It's been almost two weeks since M's surgery, and exhaustion is starting to set in.

I don't mind the constant trips up the stairs, I figure running upstairs 5-6 times each hour for the 12 hours each day that M is awake, is probably good exercise. Shoot, don't people pay  money for step aerobic classes? All I need it some kind of exercise for my arms and I've got a whole body workout going... and it's FREE!

No it's not all the trips up the stairs, or watching bits and pieces of movies all day with M (movies that are invariably interrupted by more trips up and down the stairs...), or keeping track of the hours he's in the CPM machine and lifting the heavy thing up and down off the bed, arranging his leg just right each time, setting the speed as fast as he can tolerate (which still seems impossibly slow. All of that is very do-able. I'm not a good nurse, but when I have to do it I can...

The hard part is the stress of trying to help him deal with the pain, of worrying when he's going to really screw something up because he keeps forgetting and stepping on the leg that should be bearing no weight, and of trying to manage the psychiatric symptoms... symptoms that increase when he's in pain or tired.

As I've said before (like in my last post, I think...), it would be really nice if we had some psychiatric support. M's psychiatrist at the county mental health center is anything but interested or invested in his care. Despite the surgery, it's been two months since I've talked to her... It's impossible to contact her between appointments... all communication goes through "Nurse Sally"... who doesn't know M, has never seen him, and knows zero about his illness or developmental disability. I've spoken to Dr D, who's been M's pdoc for 5 months now, a total of about 30 minutes during those months.  She's seen him three times during that time, and there is roughly 10 minutes of appointment time to bring her up to date, share any concerns, talk about how things are going, and make any decisions that might need to be made. Needless to say he's receiving lousy care.

7 Quick Takes

7 Quick Takes

~1~

I think caffeine is going to be the word of the day today. M was up and down (and up and down and up and...) last night, and I've been wandering around bleary eyed all morning... while he catches up on his sleep! It's days like this that I wish I liked the taste of coffee...

~2~

Despite being bleary eyed, it's been a nice morning. R spent the night at her sister's so it's just me and M home. He's asleep, so basically I have the house to myself. (woohoo!) I've got laundry going, the kitchen clean, and odds and ends of clutter put away. It feels good to be able to pick things up a bit without stopping every two minutes to run upstairs and see what M wants...

~3~

Despite all those trips up the stairs M really is doing well. Given the fact that he is stuck in bed except when he has help to get up, and there are many movements he can't make... even in his bed... he's handling things very well. Probably better than I would... (The "precautions" he has to follow are just about the same as when you have your hip replaced. He can put very little weight on that leg, can't cross his legs, can't swing his leg out to the side, and can't bend his hips at more than a 75 degree angle... it's a lot for him to remember.)

~4~

Today will be a busy day with both a home health aide, and the physical therapist coming this morning. Hopefully M will do well with all the comings and goings...

~5~

I'm enjoying Undaunted Courage so much, what a wonderful book! I've decided to read it along with an abridged copy of the Lewis and Clark Journals that I have. I'm reading a chapter in Undaunted Courage, then reading the journal entries for that same period of time. It will take me a while to finish this way, but I'm enjoying it so much that I'm in no hurry...

~6~

All I need now is a really good map of the areas Lewis and Clark traveled through. I keep finding myself wondering exactly where the place they are talking about is, and how many of the rivers and things they named have kept the same names. What a fascinating time in history that was!

~7~

Wow, M is STILL asleep and I'm feeling extremely spoiled. It's almost 9:30 and I've had the past four hours to myself... what a treat! (I think I can go back to my nursing duty with a better attitude now :)

Is it Thursday already?

This week is passing by in a blur... I can't believe it's almost the weekend already.

M is doing ok.  Physically he's doing very well... He has physical therapy here at the house three times a week (Mon. Weds. Fri.) and is now able to use his crutches to get into the bathroom (with help), so no more commode in the bedroom. (hurray!) His gut finally started working again, and so he's feeling better and is eating better. He's cooperating with being hooked up to the CPM (continuous passive motion) machine for 8 hours out of every 24, and we've worked out a pretty good schedule for getting that done.

Unfortunately the psychiatric piece has been tricky... When he's hurting, or tired, the psychiatric symptoms increase and it gets pretty scary. He's not aggressive, but he becomes paranoid and that interferes with being able to care for his physical needs. One night, in the hospital, he was so tired... and hurting... and became agitated and then disconnected... believing that the oxygen he needed to keep his O2 level up, was really poison. I eventually convinced him that it was safe and he accepted it... but it was a rough episode. Also in the hospital, during physical therapy (and the reason they decided to stop doing PT with him) he got tired and was hurting, and became extremely anxious... to the point of panicking... and froze while still on some PT equipment. He's too big to just lift off, and even though we tried to calm him down and reassure him, in his panic he got himself down and walked away... putting full weight on the bad leg! (Which increased his pain dramatically, of course, and led to more agitation.)

We've had a few of those kinds of episodes since we've been home... two minor ones and a major one last night. Yesterday had been a busy day, with an HHA (home health aide) here, and the PT... and he was overly tired by evening. His agitation level got very high, and he wasn't safe (towards himself mostly...). I was so worried that he would  start grabbing at the incision... or get up and try to run out of the room. I was able to get him calmed down, but it was a very tough evening.

The hardest part of this operation is dealing with the psychiatric issues... not the physical recovery.

It's too bad he doesn't have a psychiatrist, or any decent mental health support.  (Technically he has a psychiatrist, but all she does is write prescriptions...  Back in January when I told her that M was having this surgery... rather than offering, or arranging, extra support during a difficult time, she told me to call her three weeks after surgery and let her know how things had gone.)

A bright spot this week was a package that M got from "Coach John" (from Special Olympics), who came to visit him in the hospital. John had told M that he was going to send him something, and I was looking for a card (or something small) to come. Imagine my surprise when this box came in the mail for M...



... and inside was this very cool Avalanche jersey, personalized with M's name on the back!



M was thrilled... and has the jersey hanging in his room where he can see it from his bed.  We have run into some of the most amazing people through Special Olympics... what a blessing they are in our lives.

I'm hoping that today will be a quiet day, giving M (and I) a chance to recover from the drama of yesterday. Hopefully he'll be more settled, and it will be a good day.

*~*daybook*~*

FOR TODAY

February 22, 2010

Outside my window... it's still snowing. It's been snowing off and on since Saturday, but thankfully it's been a light snow so we only have about 5" on the ground.

I am thinking... that this might just work out after all. M had a couple of really rough days (both physically and psychiatrically) this weekend, and I wondered if he'd been discharged from the hospital TOO early... but yesterday evening was a little easier... hopefully today will go well.

I am thankful for... the surgeon, anesthesiologist, and nurses who cared for M last week. Especially the surgeon who took a chance with M (because of everything else that M has going on, I think his first inclination was not to chance the surgery) and "Dr Tom" the anethesiologist who spent so much time researching M's meds before the surgery, and so carefully monitored him during and after surgery.

From the learning rooms... I'm not sure if M will get back to his school work this week or next. It would probably be good for him to have the structure of school. I'm just not sure if he'll be ready. R will for sure need to pull the books back out.. :)

From the kitchen... I've got a craving for navy bean soup... but forgot to soak the beans last night.  I guess it will have to wait until tomorrow night. After 5 days in the hospital, it's been so good to have a kitchen again... I'm happy to be able to cook anything!

I am wearing... jeans, red tee shirt, navy blue hoodie, crocs

I am creating... a recovery period that will (hopefully) result in a child who can walk pain-free, and has as close to a full range of motion as possible. (M will never have full range of motion... the surgeon fixed as much as he could, but wasn't able to make the joint "normal".)

I am going... nowhere, except to the barn, for awhile. Our first trip "out" will probably be M's follow-up visit with the surgeon in about 10 days.

I am reading... Undaunted Courage: Meriwether Lewis, Thomas Jefferson, and the Opening of the American West by Stephen Ambrose; a story of the Lewis and Clark Expedition. I read part of it years ago, but always wanted to read the whole thing. I started it during M's surgery and am LOVING the escape it provides. One minute I'm dispensing meds and handling urinals, and the next minute I'm on my way up the Missouri River with the Corps of Discovery.

I am hoping... M has a good day, and his gut starts working again.

I am hearing... R's stylus quietly tapping the screen of her Gameboy as she plays whatever game she's playing. (She's got her earphones in, so the Gameboy is quiet...), the hum of the refrigerator, and the tick of the clock.

Around the house... the laundry is almost caught up, and everything else is in pretty good shape.

One of my favorite things... M and R's sweetness... They are teenagers in many ways, but still have that child-like sweetness about them.

A few plans for the rest of the week... I need to draw M's blood today, and pick up meds tomorrow (Joe will have to do that), I also need to arrange the home health aides and try to figure out when it would be most helpful to have them here.

A picture I am sharing...

The kitchen chalkboard wall, with M's Valentine's Day message still on it~

Visit Peggy's blogfor more about The Simple Woman's Daybook

Hurray, we're home!

M was discharged yesterday afternoon, and the ambulance brought him (and I) home...



A deep and heart felt thank you to everyone who kept him in their prayers, came to visit, or sent him cards and things...



It's wonderful to be home... R is very happy to have us all together again, and the dogs were happy to see us, but my biggest "welcome home" probably came from Murphy. He's been aloof since we got him... he seems to tolerate us, and do what we ask him to, but not to be very connected to us. Since he has a history of being abused, it makes sense for him to not to be quick to trust and become attached to us... But part of the joy of owning a horse, especially when, like me, you don't ride often... is the connection between horse and human. Anyway... Murphy always seemed like he could take us or leave us, he didn't really care much one way or the other.

When I went out to feed last night, he was up on the hill above the barn and when I called to him to come for dinner, he came running down the hill... bucking, tail held up in excitement, whinnying. Needless to say this is NOT his usual reaction to dinner. I think he was happy I was home... He must trust us and be connected to us more than he lets on.  This is just huge for me... I wasn't sure that he'd ever learn to trust humans again, or have a true connection to us.

So... we're home but it's going to be a challenging month or so. M isn't nearly as independent as I anticipated him being. He isn't able to bathe, use the bathroom, or move around at all without help. He's also at great risk of falling (he moves very impulsively, often forgetting he can't use one leg) and he needs pain meds every 4 hours round the clock.  The good news is he's in good spirits (despite the pain medication making him sick to his stomach), psychiatrically he's still stable, and he's home.



When I woke up this morning it was snowing, the big pine trees are frosted with white, and little by little the dry winter prairie grass is being covered by the soft pure whiteness of the snow. Just before sitting down to the computer, I looked out the dining room window and saw a small herd of mule deer in the back pasture... does and their mostly grown babies... including one young buck with his little two point antlers. As I watched, two of the does stopped to groom each other, while the others wandered past... nibbling and walking... always watchful, but at the same time seeming almost serenely calm.

It's very good to be home...

It looks like we're finally going home!

We originally hoped M would be ready to come home on Thursday, but there was no way... He hadn't even been out of bed yet, and was so drowsy from the pain meds that he slept through most of the day.

So the going home plan moved to Friday. But M had a rough night Thursday night... mostly due to very poor nursing. We've found that if his pain level gets too high, his psychotic symptoms quickly and dramatically increase. After talking to his night nurse for Thursday, and agreeing how important it was for M to 1) get as much sleep as possible (which he needs to stay stable), so to "bunch up" the necessary night time checks as much as possible and 2) keep his pain controlled... she was unnecessarily intrusive, even chatty, with him during the night... at one point even coming in and waking him apparently just to check to see if his ice pack had leaked  (it hadn't) and to ask if he needed another blanket!  So for part of the night she was waking him for nothing... but also ended up being almost an hour late with his pain medication, then couldn't figure out how to give it to him (I had to do it for her).

It was lucky she did ask me to give it to him though, because after I went back to bed I kept thinking about what she'd had me give him, and finally got up to see if she'd left the label from the pain med he'd received. She had... and I found that she'd shorted him his pain medicine! I went out and asked why she hadn't given him the full dose and she said she'd forgotten.

When you are a nurse, especially in a children's hospital, HOW do you just "forget" 1/3 of a complicated patient's pain medication?!

Anyway, she brought him the rest of the medication, but by that time he'd been up and down for hours, and his pain had built up quite a bit, and he never really did catch up.

So yesterday was not a good day for going home...  M was feverish, not able to keep his oxygen level up, and as the day went on he was edgy, irritable, and at times, extremely anxious (to the point of being non-functional).. All this was mixed with hours of being so sedated that he couldn't stay awake. He also didn't eat much yesterday, and was too anxious to participate at all with physical therapy.



He's really been a trooper through all of this, and so sweet to the nurses and doctors (shaking their hands and thanking them for everything they do...), his surgeon has even commented twice on how M is doing much better than he expected him to, and better even than many typical kids who have this same operation. Fortunately, I'm getting most of the edginess and irritability... but I do think they are ready to have M (and his demanding mother) gone!

So they've approved an ambulance to transport M back home and get him settled into his own bed, and home health care for an undetermined period of time. The surgeon also wrote orders for M to have physical therapy, at home, with his regular PT.  The discharge papers are already signed, and the ambulance should be here right after lunch.

The highlight of his day yesterday was probably when "Coach John", one of his coaches from Special Olympics, stopped by. John is a dentist connected to this hospital... he found time to stop for a long visit with M and even took our address and told M he would be sending him something. It was an extremely kind and generous (with his time, I know all these docs are seriously overworked!) thing to do. What a special guy...

M also ran into "Nurse S" yesterday (the one he met in the pre-surgery area, who visited him later), and there were hugs all around... You would have thought they were long lost friends.

I will be very happy to get home. I've been here, with M, since he checked in on Tuesday... I think they do everything they can to make the time here as easy as possible for kids and their parents, but I miss home., and my animals, and the quiet of the country... and the dark there, when the sun goes down.



This is the nighttime view from M's window, looking west. It's beautiful... but it's never really dark here.



 The big building on the right is UCHSC (the University of Colorado Health Sciences Center... the hospital connected with the CU School of Medicine. The large street, going at a diagonal on the left side of the picture is Colfax Street... which used to be the longest continuous street in the U.S. Hmm... I wonder if it still is?

We are in the newly built Children's Hospital, which relocated from downtown Denver a few years ago. It's built on the site of the former Fitzsimmons Army Hospital... a place I have vivid memories of from childhood visits there with my sister.

Anyway... with any luck we'll be leaving this place behind and home by this afternoon! :)

The sky outside M's hospital window is just starting to lighten, it's that hazy gray time of dawn...

(the view from M's window)



If I were home I'd be just finishing up with the barn work, probably giving Tucker a treat or a hug before calling Emma back from whatever bunny she was chasing and heading back to the house.

M's doing ok, but the past 24 hours have been hard... The transition from the epidural to oral medication for pain control was tough, and triggered agitation and some instability. Thankfully he settled down again once the pain lessened. Getting the bladder working again (after having the catheter) was also a bit of a trick, but hopefully (knock wood) all his "plumbing" will work the way it's supposed to today.

A bright spot yesterday was a volunteer stopping by with her "prescription pet" dog; a little cocker spaniel named Delia, who was happy to sit on his bed and keep M company for awhile.



He slept better last night, but woke up early this morning with a fever and just feeling bad all over. They gave him more pain medication, but he's still struggling... alternating between being awake... scared and a bit panicky, and dozing off... moaning in his sleep.



Hopefully he'll feel better as the day goes on.

One of the docs just stopped in and said he's not concerned with how M's doing, that overall he's still doing well... but it might end up being Saturday before we go home...

edited to add: M's fever is going up and he's needing extra oxygen... it's looking like it might be a rough day for him. :(