Wednesday, September 24, 2008

T-1 ASIA C (and other things)

So, Needlenoggin has been upgraded to a T-1 ASIA C (he was ASIA B before hand). I've spoken with his neurologists and neurosurgeons, and finally found SCI Info Pages as a great website to explain all of this nonsense. What follows is a short explanation of what this means, in layman's terms.

There are 4 parts to your spinal cord. The part that attaches to your neck are the Cervical vertebra, the ones from your shoulders to your hips are the Thorasic. Then there are five Lumbar and the fused Sacrum at the end of the cord (your tailbone). These are abbreviated C, T, L, and S.

According to Dr Wise Young at Rutgers, "In general, neurologists define the level of injury as the first spinal segmental level that shows abnormal neurological loss. Thus, for example, if a person has loss of biceps, the motor level of the injury is often said to be C4. In contrast, physiatrists or rehabilitation doctors tend to define level of injury as the lowest spinal segmental level that is normal. Thus, if a patient has normal C3 sensations and absent C4 sensation, a physiatrist would say the sensory level is C3."

Needlenoggin is a T-1 classification with impairment at C-8 (some tingling and numbness, but control of the muscles in his hand). The ASIA is just the name of the organization that created the scale of injury, the American Spinal Injury Association. Then we get to the numbering, which is very confusing. Here's the RoundPeg version:

A= Complete: No feeling or motor control below the injury level.

B= Incomplete: Feeling but not motor control below the injury level. (According to Dr. Young, a rather rare classification). this is where Needlenoggin was before.

C= Incomplete: Some motor function is preserved below the injury level, but less than half of the muscles below the injury are at grade 3 (able to go through a full range of motion against gravity, but not resistance). This is Needlenoggin's current classification).

D= Incomplete: More than half of the muscles below the injury are graded 3 or above.

E= What Spinal Cord Injury?

Ta-da! What would you all do without me? Anyway, so that's the good news. the bad news is that no one knows when he's coming home (still!) because his Physical Therapist wants to keep him longer now that he'd get something out of it (can actually do rehab now that his cast is off) but the center still wants him gone. Of course, Needlenoggin wants to be home, himself, but knows that the in-house rehab is best for him. We'll see.

Now, the pictures you're all waiting for:

The Oakland Fire guys sent Rorysaurus a firefighter outfit, and some toys. She now thinks that all firefighters do is bring toys and "look at you when you hurt your head." So, of course, she brought the biggest toy of them all to Needlenoggin, and checked on his head.

I don't have a photo yet of her and "PJ", but she named one of the monkeys sent to her after the firefighter who cared for her after the accident. Very cute.

Oh, and the above photo is of a piece of her artwork. I didn't touch a single pen on this (although I did prompt things like "does he need another arm?" and when she asked where his chair went, said "draw circles here"). This is, to quote her, Rorysaurus and Needlenoggin going to the park. They are holding hands." Too sweet.

This morning she woke up with a 99.5 fever, so she stayed home today and vegged on Blue's Clues.

Saturday, September 20, 2008

Needlenoggin update (with video)

Well, his medical drama continues. I saw Needlenoggin on September 7th before Little Monkey's surgery, but after his horrible experience with the terrible night-nurse, I got my mother to call every shift to talk to each and every nurse assigned to him at SCVMC. We made sure he got his medications on time, and everyone told us he was doing splendiferously.

Turns out, that wasn't the case. The catheter that was misplaced continued to be uncomfortable, and began to bleed. This triggered some worry, but not really enough to do anything. Then, on Monday, the 15th, he was delirious and difficult to understand on the phone. Tuesday, he called incredibly confused and in tears. They'd not gotten him all him medication again, and he had a fever of 103. They had put him in his chair at some point, and he was so dizzy and uncomfortable that he went rolling down the aisle looking for a doctor. A nurse, who we'll call "Mess", told him he did not need to see a doctor and was fine. When, during their conversation, he nodded off because he had a fevergot in his face and screamed at him, and then forced him back into his room. Then, he was put back in bed and not medicated or turned, and was ignored as he called for the blankets to be taken off of him, or for ice packs. That's when he'd managed to call my mother.

Needless to say, I was so mad I could spit. He told us that eventually, a sweet nurse who wasn't even assigned to him, Jackie, came into his room and put ice packs on his legs and a cool rag on his forehead, and held his hand while his fever came down a little. We called her to let her know she was an angel and, at his request, brought her a tin of cookies. She was compassionate and kind and good, and provided the kind of care that everyone hopes their loved ones are receiving in the hospital.

Anyway, at that point they decided to find out what had been causing that whole nearly-brain-poaching fever, and it turns out, it seems to be a kidney infection. You know, the kind of thing caused by a misplaced catheter and orders to have a very, very, very low fluid intake? Grrr.

We got there on Tuesday afternoon to discover that, despite orders that his back-staples come out on the 10th and his cast come off on the 12th, it was now the 16th, and neither had been done. His attending physician came in and let us know they were going to do a CT scan to check for infection. "But," Needlenoggin inquired, "didn't they just do a scan two hours ago?" Of course they had, but the orders for the neck-to-hip scan had been ignored and they'd only scanned his lungs. Irritated, Needlenoggin asked about the cast again, and was assured it was coming off right then. He rolled his eyes, and the doctor seemed surprised he didn't believe her. "I've been promised that this thing was coming off for 6 days," he told her. She then promised that she'd get someone to wheel him in to the cast guy before his CT, in ten minutes or so. After 4 or 5 minutes, my mother and I went out to wrangle the kids so they could ready my brother for his trip down. We were told to come back in an hour or so.

An hour later, I came back in and said, "Hey, you're back!" He turned to face me. "Back?! I haven't gone anywhere!" We went to go find nurses, and they said they'd been waiting for the cast guy to come up and get Needlenoggin (not Standard Operating Procedure). So they called down, and the guy, who'd been waiting for Needlenoggin to be wheeled down to him for over two hours, and he was on his way out for the night to go to dinner. "He can't wait just five minutes?" Needlenoggin implored. My mother talked to the guy and he agreed to cut the thing off. "You're wonderful," she told him. "Yeah, well, tell my wife that. I'm late for our dinner date and she's going to be angry." (We bought his wife flowers and a card the next day).

We got ready to leave that Tuesday night with plans for my mom to head back on Wednesday morning, stay the night, and for us to come get her on Thursday.

"Wait," he said. "Before you go, I have a trick to show you. It is a LOT of work and will tire me out." Here's the trick:

Can you believe it? He says that he's still in loads of pain, and he thinks he's just learned to trigger a spasm to move the leg, but "moving is moving, right?" I'm so pleased for him! (I hate to note this, but this ability to focus all of his strength, to the point of exhaustion, so that for just a few minutes he can force small, uncontrolled movements of his legs, does not make Needlenoggin UN-paralyzed. His prognosis is still grim, and his chances of EVER getting out of a wheelchair, short of this robotic get up:

is very, very, very shoddy. I feel like I have to mention this as two people emailed me to say how happy they are that he's now all better. He isn't. The best part of this news, really, is that it means all the nerves aren't shot, and that he may regain bowel and baldder control sometime in the future.)

The next day we sent my mom down on BART to see him, and she took down the flowers and cookies and candy for the cast guy's wife, Jackie, and the other nurses who aren't hurting him. While she was there on Wednesday, they took out his back staples and started him on antibiotics.

Thursday night, we all came in, and Needlenoggin got to see Rorysaurus:

Made both their days. Rorysaurus also made friends with another patient's girlfriend, and when she'd wander off, we'd find my daughter snuggled up in this young lady's lap. A very sweet family, that one. Little Monkey babbled happily at his uncle, who was mildly disconcerted. "It interacts now?" He asked of Little Monkey. "See what happens when I go away?"

So, now he's on oral antibiotics and, supposedly, his Medi-Cal application has been approved (I'll believe it when I see it, though). As it stands, he should be back at the end of the first week of October, if all of his medications, equipment and paperwork are done AND he's been assigned to a new GP and spinal rehab outpatient center.

Julian is home!

After Karen and her lovely daughter came to visit in the ICU, Little Monkeystarted acting like he was in more and more pain. For about half the time he was awakem he was smiley and interactive, and had long conversations with "Fire Bear" (one of the toys brought to us by the Oakland fire department).

During these periods, we managed to bring Rorysaurus back in to see him, and she had a great time visiting in her surgeon's scrubs:

Little Monkey was glad to see his sister and even batted keys for his Papa:

Poor little guy then got very, very fussy, and so I held him until his drugs kicked back in.

Tuffy took Rorysaurus out to the little kids' play area and let her run around before heading home. Seriously, is this a GREAT hospital or what?

I had to stay with my monkey baby because he wasn't eating from the bottle anymore, so after a few hours napping while Godmom and/or Tuffy watched at bedside, I had to be with the cute little guy. He was waking every two hours, refusing a bottle, craving his Morphine, and having a very rough time. The nurses, fantastic and wonderful women that they were, helped me figure out why he was in more pain than the last time. Turns out, instead of Morphine and Tylenol with Codeine, he'd just been getting regular infant Tylenol. Orders were written for Ty-Co, and upon reciving his first does, Little Monkey tore out his IV (which was only being used for the morphine at that point anyway). The nurses and I decided not to put the IV back in right away and to see if the Ty-Co worked for his pain, in which case he'd be done with his IV, and would only have his O2 monitor and his heart stickies on. The oral meds worked, and he was able to avoid another needle stick, even at his most swollen:

Almost immediately after the oral meds had started, they moved us to the floor (on Friday morning). He skipped the annex of the ICU this time (the quiet side) and went straight up a whole day earlier. Then, up there, he made lots and lots of friends with student nurses, including this guy who said no one would ever believe he'd been holding a baby:

Friday night, the plastic surgeon came by, checked the baby out, and said he could go home if he wanted. Our pediatrician agreed, and so the neurosurgeon was apged to sign the orders. Eventually, the only thing holding us up was the Rx for his pain meds, which we got and rushed home. The bandages came off once we were home, as per instructions:

The scar looks FANTASTIC, even just a few days post-op, and it is easily hidden by a hat:

Not that it matters when you're looking at his cute little face:

The plan had been to build him "man-brow" but since they worked only on the back of his head, his little face has been left alone. However, a good third of his head has no skull in it, so he's got a soft-spot the size of my hand (fingers included). There may be more surgery for the little dude, but this time around, he did fantastically, and he isn't getting helmeted (at least not as of now).

He's back to his cheery little self, and played quietly in his exersaucer and with Rorysaurus Godmother while we moved little bits of stuff over on the weekend to the new home:

A special thanks to Godmom (as well as her son and daughter-in-law) who came to lift heavy things, clean and cook for us while we were in the hospital.

Wednesday, September 10, 2008

We made the news again

Except this time, it was for the WGU scholarship! I went to google to look something up, and found these stories:

Here we are on Yahoo News in a story entitled Her Picture Spoke a Thousand Words and Won a Scholarship. It was also in the Denver Post, Scott Trade's website,, the Biloxi Sun Herald, University Business Magazine's website and CNBC. I also noticed that Needlenoggin's story got picked up on Remodeling Magazine's Website.


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!

Tuesday, September 9, 2008

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.

Monday, September 8, 2008

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.

Thursday, September 4, 2008

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.

Wednesday, September 3, 2008

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?

Tuesday, September 2, 2008

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.


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.")