Caught Unprepared

We had a scare last Sunday morning and I thought we were going to have to make a run to the ER. The nurse woke me at 4:30AM because Maggie was struggling to breathe. I flew down the stairs and started pulling out all my tricks to calm her down so she could breathe normally. I put her in her chair because sitting her upright is better than being flat. We also changed the trach while the nurse suctioned and cranked up the oxygen. It didn't seem to be helping, but Maggie was so panicked it was hard to tell.

I figured we better go and I started grabbing things I would need. As I raced around the house grabbing things I realized how unprepared we were. It used to be that everything was in a bag ready  to go, but Maggie has been so stable lately that bag has been put away. I could see that Maggie was calming down, but I wasn't positive she was ok and kept gathering things.

As it turned out, she did recover fine and we did not go to the hospital, but I learned a lesson from that and have been getting an emergency kit back together for easy access. Now that I am Maggie's conservator, I have to include those papers in my emergency kit so that  I can make decisions for her. I decided to put the papers I needed regarding the conservatorship, her medical history including allergies and medications and  a copy of the insurance cards in an envelope in the nurse's chart. They are marked as for emergency use and I can grab them in a flash.

I will put her emergency bag back in the hall closet with a change of clothes, some food, feeding tubes, diapers, catheters, books, a change of clothes etc ready to go. Then I will just have to grab my phone and charger and her music we can hit the road.


I figure if I'm ready we won't need it.



I would make a suggestion to anyone out there caring for a person with special health care needs. Do a history on the computer and include the medications and allergies and update it whenever there are changes. It's so easy to get the doctors up to speed when you arrive and they are very appreciative of the organized delivery of information. I also put it on a flash drive that I keep in my purse so they can copy and paste if Maggie gets admittted. I know the information is correct and complete and avoid scary mistakes.  I even bring a copy with me to the various medical appointments because it is just too hard to remember all the drugs and dosages. If anyone wants my template I'm happy to provide it. I just made it up, but it has everything you need!

 

911. What's your emergency?

Let me start this by saying Maggie is fine.

But we had a helluva afternoon. I think it is safe to say that the boredom of mom camp was shattered.

Yes that is a picture of the San Francisco Fire Department in my dining room looking at Maggie’s medical background for their paperwork.

Maggie was home with the nurse and I was running errands like a crazy woman, trying to get back in time for her next procedure. I knew I was going to be late, but she is ok for another 30 minutes or so and I just had to get some groceries. I was standing in line to pay when my phone rang and it was Maggie’s nurse, Fely. I answered and without waiting for her to speak said, “I’m almost done and I’ll be home in 20 minutes.” She said, Sally, something is wrong. Maggie is very upset and she is turning blue. WHAT!?!? Is she ok? She is now, but she is crying uncontorllably. Is she blue now? No. The trach was plugged and I cleared it.  I am giving her oxygen. Ok. 

Lest you think I'm inattentive, this does happen with Maggie. It's never good, but once it's over it's over. Still I wanted to get home to see for myself. 

Of course it took FOREVER to get checked out and for the first time in about 1 year I was shopping at a different store, not my neighborhood Safeway. I was at least 15 minutes from home but I had to get out of the store. As I loaded the groceries into the car Fely called again. She sounded more worried. I said, “I’m coming now. DO you need 911?” She said no. She was giving Maggie O2 but she seemed to be in pain.

I drove as safely as I could while fighting panic. Tim was at work in Marin. I called my neighbor who is an RN to see if she could pop in and do an assessment. No answer. I called Steve to see if he was almost home. He was still in his office. He said he would leave right away, but I know I would get home before he did.

When I arrived, Maggie was in distress. Fely was giving o2 and her respiratory numbers were fine – but her heart rate was in the stratosphere.  I made sure the trach was clear. I was perplexed, for sure and said, let’s get her in bed. As I tried to get her out of the chair, I saw it. Her foot was completely wedged in behind the foot box on her wheelchair.  I could not move her and I could not free her foot.

I grabbed the tools and tried to loosen the box but I was fumbling around like an idiot. I finally found the right sized wrench but I couldn’t budge the bolts.  I was freaking out. I needed help and I called 911.

In a way, this is like a normal kid problem, right. Granted, it involved a wheelchair, but she needed to be freed. She could have been up a tree or locked in a closet or something like that, right? This could happen to anyone, right?   As I kept giving information to the 911 dispatcher, I realized maybe it wasn’t so normal. 

“San Francisco 911 what’s your emergency”

My daughter has her foot wedged in behind a piece of her wheelchair and I cannot free it.

Is she injured?

She is definitely in pain, but I can’t tell if it’s injured or broken or just stuck (note – I was not calm)

How old is your daughter? 18.

How did she get her foot in there?

 I don’t know?  She has CP and gets herself into some strange positions, I have never seen her foot back there before.

Oh. I see. What does she say happened? Can she tell you how she did it?

No. She’s non verbal.

Oh. I see. How long has she been stuck?

At least 25 minutes I’m trying to get the foot box off, but I’m not strong enough to move it (shrieking a bit)

Ok ma’am. Take a breath. [When he said that I realized I hadn’t taken a breath in several sentences] The Fire Department and paramedics are en route.

It took about 4 minutes. That is a very quick response, but it is a very long time to wait.  I did have the presence of mind to put the dog outside so he didn’t bother the firemen when they arrived and to call Steve and tell him what was happening. I did not want him to have a heart attack when he saw the Fire trucks and paramedics in front of the house.

First came the firemen – about 5 of them. They surrounded Maggie. I couldn’t even get into Maggie room. I heard a “crack” and knew the chair was broken. I  Did Not Care.  More rescuers arrived.  They just kept coming. There were at least 10 guys in my house. The firemen left when the paramedics took over. We were down to five guys and then three. At some point Steve arrived too. The paramedics  determined her foot was bruised, but likely not broken. They were concerned about Maggie’s breathing and I assured them her weird breathing was her norm. When she started grinning at the firemen and doing her own version of flirting, I knew she was really ok. She pretty much owned every guy in the room.  She was stressed, but fine.

 I was just stressed.

A huge thank you to the very kind firefighters, emt’s and paramedics and everyone else who was here. We 

do not need help very often, but we did today. It is sure nice to know help is there when we need it. 

Give me a Hand

My adrenaline is pumping and Maggie has fallen asleep.But I just learned something. Octo-mom has nothing on me. I seemed to have eight hands this morning. Maggie just had some problems and I found myself working machines and wielding different tubes in concert to get her the help she needed.  I'm not even sure where all the hands were coming from , but it all worked out and Maggie is fine.

It's the first weekday with no summer school. Steve already left for work so it's just Maggie and me here. Maggie is going to a camp with her lovely mother as her aide. We are stalling so I can time things correctly so that I don't need to do some of the procedures while she's at camp.

Just as I finished feeding her she needed suctioning. No problem. Clamp and disconnect  the feeding tube and get out the suction catheter. It was fine at first, then it wasn't. In about 30 seconds she was overwhelmed and choking.  I had to get the feeding tube reconnected and opened up to relieve some of that pressure but I was holding her up a bit to prevent more choking and working the suction machine feverishly. In retrospect, I should have turned on the oxygen but she was OK without it. If it lasted any longer she wouldn't have been. 

If Steve or anyone had been here I would have been yelling for help. But there was no one. I felt this calm come over me and watched myself take care of everything. I cannot even tell you how I did that - it seemed like I had an extra pair of hands. I was holding her up, reconnecting and holding the feeding tube and deep suctioning her all at the same time.  It took about a minute of work and I'm not sure I breathed in that time. Crises ended and Maggie was exhausted and almost immediately went back to sleep. I melted in a corner, the calm leaving as quickly as it came.

Now we're off to camp.

Breathing in, Breathing out

Figured I owed an update after that last post. Of course once we got up there Maggie was dong fine. Never fails. then she coughed and things started happening. Maggie did not get admitted. It took six hours to determine that she does have tracheitis, which is not good, but it's something we can treat at home. There is also a small pneumonia. Not as bad as I thought, but bad enough. The doc told us to go on our mini vacation. If Maggie starts to have trouble breathing and the oxygen isn't helping we'll come back. Doesn't that sound fun? Anyone want to join us?

Take a deep breath and have a nice weekend.

Planning what?

We decided to take a short road trip. Just the three of us, Maggie, Steve and I. The boys are off to school so they're not invited. We have not taken Maggie anywhere overnight in at least two years. She's either been too sick or it's been too much trouble to organize. But this weekend is different. Maggie has been healthy - complicated, but healthy. It's time to give it a try.


These plans were made about a month ago, shortly after we learned that our nursing agency was abandoning Maggie as a patient. They gave us 30 days, which ends tomorrow. Hence, tonight is the last nursing shift. Since we weren't going to have nursing anyway and I was going to be up all night every night for the rest of my life, might as well go somewhere. I can miss out on sleep anywhere. Since then we have been working with golden Gate Regional Center to find another way to handle the nursing. Of course it means thousands of dollars and a ton of work for me, but at least I can sleep at night. We have nurses starting under the new system on Sunday. That still leaves 36 hours without nursing, so we planned the trip. We have learned to squeeze alot of entertainment into very short periods of time.


We're leaving at 6am tomorrow, when the night nurse leaves. Or at least we are supposed to. As if on cue, Maggie's having some trouble today and I believe I will be spending the day at UCSF Urgent care. I cold take her to the ER right now, but I know from expericnce that they will send us over to wait for urgent care to open. (Perhaps it should be - NOT THAT URGENT care. ) You may think I'm inattentive typing this while I'm on alert for a dash to the hospital. But I have learned. Thousands of days in the hospital have taught me when to observe and when to rush. Relax. We are in observation mode and I can see her from here. The osygen is on and she's improving, so this may be nothing - but I suspect she's developing pneumonia. Pneumonia is serious and Maggie has had it at least 50 times. At least. Every single time is scary, though.

You know the fear doesn't change. The experience of handling emergency after emergency teaches us how to handle a lot of things, and people often marvel at our ability to deal with these crises. We don't have a choice, so we do what we have to. Experience has also taught me that observation mode can change in a heartbeat. So we are always scared.


My antenna is up and plans for our mini vacation are up in the air. Maybe I'm wrong and we will go after all. Maybe I'm not and she'll be admitted. If that's the case I hope we at least get a room with a view.

Hey Abner!

Tim left for college this morning.We may not see him until Thanksgiving. It was tough to say good bye for all of us. Maggie gave Tim a kiss goodbye. That's her kiss pictured- she just touches your lips with her hand.

While packing and cleaning out his room Tim filled a plastic bag with all the loose change he found. He took it to a cash machine and collected $324!! It pays to clean your room! He bought himself a new television set for his dorm room with the money, and then promptly forgot to put it in the car. He didn't realize it until they arrived at the school. Oh well it was nice of him to buy us a new set.

So Maggie and I are on our own until Steve comes home tomorrow. I'm sure we can find some trouble to get in. Actually, Maggie already accommodated that this morning by pulling her trach out and sending me flying for the emergency supplies to change it. Because she's more stable now, it's not as scary as it was a year ago. I still have to move fast to make the change, but she's not in distress right away as before.

It serves me right. It was a little smack down for being a nosy neighbor. I was checking out the arrival of an ambulance and fire truck up the street and trying to figure out what was going on. I was not paying attention to Maggie and that is a punishable offense.

I have a lot of responsibility. I have to keep abreast of all the developments on the block and never take my eyes off Maggie.

There's a reason Gladys Kravitz didn't have kids.