More updates from the hospital

So, 2 things I forgot to mention last night:

1) Surgery was further delayed (from 1 until 2) because he had a pimple. They were afraid it was chicken pox and so had to have the Infectious Disease guy come and clear Little Monkey for surgery. I was glad to know they were being so careful, but I was so worried.

2) The staff here at Children’s are unbelievable. Competent is a given, but they’ve been so compassionate and loving toward my son and other patients. I was especially struck by one nurse who would pet and quiet and murmur quietly to a severely mentally retarded girl in the post-op area, to soothe her. This girl couldn’t speak, and had been very loud in her vocalizations before surgery, but this nurse was so loving and attentive to her that she quieted down to a soft hum, and seemed calm. I would give anything for my brother to receive care like that.

Anyway, Little Monkey is much, much more active than he was last time, awake more often too (though not in pain…they are wonderful about that here, too). He opens his eyes (not swollen closed yet) and looks around, and can even focus on me.





His arterial line hates him, but that happened last time as well. He ate at 3:30 am, and greedily sucked down 8 fl oz, and then puked up about 3 of them for eating too fast. He didn’t eat for nearly 2 DAYS last time, so this is a real improvement. He’s peeing well and resting comfortably, and his sucker makes him a happy little boy.

He at 4oz at 6:30 and again at 9 am, and between 9 and 3 took in 13oz. Now he doesn’t want the bottle (or his sippy cup) anymore, because he’s a big, gassy mess. He will, however, tear at my shirt, trying to get his preferred food source. Oh, and being the boy he is, after his first big post-operative fart, we got this face:



I know him well enough that I dove for the camera once he started tooting. This kid LOVES to grab his toes and fart, more than almost anything else, so there’s a smile only a little over a day out of surgery.

He’s much less swollen than he was at this point last time, which is great, and he’s active…playing with his bears (the surgical one and the blue one from the Oakland Firefighters) and trying to rip of his little “hat”. He’s also babbling a little too, which is nice.

We met another family, whose daughter is here for a bunch of very serious other issues, who just found out she’s got sagittal cranio as well. I was able to let them know that the cranio is a totally fixable, almost easy (in comparison) issue, and not to worry about it. Poor little thing is 7 months old, half of Little Monkey's weight, and has a tracheotomy and a g-tube, so she’s got a rough time. We brought them a stuffed animal. :) Tomorrow I meet yet another cranio family (this one a planned meeting) before their 2 year old goes in for surgery on Friday. I feel that I need to give back as well as I can after all the kindness, especially from my “internet friends”, that I have been shown.

By the way, one of my Mothertalkers (a liberal mom’s blog loosely associated with Daily Kos) came by with her daughter, brought Rorysaurus a stuffed bear, and snuggled Little Monkey. They were very sweet to drive all the way over here, and it was great to finally meet them in person. I love my internet community!

Little Monkey Update (We made it!)

On Monday, we went in for a pre-op appointment, and aside from getting cranky when he was stabbed in the hand for a blood-draw, Little Monkey was just fine. They looked at all of his vitals and weight and whatever and determined that yes, indeed, he was ready to be cut on the next day. Whee.

Monday night, we packed up blankets and pictures for the hospital, and made sure we had something fun for Rorysaurusto do the next day (thank you, Amber). We picked up God-mom from the airport and then had dinner with Lisa (hi, Lisa). Then, right before we headed off to bed, we gave Little Monkey a good scrub so he’d be clean for the next day.

We went to sleep, and Little Monkey stayed in bed, snuggled up between Tuffy and I, all night. We woke up around 7, got Rorysaurus dressed, ate breakfast with God-mom and then we took a Sharpie to the back of his head again. This time, we wrote “Fragile.”

We had to stop feeding Little Monkey at 8am, and so by the time we got situated at his pre-op appointment, at 11am, he was a cranky, hungry boy. He asked for “teta” twice, and I had to tell him “no.” Then he started chanting “Mama, Mama” at me, and I felt awful, so I gave him to Tuffy to hold (since Tuffy is not food and is less distracting to Little Monkey). He was not amused.

We sat in the waiting room with a few other families, and met one whose little girl was in for a laproscopic cranio surgery for just the sagittal suture. It means a couple of tiny, tiny holes and a helmet for 3 months, and no one had told them what to expect in terms of swelling, discoloration, pain or care. We talked for an hour or so, and they seemed much more relaxed afterwards.

Then, the surgeons came in. I know that our surgeons are world class, but they are the oddest men, both in entirely different ways. Anyway, they were still arguing about whether the most important aspect of Little Monkey's surgery was repairing his little front bumps or opening up the back of his head, since that hadn’t formed quite right. I couldn’t believe they were still disagreeing, on the date of surgery, in front of us, but it turns out they both just have very strong feelings on how much they could fix in one surgery. They decided to focus on the back and see if any of the front could be fixed this time, but to not be too surprised if we ended up with one more surgery. Bleh. I was so hoping we were done.

Little Monkey played happily on the floor, surrounded by other nervous pre-op parents and kids. We filled out more official paper-work (ick) and read up on how this was going down again. This time, Sue (Dr. Sun’s fantastic nurse) wasn’t around, so we met the male nurse who was doing her job that day. He seemed very nice.

Then we were shuffled off to pre-op, where we waited with the same creepy plaster dinosaur we see every time. We met the nursing team and the anesthesiologist (same one who took care of him last time), and then, somehow, managed to hand him over to them at 1pm.

We walked slowly to the cafeteria, brought out our meals from Home On The Range, heated them up in the microwave, and sat down to eat. Then, we updated Little Monkey's page and worked on Rorysaurus’s page, read Cheers and Jeers and tried napping in shifts. The nurse called once to let us know it was going alright, and of course, we missed the call.

However, our beeper went off at 5:20 pm, a full hour and then some before we were expecting to hear from them. Tuffy started to pack up and I raced up to the 3rd floor to check on Jules. Dr. Toth was there to let me know the surgery had gone beautifully. They only were able to fix the back, but without that added pressure, the bumps in the front had retracted somewhat, so maybe a third surgery wouldn’t be necessary. Little Monkey had needed one unit of blood, less than last time, and the surgeons were all pleased. “He’s a really cute kid,” the surgeon said, smiling, and left.

I went back and got Tuffy, and then we waited around in the staging area until they were ready to let us back into Recovery We got in, and we found this:

Awww, there’s my little bandaged angel. Tuffy then went out to the car to go get Rorysaurus and Rorysaurus’s Godmother, and brought them to the hospital so Rorysaurusvcould see Little Monkey before he got too swollen (although he was much puffier earlier this time than he was last time). While I waited, I made a collage on his hospital crib of his “before”, “surgery” and “after” photos.

Then, in came my hubby, darling little girl, and our magical, beautiful help for the week, Godmom.

Rorysaurus insisted on kissing him over, and over, and over again. She was thrilled to see him…genuinely happy. It did me good to see her so pleased.

Anyway, now the three of them are home, and I’m in the ICU with my sweet little boy, who is alert and loving and beautiful. He’s not quite swollen to blimp-like proportions, so he can still see, but he’s loving being touched and petted and talked to.

Thank you all for your support and prayers. You have no idea how much they mean.

I wish Needlenoggin could go to Little Monkey's hospital

Seriously. Because Little Monkey's hospital has never let us down, not with Rorysaurus or Little Monkey. They are kind, compassionate and their care is uncompromising.

However, Needlenoggin is too old by a few years, so he was at Highland. After some coaxing, he got a visit by a Patient Advocate. She was able to wrangle up Kristi (a neurologist there who was one of the ones who cared for Needlenoggin before and is a lovely, competent, kind woman) and the attending doctor (Eric something), who came and evaluated Needlenoggin , got him a CT scan and an xray of his arm to determine what was going on with his decreased function, and were able to get Needlenoggin shipped back to Santa Clara Valley Medical Center. This was important, because Needlenoggin had NO physical therapy during his 7 day stay at the county hospital, wasn't taken out of bed once, didn't see a doctor for a four day stretch (although they came and looked at him while he was asleep, they never woke him to talk to him), for a while he was not given his correct medications, and they only did some of his care regimen once in the seven day stay, so he was wracked with pain (when they finally did it on Monday (?), I was on the phone with my mother and could hear him screaming over her voice, the hospital noise and all the nurses).

So, going back to SCVMC seemed like a really, really good idea. When the EMTs came to move him, however, Highland was unable to find a slider board to get him onto the gurney, and took no steps to get one, so, with staples still in his back, the 2 EMTs and 3 nurses had to use TRASH BAGS and his sheet to move his 250lb frame into the gurney, and even with 5 people, they struggled.

However, sometime after his last check at SCVMC (before his 8/29 transfer to Highland), he developed DVT (Deep Vein Thrombosis) clots in both of his legs, which were triggering spasms so violent that he kicked one of his nurses in the chest on Sunday night. They are attempting to dissolve the clots with extra blood thinner, but if that doesn't work, he'll need more surgery. So, he's in severe, severe pain down there, has a uterine tract infection (they assume) and says he feels like he's in an abdominal binder all the time, since he's feeling constriction and is having a hard time breathing. They've reduced his anti-spasm medication and his anti-anxiety medication to half doses because they make him tired and the sleepiness during the day bothered on of his doctors there. (What he explained to me was that after a full day of therapy, he was exhausted and fell asleep. They were unable to wake him and thought he'd fallen into a coma, and rushed him into a CT, only to discover that he was just sleeping soundly. This freaked out one of his doctors, who cut his medication. However, when Needlenoggin was healthy, waking him was a chore, and it would sometimes take me 15 minutes of calling and shaking and pinching to get him up, so this doesn't signal, necessarily, a real problem). He was also not given his anti-depressant at all by the night crew, and while I was down there, was in tears with worry and pain and having panic attacks. I simply cannot see how while they are dealing with these clots and spasms (that cause him to scream and bite his lips until they bleed) sleepy is seen as more of a problem than screaming.

His nurse, ("Evil") gave him one does of pain medication, and when, an hour later, her was screaming, told him she'd just given it to him. She refused to identify his medications to me when she gave them to him, and was defensive and angry. In her whole shift, she hadn't turned him once (to prevent bed-sores) and had yelled at him about watching his fluid intake. He's been on a very, very low fluid regimen (told not to drink his water, only the juice and coke (?) that they bring him with all of his meals) because otherwise his output in a four hour period is over 1000ml. This only presents a problem because the nursing staff doesn't want to empty his bladder more than once in ever 4 hours, not because he's in any way over hydrated, so after yelling at him about drinking all the fluid that they serve him, they put in a continuous catheter. This caused him a lot of pain, and he asked the nurse to check it. She told him it was draining, which meant it must be in properly, and released a little pressure on it so he'd "stop whining." When he complained about his phantom binder, she rebuked him for not remembering that his binder had been taken off. At this point, Needlenoggin told me to take her out of the room, and then told his other caregiver (and asked me to inform the charge nurse) that he would not longer accept any care from "Evil". The charge nurse then took over his care.

When he's not medicated correctly, he can't see or hear little kids (like the on that visits his roommate) without getting very depressed, nor can he see Rorysaurus without getting all worked up and depressed.

Since my visit last night and my mother's repeated phone calls, he has been medicated correctly and has also been cared for by more competent nurses. I discovered that his roommate had previously refused to have this woman care for him, and so she'd then been assigned to my brother.

Oh, and the Medi-Cal paperwork that was sent as a follow up includes a questionnaire about how far he can walk (?!), and he was sent four pages of someone else's application (has a different Social Security number and case file on it) and was not sent a 12 page section of his! No wonder his application is still "PENDING"!

In other news, we took Little Monkey to his pre-op appointment today. His surgery is now scheduled for 12:10 pm, and is expected to be 5 hours long. Poor little guy. He got a little pinprick (blood draw) and other than that this appointment was easy. it will be tomorrow that will be very, very hard, especially since I can't really shake the feeling that I'm going to lose him this time. I worried last time (what parent wouldn't) but I believed we'd get through it. This time, all I can think about is the "what-ifs" and worry that noon tomorrow is the last time I'll see my son.



Keep us in your prayers...we'll need them.

Now It Is Official!

Today, on September 4, 2008, the three Oakland firemen who responded to Needlenoggin's 911 call (and the officer who brought the toys to Rorysausrus) arrived at his bedside on the 5th floor of Highland Hospital. They presented him with the above plaque, naming him a "citizen hero" and thanking him for his good deed.

They've been trying to get to him for a few eeks, but with him being away in San Jose, they hadn't been able to come. This was the best thing about this trip to Highland (although the other issues involving failure to communicate, verbal abuse and problems with patient care were finally resolved today as well).



If you want to watch the video below, you have to turn up your speaker volume.



Oh, and in Round Peg news, we won our scholarship! This win is due to the passed-along emails from friends and family members to their other friends and family. So, thank you so very, very much to all the people who reposted my vote-begging, and for all of you who viewed it and took the time to pass it along.

We won the scholarship, which will now pay for 75% of my History BA and my credential (I'm working on those concurrently)...and might be able to fund part of Needlenoggin's care.

Neelenoggin update (Part 2, Friday-Tuesday)

Note: Hold your horses, people! The last update was entitled Part 1 for a reason...I just couldn't type and save and send all at once.

Before we left on Friday, I told the social-worker at the Center that there was NO WAY I was taking him home before the first of the month, or before he had all of his equipment. From independent research (calls to agencies, brochures, etc), I've learned that the in-home-care-personnel issue is a state problem, and not something the Center itself can take care of. Basically, they can't evaluate what he needs at home until he is at home, so IHSS won't come to a nursing facility and start the process. Basically, we get to pay for outside assistance out-of-pocket until they've figured out how much care they will finance. There's no way around this one.

However, as soon as I started talking about nursing homes (since I, by myself, 3 weeks out of surgery wouldn't be able to transfer him from bed to chair without an electronic lift, for example), they started talking about getting the vendors to loan me his equipment pending Medi-Cal payments, and were much more cooperative. And I wasn't bluffing. Until 10/1 AND the promise that all his equipment and medications can come home, I cannot, and will not take him home with me. I'm aware that I have sometimes been rumored to overextend myself a little, but with Little Monkey and me both being recently post-op, and Tuffy back at work, I was being totally honest in my inability to take him. No bluffing and ni lying. Just, "no."

However, given that he now needed surgery, his release date (and my training dates) are sort of up in the air.

So anyway, we gave the people at the Center Needlenoggin's surgeon's info. Then, on Friday, at the advice of a lawyer, took a letter to Highland, saying that we were requesting that his surgeon get a hold of his caregivers at Valley so that any permanent impairment on Needlenoggin's behalf could be avoided. Amazingly enough, the surgeon called Valley that day, they discussed his fluid collection, and decided he needed surgery on Saturday because the fluid buildup could end up pressing on his spinal cord hard enough to cause damage, or could end up pressing on his brain. So, Needlenoggin was tucked into an ambulance and trucked back out here to Highland on Friday night.

Saturday morning we kept trying to reach him before surgery, but couldn't get through (although I discovered later he'd called my phone and left a message), and he was wheeled in to the OR to find the tear in the tissue around his spine that was allowing the leak. (Special awards go to my mom, by the way, for being present and active at Rorysaurus' 3rd birthday party, and letting the Rorysaur know how much her Nana loved her, while Needlenoggin was under the knife. I know how hard it is for me to focus on anything else when Little Monkey is getting cut on, so my mother deserves major, major brownie points for this).



He came out of surgery well, but they hadn't managed to find the leak in any of the layers of tissue around his spine. They decided to just let him recover at Highland and drain for a few days. Then he'll go back to valley, and then he'll get re-assessed (including whether or not his broken arm has healed enough for him to make more Medi-Cal-approved "progress" which would let him stay at Valley even longer (the longer, the better, since he gets care there he'd never get as an out-patient client).

So, that would be the end of the adventure, right?

Not for this family!

We dropped my mom off at the airport on Sunday night so she could return home, rest, and pack back up to come here on 9/8 in time for Little Monkey's craniectomy. So, we drop her off and say goodbye, and head home. Tuffy goes to visit Needlenoggin. And then my mom calls.

From an ambulance. On the way to Highland Hospital.

Seems she was boarding the plane, and getting into her seat, she was using the seat-back ahead of her to maneuver into her seat. the seat reclined without warning, and she spun 180 degrees. Her foot did not, so she tore ligaments in her knee...which will necessitate surgery in her home town. She stayed overnight in the ER, and then went home Monday afternoon.

So, now, of course, I won't have anyone here to watch Rorysaurus while Little Monkey is in surgery. He'll be in pain, hungry (but unable to eat), lonely (but unable to be held) and scared (but unable to see) so I plan on being y his side talking to him the whole stay. Tuffy had planned to spend some time with me, some time with Rorysaurus (so she didn't feel abandoned) and some time packing, since our move-in date is the day Little Monkey gets released from the hospital. Now, for us to even meet in a hallway for a hug or some tears, or to eat a meal together for a week, Little Monkey would have to be left alone.

Seriously...what did any of us ever do to deserve this?

Needlenoggin's Update (Part 1...through Thursday)

Wow. Let me tell you, I hate red tape. Now, for those of you who know me, this will not surprise you. However, I hadn't really realized how badly the health care system in this country treats poor people, no matter how deserving of care, is beyond me. I mean, Needlenoggin had a job when this happened, but didn't have health coverage because of his previous accident in December, so he's got to wait for Medi-Cal to approve him so that he's not out the hundreds of thousands of dollars his bills have stacked up to just from the ambulance and the first hospital.

Alright, so on Thursday we went down to his center to discuss his discharge plan, figure out his equipment and see what everyone had to do to go abut getting him home. Turns out, especially with his Medi-Cal and CASDI applications still pending (2 weeks after they should have been approved), that his discharge plan was this:

1) He will be provided with a manual wheelchair (that he cannot push due to his broken arm).
2) He will be waiting on the curb for me to pick up on 9/17 (three days after we've been allowed access into the new apartment and 3 days after Julian has come home from the hospital).
3) He will have no lift (to transfer him from his bed to his chair and back), since Medi-Cal has not yet processed.
4) He will have no hospital bed, since Medi-Cal has not yet processed.
5) He will have no shower chair to bathe in, since Medi-Cal has not yet processed.
6) Even though he cannot use a manual chair at all now and won't be strong enough to use one full-time for a long, long time, Medi-Cal will not be paying for an electric wheelchair for him.
7) Even though he will need medications given to him, help getting in an out of bed as well as assistance with all of his self-care and daily-living (at least temporarily), they will not be sending him a a care-giver. I can be trained to do all of these things (sometime between now and the 17th), and in the next 4 to 6 weeks he may be able to get In Home Support Services to come up with funds to hire someone (although they pay very, very little), but that won't be until he is home for a few weeks, and cannot be applied for until Medi-Cal has processed.
8) No, the will not keep him 2 extra weeks until I and Julian are healed from surgery.

We also found out that he has a picket of spinal fluid that has built up in his back, and is causing him to lose sensation in his C8 and T1 registers, and that he is considered impaired at C8 and T1 on one side now. Oh, and he's lost sensation on one whole side of his body, even though he had feeling there when he transferred in. They've apparently been aware of the growing pocket of fluid, but haven't dealt with it because the surgeons at Valley don't want to step on the toes of the surgeons at Highland, and even though they've tried contacting his surgeon through the one pager number they have, have not looked up other phone #s for him, or even his real name, nor have they called me and requested this info. I didn't even know about the fluid issue until Thursday at the meeting.

Grrrrrrrrrrrrrrrrrrrrrrrrr.

It was nice to see him, though.




(BTW, that shirt I bought him was designed by QuadAntics, a designer on cafepress who makes humorous wheelchair items. It reads, "This is not a wheelchair. This is a fully operational battle station.")

Rorysaurus and Round Peg's Updates

So, Rorysaurus has begun to eat again (she's still lost a lot of weight, but isn't losing more...but will only eat about half of what once would have been a meal for her)and seemed to have a good time at her birthday party this weekend. She's still not back to as potty-trained as she was, and she's up with night terrors every night (after fighting to go to bed until midnight every evening). She's having a rough time, and I can only hope that the move will help her focus on her new room, her new play-space and her new school environment, and stop having such an anxious time dealing with the fall and missing her uncle. She's got a new appointment on Friday at 10 am.

I had an appointment on today to get my other drain out (icky, icky, icky thing), and should be able to stand up straight soon, although I'll be in this binder for another few weeks. I'm nearly out of my pain drugs (unfortunately) which means soon I'll have to deal with the pain and discomfort this causes soon. I've never slept better in my life, though (due to the t4). I've got a general health appointment with my gp on Thursday...the last time I saw her she told me to relax and have less stress in my life. Hee hee hee.

I'll know about the scholarship tomorrow, BTW. I did pass my paper and my class (huzzah!), and am on a short break between semesters.

You can help!

So, we're muddling through. I'm still on some rather nutty pain medications that make me loopy (and sometimes hallucinatory). It also makes typing and just being ambulatory difficult. I did get my paper submitted, but failed it because I had failed to mention some certain specific criteria. Except I didmention that item and spent two paragraphs detailing it. So, they're re-grading.

At the doc's today I got one of my drains taken out so I'm only leaking icky red/orange goo and tissue from one bulb on one side of me. Joy! I'm still in a binder and under strict orders not to stand up straight for another week, and not to do any heavy lifting for another week after that, but at least I'll be all better by the time Little Monkey gets released from the hospital.

Needlenoggin is doing well, we're still all on pins and needles waiting to see how his Medi-Cal, CASDI and SSI applications are going, and what his discharge plan is (when he's coming home, where to, what his care situation is, etc). We've also got, right now, over $340,000 in medical bills for Needlenoggin here, and a few thousand for Rorysaurus as well. Ick.

However, you can help! I'm in the running for a scholarship (that's right, for those of you who aren't aware, I'm a full-time student right now). The contest consists of a video explaining why you need the cash and how you plan on using it. The video on youtube is here. Click the link, watch the video (or don't) and rate it by clicking on the little stars underneath the video. I'm about 60 votes away from the first place guy (who is a gold-medla winner and a world record holder who wants a scholarship so he can get check "getting a degree" off his list). Vote, please.

Target, Wheelchairs and School Drama

So, Needlenoggin is wheelchair shopping with his people in rehab. Yay! One less thing I have to figure out (although the bill will come here...they all do). He's going to need a power chair and a bunch of other junk.

By the way, if you'd like to help him out, we've started a small Target registry for him (since he now has his own bathroom and needs big towels and a shower curtain. We'll be adding on sheets when we know what size bed he has, and closet organization items (he can only use the bottom half of closets) once we've moved and can measure.

Really, really, really tired today, and I've failed my paper again (too many different reviewers) so I have to do a re-write to avoid failing out of school. Today. While on crazy pain medication that makes me sleepy or hallucinate. Well, at least the paper will be interesting...

Surgery and Stitches

So, Monday night I tossed and turned all night, and finally managed to get up at 5 am, shower, kiss the kids on the way out and head to the hospital in SF. We arrived, checked in, and then I got changed into a hospital gown and some weird leg-pressure tights like the ones Needlenoggin wears. Then I was drawn on by my doctor, and knocked out.

I only vaguely remember the recovery room but I know I was there for just a short while before getting brought in to my room around 2:30 in the afternoon. I was exhausted and nearly out cold on Morphine.


Ain't I cute?

They put me in some sequential-massaging leg doohickies to keep my blood moving in my legs, drugged me up and left me alone. I sort of dozed on and off until about 9pm when my nurse, whom I will call Fail, came in. "Time to get up," she told me.

"Excuse me?"

"Time. To. Get. Up. You've been lying down for seven ours now. Time to get up and walk to the bathroom."

"Uh...this seems a little soon, and I can't quite get to sitting in my bed by myself. When I had my C section they..."

"Blood clots. Get up or you'll get a blood clot in your brain and die."

"Are you going to help me sit up?"

"No, you have to do it by yourself. It is going to hurt, but you'll just have to be tough."

"I'm plenty tough, that's not the issue. I was just told not to use the abdominal muscles that have just been sewn together, because I could rip them back apart. Could you get someone a little bigger (nurse Fail was about 80 lbs) to help get me to a sitting position?"

"Use your back to sit up, not your abdominals."

"Um...by definition, sit ups involve the abdominals. I'll just wait until my husband gets here, and he'll help get me sitting up. Is there a reason I've got to be up and moving, using the specific muscles involved in this surgery, so soon after such a big surgery?"

"If you don't get up right now, you'll get a blood clot and die."

Now, Needlenoggin had surgery, a big one, and was in these tights and leg massagers and what-not, and at this point I'm really sure he hasn't thrown a clot and died, and I know it didn't happen within 7 hours of surgery. I try arguing with her, explaining that I am doing the leg and breathing exercises that I was told to do, and that I was pretty sure if my husband could get me to a sitting position, I could stand, although I wasn't sure I could walk to the bathroom. She reiterated her threat of imminent stroke, and told me that she'd been instructed to pull my catheter while I was in recovery ( a lie) and that she'd been nice and let me sleep these few hours, but that she was going to make me get out of bed. I told her she could wait for Tuffy, so she turned off my Morphine.

Needless to say, she doesn't get any praise for being mean and lying. The next set of nurses, Winnie and Lisa, were strict, but compassionate, and helped me stumble to the bathroom, pee, and get back to the bed. Climbing in and out was as painful as it was post-section, and worse than some parts of labor.

So, after getting lectured by Tuffy about not listening to the nurses, since I apparently should have done back-sit-ups and gotten up and walking, I got a few hours of sleep. The doctor came in and okayed my discharge once I was taking the oral pain drugs, and then we tried to call my wonderful driver-friend, Becca. However, my phone wasn't working (died in the hospital), Rorysaurus was making Becca late, and Tufy was at work and sounding peeved at being disturbed. So, we waited outside the emergency entrance (not marked at all) for 1/2 an hour until the chair-pusher told me I'd have to come inside and wait for my driver to arrice, park and check in at the information desk before they'd let me go.

Riiight. My driver had my two, small, squalling kids in the car, and she was going to go pay to park across the street, unload them, come in and find the right desk by magic, and get me, and then trundle us all back out to the car. I told the guy I'd just wait outside in the chair, and he told me he'd been waiting for half an hour, and wouldn't wait longer. "Do you have someone else to go get?"

"No, but this is taking too long. You go inside now."

"I can't. My ride will never find me. I'll wait here. She's on her way, and then I can just get in."

"No! You go inside now. No more waiting outside." At that point, he tried to wrench the chair around so he could push me, even though my hands were on the wheels. I won, as I'm a lot stronger than he'd guessed, and threw on the brakes. He undid one, and I re-did it as he went all the way around me to undo the other brake. Then, he went for backup.

Out comes security guard #2. "You've got to go inside until your ride arrives."

"My ride is on her way, with two small children in the van, to a hospital she's never been to before. She only knows the name of the street that this little parking lot is on, and won't find it if no one is out here. My phone is dead, so I can't call her and give her more clear directions, and she won't even know to come in to any desk. I'd like to wait a little bit longer."

"No. You have to go inside. If your ride never gets here, we'll get you to call someone else. What if your ride never comes?"

"What if you out me inside where she never finds me? I'll stay out here." This forced these two men to begin planning how best to wrench my hands from the wheelchair wheels in order to force me, against my will, back into the hospital. Luckily enough, that's when Becca came to the rescue.

So, we got home, and Becca cooked for us, and Rorysaurus' Godmother Annie arrived, and a good time was had by all. However, Wednesday night, I tried to lay on my side in bed to feed Little Monkey, and tore out some stitches. See, here's the injury:


(a hip-to-hip cut...icky, I know)


This is where the drain attaches on my right side. When the stitches tore, the opened up a hole in me about as long as my little finger, and just as wide. Hurt like hell, so I used paper-tape and closed it. Then I made an appointment to go in and see the doctor on Thursday morning.


The bulb there is collecting about 260 ccs of icky bloody fluid a day...

So, we drove out at 7 something on Thursday morning and got me 10 stitches (without pain killers) and I was told how to pull out the anaesthetic pump that was left in my guts sometime today when it runs out of juice (just pulled all 3 feet of tubing out of my belly). I hurt like hell, and the kids just want to be held and loved and poor Tuffy is getting the short end of the too-exhausted-to-move stick, and I can't get in and out of bed by myself.

Becca has gone home (flew all the way here from Seattle so she could help for 2 days), but Annie is still here and so is Tuffy's little cousin.

Birthday and Bureaucracy

So, Today is Rorysaurus' third birthday. Crazy. However, since tomorrow is my surgery and she's got PTSD therapy today, we went to see Needlenoggin yesterday.



It was a weekend, so the center was understaffed, and it was hard to get people to help get him in his chair. We were there for two hours before he had his blood pressure medication and got into his chair, which was frustrating to say the least. The kids were both ready to go home by the time he even got out.

Eventully, though, we were able to eat lunch, go for a roll around the grounds and have cake. We got to sing to Rorysaurus as well.


(Yes, that is a homemade Batman Beyond cake)

(Needlenoggin and Rorysaurus seemed to like it).

Then we packed back up into the van and headed home. i won't be seeing Needlenoggin again for over a week, since I've got surgery tomorrow.

Here's my biggest irritation. There's no one in charge of all of this crap. The Center wants to send him home on 9/2, but no one has called us to tell us that. At the hospital, we were told he'd need a regular bed, but the Center has told Needlenoggin that he'll need a hospital bed for the 6-8 weeks he's home, and who knows after that. Oh, and because of his neck-brace, the wheelchair he's in at the Center (which may or may not be coming home with him temporarily, whenever he comes home) makes him FOUR INCHES too tall for a standard wheel-chair van. They are supposed to hold a family training and a transportation class for us *sometime* before he gets out, but no one has told me anything at all yet, and I'm the one trying to make sure he has a roof over his &#@%ing head and someone capable of caring for him when he gets home. In Home Support Services should be providing him with a caregiver, but he needs CASDI (California State Disability Insurance) and SSI (State Supplemental Income) and his Medical clearance before that can happen, and those papers should have arrived a week or more ago. Who is in charge of this nonsense?

Each state should have a book of the people to call to get his figured out. While I'm not really one for government intrusion, I'd happily pay more of my taxes out if I could talk to one central paralysis person and get all this crap straightened out.

/rant

Alright, now that that is out of the way, I'm going to go feed Little Monkey and pack up for tomorrow. Big day and all.

South Bay Spinal Center

So, we went down to visit Needlenoggin last night, and went through the whole process of loading the kids in the car and heading down to San Jose. We got there around eight o'clock in the evening, and (thankfully) had no trouble at all signing Rorysaurus (and Little Monkey) in as visitors. In fact, the nurses were thrilled to see Rorysaurus, as most of them had heard some version of the story before.

So, we got into the room, and plunked her down on the bed next to Needlenoggin. We got this picture (which aside from the AWESOME Batman cape, is a lot like all our other recent hospital photos):


Special thanks for that Batman cape are due, as our upstairs housemates sewed it for her as a birthday gift. I'll have to get a good picture of her with the reverse side out...too cool).

Then, the nurses had to do nursing stuff, and we headed out to the day-room to wait. Imagine our surprise when we were greeted at the door by Needlenoggin himself, ready to take us on a tour of the place.


(Note that Little Monkey is actually on my back, but cannot be seen)

So, Rory got up on Needlenoggin's lap, and we tooled around.





Oh yeah, he's awesome. So, he showed us the gym, talked about the very cool support group they'd had on Monday, and drove us around the outside of the place back to our car. It was lovely at the center, and we got to see our first helicopter landing as a Medi-vac came into the helipad there. We've got a bunch of logistical issues (like the fact that they want to split his rehab (due to the broken arm) and so want him to come home 2 weeks before I have a place for him to go), but the visit was fantastic.

He said he's lost some of the sensation he'd gained back at the other hospital, and that his right side it totally and completely numb. The left side remains the same except for some sever pain from a pinched nerve in his hip. We'll have a better prognosis on the broken wrist in a few days. He has a new neck-brace-collar-thing, which works better but is apparently much less comfortable.

He is, however, up for hours at a time now (4 to 5) and went out to a restaurant for dinner with some of his new buddies (they had ribs at a local BBQ joint).

He can even do tricks!



Anyway, everyone kissed him goodbye:



And he made (at my insistence) a cheesy "Hi, Mom" video.



So, there you have it. I've got to reschedule Rorysaurus for her next PTSD appointment (still whining and bed-wetting, but she's finally eating again) and make a bunch of phone calls (most of which I can also do from bed next week).

Can we fit one more in?

Surgery, that is.

Okay, here's the basic story. When I was pregnant with Rorysaurus, I got huge. I didn't gain a lot of weight, but was unable to drive near the end, because my belly prevented me from reaching the pedals and the steering wheel at the same time.



I worked my butt off and lost all the weight but still was having a hard time fitting into my regular clothes. Oh well, whatever.

Then, I got pregnant with Little Monkey. By 15 weeks, I looked like this:



And by 32 weeks, I was using a cane, wearing a belly brace and had still only gained 15 lbs. I was here:



Turns out, when the Rorysaur was in there, she tore my abdominal muscles apart, so there wasn't much holding Little Monkey in. This made it even harder than it would have been otherwise to get him out, since my abs couldn't do their job, and was the cause of the really bad back labor I had with both births.

I was expecting it to go back to normal afterwards, but my swayback and back pain got worse and worse, and I was cautioned not to lift anything over 25lbs. I was ready to ignore it. However, when doing a sit-up, my midwife could fit her whole little hand between my abs, and could feel the intestines underneath so, my GP and I found me some physical therapy and I joined a gym, and got stronger and lost a lot of weight. No progress on the diastasis recti, though. In fact, if anything, it has seemed to get worse. I can't stand up straight, and my back just aches. The GP finally told me to go get a surgical consultation.

So, back in early July, before all of this new drama started, I scheduled a consult. In desperate need of a few hours of peace and quiet, I left the midgets with my friend Kristin (here from out of state to watch the kiddos and help pack), andheaded in to San Fran for the consult. We (the GP, surgeon and I) had been figuring on the surgery sometime this late fall or winter, but two pressing things had happened since then.

1) Little Monkey is 22lbs. This means the amount of time I have where I'm not further injuring my back has shrunk a little, and

2) I'm going to need to be able to help transition Needlenoggin from chair to bed to other chair. Not necessarily all the time, and it won't be that I'm lifing him myself, but I will be helping move someone much larger than my 22lb son and 36lb daughter.

The surgeon wanted me to do the surgery with enough time before Needlenoggin's return to be back to normal activities, but, she was booked until November. So, I went to the assistant's office and started the scheduling process. Then, low and behld, a cancellation! So, my surgery is a week from today. 8/19.

I'll be in the hospital in SF for a night, and then come home to nearly bedrest for a week (only some light walking, no lifting (even of the kids)). I'll have drains in for a while, and will have to do all of Little Monkey's care in bed. However, I will have Tuffy's cousin here to help with the Rorysaur, as well as (possibly) Rorysaurus' Godmother. The week after that, Tuffy should be off pending Little Moneky's surgery, and then the big Neurosurgery itself. Then we'll be taking a week off to move into the new place, and then Needlenoggin should be arriving home.

Nuts? Yeah,of course. However, I'll have a little help, hubby will be home some and my mom will be up for a little bit as well, and when else would I be able to get so many people in here to help us?

Finally some good news

So, Friday morning Rorysaurus, Little Monkey and I managed to get into Needlenoggin's hospital room. It wasn't easy, as they have a "no visitors under 14" policy, and Rorysaurus was a) dressed as Batman and b) wearing red leather clogs. However, his doctors and nurses knew we were coming and all managed to be looking somewhere else when we arrived. :)

Anyway, we got a chance to hang out and see Needlenoggin before the EMTs were scheduled to arrive. Unlike the last few times when Rorysaurus has been a little hesitant, this time she very happily hopped up in the hospital bed with her uncle.



They were thrilled to get to cuddle and watch a movie on his DVD player while we waited (a special thanks to his work buddies who brought him that and the DVDs he watched throughout his hospital stay. It allowed him some entertainment in the ICU and saved him from telenovelas and bad game shows in the TCU).



It was good. The EMTs showed up, told him they'd let him watch movies in the ambulance, and laughed and joked with him. Once the guys heard what he's done, they told him he should work for the fire department! He was all smiles as Rorysaurus kissed him good-bye and he headed out to Santa Clara. When told Little Monkey would miss him as well, he rolled his eyes in a good-natured fashion, so nothing has changed there.

My Fairy Godmother (she's magic and grants wishes) arrived right as they were wheeling him away, and she hopped in the car with us as we headed out. I really need to express my undying thankfulness to her and to Crystal, my good friend from high school, for coming up here. Godmom has two kids of her own and a job, and flew up for the weekend, and this week simply wouldn't have been possible without Crystal. She's just gotten over the worst year ever (as bad as ours has been, maybe) and flew all the way out here from Florida to watch the monsters so I could get back and forth to the hospital and run errands.



Then we were off to Rorysaurus' PTSD appointment. She worked really, really, really hard, taking toys off of shelves and throwing them on the floor, and tucking everything in sight under a blanket to "help them get better." We then went over the whole story of her fall, and reminded her that it wasn't her fault and that Uncle Needlenoggin was happy so she was allowed to be happy and play as well. The "not your fault" meme really stuck with her, and she's been repeating it. She also told the doctor that her uncle "bwoke his back in five pwaces," so at least we know she's listening, right?

We got some suggestions for home, a diagnosis, and another appointment for Monday. Then we came home, slept and made about a dozen phone calls about places to live. Wheelchair access is really, really sketchy in older places, and newer ones are just so expensive. This is the Bay, so most 3 bedroom places are $2000 a month anyway, and if you factor out walk-ups, you're looking at a $2500 average.

Right before bed, Tuffy finally got home from work, and Rorysaurus' package arrived in the mail. We unpacked it and, presto! a chair for Lizabeth!



Rorysaurus spent the rest of her night wheeling Lizbeth around the house, putting her in bed, and checking her heart with clips and wires. Maybe she'll grow up to be a doctor?



Saturday dawned way too early, but we were up and running with the last of our coffee. Despondently, I refreshed craigslist, and started up my so-far-utterly-futile apartment search. I opened up a half dozen ads, and started writing my 56th email. I'd sent out 50 over the last 2 weeks, and made more phone calls than I care to count, and had recived back three responses. So, when I opened up the ad entitled "3 bedrooms in Emeryville for $2300", I knew I was in for yet another converted Victorian with skinny doorways that I'd have to retrofit for Needlenoggin.

Instead, I found this:



Whaaa? So, Tuffy and I drove over and did the application. This place is way out of our price range, but then again, so are all the first-floor apartments and ones in elevator buildings. This one has a court-yard and a pool and BBQ area, and a bathroom with a shower that Needlenoggin can roll into. Of course, Tuffy and I actually looked at this building a few years ago and couldn't afford it, so we were hesitant. We applied, because we have enough in savings that we had planned to use for Rorysaurus to go to preschool and to pay for my teacher's credential that will cover the difference.

It is four blocks, maybe five, to Needlenoggin's job and 6 blocks to Tuffy's. Emeryville is also flat, so biking is way, way, way easier than living in Oakland.

Here's the floorplan:



And...

It looks like we were approved to rent the place! So, now we will at least be able to have a home for Needlenoggin for the next 12 months. The buildings, courtyard, elevators and the apartment itself are wheelchair accessible and they're familiar with service dogs (which we will probably end up with). So, one problem solved.

Oh, and talking to Needlenoggin at night, I was told he's really working his booty off in rehab, and was able to sit up for 40 minutes in a chair. They have support hose and an abdominal compressor that keep his blood in his upper body (so he doesn't pass out) and he spends an hour on and an hour off every day doing PT from 8am to 5 pm. So, he's progressing well!

Moving on out!

Well, Needlenoggin's doing as well as can be expected. He's moved in to the TCU, and is working his numb little butt off. :)

Most exciting is the news that on Tuesday, they sat him up, and told him they were hoping he'd be able to sit for 90 seconds. He did it for 4 minutes. Wednesday, he even was able to sit upright in a chair for 15 minutes! He also is sore in his abdomen from all that balancing upright, which is good, because at least he's feeling something. We're still hoping that he'll regain all of his sensation.

He's doing so well, it looks like they are going to transfer him to the Spinal Cord Injury Program at Santa Clara Valley Medical Center. This is the premier center for spinal injury in the state, so we're more than thrilled that they have a space that fits him.



The only issue I can see about the Spinal Center is that they don't seem to allow visitors under the age of 14. 30-60 days without seeing Rorysaurus would be very, very hard on Needlenoggin, so keep your fingers crossed that there's a way around that policy (having him meet us in the lobby or something). If worst comes to worst, we'll try and set him up with SKYPE (a webcam service) there, and have them talk that way, but I know he loves her hugs and snuggles.

All the center needs us to do now is find him a home to discharge into. ::sigh::

Needlenoggin also has a benevolent account set up through Washington Mutual, now. What this means is that anyone can go into any Washington Mutual in the country and deposit money into account # 3171400381, and it will go towards the van, mobility equipment, wheelchairs and his drastically increased rent. Donations can also be mailed to the Washington Mutual Emeryville Financial Center at 5747 CHRISTIE AVE
in EMERYVILLE, CA 94608-2412. Just include a note saying that the money is to be deposited in account # 3171400381. The donations aren't tax deductible, but they are appreciated.

We took candy (provided by our friend Jessi's mother-in-law, Carol) to his ICU nurses, and took flowers and milk-chocolate seashells to his FANTASTIC surgeon, warm doctor and favorite nurse. He signed all their cards with his left hand (since the right is broken) and while rudimentary, the writing was legible.



Rorysaurus and I (with help from our babysitter) got Fabric paint and made him a shirt for his transfer out to the rehab center, since he'll be leaving tonight or tomorrow and has to wear clothes again. :)



And a special thanks to Fr. Al for his loan of Beethoven the doggy-puppet. Needlenoggin is pleased and amused that he has such a soft little animal to love.



Please keep all of the works-in-progress (we're trying to visit a new apartment this week, and our folks are supposed to look at a van in the next few days as well) in your thoughts and prayers.

Good news

Hooray! I am happy to report that Needlenoggin's spinal drain is out! As of sometime tonight, he'11 have been moved to the TCU (Trauma Care Unit), where there's a little more room, fewer beeping machines, and a TV. Still, I'm sure he'll miss the ICU...his room is so awesomely decorated. Notice a theme?



Rorysaurus has been scheduled for her first PTSD therapy appointment on Friday at 11 am. She's begun climbing into my lap to tell me that she's a baby, and pretending to act like Little Monkey. She even drooled on the floor to make her point. :p

Oh, and checkout the video. Most of thse movement is involuntary but two twitches are him busting his butt.

Good news, bad news

The good news is that Needlenoggin is doing well in that he is in higher spirits than ever and far more coherent. The “ICU psychosis” seems to have passed, and while he is very sleepy and in come pain, he is ready to get off of the ICU floor. Next, they said they will move him to the TCU, and then it will be off to rehab in a week or so. He has minor sensation in parts of his lower legs (if poked hard enough, he feels the pressure on his muscles as warmth), and has some reflexes when pinched and poked. Also, with much straining (enough to break a sweat over the course of nearly 5 minutes), he is able to twitch one toe on his right foot a millimeter or two (!!!!!) They are hoping to take out his spinal drain today and move him in the next 24 hours.

The bad news is that Rorysaurus isn't doing so hot. She still is refusing food most of the time, and isn't sleeping in any kind of a normal manner. Her re-enactments of the accident are getting scarier and more upsetting (they now involve loud “breaking” noises, and she talks about blood and “owies” constantly). She’s also still not sleeping correctly, and has gone 16 or 20 hours at a stretch without eating. I still haven’t sent her back to school, because I’m afraid she’ll be too much of a nuisance, and that she’ll be too scared, whichmeans she is home allthe time, and whining or crying unless she's got Plaza Sesamo or Blue's Clues on. :( I am really worried about her.

Diapers!

Wow. Bay area people are the best! We can't do laundry right now, so we've stopped using the cloth diapers temporarily. However, they're expensive, so we put up a request on freecycle (like a free craigslist that tries to keep stuff out of the landfill) asking for diapers in size 4 or 5. This is what we got:



I'm amazed at the lengths perfect strangers will go to for folks in need.

In Needlenoggin news, he's awake and feeling much better. He was asleep when I went today, but woke up, talked about housing plans, and smiled at the silliness of Rorysaurus' latest song. High spirits and no hallucinations, although it seems he was hearing a few sounds that weren't there earlier today, his nurse reported. Not bad, all things considered.

Oh, and Rorysaurus has decided that she can save things from falling by "airbending" (a term for elemental magic from a show she watches with Needlenoggin). Very cute to watch her tr to move the air to her will.

I was telling a friend today that in our home alone, this year, we've seen more surgeon's bills than the average cost of a home in the US, and close to what my grandmother's Souther California home sold for just a few years ago. Bring on Universal Health Care!

Awww, thank you Reebles!

The donation sites for Needlenoggin and Little Monkey are hosted at Reebles.com. Well, on their main page, Reebles has a link to their corporate blog, and they've picked up the story and have it as their top blog post here.

Needlenoggin's reflexes continue to exist, and he's able to feel pressure, if not touch, in a few points on his lower half.

Rorysaurus is throwing up bile (probably due to her refusal to eat), but is otherwise the same. We're trying some soup tonight.

Wish us luck on the home/van/wheelchair hunt!

Bad headline

So, the headline at OaklandTribune.com reads: Family blames landlord for accident that paralyzed man. However, if you read the article (well written by Ms. Woodall), you'll notice that none of our statements say anything to that effect.

However, in the real paper, the article is titled "Hero Paralyzed; Man falls as rotten landing crumbles." Weirdly enough, the type is exactly the same. Here is what the newspaper article looked like:

Doesn't Tuffy look great? Anyway, we're getting a copy framed for Needlenoggin, and sending a few to family as well.