Saturday, January 30, 2010

A Shoulder To Cry On (or over)

It's 6:00 AM on Saturday morning. I'm waiting for the coffee to finish so I can hit the road. I'm spending the day in Sacramento today. I have a full day class of MCLE - Mandatory Continuinng Legal Education. My  law school hosts this every year. It's great, I can pick up a bunch of credits in a day and see old friends from law school at the same time.

I learned on Thursday evening that the injury to my shoulder will require surgery. I have to talk to the doctor on MOnday. So far I have only a voice mail message and a report of an MRI that I don't really understand. He says there are two tears that have to be repaired.


 Not really sure how I am going to handle everything afterward. I won't be able to lift over 10lbs for several weeks. That means I can only take one appendage of Maggie's . I will rotate which one I use to make sure she wears evenly

It's funny. In one way I am sort of relieved this is something "fixable" and the results of the MRI validated my insistence that something was VERY wrong. But, on the other hand, being wrong would not have been terrible. Now I have to figure out what type of help I need and how to get it. I suddenly wish Tim hadn't gone back to school. Oh well I'm just going to have to find someone with strong shoulders. Perhaps Charles Atlas is still around.

Thursday, January 28, 2010

The Paper Chase

We continue to try to make our tall skinny house work for Maggie and her wheelchair. It is an ongoing battle and getting around requires lots of rearranging. I think nothing of stepping on the seat of the easy chair in Maggie’s room to get the back door opened or to get to the bathroom. If Maggie is sitting in her chair in her room, that is the only way to get by, unless you carefully maneuver the chair out of her room. It is faster and easier to just climb over furniture. I do not even give it a thought. The problem extends beyond Maggie’s room, though. The downstairs of the house is in constant flux to accommodate Maggie’s needs.

With the boys away at school, I have two empty (or somewhat empty) rooms upstairs in which I could work. Instead I work in a corner of the dining room just outside the door to Maggie’ room. This way I can help the nurse or tend to Maggie if the nurse is not here. The dining room is our “everything” room. We do not have a hallway leading to Maggie’s room; you have to go through the dining room. The table is off center in the room so that her chair can easily fit. We eat every meal at the dining room table (when we are not in front of the television) because what was once the breakfast room has been converted to Maggie’s room.

All the office equipment is in one corner of the dining room, and the dining room table collects everything from important papers to junk mail. Because I use it as an office, it is often spread out with my projects, nursing papers, or any number of other things.

I am buried in paper in this room and there is no escape.

Periodically I organize it all and vow not to let it get like this again. Today is that day. First, I remove the junk. Junk mail, yesterday’s newspaper, printing jobs gone awry etc. go right in the bag. You can reduce every single pile of paper by at least 1/3 by keeping a recycle bag handy. Once the obvious junk was gone, I decided to go further. I was amazed at the amount of waste we generate, and most of it is not our fault.

We receive dozens and dozens of insurance statements every week. Every doctor visit, x-ray, medical supply delivery, oxygen fill hospitalization and everything else sets off a flurry of papers. We get bills we are instructed to ignore pending the insurance companies handling. Once the insurance company pays its portion, we get another set of papers telling us so and advising what we owe, if anything. I have papers verifying that the oxygen tank is filled, and that the supplies on my shelves have been delivered. I know that. I do not need a piece of paper telling me what I already know.

Everything goes through the insurance company, whether it is covered or not. The insurance company then sends a statement telling whether or not the claim has been honored. With each claim are two pages giving instructions on coverage disputes in three languages. Sometimes they save postage and put more than one claim in an envelope, but still each claim has these two extra sheets. One I just opened had 12 pages, four were claims and eight were garbage/recycle. That means for every paper I kept I threw away/recycled three others, counting the envelope. That is an incredible waste

Every time I get a prescription filled at Walgreens, I get three receipts and a set of instruction on using the drugs. I understand the necessity of this. However, do I really need a page of instructions for 13 medications every single time I refill them? Of course not.

How can I stop this madness? We used to have the recycle bin right next to the mailbox in the basement and a lot of stuff never even made it upstairs. That worked for a while but then we had to move the recycle bin to the backyard so that we could get Maggie’s chair though the basement to the backyard where the elevator takes her upstairs. I remember long ago reading about a man in Minnesota or somewhere cold that used all of his junk mail to heat his home all winter. I would happily send this stuff to him because he is a genius, but I would rather not get it at all.

Back to the piles. Unfortunately even after culling through the junk, I actually have to do something with the stuff that is left.

Do me a favor. Do not print this.

Tuesday, January 26, 2010

Pshaw, it's nothing.

I have always known Maggie was a tough chick, but I have a new appreciation today. Maggie has had so many surgeries that I have lost count. I know it is over 70. That does not include other “procedures” like CT scans, MRI’s and other non-invasive tests. There have been hundreds of those. If procedures do not hurt and are non-invasive, I do not think much about them. It is just no big deal. It could go something like, "Maggie has an MRI scheduled at noon, but I can meet you at two, does that work?"  No more. She gets my full attention and respect for all these procedures. Generally, she has to be sedated for these tests because she cannot possibly stay still. That is a lot of drugs in her little body, which sometimes requires an IV. That just exchanges one stressor for another.

A couple of weeks ago Tim had to have an MRI for his injured knee. He had one last year and expressed concern and trepidation about the test. I pooh poohed him. Of, c’mon, it’s 20 minutes and it doesn’t hurt. He did fine.

Today it was my turn. I was more than a little freaked out. As I was entering that very small tube with my bad shoulder fixed under some gizmo, I felt the panic starting to rise. I closed my eyes and said about 1000 Hail Mary’s. When it was supposed to be finished, the person said he had to do it again because there was movement in my shoulder probably from my breathing. Right. That did not surprise me. I was hyperventilating the whole time. I concentrated on slowing my breathing and started the Hail Mary’s all over again. I was afraid to move my “free” arm (not that there was much room) because I envisioned getting it stuck as I was coming out of the machine. It was wedged uncomfortably against the side, but I just left it there for the 20 or so minutes I was in the machine.

When I got out I texted Tim to tell him I now understood his fear. He definitely has a bit of claustrophobia. He went in feet first and could look around the room and he was still freaked out. I went in headfirst and learned almost immediately that he inherited that claustrophobia from me.

I took the bus home from the place but I needed to take a few minutes to collect myself before I hoped on the bus. I sat down at Starbucks and had some hot chocolate.

I felt like a huge baby. When Maggie gets home I am going to give her an extra hug today to start to make up for all those MRI’s that I thought were nothing.

She will probably laugh, though, because my daughter is a stud.

Friday, January 22, 2010

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.

Thursday, January 21, 2010

Dog gone it

Something someone said about allergies brought this story to mind:

A few years ago, Maggie was in the hospital for one of those long stretches – maybe three weeks. Those are hard on Maggie, of course, but they are also tough on the entire family. Out home life is completely disrupted because I stay with Maggie the entire time. The boys, who were still at home had to adjust to a house without mom and generally without dad too. Steve came home to sleep and usually fed the boys, but between work and the hospital, he was not at home very much.

Of course, the boys worried about Maggie, but these hospitalizations had become routine for all of us. There were certainly times Maggie was in grave danger, but we only told the boys when it was absolutely necessary. We did not want to alarm them prematurely or (God willing) unnecessarily.

They spent a fair amount of time visiting in the hospital as well. On one visit, Eddie was laying at the foot of Maggie’s bed reading a magazine when the young resident came in with some results of an allergy test. Maggie has multiple food and medication allergies, which we already knew about, but this was the test for allergens in the environment. Turns out she has a lot of those too. Cats, dogs, mice, dust etc

Her allergy numbers for dogs was really high,.(And yes we had a dog then and still do.)The young doctor, being very thoughtful, did not want to say this in front of Maggie’s brother. Rather than give the information directly, he just cited the numbers allowing us to draw our own conclusions. Presumably he figured Eddie wasn’t paying sufficient attention or wasn’t going to catch the gist of what he was saying. What he didn’t realize is that my boys spend a lot of time in hospitals and can understand doctor speak very well.

Eddie whipped his head around and said, “Maggie’s allergic to dogs??!!??”

The resident looked very uncomfortable to be part of this moment when a kid learned that his sick sister might mean we had to get rid of the dog..

I said to Eddie evenly, “looks like she is”

Eddie went right back to his magazine and said “Then Maggie’s going to have to move”

I just laughed. It was never really an issue. We use life as a measure, not just a test result. We have to or Maggie would live in a bubble. Maggie had peacefully coexisted with the dog since she was about three years old. Having this test result information was not going to change anything. Eddie knew that, I knew that, even Maggie knew that, but that kind young doctor looked very confused.

Wednesday, January 20, 2010

Shouldering Responsibilities

I cannot imagine why my shoulder injury from last summer is not yet resolved. I have been dutifully going to physical therapy and doing the exercises for four months, but the pain is just getting worse. It could not possibly be that my body’s failure to heal itself is due to the constant lifting of a certain 70lb daughter of mine, or wrestling with her wheelchair, or piling on all the equipment. Could it?

This all started last July 1 when we were moving my aunt out of her assisted living place, I helped my nephew move a television stand. I knew immediately that it was too heavy for me, but I continued anyway – because sometimes I forget that I’m not 18 like he is. My arm hurt for a couple of days. I felt like it was a muscle strain and it would go away soon.

It did, but not entirely and then it started to get worse. By August 1, it was hurting all the time. By that time, my aunt had passed away and we had to deal with the funeral. Then there was her apartment to clean out and her belongings to be distributed. By then it was incredibly painful. . I made an appointment at the orthopedist for September 17. Though the pain was in my upper arm, the injury is to my shoulder. He took x-rays and thought I had a rotator cuff injury, bursitis and bony impingement. He gave me a cortisone shot in the shoulder (ouch) and prescribed physical therapy.

The cortisone shot relieved the pain and I started physical therapy. It seemed to really help for a while. After about six weeks, it started going the other way and the pain returned. Presumably, the cortisone shot started to wear off. Now my shoulder is as painful as it was in September. I cannot reach for anything. Putting on my coat is excruciating, unloading the dryer is painful and closing the car door after I sit down is becoming difficult.

It is clear that all the lifting I do is exacerbating the problem. I told the doc about Maggie and her need for full care. He jokingly said, “Don’t lift her.” Ok, she can just sit in her chair for a couple of months. She does not need to lie down or get a diaper or anything else. He was kidding because he realizes that is impossible. However, continuing as I have may mean recovery is impossible.

Today I return to see the orthopedist. I will not get another one of those shots because I fear it simply masks the injury. Then I lift and reach without pain and likely do more damage. At least the pain is an indicator of which positions to avoid. I am hopeful he will order an MRI and we can find out what is really going on and determine what can be done to fix it.

I am not sure what I am going to do. There is so much physical work involved in caring for Maggie. If I need surgery, I am going to have to hire someone to help. The nurses are here, but they cannot lift her on their own and I do almost all of the lifting. Eddie and Tim are away at school and Steve is at work all day. Besides, his back is about the same as my shoulder.

I probably need to hire someone whether or not I have to have surgery. It is just so awkward. There are dozens of lifts a day, but they are spread out throughout the 24-hour day. I cannot have someone sitting here doing nothing for an hour and then spring into action.

We actually have a ceiling lift system, but there’s so much work involved in using it, that I probably do the equivalent of two lifts to save one. You have to get the sling under Maggie, which means moving her a few times, and then take it off again once she’s in the chair. In order to do that I pretty much have to lift her out of the chair. It defeats the purpose. I think it’s designed for a patient who can assist a bit more in her care than Maggie can.

I need Samantha Stevens from Bewitched to just twitch her nose and make things happen.

Monday, January 18, 2010

enjoy this, you must

The long weekend is winding down. It was quiet, and rainy - especially Monday. Monday was ridiculous. I had to cancel a planned outing with one of Maggies' friends. It seemed irresponsible to take out two girls with fragile health condition in the middle of a deluge.

On Saturday we took Maggie to the Presidio and walked around the park that is part of the Letterman Digital Arts "Campus". It is lovely. It's hard to believe there was once a military hospital on this site. Now it's lush and elegant and very wheelchair friendly. It overlooks the Palace of Fine arts, which you can see in this picture.

Brisco, the wonder dog is not thrilled with it because they enforce the leash rules and he prefers to be free. He's always a mellow dog (except when the mailman is anywhere on the block), but he behaves extremely well when Maggie's holding the leash.

The Letterman Digital Arts center is part of George Lucas' empire. The buildings have the coolest stuff from various movies. We can't go inside, but you can see alot of cool stuff from the windows.

Or you can just hang out by the Yoda fountain and drink in his wisdom.

Glad we did this before the storm hit. Yoda's fountain may be overflowing by the time this is all over.

Sunday, January 17, 2010

I'm with her

Hi, I saw this and had to post this. It was written by Collin Raye for his grandaughter who has a neurological condition. It is sweet, but its a tear jerker.

Oh, can't post the song, just the link. click it. You will smile.

Friday, January 15, 2010

I don't know Molly Hightower. I never heard of her before today. She went to Haiti for a year to work with disabled orphans. Wow.

She is a friend of my nephew. They went to college together. He was concerned because no one had heard from here since the earthquake in Haiti. He had reason to be concerned. Her remains were found in the orphanage in which she was working.

She kept a blog about her experiences in Haiti. ( I hope that brings some comfort to her family.

Only the good die young.

This article was forwarded to me today.

Eggs, over-whelmed

I learned something this morning. The word “overwhelmed” is redundant.

How did this bit of knowledge come about, you may ask. That is easy. I am completely overwhelmed by life right now. It struck me as odd that my ability to handle incredible stress on a daily basis sometimes fails me.

I thought perhaps generally I am just “whelmed” and today I am over-whelmed. Because I am a geek, I looked up the word “whelmed” and found this “to subject to incapacitating emotional or mental stress…see overwhelm

If you are “whelmed”, you are already “over-whelmed” You don’t even need the “over”

This may not be news to any of you, but I lead a rather stressful life. In the almost 16 years that I have been Maggie’s mother I have learned to deal with the stress of caring for and worrying about her every minute of every day. As I have often said, 1000 individual things that would freak out most people have faded into the whole tapestry of raising Maggie.

In addition to Maggie and the challenges that being her mother presents, there are the other, “normal” stressors that all of us have. These seem to upset me most. Perhaps it is because I am so stressed dealing with Maggie that the everyday life stressors are exaggerated. Perhaps it is because I live on the edge and it does not take much to push me over, Perhaps I think I should be immune from these because I deal with the Maggie stress so well. Perhaps it is just life.

I know I am overwhelmed and as the GI Joe cartoon says, “knowing is half the battle” But what do you do when life is coming at you from all sides?

What I do is focus on something small and positive and remember that all day. It is an easy trick, that I think I always did, but one that became clear because of something my husband said to me when we were first dating.

We were both in law school, which is a stressful place. Aside from the rigorous academic expectations and the incredible amount of work, there is the social aspect. Law school is like being stuck at sleep away camp with 100 people who drive you crazy. For the first year and a half, you only see the people you go to school with and they are all under the exact same stress you are. It is nerve-wracking to say the least.

One morning, after at least a dozen attempts I successfully flipped two eggs using just a flick of the wrist. Prior to that attempt, I ruined many eggs trying to make the perfect over easy egg without using a spatula or anything. I don’t even like eggs over easy, but I wanted to know how to do this. I had done one egg occasionally, but never managed to do two without breaking them. It was a personal success that meant nothing to anyone but me.

I went to school flush with my little victory and walked into a class. Immediately some classmate said some annoying law schoolish thing and I deflated. Steve looked at me and said, “remember the eggs” and I smiled.

It still works, and those eggs were flipped in 1984.

My advice to you today…remember the eggs in your life. It will get you through days - or 26 years --of being whelmed, over or otherwise.

Thursday, January 14, 2010

Specialist Day

Today is specialist day. That’s always fun. Nothing is wrong, it’s just time. I hoped to get these done over Christmas vacation, but those are coveted appointments and I did not call soon enough.

Maggie, like many kids with special health care needs, has several specialists. Pediatrics is already a specialty, so these are sub-specialists. We have pediatric Pulmonology, urology, neurosurgery, neurology, gastroenterology opthamalogy and others as needed. I am supposed to keep current with all of these so that Maggie’s meds and supplies can flow steadily. It is difficult to do that, especially when she is healthy in a given area. I am definitely of the “if it ain’t broke don’t fix it” school of parenting.

To the extent possible, I try to coordinate a couple of visits on the same day. I can minimize visits and the accompanying hassle by doing this. Besides, we are up there so often with urgent needs, over which I have zero control, that it is nice to exercise control when I can. That’s easier said than done. UCSF is an enormous medical center and these specialists are extremely busy people. Each department has its own layer of bureaucratic hell for patients to wade through.

There has been some attempt to coordinate the pediatric specialists by utilizing a “pediatric specialties” clinic. Makes sense, or it would if all the specialties participated in this clinic. Some do, some don’t. Even the ones that do are inconsistent in their approach. Appointments can be a nightmare.For me getting appointments on one day is a convenience, but I only live a mile away, so I can get there on separate days if need be. Some families come from hundreds of miles away becasue there are so few of these specialists around. If they have to come more than once it's extremely difficult, stressful and expensive.

I called the peds specialty number in mid December and was directed to a separate number for peds Pulmonology. Ok. Pulmonology told me the first available appointment was Jan 12 (two days ago) Ok. Now I need to coordinate this with gastroenterology (GI). Sorry, we don’t’ have any control over their appointments. Sigh. OK. I call the peds specialty number again and connect with Peds GI. They cannot do the 12th because the woman Maggie needs to see only sees patients on Thursdays. Sigh. Really? I am trying to coordinate this with peds Pulmonology. Oh. I can do that for you. REALLY?!?!? Great.

Why can GI control Pulmonology, but the opposite is not true? I do not know and I do not care. Its’ set up.

She asked which appointment should go first and I chose GI. Pulmonology will take longer because Maggie has ongoing infection issues there. In addition, they always run late. GI will be the shorter of the two appointments because Maggie is stable in that area and we will just tweak meds and feeding schedules, and they are always on time.

I do have to give GI a little ribbing however. I received a letter addressed to me indicating (in a rather chiding tone)that my child was overdue for a visit and that it was important to be vigilant about my child’s medical care. According to this letter, my child “Zachary” had not been seen there since January 09. Ok.

I do not have a child named Zachary and we were there in June.

Other than that, it was perfect.

Sunday, January 10, 2010

Watch the EYE!

Maggie’s favorite toys interact with her. If Maggie can hit a toy and make it talk, sing, beep, buzz or play music, it quickly becomes a favorite. As you can imagine, we tend to hold onto toys that fill this need. Fortunately, there are quite a few of them available.

We had a stuffed Poomba, a character from the Lion King, which said hilarious things when you shoved bugs in his mouth. Maggie quickly learned to shove her hand down his throat to make him talk. There was also a Rosie O’Donnell doll that spewed “Rosie-isms” (e.g. cutie patootie) if you hit her in the chest. To be fair, Rosie was designed to be hugged or squeezed, but Maggie could not coordinate those movements and, let’s face it, that is just not her style. Maggie found she could make Rosie talk by slamming her fist into Rosie’s chest, as both she and the doll lay flat on the floor. She would do it repeatedly. It was hilarious. Rosie finally died of old age and abuse, but she had a great run.

One of Maggie’s favorite talking toys was/is Mike Wisowski from Monsters Inc. We have a version of him that says things if you drop him on the ground or if raise up one of his arms Maggie could do both of those things and if she lifted up the arm and tossed it at the same time, as she was want to do, Mike would speak sentences in rapid fire succession. Unlike the adaptations she made from Rosie’s intended use, Mike Wizowski was actually designed to be abused and tossed around. The sayings were appropriate for that use also. You would hear a voice that sounded like Billy Crystal san things like, “Hey, cut that out” or "OW!", along with encouraging sayings like “Atta Monster” or “Mike Wisowski, on the job!”

Maggie’s favorite Mike saying was “Hey, WATCH THE EYE!” She would toss that toy around repeatedly, going through all the sayings, until she heard that one and then she would throw back her head and laugh uproariously. Everybody laughed at that Sometimes she did this 50 times a day. My dad really loved it. This activity gave my dad a better insight into Maggie. He realized from this that Maggie was doing things purposefully, and had a great sense of humor. Every time he saw Maggie, whether she was anywhere near the toy or not, my dad would greet her with “HEY WATCH THE EYE!” and send Maggie into peals of laughter.

Mike #1 bit the dust and was quickly replaced with Mike #2. He lasted for a long time, but was eventually abandoned to the bottom of the toy chest. He reemerged about six months ago when we downsized from the toy chest to a backpack. Maggie is enjoying him all over again.

The backpack works great because Maggie can reach in and throw everything hither and yon until she finds whatever interests her. Nearly all of the toys that made the cut are noisemakers of some sort, so there is always a cacophony of sounds as Maggie tosses things around. As we pile them back in, you hear all sorts of conversations and noises coming from the backpack and that is hugely entertaining. It is like the toys in the Toy Story movies talking to each other. In fact, I am sure Buzz Lightyear and Woody are in that bag too, as is the Don Rickles Mr. Potato Head.

The other day I was alone in the front room putting all the toys into Maggie’s backpack. As I stuffed something in at the top, I heard Mike in the bottom of the bag say, “HEY WATCH THE EYE.” I laughed all by myself. Of course, it made me think of my dad, who has been gone three years this week, and I smiled all over again.

Friday, January 8, 2010

Who ya gonna call?

I am home alone today. This is not unusual, but for some reason I’m more acutely aware of it than normal. Perhaps because my husband and son are out of town and I didn’t interact with either of them this morning. I got up and did the morning dance to get Maggie out the door and came back to a quiet house.

I am busy. Tim's called three times regarding transcript stuff, and I’m trying to do the tax work for Maggie’s nurses. I have to tally up their hours for 2009 and prepare appropriate forms (with the help of Turbo Tax Home and Business) . I pay them and then get reimbursed from the state. If I don’t have tax forms for them it looks like I have a ton of income from the state, whihch would trigger tax obligations that I don’t owe. This way everything is accounted for just the way Uncle Sam likes it. It’s tedious work, but not difficult.

For some reason I am having trouble concentrating. I keep hearing a noise. First I think it’s just the quiet or the creaking of our old house, or the heater or something. But it keep bugging me. If I lean way over my desk I can see the kitchen sink to see if there is water dripping periodically. Nope. I get up and go to Maggies’ bathroom to see if the shower of sink is dripping. No. Heart sinking, I run upstairs to see if something is leaking up there that might be coming through the wall. Nope. All is cool. What could it be?

It seems to be coming from Maggie’s room. The oxygen tank sometimes hisses, but that is all good. Her cd player is off, as is the space heater the radio and all her medical machines. But I still hear it. I open the top dresser drawer and find the source.No paranormal activity here. Apparently, someone put Maggie’s “roll up keyboard” away in its sack without turning it off. The batteries are all but dead now and it is just making this “click” noise every 20 or 30 seconds.

Blessed relief.

Now it’s too quiet.

Wednesday, January 6, 2010

One of these things is not like the other,

I'm glad I posted that picture of the deliveries yesterday. Something about it caught my eye. One of the boxes of Maggies' food had different writing on the box. I had to investigate. Sure enough, one box was a different type of food.

Good thing I caught that. For most people that would be no big deal, but Maggie is allergic to everything under the sun. Allergic enough that she has landed in the hospital several times because of allergies. Using the wrong food could have been disastrous. Presumably we would have noticed when we opened the box, but the cans are exactly the same size and shape, only the labels are slightly different.

Funny how I noticed it in a photo but didn't notice it while I was looking right at it.

Tuesday, January 5, 2010

Where do you want it Ma'am?

Part of managing Maggie’s life is dealing with the supplies. She has a TON of medical supplies to be ordered, delivered or picked up put away and replenished both for home and for school use. I suppose we all do, but I cannot get what Maggie needs at a grocery store or even a drug store for the most part. I have to deal with medical supply companies, pharmacies and warehouse stores. Receiving every batch of supplies comes with at least one phone call, but generally requires several.

There are at least three medical supply companies in my life at any given time. Each has its own specialty and its own set of rules. The liquid oxygen is refilled every two weeks at the most, and that means someone has to be here to let the guy in and keep the dog from eating him He’s a nice guy and comes from the company that hands all the respiratory supplies. They are very easy to deal with. I call, tell them what I need and it comes in a few days via UPS, unless they can coordinate it with the oxygen delivery. Just yesterday, the suction catheters, nebulizer kits and oxygen tubing arrived.

Yesterday I was also expecting a delivery from the company that supplies her food, tubes, feeding bags etc for her GI needs. They too are very easy to deal with but they use a private delivery service that has some strange characters in its employ. They inevitably come well after dark and leave nine boxes of food and supplies in my hallway. One person left it in the driveway and drove off. Fortunately, I saw him and got the stuff before someone took it or the rain started. Last night all those boxes arrived just as dinner was coming out of the oven. I was helping the nurse with a procedure and had to leave the bedside, corral the dog and greet the strange man warmly as he piled up boxes. (see picture above) All this was happening while the timer was ringing on the stove. It was like a bad sitcom.

The third company handles the diapers and catheters and that stuff. That means two more HUGE boxes, which should arrive next week. This company is more annoying, but improving every month. On the other hand, maybe I am just getting better at complying with their rules. Unfortunately, the diapers they send are just short of what Maggie needs in a month and I have to order a case every other month from a local medical supply store. You would think I could just increase the order from this company, but no can do. They send the amount approved by the state under this program not the amount Maggie actually needs. They are not allowed to send me more, even if I pay for them. It is stupid, but that is not their fault. If I want more, I would have to go to a hearing. I would win, but at what cost? It is easier and cheaper to go to Clement Street and get them from the local dude.

On top of that, there are the meds that I need to get from Walgreens. I am a regular at Walgreens. Maggie is on eleven prescriptions when she is healthy and more when she is sick. Right now, it is thirteen. Over a period of a year, I managed to work it so they all renewed at about the same time, or at least in two batches a month. That cut my trips to Walgreen down considerably. Of course, the two antibiotics throw a wrench into that. I am going back today for the fourth time in a week. I love the people there, or most of them. I have definitely learned to avoid certain employees.

Then there are just the regular over the counter meds and supplies like wipes, gloves etc. Those suckers are expensive. I get as many as I can as Costco. Giant bottles and boxes of things are great prices.

Juggling and chasing all this is a pain, but it is part of the deal. The real problem is storage. I wonder if I can get economic stimulus money to rent the house next door to store Maggie’s supplies.

Monday, January 4, 2010

Today? Really?

Ahhhhh Monday. The first full day weekday of 2010. Today was to be Maggie’s last day of winter vacation. School was to resume tomorrow…or so I thought. Today, Monday, was some sort of teacher in service day, or so I thought.

I asked Lucy, the night nurse, to get Maggie up early today. Maggie has really been sleeping in this vacation. I wanted her up early so she will be on schedule for tomorrow. She was up and in her chair at 7:05, which is great. She was still wearing her pajama pants, but that’s cool. It is a good thing she was up and at ‘em because about 5 minutes later the doorbell rang. I thought, "Who in the world is at my door at this hour?" I walked through the kitchen to the hall, my heart dropping with every step. It couldn’t be Janice, the school nurse, could it? School does not start TODAY, does it?

Indeed it does.


Not only was Janice at the door, the school bus was outside with the lift down waiting to load Maggie and her wheelchair. Janice just laughed because she thought I was kidding about classes starting tomorrow. Then she looked t my face and realized I had really screwed up. I told her I would drive Miss Daisy myself. Janice had to get to school to deal with her other patient. She rides the bus with Maggie and deals with both Maggie and another child while at school.

Lucy had not left yet because she was finishing some charting. She helped me get Maggie ready to go to school. Maggie was so happy and laughing so hard at us running around like chickens with our head s cut off. Lucy had already done the feeding and diapering, which takes the longest amount of time. She changed Maggie out of her jammies while I filled the oxygen tank, programmed her talker, found the tray and pole and loaded up the suction machine and a bag of supplies.

I loaded Maggie and her gear into the van and took off for Mission High. Maggie was about 30 minutes late for school, but she was so delighted because she LOVES school and the fervor of getting there just added to her joy. She will be a tired girl this afternoon, that is for sure. I am going to have to go get her too because Janice’s car is at school and she cannot ride the bus with Maggie. That is fine. Maggie can get the additional joy of riding the bus tomorrow. You may think that is sarcasm, but it is not. Maggie thinks riding the bus is hilarious.

Suddenly I have five free hours. As soon as my blood pressure comes back down to earth, I am going to enjoy it.

Saturday, January 2, 2010

Happy New Year 2010

Hope everyone has a wonderful 2010.

Maggie and I spent New Years Day just hanging out and wanted to say Hello!