The Room.

Three or fours years ago we had the floors in the house refinished. We had to move everything out of the living room, dining room and the hallways and steps. We also had to vacate the house for several days when the work was done. The dust and the fumes made vacating the smart thing to do and our inability to walk on them made vacating the only thing to do. We stayed at a friends house across the bay and thoroughly enjoyed their swimming pool during our exile. When we returned, the place was gleaming.

At that time there was wall to wall carpeting in Maggie's room, so that was left undone. If I recall correctly, we took out all the equipment, covered the bed and dresser in plastic and sealed off the doors to the room to prevent that fine dust from getting everywhere. That was successful, though we gave it a thorough cleaning before putting Maggie back in there. (Fine dust and tracehstomies are a bad combo.) A year or so later it was clear that carpet had lived its useful life and we pulled it up. The wood floors in Maggie's room, which adjoins the dining room were in sorry need of refinishing.  The plan was to do it all again this time focusing on the bedrooms. But we never got around to it. The upstairs bedrooms aren't too bad, but Maggie's room with its constant use and punishment was kind of sad. Still with all that equipment and her giant bed and the area rug, the need to refinish the floors was mostly hidden from view.

After Maggie passed away we returned or donated the equipment and gave the bed to a friend who also has a disabled child. Suddenly there was a room available, but we didn't have the heart to do anything about it. The giant storage shelf stayed put as did Maggie's dresser. The chair the nurses used sat empty in this half empty room. The condition of the floors became obvious as did the need for a paint job. Each of the levelor blinds had at least one broken slat because Maggie thought it was hilarious to yank on those things as hard as she could. (That still makes me laugh.) Since there is no longer a need for privacy in that room, I just left them fully opened, that way the damage was not as visible and the room was filled with light.

 In the last few weeks, Steve has attacked that room head on. He took down the storage shelf and the broken blinds,  he moved the remaining furniture into the dining room and refinished the floors using his belt sander. We closed it off and he put on the several coats needed to make it gleam. Once that was done, he painted the room, removing the marks where the lift once hung from the ceiling. He put the area rug back in along with the chair the nurses used. The intention was to get the rest of the stuff out of the dresser and put that somewhere else, but I just put it back in the room for now. One can only handle so much change at once.

The plan is to put my desk back there and stop working at the dining room table. The problem is the desk is completely covered with papers and crap upstairs and I refuse to move it until that's cleaned off. I may accomplish that with a sweeping arm motion and deal with the ramifications later, but I haven't done anything yet. Part of me hates changing the room and part of me can't wait to sit right where Maggie's bed was and continue to draw inspiration from her.

We were afraid to make the changes to her room. We had enough change. But now that the work is done, it feels great. It doesn't feel like we violated a sacred space, in fact just the opposite. It is still "Maggie's room."  It is sunny and bright just like she was.

Here is the space with Maggie trying to escape from her giant bed.

And here it is now, freshly redone with Georgie curled up on the rug. Maggie is there, believe me. 

I will sit just about where her feet are sticking out of the bed in the second picture. She will keep kicking me forward. 

And that is ok with me.

Hey! Another Saturday Night

When my head hit the pillow on Friday night I let out a long and satisfied sigh. There is nothing like sleeping in your own bed after several strenuous days elsewhere. There was so much going on over the past few days that sleep was in short supply. The  nurses all showed up while we were in the East bay, which was great. But I would get into bed at night and stare out the window unable to settle down. That changed when I got home. Last night as soon as the nurse arrived for the night shift I went to bed and slept like a rock. The sound of the alarm at 7AM interrupted the first solid sleep I've had in a couple of weeks.  It was wonderful, but not enough. I was tired all day today and need a few more nights like Friday to feel back to normal.

Tonight is not one of those nights, though. There is nothing worse than getting a phone call at 10:30 from the night nurse advising that she is unable to come to work tonight. It's too late to get a replacement so mom is on duty. Even if she had called earlier so I could get a couple of hours of sleep first... but nooooo. She has to wait until the last minute. I did head upstairs and sleep for an hour while Steve handled Maggie,. but that was just a teaser. Right now it's nearly 1:00AM and I am on duty until 7 when Steve will come back down to relieve me.

That means I will be completely useless tomorrow and Monday. There always seems to be a delay until I can recover from staying up all night. I couldn't even do it in college, so this many years later, fergedddaboutit. When you add in the sleep deficit from earlier this week, it's clear that I won't be right for days. If you run into me and I don't greet you, please understand.

So it's Maggie and me tonight. I connected the tubing to the compressor and attached the oxygen. I set out the supplies I will need for the night and will get to her meds next. the sat monitor is hooked to Maggie' finger,  I am not using the feeding pump tonight but have opted to feed her manually. I find it easier than wondering if the automatic feeding is leaking.all over the bed.  The suction machine is poised and ready to do its thing all night long. Maggie, who became very riled up with excitement when she realized mom was on duty,  is finally falling asleep. I try to tell myself  her being up so late means she will sleep harder longer, but I now from experience that 's not necessarily the case.

Staying awake is not difficult because there is so much that needs to be done. I have suctioned her three times since I started typing this. Preparing and delivering the meds takes at least two hours.  In between I have to feed and change her and do the catheterizations.

If there is down time, which is unlikely I can continue to unload boxes to get us moved back in.  But I probably won't. The move back into the house will be pushed back another day or so. C'est la vie. Right now my goal is to make it until 7AM when I can return to bed. There will be another contented sigh when I hit the sack in the morning, but it may be inaudible as I will likely be asleep before the head makes contact with the pillow..

.

Home again

Home again. Wow! The floors look fantastic. Everything is sooooo clean!! check out the before and after pictures of the same spot in the hall. This was a particularly bad spot near the  front door.

It was an arduous task from start to finish - and we're not finished yet. Tim and my nephew Matt moved the big furniture back into place but shelves and cabinets remain empty. But there is no deadline.  It's a good thing too, becausee we broke the giant china cabinent/sideboard in the dining room as we were putting it back. (that's the royal "we" I was in the next room. Nothing will be going back in there for a while.

Maggie is glad to be home. she enjoyed the adventure, but she was more than ready to return as we all were.

I want to sleep for a week.

Exile Day 2 - 2.5

Wednesday morning. We are half way through our adventure.  We really are getting the hang of things here. This house is fully equipped with all the staples, supplies, washing machine and everything else we could need.  There is no hot water this morning, but I will put Steve on that case when he wakes up. The cold shower certainly woke me up, though! (update – Steve fixed it)

We do not have internet access or television. I don’t care about the television but I do miss the internet. I can get and send email and post pictures to facebook on my phone, but nothing else.  Yesterday Maggie and I rode all over the place looking for a Starbucks so I could get some documents sent.  I did see a restaurant with free wi-fi, but I did not know what I would be walking into and Maggie is often a lot for people to handle. If one is sitting down to a full breakfast, they might not want the suction machine next to them. Starbucks is a known commodity; people are coming and going and generally not eating.  After searching for a Starbucks to the west and north, we finally found one about a mile South of here. Of course, when I told Steve he said there is one about 6 blocks to the east.  Go figure.  Today will be faster.

The mornings start cool and overcast but this sun comes out before noon. Yesterday seemed a little hotter, maybe mid 80s so we delayed heading into our backyard paradise. Even though we had Maggie in the shade on Monday, her arms and face were a little red. I did not want her in the sun too long because she’s such a delicate flower. We probably headed back there around 4:00, but we did not come back in until 7:30 or so. Maggie had specifically asked to go swimming but we needed to wait for Steve to come home. I just do not feel confident getting her in and out of the pool by myself. We have to keep her trach above the water level so a little slip could be disastrous.   She was only in the pool for a few minutes, but she had a fantastic time.

We stayed in the yard and barbecued steak that I purchased at a local butcher.  It was amazing.  As the guy was ringing up the steak, I spied some fresh Portuguese sweet bread and bought it for Steve. We also had fresh zucchini from the amazing vegetable garden in the yard. We were told to help ourselves to the veggies and we took that seriously. I told our friends/hosts that we have to come back next month because the tomatoes are not yet ripe.

Today my sister is coming to visit and we will likely have a largely repeat performance of yesterday.  Somehow, we will muddle through this horror. 

Steve stopped by our house Monday night to check on the work on the floors. The sanding is complete and the first coat applied. We asked for three coats, which should be done by tomorrow morning. They will be dry enough for us to return on Friday morning. Then I will have internet and TV, but I will have to leave the sunshine, swimming pool and vegetable garden here. Hmmmmmm.

Exile Day 1

WOW.  I did not know my body could be quite so tired. Getting out of the house with all the necessary supplies and cleaning out the entire downstairs of the house was not easy.  As we stood in the empty house waiting for the floor contractor, I silently fretted that he would not show up. I had no reason to think that other than fear.  Can you imagine? We would have been up the proverbial creek.  He did show up, right on time, and started filling my house with his equipment.

Maggie, Steve, Brisco (the dog) and I headed to the east bay to stay at a friends’ vacant, but furnished (!) house.  We drove downtown in separate cars so Steve could leave his at his office and drive across the bridge with us. I have to have another person in the car with me if we are driving very far because Maggie needs assistance.  We arrived, unloaded the car and then took Steve to the BART station so he could commute back to the City to go to work. We did not even bring Maggie into the house at first. 

Getting Maggie into this house was not as easy as I imagined it would be. There are only five steps, and then it is all one level. I knew I could not get her up five steps in the chair. I thought once I took her out of the chair getting the chair up those steps would not be a problem. Wrong. I could not get it up the stairs by myself. Steve laid out these two planks to roll the chair up. Classy, right?  I am sure my new neighbors are quite impressed with the new kids in town. 

Note -- this would NOT be done with Maggie in the chair, which would be extremely unsafe and probably impossible.  

Even using the planks, I could not do it. It was too steep of a pitch and the planks were too narrow. Finally, I took all the equipment off the back and pulled chair up backwards.  That worked but it was a very physical endeavor.  I had to  carry Maggie in (76lbs), pull all the equipment off and carry that in (50 lbs) and then hoist the chair up (105 lbs) backwards  Very hard on my decrepit shoulders. I did it twice on Monday and will likely have to do it twice every day. Maybe not, though. Once we are out, we could stay out or at least keep the chair out until dinner. We can bring Maggie in for her treatments and meds and leave the chair in the back yard.

Speaking of the back yard – it is fantastic. Amazing. Yesterday we sat under a tree near the pool and I dozed in the chair. The yard is big enough and nice enough to hold a wedding. That is where you will find me every afternoon this week. It is a bit overcast in the morning but yesterday the sun was out by noon and it was a perfect afternoon, probably high 70’s with just a hint of a breeze.

Mercifully, nurses for both shifts showed up so I got some sleep last night. If I can do that another couple of nights I will recover, and then we can move back into our house.   That might start the exhaustion all over again, but not necessarily.  Other than the basic furniture, there is no rush to get everything back together.  We can do that leisurely.

And I am into leisure.  

Friday follies

Our outing was delayed today by the death of our car battery. If that had to happen, I'm glad it was right in front of the house. I called AAA and they were here in 10 minutes. The battery was toast and he replaced it right on the spot. Maggie was amused by the whole thing for a while, but she was anxious to get going too. I gave her the AAA card and told her she was in charge. That helped a bit.

Our outing today was called "Women at the Hardware Store." We went to Home Depot to get the supplies to seal off the parts of the house where the floors are not being touched. We bought plastic sheeting, which Maggie carried on the back of her chair.   I have to say this is the first time I've been to Home Depot when it wasn't full of families and DIYers. It seemed to be all contractors today, so Maggie and I stood out like a sore thumb. That was fine, everyone was very ready to help us and offered to carry things to the car. I declined, because the purpose of the  Women At the Hardware store lesson is to be self sufficient. I headed back to the car pushing Maggie's chair with five packing boxes under one arm. The plastic sheeting and tape were on the back of Maggie's chair.

We are really getting there with the packing up. The additional boxes are for those last glass thigns that need to be wrapped. The wine boxes with the dividers were perfect for the individual glasses etc, but many things are too wide for those slots, so we are wrapping things in newspapers. We are having a little bit of fun as various things we never use are coming off shelves. This Franciscan friar wine decanter took advantage of his liberation from the bookshelf to catch up on some news from the Archdiocese.

come to think of it, the dead battery may be payback for this picture....

Have a great weekend everyone. We will be wrapping things up here and may be off line quite a bit next week. I'm not sure how much internet access I will have. Don't go away, though, we will check in whenever we can.

Moving things around

This week has been like living on a Chinese checkers game board. I just keep moving things around but don't really seem to get anywhere. We are working feverishly to get ready for the floor resanding. Things have to be completely moved off the first floor. Every time I walk upstairs I bring an armload of books or a box of framed photos from the dining room or something.

By 7:30 this morning I had all the fine china packed into those little plastic cases you can by and I have a service for 12 right here in my office now. I still have to do the glasses and that will take more time. All the breakables are going in the office. The pictures and books etc are going in the other bedroom and all the small furniture (dining room chairs, side tables, lamps) will go in our room. The biggest furniture will go in the kitchen or in Maggies room (because those floors are not being done) but some will have to go down to the basement. Tim and my nephew Matt will be moving the big stuff on Sunday.

The pictures are off the walls, the books are off the shelves and last night Steve pulled up the rug that goes from the downstairs hallway up the stairs and through the upstairs hallway. I wish we could keep in uncovered because the wood is so beautiful, but between the dog and our shoes, its probably not a good idea. Besides, it is really noisy when you walk around a 90 year old house without rugs.  Creeeak. (Could be my bones, I suppose)

Finding a a place for all this stuff is a challenge.    All of those rooms and the basement are already full of crap. I cannot believe how many things we own! There has to be some semblance of order so that we can find things when it's time to put it all back. Of course I have made several piles of things that will NOT be coming back downstairs as well. Some are going to the Salvation Army, in fact I brought a whole van load there yesterday. Some will just get rotated upstairs.

In addition to all this I am working on my pile of things we need to bring with us, especially Maggie's supplies. I started a pile in the basement, but this morning I decided everything that's ready had to go in the van so I didn't add more clutter to the basement. Of course that meant I had to clean out the van first, but that was easy. I used the drivers seat for garbage and the passenger seat for things I needed to keep and put away. Done. I loaded up the far back of the van with some of the stuff and will just keep adding as I go.  I have to make sure I don't take another load to the Salvation Army, though. I might end up donating Maggie's supplies.

Maggie "helped" me clean out and load up the car this morning. Basically she sat in her chair nearby and laughed every time I went in or out of the car via the wheelchair entrance. (which comes in very handy when you are cleaning.) She kept saying "Mom, Car" and cracked herself up. I have to say, she made the work a lot more fun. On about my 10th trip in that wore off and she said "Mom. Upstairs, I want my cd." She had enough and wanted to listen to some tunes. That sounded like a great idea to me too.

I can get back to my checker game later.

Nursing dominoes

Our foray out of this house for four days is completely upsetting the nursing apple cart.

It is Monday through Thursday, which is generally the most stable part of the week for us nursing wise. We will be gone for four days, or eight shifts. If we were home we would have two nurses covering those eight shifts. Neither of them is really in a position to commute across the bridge, so I had to rearrange. That created a domino effect. Those 8 shifts required changing about 30 shifts. These two could cover some weekend shifts and the weekend nurses on both ends of the week, who are better able to make the commute will cover the weekdays.

I had to cajole and make concessions and agree to pick up people at the BART (Rapid transit) station., but as of this moment, I think every shift is covered. Of course I will believe it when everyone shows up, but for now I can relax.

Did I mention the house where we are staying is in a sunny area and comes equipped with a pool?  I guess I have to add sunblock to my long list. GREAT!

Swimming is dangerous for Maggie because we have to be certain her trach stays out of the water. That's easy enough to do if there is more than one person to get her in and out of the pool.

Oh. And I don't have a trach.

It will be worth it.

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.

Checking in to end the week

Quiet week for blogposts. I am trying to take advantage of this time that Maggie is in school to get a lot of things done. School is out next Thursday and then it will the Maggie and Mom show for four weeks until school starts again. It will be very difficult to get anything done then so I'm donig my best now.

The time approaches for our great floor sanding and refinishing extravaganza and I have been getting rid of things left and right in anticipation of our need to completely empty the first floor of the house. My office is completely out of the dining room and in a dedicated room upstairs. There is a bed in my office in case everyone is home at once, but it has officially been changed from a bedroom to an office.

This change was necessary because I am trying to do a little more (paid)  legal work and want to be up and running by the time Maggie goes back to school in Mid august.. I cannot run a practice from the dining room with Maggie and the nurse right there. I need some space.  It's nice because the room is really a sun room and it is full of light. Good thing it's so bright. I have yet to decorate. In fact the only thing on the wall is the card my husband gave me for our anniversary a few years ago. I love this picture. It's hanging just above my computer and it makes me laugh every time I look at it.

Kind of explains a lot, doesn't it.

I think Miss Maggie is ready for summer school to be over. She has been falling asleep every day. She still loves going to school, but I don't think there is enough to entertain her and she's bored. Maybe it was just too many changes with a new site and a new teacher. She adores "Mr. Kyle" but she can't seem to stay awake. And she's not sick.

I have to start planning Mom Camp II for the next four weeks. The week we spend at Uncle Pat's house will be a something very different, but it will be hard on all of us. Caring for Maggie anywhere else will be tricky but it's a great option because he has a bedroom on the ground floor and we can get Maggie in and out easily. Also it's very near the zoo, so Maggie and I can get acquainted with the apes and giraffes. She also has Girls Rock camp the first week of August, but I really have to go with her to that. I can send her nurse, but I will probably do it myself to make sure she really gets int here and takes part in everything. We will take in the Picasso exhibit at the DeYoung Museum and I'm certain have a few trips to the mall, Maggies' favorite outing in the world.

Hope everyone has a great weekend. No holidays or fireworks this weekend. But we will make our own fun.

Floored

After five  years of ignoring the need, we are getting our hardwood floors sanded and refinished. It will look amazing and I will be absolutely delighted when it is done. I have to keep telling myself that  because getting from here to there will be a challenge. The very thought of the preparation for this is exhausting.

 Any type of home repair or improvement  is very difficult to accomplish with Maggie in the house. We operate with very little room for deviation and the noise and disruption of construction or repair are too much. We let things go far longer than we should to avoid upsetting the delicate balance of our little eco system.  However, when you reach the point of no return, you just have to bite the bullet and do it. That’s where we are with the floors.

Hardwood floors fun throughout the entire house, with the exception of the kitchen and bathrooms. In order to get them refinished, we have to completely move out, lock stock and spice rack. Everything.  The furniture, the rugs, stuff in the closets, everything.  We decided not to do the bedrooms this time because we have to have someplace to store everything. We can do those another time and simply vacate the upstairs without disrupting everything.  We are also leaving the carpet in Maggie’s room so we don’t have to move things out of there.  Now we can put the biggest pieces of furniture in the kitchen and in Maggie’s room, a bit in the basement and all the chairs and boxes of things in the bedrooms upstairs.   Four days later we will put it all back and reclaim our house with its gleaming wooden floors. (Refrain) I will be delighted when it's done..

As daunting as all of that sounds, it is only the beginning. We also have to figure out WHERE to go that can accommodate Maggie’s access needs and handle all the equipment and things we will need , including nurses coming and going at all hours. In addition to Maggie’s clothes and wheelchair, we have the oxygen (and tubing), the compressor (and tubes), the feeding pump (and bags), the suction machines (and tubes), the nebulizer (and tubes), the dynavox, the pole, 13 different medications and syringes, trach masks, catheters (two kinds) , extra trach tube and extra  gastrostomy tube, two cases of food, feeding tubes, diapers, chucks, wipes, and of course the IPOD full of Lady Gaga tunes with the player.  (Note, list is not exhaustive, that’s just off the top of my head).

We considered going to my mom’s house, but the flight of stairs into the house means carrying Maggie more than I can safely handle. We planned to go to my father in law’s house, where we can get Maggie onto one level easily, but it is an hour away and I wouldn’t have any nursing help.  Plus there would be no way to monitor what’s happening at the house and if we forgot anything it would be too difficult.  I considered a hotel but the cost is outrageous.  My brother Pat offered to let us stay at his house in the City. He will be out of town that week and his house has a bedroom and bath on the ground level.  We can have the nurses there and we can run back and forth to our house to deal with the contractor and to retrieve any forgotten supplies. As of this moment,  that is the plan. It is the best possible option and I appreciate it tremendously.

Still,  I am not looking forward to all the work and hassle of this. I just keep telling myself it will be worth it. And we won’t have to do it again for 15 years. It will need it in 10, but we will ignore it for 5 years. 

(Refrain) I will be delighted when it's done.