their customer. Ms. F just refuses – or at least she does with me.

I drew in my breath and said. No. I will not go over there. I am not here to drop anything off; I am here to pick it up. You are the pickup woman. You need to find out why it is not here. If you need to ask her do so, SHE’s RIGHT THERE. She simply turned and asked the woman who said “Oh, I got a communication error”. Clerk looks at me and repeats this in a very serious tone,” she got a communication error”

As though that explained anything at all.

She was perfectly satisfied with this explanation but I was confused. I asked what that meant and she said she did not know. (I think that’s why she was satisfied.) She told me to have a seat so they could work on it. The seats are right between the two windows. She was determined to get rid of me.

It worked. I gave up and went home. Maggie was at the end of her rope and we had to leave. I have to go back in the morning and hope against hope that she has the day off and I get Ms. A++

Communication errors…They seem to be going around.

Spoke too Soon

I should never have discussed Maggie’s good health and her ability to stay out of the hospital for all of 2008. No. She is not in the hospital, but 2009 did not start out well.

The nurse left early on New Year’s Day. I was up at 6AM. Maggie was awake, but just barely. I worked on my computer just outside her room and let her drift back to sleep. I suctioned her every few minutes, but she was really sleeping. For a long time. I started to get a little concerned because it was so unlike her. I wrote that I thought she was adjusting to her teenage status. Nope.

When I started her morning routine at 9AM, she was already a bit listless. Not enough for me to freak out about, but noticeable. Without getting too graphic, there was a serious – and I mean serious -- diaper situation. Two loads of wash serious. Worse than I have ever seen with her. Steve and I tried to clean her up but this was too much. We had to just carry her to the shower chair and hose her off. She remained listless. We had several more incidents like that. We just treated the symptoms with pedialyte and over several hours she perked up more and more.

At 6PM the afternoon nurse went to give her the antibiotic and noticed a problem. The brand new bottle that we opened last night was empty. The night nurse gave her the entire bottle – 60ML instead of 5ML of Cipro. He confirmed it when I talked to him. He realized he made an error but didn’t think anything would happen – and he didn’t tell me before he left. That is 12 times the dosage. Of course her body is going to react. Sheesh.

How could this happen? There are orders in the chart specifically listing the proper dosage. Moreover, commone sense should kick in at some point. No one take 60 mls of an antibiotic. That is two ounces. The largest adult would not take that amount. I know it’s a mistake, but it’s a mistake that could have been disastrous.

She is lucky it was just diarrhea. It could have been much worse. I called her pediatrician, who is a good friend of mine to ask if there was anything else we should be worried about. She wasn’t even the doctor who prescribed the cipro and it’s New Year’s Day – but I can call her anytime, which is an incredible gift. She talked me down and told me things that *might* arise. I am on alert, but was not too worried at that point.

Again, I speak too soon. At 11:00PM last night Her fever spiked to 102.4, which is the highest she has ever had in her life. Also we have to take her temperature under her arm so technically it’s a bit higher than the read out. Considered the emergency room but decided to see how the night went. The fever came down a bit with Tylenol, so I thought it was safe to stay here. We can pretty much do it all here and Maggie is less freaked out. She has a one to one nurse with her here, which is better than I’m going to get in the ER. The nurse was gong to wake me if ANYTHING changed for the worse.

I slept for a few hours with one eye and one ear opened. Not very restful but better than nothing. The fever is gone for now, and her heart rate is down out of the stratosphere. I have to call Pulmonology today to see what to do next. She’s supposed to be on that drug for another week, but I don’t want to give her any more of it until her body recovers from this overdose. I suspect they will tell us we have to head up to UCSF this morning, which is not what I want to do, but it’s better than sitting here wondering.

I cannot let my guard down for a minute. It is exhausting.

Shake ups

There were two big shake ups in this house over the weekend. One was geological, the other medical.

We had an earthquake Friday night. It wasn’t big – only 4.2 – and I didn’t hear of any damage or injury. It just shook the house causing that noise. If you haven’t heard the noise, it’s hard to comprehend. The entire house sort of groans. You wonder for a moment if this is the start of a disaster or just a mild disturbance in the force. This time it was the latter. It’s almost always the latter; but that moment of wonder causes every hair on your body to stand on end. Unlike hurricanes, earthquakes hit without warning. You can’t prepare, except generally; but you don’t have the dreadful hours or days of anticipation either. It hits, last a few seconds and it’s over. Those few seconds, though, make you keenly aware of everything you have to lose.

We were watching television when it hit in two quick jolts. At the first jolt Steve and I just looked at each other as if to say, did you feel what I felt? Before the second one hit a split second later we were both heading for Maggie’s room. It’s instinct. If this is the start of a larger quake we had to be ready to grab her. It was over before we made it the 20 feet to her room. Maggie grinned at our sudden arrival. She must have felt it because she was lying in her bed, but she did not seem any worse for the experience. The nurse in her room didn’t feel the quake at all because she was in motion when it hit. Crises averted. Return to the television.

It was a reminder that things can change on a dime. Or a warning that things were about to. Maggie gave us a scare yesterday too. It’s hard to describe how volatile Maggie’s health is. She can be happy and laughing one day and in the Intensive Care unit the next. I knew something was not right by about 8 in the morning. I cancelled a planned outing to the park and watched her very carefully. She was so listless that I worried about her shunt and considered a trip to the ER. But it didn’t really seem like a shunt problem and I couldn’t quite articulate what was wrong. So I waited, which is not without risk, but I have learned when that is ok. I’m glad I did. I finally figured out what was going on in the evening.

Maggie had been given a drug that is too strong for her and she was dehydrated. This happened once before several months ago. Apparently the new chart (that I created) failed to note the previous problem. I removed that drug from her cabinet a couple of months ago, but the pharmacy sent another box to complete the Rx and I did not intercept it. Once I figured out what happened we started her on pedialyte to balance out the electrolytes and this morning she is back to her feisty ways. Well, about 80% back. In fact she just threw the pillow out of her bed because I’m on the computer and not paying attention to her.

This is why parents should not be running their own nursing agency. Maggie is too fragile. She takes something like 24 drugs – though not all of them every day. Mistakes are part of the deal. Someone qualified should be overseeing Maggie’s care. The individual nurses covering the shifts do not have the overview. And though I have become quite well versed in managing her care, I am not a nurse. It took me all day to realize what was going on and I had no one to discuss it with I did not have a nurse for yesterday’s shift and Steve was gone all day so it was just me and the parade of horrible that kept replaying in my head. It’s exhausting and scary. Like an earthquake, it shakes me to my core. And then it’s over.