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|Thursday, April 19th, 2012|
Facebook is down! OMG, FACEBOOK IS DOWN! What will I do? How will you people know my every thought?
|Tuesday, January 25th, 2011|
I'm going to try posting for the first time in months here. I've been all about the FB, but not the LJ....I know, I'm bad.
So, let's see, what's new.....so my dad is living with us. Him and my mom split up several months ago. Mom has a cute (although teeny tiny) apartment downtown and my dad has been living in his car. Yes, living in his car was totally by choice...he's done it before. Kind of his hippie/nothing tying him down thing. So he had been parking on his friend's property and occasionally sleeping in said friend's garage. But by December it was just too damn cold. So he called and asked if he could move in until he can get his own apartment. Of course we said yes. Well, I should rephrase....*I* said yes. Tom is a little irritated....not so much that it's a problem though. So dad is in the process of getting on disability. He can get it for physical stuff because of his knee replacement. But he can also get it for his mental health issues (severe anxiety disorder, clinical depression, PTSD, ADD). Hopefully it'll go through soon. That would also get him health insurance.
Scotty is doing well. He was horribly sick last month, but we managed to keep him out of the hospital. Seriously, he was so sick he couldn't walk. Dr. Liu carried him around his office and then got him a wheelchair to get out to the car. It was awful. He survived though and now he's doing fine. He lost three pounds during the illness, but he's gained it back now. He's been bumped up to four feedings a day to try and get his weight going again. We got his first report card too. He's doing.....ok in school. He's pretty delayed compared to the other kids. But not so much that he needs special ed. He's super cute though and that will get him through life. It's worked for me.
Hunter had an interesting experience last week. My ex called me and said that Hunter had passed out. Of course he hadn't taken him to the hospital because he needed me to tell him that that's what he should do....sigh. So we rushed him to the ER. The story was this: He'd been feeling sick and assumed that he just had a little cold. Then he gets up in the middle of the night to pee and passes out in the bathroom. He wakes up on the floor tangled in the toilet paper dispenser and towel rack, which had been torn off the wall when he fell. Pickes himself up and heads to the kitchen for a glass of water (no, it didn't even occur to him to wake his dad up). He passed out in the kitchen and hit the floor so hard with his face that he broke out his front tooth. Anyway, turned out that his "cold" was pneumonia and strep. They got him on meds and then I took him to the dentist to have the tooth repaired. He was really embarrassed about having no front tooth. Plus the nerves were exposed *shudder*. He feels much better now. Last time I had pneumonia it took me 6 weeks to recover. He did it in three days.
What else should I talk about? I'm in the midst of changing my crazy meds. My mood stabalizer is making me gain weight, so we're cross tapering off of it and on to another one. Hopefully that'll work. My therapy is going well too. I graduated to every other week and I'm still quite proud of myself. Three years ago I couldn't leave the house without a panic attack....now I'm pretty fucking functional.
Hmmm....I can't think of anything else right now. But at least this is a start.
|Wednesday, July 7th, 2010|
I'm really groggy and allergy addled, so hopefully I can form complete sentences here.
Scotty had a fabulous Dr. appt. today. It was his first appointment with the staff at the new feeding clinic. They were AMAZING. It was tough for the staff at the old clinic to get any sort of evaluation done on him because he wouldn't participate in anything and wanted nothing other than to go home. But the people at the new clinic were completely diffierent....and the clinic itself was completely different. The "exam" room was huge....lots of chairs, mats to play on, and toys galore. The team was a group of four women. The doc was out sick, so we haven't met her yet, but the rest of the team consisted of the occupational therapist, speech pathologist, dietician, and social worker.
So the Speech chick and the therapy chick were both young, attractive women. They got right down on the floor with him and started playing. I thought he would freak, but he was waaaaaay too busy showing off his manly Duplo tower building skillz. Then they brought out a blanket and snacks and had a picnic on the floor with him. He loved it! And they were able to do complete evaluations on him while disguising it as eating and playing. They ROCKED.
In the meantime I talked a lot with the dietician about the last feeding clinic, what they wanted us to do, and why it didn't work. And the social worker and I talked about the amazing amount of stress that we've been under.
So, long story short, they were amazed at the amount of weight he has gained. In April, when he was first hospitalized, he weighed 29 lbs. Three weeks ago, when he had his first surgery, he weighed 32 lbs (yes, we'd been able to bring him up three pounds by chucking that stupid diet plan out the window). And then today he weighed 34.1 lbs. THIRTY FOUR POINT ONE.
So they actually said (and I never thought I'd hear this) that his weight gain has been SO good, that he doesn't need more than two tube feedings a day. He'll continue to eat through his mouth like normal, and then he'll have a tube feeding twice a day at the same time everyday. We're to treat the scheduled tube feedings like taking medicine......same time every day to make us healthy. That way it's never linked to not eating and therefore never seen as a punishment for not eating well. Made sense to me.
So the dietician thought that gaining one pound a month would be perfectly reasonable. So the goal is for him to be 35 lbs in four weeks. If he's not, then we'll add another tube feeding in.
OMG, I can't even tell ya'll what a relief this is. The nurse also came in and coached me on wound care and said that the tube looks just fine. The stuff weeping out of it is totally normal for the healing process. She also gained Scotty's trust by promising not to touch it and respecting his space.
So after the appt, we stopped and got frozen custard for everyone and brought it home. Scotty had chocolate, which he decided to drink out of the container instead of eating with a spoon. When he was done, he looked up at me and Naisa with a chocolate mustache perfectly lining his upper lip. Naisa leaned over and said "My name is Inigo Montoyo".....I laughed so hard I nearly choked on my own custard.
It's like 5,000 degrees today. At least Tom put the air conditioner in the family room, so we can escape in there for a little while.
|Tuesday, June 29th, 2010|
I suppose I should make a brief post while I have a chance. So, to fill everyone in.....
Scotty had his surgery on the 16th. All went well. He had a lot of pain at first but gradually got better and we got into a routine with the tube feedings. Then on Sunday (two days ago) he went for a walk with Tom. Now, the tube hung out of his belly a couple of inches above his bellybutton and down to about penis level (we actually called it his double ding-ding because he'd have to move one to the side to go pee). So it ended up hanging just a few inches below his shirt and really didn't get in the way or get caught on anything.....until he was riding on Tom's shoulders. Tom went to pull him down, the tube got caught at his neck/shoulder crease and got yanked out. Holy shot, the kid had a hole in his stomach....it was like a gun shot wound! OK, really it probably wasn't that bad, but it sure seemed like it. He had blood and stomach contents leaking out of his belly and down the front of his clothes.
Needless to say, we packed a towel on it and called 911. Two firetrucks came and then the ambulance came. They rushed us to the hospital. The hospital staff (this is our small local hospital) had no idea what to do. So the doc ended up calling the surgeon across the bridge where we had the surgery done. He told them to put gauze over it (even with a hunk of his insides hanging out....it was crazy looking) and then we ran him to the surgeon across the bridge for emergency surgery yesterday. He handled the surgery like a champ. He was awake from the anesthesia within half an hour and immediately asked when he could go to the playroom and play Mario Kart Double Dash on the nintendo. He didn't even require TYLENOL. They let us go home within a coupple of hours because he was doing so well.
When we got home, I wasn't supposed to feed him right away, but the kid was starving. He ate two scrambled eggs, half a turkey sandwich, two bags of snack sized chips, a fruit roll-up, a bag of fruit snacks, and two glasses of apple juice. Oooooookay. I don't know how he fit it all in there, but he got it all in and it stayed in, so I guess that's good.
Today he's acting COMPLETELY normal. He just raced through the living room demonstrating for me how he can kick his own butt when he's running. Sigh.
The good thing is that they put it the little tiny tube that they would have put it in after he'd had the long tube for two months. This one won't get pulled out. It only sticks out about half an inch from his skin.
OK, that's all I have time for. The kids are racing around at warp speed and Mommy's nerves are just about shot.
|Friday, June 11th, 2010|
I bought a car today. Yay me! It's an '02 Altima. Love love love it! It's in flawless condition. Leather seats, all the upgrades, sunroof, V6 3.5L. LOve it. And when I test drove it yesterday I found a function on the dashboard that averages the gas mileage. It's been getting 24.4 mpg....a lot better than the less-than-ten that my van gets. Best of all, it doesn't rain inside! And I got it for $1,000 under blue book. Soooooo excited. I went to the bank with Anna, the owner, today and gave her the cashiers check, she paid off her loan, and they handed me the title. Then she wrote me out a receipt. And now we're going to pick it up at 6:30 tonight. It's silver with grey leather seats and a fin on the back. Love it. Oh, and they have a file in the glove box with the records and receipts for every service and oil change they've ever had done on it. Score! Have I mentioned that I love it?
Naisa took Scotty to the carnival at the college while I was dealing with that stuff. Free food, free ice cream, free popcorn, free balloons, free face painting. They had a good time. There was a guy dressed in the penguin mascot suit too and he gave Scotty a toy. It's so cute watching Naisa and Scotty together too. He's like her own baby. It was adorable watching them walk off hand in hand.
This weekend is the True Blood season premiere. CAN'T WAIT. Also, one of the girls at the music store clued me in to the fact that Eric Northman (my favorite TB character) is in the Lady Gaga Paparazzi video. *squee* Naisa and I had to watch it. Bizarre video, and he's not as hot in it as he is in TB, but still good.
Now that I've got the car shopping done, I feel more prepared to deal with all the medical stuff next week. Scotty and i have been talking about the surgery and he's fine so far. Tuesday will be my final pep talk with my therapist before the surgery on wednesday, so I think I'll be ready to handle it.
|Thursday, June 10th, 2010|
So I found out yesterday that I really upset someone on LJ. Gah! Not inside my journal either....inside someone else's. If it was in mine, I wouldn't be worried, or even feel bad. But inside another journal.....man. I feel really really bad because it's someone I really like too. I'm used to offending people, but not people I LIKE!
I looked at an '04 Passat yesterday and loved it. We're trying to finalize the purchase today/tomorrow. Cross your fingers for me.
I had to make Hunter a last minute doc appt. today. He's got a massive ear infection. Hunter doesn't register pain like normal people. Seriously, his eardrums have ruptured before and he never said a word. So I was happy (and surprised) when he emailed me yesterday and said that his ear hurt and that he wanted to go to the doc. So I got him in this morning and, indeed, it's crazy infected, but not ruptured yet. Now he's got some antibiotics and then he also has antibiotic drops.
I also stopped at walmart to pick up some hair color. Ireland and I were talking about genetics this morning. It started because one of her friends at school has one brown eye and one blue eye. So Ireland and I were talking about eye color and the fact that three of the kids have the same eyes that I have. And Hunter has brown eyes because his dad has brown eyes....blah blah blah. Then we started talking about hair color and how it changes as you get older. She said "Your hair is changing....now it's all grey in the front". Alrighty then. I'll be coloring my hair today!
I bought a new steering wheel cover for my new car while I was out too. It has fish on it...because I'm a Pisces. Love it!
Man, it's pouring right now! I love the rain...though I know some of you are suffering (sorry Wendy!). It'll definitely be nice to have a car that doesn't rain inside though!
I need to pick up some things for Scotty for our hospital stay. He's got sweat pants, but he needs some sweatshirts too. And some slippers and slipper socks. I need to cut his hair too. It's so long that the curls are all crazy. Silly thing to worry about, I know. My kid is having surgery and I'm worried about his hair. But it keeps me from worrying about everything else. *nods*
|Wednesday, June 9th, 2010|
TMI alert....feel free to skip this paragraph. So after ten years in a relationship, the sex gets, you know, kind of predictable. I mean, it's good, but it's always the same. Except last night. HOLY SMOKES. I am incredibly relaxed. Tired, but relaxed. ;-)
Tom was making fun of me this morning because I've got some goofy curls sticking up off the top of my head. A few minutes ago I was looking at Scotty and realized that he has the same goofy curls today (his hair is getting too long). It makes him look like a cherub....who's just about to get into some mischief. Somehow it looks adorable on him....but mine make me look like I'm hopelessly trapped in 1989.
So I haven't had any money to buy books for my Kindle. I got a shorter post for my labret piercing a couple of weeks ago and Tom was furious. He hates the piercing, so spending money on it makes him crazy. So to calm him down I told him that I won't download any more books until the 15th. Sigh. So I've been stuck with the free books on Amazon. The free books are fine because I'll read damn near anything. But the one I'm reading right now seems to be a christian romance. Kind of a weird combination. But whatever, it's something to read. Next is The Adventures Of Sherlock Holmes, Sense and Sensibility, and Warlord Of Mars.
The car shopping is going slow. We're going through private owners (instead of dealerships), which makes it a little less stressful. Private owners don't try to sell to you. Either you like it or you don't. So we're looking at an '03 Altima tomorrow. It looks great in the pics and the owner has been really nice and responsive. I'd prefer an Accord, but those are hard to come by in our range. I really want to get this over this week, since next week will be crazy, what with the surgery and all.
I *think* I don't have much going on today. Just getting the kids too and from school, cleaning the kitchen, doing a few loads of laundry (and our dryer is dying, so it takes FOREVER), and tidying the living room. I really need to take out the bathroom garbage too. Oh, and speaking of laundry, Scotty had an accident last night. Really, really rare for him. I don't know how his bladder could have been so full. We always pee right before bed, and he'd only been asleep for an hour. But man, it was a huge mess. So I have pee sheets to wash today. Yuck. Oh, and it all happened right in the middle of the Glee season finale. *grumble*
Of I run. Naisa is just about ready to be driven across town to school. Must remember that it's an early release for Ireland today too.
|Tuesday, June 8th, 2010|
Sooooooo tired. I know I'll get no sympathy from your guys with babies who don't sleep all night. ;-) But I got in bed at 11 last night. Finally fell asleep at 1:30....and got up at 4:30 and couldn't go back to sleep to save my life. So I decided to come out to the couch and try to go back to sleep, away from Tom's snoring. I got all comfortable, closed my eyes, and Scotland woke up and had to be taken to the bathroom. Sigh. Got him settled, got comfortable again, and Ireland woke up with a bloody nose. Double sigh. I made a pot of coffee and didn't even bother trying to sleep anymore. Of course Tom woke up at 7 after going to bed at 11 last night. He's one of those irritating morning people.....all chipper and talkative and "Wow, you were up early!" *grumble*
The car shopping is....a pain in the ass. I looked at an '02 Accord yesterday. It was a nice car, and I would have loved to own it, but the dealer wanted $500 more than we had. We said no and walked out. I will not pay $500 more, or $5 more for that matter. You wouldn't think it would be so hard to find a decent car for $10k. I mean, really. I just want a car with four doors, preferably an Accord, Altima, or Camry, that is safe....unlike my van which is pretty much a death trap at this point. Ugh.
I sound really grouchy, but I'm actually not that bad.
I handled the pre-registration with the hospital yesterday for Scotty's surgery. Good to get that out of the way. Now a nurse will be calling me to go over the medical history and the last minute pre-op instructions. I'm also going to call the surgeon and ask for some baby valium since he gets so upset when he has to go to the hospital. I want him to at least get some sleep the night before so that his little body is in good shape for the surgery. Luckily he's been holding his own in the weight department. Still dangerously small, but he's been maintaining at 31 pounds.....as opposed to the 29 pounds he was at when he was hospitalized last time. He actually has butt cheeks right now. At 29 pounds he's got no butt cheeks...just a hole...like a cat.
OK, off to take Nai to school.
|Monday, June 7th, 2010|
I had the weirdest dream last night. I dreamed that I was going to commit suicide (not really...it was more like a cry for help) and for some reason the only way I could do it was to hold shit in my mouth. Seriously, shit. In my dream dog shit was highly flammable. So along with the shit I also had a mouth full of lighter fluid......and a baby chicken. And then I had to set the baby chicken on fire and wait for it to catch everything else on fire. Man, my subconscious was working overtime!
|Saturday, June 5th, 2010|
I've been sick with The Worst Cold Of The 21st Century. I'd been slowly dying all week on the couch, and then Naisa came home and took over for me yesterday.....so I promptly got in bed and slept for 22 hours. I'm starting to feel better now. I'm up and about, but my legs start shaking if I stand for more than a few minutes. Christ, I feel like I'm 90.
As Scotty's surgery looms nearer, I find that I'm having a harder time keeping my anxiety under control. I know it's not helping me to get worked up. It's certainly not going to help him. It gets me nowhere. I have a game plan, I'm doing as much as I can, and there's no use in worrying about something I can't control. Yes, I have a good therapist. But really, when it comes to anxiety, KNOWING that it doesn't help me really doesn't make it go away. Just sayin'.
So I have to buy a new car. Not a NEW car, but a new-to-me car. We have the blank check from the bank sitting here just waiting to be written. All systems are go....except I just can't make myself actually start shopping. Seriously, I'd rather tear my fingernails out than go shopping for a car. I WANT a new car, I just don't want the experience of BUYING said car. Ugh.
Tom finally got the dryer fixed. It had been broken for almost a week. Imagine what our laundry room looks like right now....considering the fact that we create two loads of dirty laundry a day.
So Naisa is set to graduate from college on the 17th. Can you believe it? She really didn't want to go thru the ceremony, but my mom guilted her into it. The only downside is that Scotty's surgery is on the 16th, so I'll be leaving him in the hospital with tom to dash off to the graduation, and then dashing back to the hospital. Ugh. But still, my kid is graduating from college. Craaaaazy.
I should probably get Tom up from his nap soon. If he sleeps for too long, he'll get a headache. Not me. I can sleep for 22 hours and just feel better! We're grilling cheesy dogs tonight.
|Wednesday, May 12th, 2010|
Yeah, so yesterday I got a labret piercing (between the bottom lip and the chin). Holy smokes.
OK, so I'd been thinking about doing it for a long time. But, honestly, I was terrified. I'm kind of embarrassed about being so scared, but there it is. So I walked into the shop of my Piercing Guru and asked about making an appointment. The owner said "an appointment in the future, like tomorrow? Or a walk-in like RIGHT NOW ?" My plan had been to make an appointment for later in the week, but I realized that if I did that, then I'd never actually show up. Best to get it done.
So I filled out reams of paperwork, went over all the post-care crap with the helper-girl, waited around, got super nervous, and then went back to The Room.
So Rachel had me sit on the table for a few minutes while we chatted (I know she was getting me to relax). Then she asked me to lay down, which was REALLY hard for me. Being in a prone position brings up some of my.....issues. Anyway, I got myself laying down, and she leaned over me, made eye contact, and helped me do some breathing exercises. It was actually really soothing. Then she cleaned my lip, inside and out (I had already used her mouthwash too which tasted like propane), and lined everything up. Then she said "OK, I want you to take a deep breath, the deepest one you can take, now slowly-exhale-and-here-we-go". Holy shit. The pain was surprisingly intense. I mean, she did it really fast, but I have a really thick lower lip (yeah, thanks mom!), so it SEEMED like a lifetime. And yes, I shrieked, I'll admit it. I then apologized about 30 times while she laughed and assured me that it was perfectly fine and that everyone reacts when a needle gets shoved through their face. Then I got really lightheaded and just decided to hang out on the table til I could sit up.
So obviously, my face hurts. It hurts less than it did yesterday, but the swelling is somewhat comical. I pretty much look like I got punched in the mouth. That said though, I really like it. I like what it will look like after it heals. Now I wish that Tom wasn't so disgusted. He agrees that it's my body and I can do with it what I want, but he still won't look at me. I know he'll get over it. Sooner or later.
|Monday, May 10th, 2010|
First off I'd like to say that Scotland is driving me out of my mind today. Constant attention needed....constant tantrums....non-stop talking. Mommy is feeling very overwhelmed.
I am in love with my Kindle. Seriously, how did I ever get along without this thing?
I called the feeding clinic over at Emanuel (hospital) to set up an appointment for Scotty. They couldn't get him in until July 7th! So I made the appt. and then called the pediatric GI surgeon to see if we could set up the procedure to place the directly-into-the-stomach feeding tube before then. I left a message and heard back from him within five minutes. We talked again about the surgery, he agreed again that it was a good plan (I think he wanted to make sure I had a good idea of what it would entail) and now I'm waiting for the scheduling person to call and set up the hospitalization date. I'm terrified out of my mind, but I'm just not thinking about it. I mean, I KNOW he needs it, and I know it'll make him better. But sending your kid into surgery is never fun.
I then called the prescription coverage people and got them to do an emergency override and cover Ireland's asthma medication. God I hate dealing with them.
I had a good mothers day yesterday. I slept in until 10. Then Tom ran out and got me an egg Mcmuffin. Then the kids came downstairs with presents that they'd wrapped all by themselves. Scotty gave me one of his favorite matchbox cars (wrapped in equal amounts of paper and tape), Ireland gave me a copy of one of my favorite books from childhood, and she gave me a coupon book that she made me at school. Tom got me tickets to the upcoming fight, with backstage passes to meet the fighters, a ring, and a screen door, since I've been wanting one for nine years. Naisa cleaned the living room, bought us dinner, and gave me three of my favorite things....a People magazine, peanut butter Twix, and carrot cake.
So Tom started hanging the screen door yesterday. Christ what an ordeal! He finally got the door itself hung (and it's only kinda crooked) and then ran out of daylight. So I went out there today and tried to finish installing the handle and such. First I had to scrounge around for half an hour in the barkdust looking for a piece that he'd lost. Found that, tried to install the handle, and discovered that he'd drilled the holes crooked so now the handle won't go on. Sigh. I'm not strong enough to get the drill bit to go through the metal, so I just decided to leave it for him to fix.
I could so go for a nap. But I have a disgusting kitchen to clean....and three more loads of laundry to do.
|Wednesday, April 14th, 2010|
So am I the only one who thought last night's American Idol episode was the most boring one ever? Good lord. I mean, yeah, Crystal and Casey sounded great. And Lee sounded great....even though he looks like someone beat him with the ugly stick. But it was an entire show of completely unremarkable performances. And normally I like Siobhan, but what the hell was up with the alien costume she had on? And the way she sang that song made her sound closer to 50 than 20. I also hated the fact that I liked Tim.
Enough meanness....Glee was great! There were so many hysterical lines in it. I loved the one where Sue told Will that he had enough hair product in to season a wok. *snort* And the "dolphins are gay sharks" one. Can't wait til next week.
So Scotty and I have had the flu. Last week, remember, I took him to the doc and then to the ER (later in the day) when he threw up his feeding tube. That was on friday. So they said to bring him back in on sunday if he was keeping food down to have his tube replaced. By sunday he was feeling fine, so we went back in and got the best doc ever. Scotty was terrified and crying before we even got there. So the doc asked about how the last tube placement had gone. I told him that it took four of us to pin him down and that they had to try SEVERAL times to get it in. He was horrified. He said "Great....so now they leave you with a kid who will be terrified of doctors and hospitals for the rest of his life". Yep, that's kinda how I felt too. It seemed awfully barbaric for a childrens hospital. Anyway, so this doc said that he absolutely refused to traumatize a child like that. So he shot him up with Ketamine and slid the tube right in with nary a protest. Scotty has no memory of ever having even been to the hospital.
Unfortunately, that tube lasted for all of four hours before he threw it up. Sigh. By that time I was already in bed with my turn at the stomach flu....so Tom was handling the tube feeding, and then the subsequent vomit clean up. He had to run Scotty to the doc on Monday morning by himself because I couldn't even stand up. The doc checked Scotty's weight and gave him a look-over and sent him home with a prescription for nausea meds. He was supposed to be seen at the specialist's office yesterday, but I had to reschedule to next week. We did email back and forth with the doc (the is the asshole anti-sushi doc. I'm fairly certain he's a graduate of the Josef Mengele School of Medicine) to let him know what was going on. He decided that we should leave the tube out for a week or two until this flu is completely gone. He doesn't seem to want to address the fact that Scotty is sick every two weeks and that this will keep happening over and over again.
Needless to say, we're going to schedule our consult with a different specialist in the meantime.
So now Scotty and I are both laying around the house trying to recover. He hasn't thrown up today....and he did manage to eat two soybutter sandwiches. But he still has the explosive diarrhea and he's whining and crying constantly. Since I'm not feeling any better than he is, it's getting pretty tough to deal with. Welcome to motherhood.
We have to pick up Naisa in an hour and take her to the dentist. I'm thinking I'll take a nap when we get back.
|Wednesday, April 7th, 2010|
Yeah, so this week has been an adventure.
So yesterday we took Scotty to his appointment with the feeding specialist. He had dropped a full pound since the last time we were in. Soooooooo, the doc came in and broke the news to us that we wouldn't be going home. They took us right upstairs and admitted him in the pediatric ward.
So I can tell you what the game plan is for right now. But apparently the game plan shifts depending on how he does. They're saying that he'll have a nasal feeding tube for several months. He'll get formula fed through the tube five times a day. He can also eat and drink through his mouth. So we still encourage him to eat and drink normally, but now the pressure is off because we KNOW he's getting all of his calories through his nose. Eventually his weight will go up enough that they'll be able to take the tube out and let him just eat like a normal person. He'll still be able to do everything...he can play...he can go to Kindermusik....he just does it with a tube in his nose.
OK, so they admitted him and got us moved into a private room. After a good long wait, they took us all to the procedure room to insert the feeding tube. Holy shit...that was one of the worst experiences of my life. I laid back and held him in my lap. They'd wrapped him up in a sheet, and then I clamped my arms around him. Even with that, it still took me and three nurses to hold him down. He screamed so loud that his voice finally gave out....and so hard that he ruptured blood vessels in his face and neck. They tried four times with the normal sized tube, but they couldn't get it in. So they finally had to bump down to a baby sized one. So, on try number five, that one went in and they got it taped up onto his cheek.
Good lord was he upset. He cried off and on and clung to me for an hour or so. And then the nurse came by and made it alllllll better by giving him toys. They have two playrooms where he can go and play, or where he can just grab toys and take them back to his room. They also have wagons and a little riding car that he can prowl the halls in. Not just the halls on our floor either. We've toured the whole damn hospital in that thing. Plus OHSU (Oregon Health Sciences University) and Doernbecher's (Childrens Hospital) are connected by a sky bridge, from which you can see the sky tram that ferries people from the lower facility to the upper one where we're at. We've been patrolling that bridge all day. The nurse also let him pick out a handmade blanket to snuggle with that he gets to take home with him. He chose the John Deere one with the tractors. And they gave him a set of hotwheels that he gets to keep. And they randomly leave toys for him while we're out. We came back in today and discovered a truck that they'd left him. They also have art classes and they had a big bingo game going today. And he has his own tv. And bathroom. All in all, it's a cool place. You know, other than the nose tubes and stuff....;-)
So now we're in the "learning" phase. Today I got to hook him up to the pump that will run his formula through his tube, and unhook him, and flush the line with saline. Then for the next feeding I got to pump it in by hand with a syringe (kind of the backup plan, just in case). They were also going to teach us to reinsert the nose tube in case it gets pulled out. But now they're thinking that we probably wouldn't be able to do it since they had such a hard time getting it in. If it comes out, or when it needs to be changed, we'll bring him back to have it done.
So hopefully we'll be home on friday. We'll get hooked up with a home health group who will bring the equipment that we need to the house and supply the formula for him. In the meantime, obviously we have the laptop with us.
And that's it for now. Scotty is wanting a turn on the computer, and his dinner is coming soon too....the solid one, not the liquid.
|Sunday, April 4th, 2010|
Scotty's temp has been 101 for two days now. Baaaaack to the doc we go tomorrow. Sigh. I can tell he feels like crap right now, but he's valiantly putting on a brave face and stuffing himself chock full of easter candy. That'll be fun when it comes back up.
My folks should be here soon. Mom is coming over and cooking easter dinner here. Mom rocks. She's also taking Ireland out to the movies. And then me, Dad, Naisa, and maybe Tom are going out to see Clash of the Titans. Release the Kraken! I can't tell you how hard it is not to yell that out in bed....;-)
Woke up with another migraine today. I am currently wearing The Hat O' Pain.
Did I mention that I got my hair cut on Thursday? I really need to start reading my last post before I start a new one....I can never remember what I talked about. Anyway, got my hair cut. Took it from my waist up to my bra strap. Lots and lots of layers too. I'm a little overwhelmed with the curls right now. But I bought a new diffuser yesterday, so hopefully that'll help.
Folks are here.
|Wednesday, March 10th, 2010|
We had a horrible appointment with Scotty at the childrens hospital yesterday. Granted, it's only four ounces, but he's been meeting or exceeding his fat requirements every day, so he shouldn't be losing. So the specialist went through a whole series of scare-the-pants-off-us lectures (as if we weren't scared already). Then he wants a urine sample....no small feat getting a five year old to pee in a cup. Then we had to go to the lab and pin him down while they drew blood. He screamed the entire time and begged us to take him home. Now the doc is saying it could be cystic fibrosis......which is eventually fatal. As if this wasn't scary enough.
Now I'm a wreck. Normally I never cry...I'm just not a crier. But today I pour my cereal, I cry. I pee, I cry. I get Scotty some milk, I cry. My face is leaking and I can't seem to stop it.
That's all I have energy to type now.
|Monday, January 18th, 2010|
Just got back from my appointment with Dr. Liu. I swear I have never been so happy to have my pain meds refilled. Trying to suck water out of the carpet with the shop vac has KILLED my back. That and standing on the stepladder stretching my arms up over my head and cutting away the ceiling.....Oy.
So anyway, my appointment went well. We went over my lab results (I posted them on here a couple weeks ago). My biggest concern was that my cholesterol is 243. A year and a half ago it was 300, so I'd at least brought it way down, but 243 is still way too high. But when I asked him about it, he pointed out that my "good cholesterol" is 80. 40 is considered good. Anything higher than that is great....and he said that 80 is a reading that would make a cardiologist jump for joy. So he said that as long as my good cholesterol stays so high, that I could have a total reading of 243 for the rest of my life and be completely fine. Good to know.
He also looked at the inside of my nose piercing....and at the inside of my ear since I found blood in my ear this morning. He said the piercing looks perfectly fine and isn't inflamed inside. And my eardrum is fine. So he thinks that when the piercing got so inflamed last week and I had so much facial pain....my ear probably just needed to flush some of the crap (blood, pus) out. He saw nothing wrong, so that made me feel better. He did give me some prescription antibiotic ointment to use though, in case it flares up again. I can also use it to lube up the nose ring when I change it.....which came in handy when I got my fingernail caught in it a little while ago and tore it right out of my face. Sigh. It's back in now, but sore and swollen again. He said the ointment will come in handy when I have my lip done too, in case I encounter the same problems.
I was going to ask him about having the mole on my jaw removed too....but we talked about so many other things that I forgot. Next time. He wanted to know all about Scotty's appointment at Doernbecher's and how Ireland's asthma is doing.
So today has been the first day of Scotty's new diet. It's gone pretty well so far. He skipped breakfast (I slept in, and Tom didn't want to force feed him without knowing what my plan was), but he had greek yogurt and blueberries for snack. I screwed up and got fat free yogurt, and I'm sure that's not the only time I'll screw up, but it's a start. Then he had an egg salad sandwich (with extra yolks) and carrots with ranch for lunch. Then a hardboiled egg for snack, and we're having baked potatoes for dinner with all the fixings laid out for them to choose from.
Do any of you have ideas for fatty snacks? I've got the fatty meals down, but I'm having a hard time coming up with snack stuff. He's supposed to have lots of eggs, but he's gonna get real tired of them if that's all I give him for snacks...;-)
I know I had more to write about, but I forgot....and now I have to go scrub the potatoes and put them in the oven. This will officially be the first time in my life that I've baked a potato.
|Saturday, January 16th, 2010|
So, for those of you not on facebook, I'll recount our adventure yesterday.
Early yesterday afternoon I was helping Scotland on the potty. I kept hearing water, but it was raining really hard and I just figured it was the rain hitting the outside vent. Then I realized the sound was coming from behind me. I turned around and saw water pouring through my laundry room ceiling. THAT shouldn't be happening....especially since my laundry room is DOWNSTAIRS.
So, I hot-foot it up the stairs and discover that my hallway is flooded. The carpet was so squishy that the water was coming up over my feet. I traced it to the source and opened the closet that holds the water heater. I was suddenly up to my ankles in water. Apparently there was a rupture in the wall of the water heater because water was POURING out the bottom of it. AND it could have been going on for hours before I figured it out.
OK, so I couldn't get ahold of Tom. So I did what any girl would do in that situation and I called my dad. He was over in portland and couldn't come rushing over, so he coached me over the phone. I got the gas line turned off, but I couldn't get the knob that connects the water supply to the water heater to turn, since it was up so high that I could BARELY reach it AND it was screwed on really tight. I ended up having to run back downstairs and disconnect the water supply to the whole house.
I finally got ahold of Tom, and he came running home (his commute is about an hour) during which time we had no water and no heat since our heat is generated by the water heater. Tom looked at it, did some hemming and hawing, and then we finally called a plumber that kimie
recommended. They were GREAT. They sent someone over right away who confirmed that it was a whoppin' rupture and the whole water heater was unsalvageable. So he started calling around right away to try to get his hands on a new one (50 gallon gas one with the heater attachment....not easy). He knew that we couldn't stay here with no heat because of Scotty's inability to keep himself warm. He found one, ran over to portland to pick it up, came back, unboxed it, and discovered that the supplier had put the wrong one in the box. The plumber (Trevor) was sooooo apologetic, even though it wasn't his fault. And by this time it was after 5:00 on a Friday night, so no one would answer the phone at the suppliers office. Sigh.
Trevor planned to be there first thing this morning to ream them and get the right water heater. SO, we packed up the kids last night and made a run for a hotel. We got a suite, not because we're rolling in money, but because we needed the kitchen to feed the kids, and it sure made it a lot easier to get them down to bed sticking to somewhat their normal routine, since there was a separate bedroom. Tom and I still had to sleep in the room with them, but we could at least sit in the living room and plan out what the fuck we were going to do about the horrendous cost we were about to incur.
The kids loved the hotel. To them it was a grand adventure. Which was great since they're pretty set in their routine and I worried that they'd cry and such. The REALLY dug the free breakfast this morning...;-)
OK, so Tom came back to the house at 7am to turn on the fireplace and wait for Trevor. It got so cold with no heat that the TV wouldn't turn on until he got the room above 50 degrees. I stayed at the hotel longer to round up the kids and all the kidshit and stuff them food of free food before we left. We got back home at 9am and Trevor was in the process of installing the new water heater. We had to move some furniture and such out of the way to get the old one out and the new one up the stairs. The kid was about 6'5" and huge, but he still ended up needing Tom to help push the thing up all the stairs.
So now we have a water heater again. It's filling and heating as we speak. I'm not going to try to shower yet, even though I feel disgusting, because we really need to get the house heated before Scotty freezes to death. Ireland has a tea party to go to at 1:00 and hopefully I can shower before then (I showered at the hotel last night, but I'd still like to be more presentable).....but if not, her friend's mom will understand.
The really nice thing was that the plumber took the cost of the hotel off the bill for the water heater....and then they'll go after the supplier to reimburse them. Plus he worked as fast as he could to try and save us $. We're still out $1,200 though. Nooooooo idea how we're going to pay for it. Ugh.
OK, I'm going to see if the water is filled up and heated yet so I can shower. And I need to put on clean clothes. We ran to the hotel and piled through the door looking like refugees. Aaaaaand now we still kinda look that way.
|Wednesday, January 13th, 2010|
OK, here's the more extended version of our doctors visit yesterday. I made a small post on FB this morning...
So we headed over to Doernbecher Childrens Hospital at noon. Kind of a long and stressful drive, but we found it. Good thing, since we'll be going there a lot.
First off, since it's a children's hospital, they have awesome toys. And running, screeching, and horseplay is totally allowed. They also had a huge tropical fishtank that was built into an entire wall and kid-level, and Scotty LOVED it. We actually were able to use that as a bribe several times during our hours there.
So we got him checked in and first he saw the nurse who did all the weighing and measuring. Below the 3rd percentile in weight and just below the 10th for height. She also measured his head, but I didn't catch the percentile on that. He usually runs at about 60th because he's got a big noggin.
Then we went back to the fishtank and then were called back by the doctor. He was very nice, took a whole medical history, and then gave Scotty a once-over. Scotty doesn't like to have his peepee looked at, so the doc was nice enough to just leave it be and asked us to make sure his testicles have dropped and such. He made lots of recommendations and such. He did make the observation that Scotty really is dangerously small....yes, we know that....;-)
Then the Occupational Therapist came in. They had had us pack food and utensils and such so that she could watch Scotty eat. He had some performance anxiety, so she left and watched through a two way mirror, which Scotty was fascinated with. And we got him to eat by promising that he could look at the fishies again when he was done. He ate really well. So Tom took him to the fishtank for a few minutes while she went over her evaluations with me(Tom and Scotty returned after five minutes). She confirmed that he shows no signs of not chewing or of gagging or any disorders. She did note that he has an overbite (got that from me) but it doesn't seem to interfere with his eating. She was also really helpful with ideas to interest him in food. We're going to go ahead and try more spicy and exotic flavors since he seems to like hot sauce and pepper. If it upsets his stomach we'll back off, but we shouldn't be afraid to try. We spent quite a while with her and she was sooo nice.
Then it was time for the nutritionist. She was also very nice. Apparently we've been doing everything wrong....but she didn't say it that way. She reassured us that we've been doing our very best and that this is what had worked with the other kids so it's perfectly reasonable for us to hope it would work with him. Unfortunately he's at the point where more drastic measures have to be taken. She went over a lot of things with us and really helped us understand the way kid bodies work as opposed to adult bodies. For instance, I'd been assuming that since adults avoid carbs to lose weight, that he should get a ton of carbs. Um, no. Fat. Fat, fat, fat, fat. Also I thought maybe there was a protein powder or something that we could use. Again, BIG no. Americans as a culture tend to focus on protein, when the reality is that the vast majority meet their protein requirements without any problems. And a protein powder in such a tiny body would seriously damage his liver. Good to know. So here's what we have to do:
Strict feeding schedule. No grazing. Three meals and two snacks a day and nothing but water in between. He can eat for half an hour and then the food is removed. He can have four ounces of whole milk with vitamins added for the last ten minutes of the meal.
Absolutely NO juice. Not even carrot or veggie juice. It's raising his blood sugar enough to keep his body from sending out the "hungry" signals.
All of his food needs to be very very very high in fat. We need to add butter, sour cream, cream cheese, cheese, oil...things like that, wherever we can. My mom suggested that I can learn how to make casseroles and then add sour cream to his to both fatten it and cool it off for him.
We also have to keep trying with foods that he doesn't like the first time around. Sometimes it can take 20 tries. We won't FORCE him to eat something that he hates, but as the feeding schedule helps him to get hungry, he'll be more open to trying other things.
So basically that's it. The nutritionist said not to try and be perfect because no one is. They want this to be successful, but they don't expect us to be flawless here. Normally there is a psychologist that works with the team who would have seen us too, to help us with the transition. But he was sick yesterday, so we're going back to see him.
So, right now I'm amazingly overwhelmed. The biggest issue is that I DON'T COOK. Seriously, I can't even make a casserole. But now I have to learn. Everyone on FB has been great with giving me tips, so I'll ask you all to do the same. I need EASY fat-laden foods to make. Don't assume that I can't screw up a recipe, because I CAN. I've never even successfully made something in the crockpot, and I have two of them. So please, if you have any ideas for fatty, non-nut foods, let me know. And any EASY recipes would be soooo appreciated.
|Monday, January 11th, 2010|