Friday, March 11, 2011

10. J is for Japan

My brother-in-law and his beautiful wife life in Japan, so you can imagine how crazy today has been for my husband's family. Thankfully they live on the southern most island, and while they felt the earthquake and saw the tsunami, they haven't been directly affected. They were both at work when it happened, which is apparently a good thing as their apartment building isn't as sturdy as some office blocks.

Anyway, they're safe and well, and they're going to call us tomorrow morning for an update.

Jeez, what a day for Japan.


Thursday, March 10, 2011

9. I is for Idea

I have an idea: I should go to bed, instead of making up some drivel no-one wants to read.

Night night!


Wednesday, March 9, 2011

8. H is for Happy Times

I think I've touched upon Little O's recent developmental spurt but I haven't gone into too much detail. Well, it's all tremendously exciting and I think it's to do with him not wearing a cast for his scoliosis at the moment. Basically, I think he's been determined to try out some new tricks since Christmas but the cast he was wearing has prevented any new mobility. We took off the cast Friday 11th Feb, with the intention of letting his skin take a breather over the weekend and a new cast applied on Monday 14th Feb. Well that all went out the window when Little O got sick right after the cast was removed, and he started a round of hospitalisations and so on. The new cast was never put on.

It's so nice to see him catch up a bit. In the last three weeks he's learnt how to sit up by himself from being in a lying-down position on the floor, how to kneel, how to walk using a walker the physiotherapist lent us, and, most excitingly of all, how to pull himself to stand up using a large object such as a couch! Today he spent most of the day rolling around, sitting up, getting over to me, then using me or the couch to pull himself upright. I am absolutely thrilled to bits! Children figure out this upright thing before they're a year old, so my theory that Little O is developing at half the pace of other children is right on. I think he'll walk at about 27-30 months too. Right now it's about determination and figuring out what will motivate him best. He likes things he's not supposed to have, which usually means prying an XBOX controller out of his sticky little hands, so we bribe him with one to get him to walk, or crawl, or pull himself upright. Anything, really, to try and encourage him.

The cast will have to go back on in the next few weeks, which is very sad. But we are taking him to the Wisconsin Dells for his second birthday in May as they have the greatest water parks in the country and my son LOVES the water! He will have to be cast-free to go though, so at least we know we have that time to look forward to. I can't believe my baby will be two!


Tuesday, March 8, 2011

7. G is for Getting It Done

I apologise for not posting yesterday, but in all honesty I was out there getting shit done so that I would actually HAVE summat to blog about!

Little O and I spent yesterday and today getting up to and in to loads of stuff. First we went to a craniofacial appointment at CHOW on Monday morning, which is one of my least favourite clinics to visit because they have such appalling time-management. Once I was a there for nearly two hours, and saw the doc for about five or ten minutes of that. Yesterday was a little better though, and we were there for only about an hour or so, seeing the doc for about ten minutes. Doesn't mean I don't still hate them though.

After that went to see my friend up in Milwaukee for lunch, and she's lost loads of weight from having the stomach flu so she looked a bit gaunt. Still beautiful though. Then we went to buy Little O a new swimsuit and supplies for swimming in the afternoon. I LOVE buying clothes for my son, but shopping in Babies R Us is VERY dangerous. I seriously had to set myself a budget and only walk out of there with a new swimsuit and those fancy diapers that don't explode when your kid gets in the pool. I got so close, too! I walked out with diapers, swimsuit, and a new sheet for Little O's bed that cost $4.99. That's actually pretty amazing. His new shorts are rainbow-coloured and I bought a UV-protective t-shirt in orange to match. It says Beach Bum on it. It's awesome. :)

After that we went swimming! It was kinda rubbish, actually, because the pool was advertising that time as designated for special needs users only, but it was no different to any other time of day. It's a water park too, which meant there were loads of slides and cool shit for older children, but nothing that suitable for babies. Little O is trying to figure out to crawl, and when we were in the zero depth section he kept trying to put his face in the water and crawl into the deeper sections. I was terrified he'd inhale water and start drowning! I think if I go again I'll take my husband.

Today we've being doing chores, seeing therapists, and running errands. I even got something very special sent to Butterfly Charlie in the mail! (Shh... don't tell her...). My kitchen is finally tidy again, after a weekend of not doing any dishes AT ALL - I am disgusted at myself, but mature enough to blame my husband - and I am trying to get caught up on laundry. But, more importantly, I have been playing with my son. He is pulling himself to stand all the time now, and figuring out this crawling and walking malarky, and he's just so much FUN at the moment! It's been like having a 12-month-old in the house, when they learn all this new cool stuff suddenly, and I'm just enjoying it so much.

I'm also enjoying "An Idiot Abroad", which is currently airing over here. Sooo funny!

Happy 100th International Women's Day, everyone! May the next 100 years be even better than the last.


Sunday, March 6, 2011

6. F is for Frustration

My husband snores. It's an issue.

Have you ever slept next to a snorer on a regular basis? My God, it's awful. I am a person who needs a lot if sleep (between eight and ten hours a night usually does me right) and recently I've been getting around five or six. Between Little O being sick, having to get up early for work or therapists visiting the house, and my husband snoring his blasted head off ever night, it's driving me mental. I can't fix Little O and I can't stop the therapists coming over, but I CAN get my other half to do something about his nocturnal soundtrack.

The thing that drives me round the bend with snoring is that it's so inconsistent. At least with a ticking clock there's a definite pattern to it, and you can predict when the next sounds will come. With snoring, each person has their own cycle and variety of delightful nuances in tone and volume, and it's hard to fall asleep when you're laying there waiting for the next shuddering breath to make an appearance. It's so stupid to get so worked up about it, but night after night of trying to drop off for up to three hours is getting really annoying.

So, my husbands has been given an ultimatum. Either he does something about his snoring, or he sleeps in the guest room. It's perfectly fair, given that it's HIS problem, not mine, and it has already started to work. He has now been looking for snoring remedies online and in the shops, although he has yet to buy anything. Yes, I could use ear plugs, and yes, I have used them routinely for years and years since having to share houses with noisy housemates as a student, but it isn't treating the problem itself. Besides, why should I have to give myself ear infections and the like because HE'S snoring? It doesn't make any sense.

We had my brother-in-law stay with us last weekend, and we have guests staying next weekend too. The guest room is therefore unavailable, so my husband sleeps with me. It's no fun for either of us though, because I get so frustrated that I wake him up whenever he starts snoring just to let him know he's at it again. Then he gets mad and doesn't sleep, and I feel guilty but also satisfied I'm making a point, and then we're both not sleeping and get up cranky e next day.

We really need a better solution, but until we find one the guest room beckons...


Saturday, March 5, 2011

5. E is for Electricity

Whoo hoo! The lights in the basement work!

Crap post, I know, but it's Saturday and I've been too busy with weekend stuff to write anything else of note.


Friday, March 4, 2011

4. D is for Drilling

We have the electricians in.  Oh dear. 

We only have ourselves to blame.  We bought this house in 2009 knowing full well it needed A LOT of work doing to it, and knowing that we had neither the time nor the money to get it all done at once.  So here we are, two years later, finally getting around to finishing off the "nice" side of the basement and changing it from a dumping ground for old baby junk and stuff we want to sell this summer in our first-ever Yard Sale (eek!  I'm so American!), to a dumping ground for new baby junk and stuff my husband thinks is important.  The idea is that all the video games, consoles, too-big-for-the-living-room TV and other assorted gear will now have a place to go, and the upstairs will be a nice place for entertaining guests.  We're putting in a fourth bedroom too, although we can't technically call it a bedroom because the only window down there is too small and high up the wall for anyone to escape in an emergency, and another walk-in closet.  Hopefully the closet will end up being large enough for future prospective buyers to imagine upgrading it to an en-suite bathroom, but we have neither the need nor the money to do that just yet.

The basement is split into two halves: the side to the left of the stairs houses our washing machine and dryer, all the electrical maintenance and plumbing stuff for the house, the sump pump (if you're British, don't ask), my husband's tools, and shelving for all the boxes of holiday decorations, baby clothes Little O grew out of, and some random carpet tiles my husband imagines he will get around to laying down one day.  On the other side, to the right of the stairs, is where the action is happening.  When we first moved in, it had rust-coloured carpet sitting on top of bare concrete (not stuck down, or over insulation... just sitting there), and the vilest dark-brown fake wood panelling covering every available inch of wall and ceiling.  It was so dark and grim that for the last two years I've not even ventured into the gloom to investigate what's under the stairs.  I swear Gollum lived there, muttering about some bloody ring and being generally creepy.

Anyway, in January my in-laws came to visit and drywalled the entire right side of the basement, covering up the wood panelling with clean, bright plasterboard, and ripping up the carpet ready for fresh flooring.  It already looks so much nicer, and I'm excited to get down there and start finishing it up.  We're having all the lighting re-done today so that the bedroom and closet actually HAVE lights, and getting recessed lights added overhead in the living space because the ceilings are so low.  The people who owned the house before us obviously did a lot of this work themselves, because it's taken Sparky the entire morning just to get everything to a state where he can stop ripping out and start installing.  There's noise, and dust, and drilling, but progress is good and I think it's going to look so much better when they're done.

Next step: the ceiling!

Oh, and if anyone does want to give us a few million dollars to help speed this process along, please feel free.


Thursday, March 3, 2011

3. C is for Complaint

Day three!  Things are going well.

When we brought Little O home, some of his... ahem... presents... were left behind so the lab could run some tests.  In the event we had further problems at home and would need to bring Little O back for more IV fluids, the lab would already be one step ahead and we would have a clearer picture of what we were dealing with.  Well, it turned out that my son actually DID have something else wrong with him: C. Difficile.  AGAIN.  Jeysus.  C. Difficile lives in your gut normally, but is a superbug that is resistant to most antibiotics.  If, like Little O, you have been on antibiotics for some other reason (he'd had bronchitis in January), then that can kill a lot of the good bacteria in your system as well as the bad.  Because C. Difficile is resistant, however, and the good bacteria is being removed, it has the opportunity to grow quite rapidly and essentially take over the entire gut south of the stomach.  This means the good bacteria cannot get back in once the antibiotic treatment has finished, and you get stomach cramps, diarrhea, a fever, etc.  If left untreated you can potentially get very, very ill, and it can even kill you.

So, we had to go back to Little O's regular doc and get ANOTHER presciption... which has been successful and we have seen no further signs of illness or diarrhea.  At that appointment he also checked Little O's arm and told me how disgusted he was at how it happened.  I told him I had very strong feelings about it, but that I was going to be polite and keep my language clean.  He suggested I complain to CHOW's Patient Care line, and I told him I already had... :)  In fact, after I brought Little O home from the hospital and made sure all of us got a good night's sleep, it was the first thing I did on Thursday morning.  I spoke to a very nice chap who listened carefully to my concerns, and then started apologising and apologising, over and over again.  I told him that I needed to know that the staff who had treated my son were going to be spoken to, and that this would not happen to another child, and he promised me that all the staff concerned would indeed be "interviewed".  Because this might take a while I might not hear back for several weeks, but I have already had a letter at home telling me the investigation is ongoing and that I will be contacted when it is resolved.

Result!  Malpractice lawsuit not withstanding, that's basically the best outcome I could hope for.  I wanted someone to take my concern seriously, and for the staff at CHOW to know that their neglect (for that is what it was, essentially) did have consequences.  It's not as though I could get my money back, or coupons off my next visit (although that would be SWEET, given the cost of healthcare in this country), so making everyone aware that they need to do a better job listening to parents and paying attention to the cries of tiny children in pain is all that matters.  Job done.

Little O's arm is now almost healed, two weeks after the incident.  We kept applying that magic stuff, Vaseline, to the sore to create a barrier without using cotton wool or gauze (the threads could have gotten stuck to the wound and caused an infection), and it seems to have worked.  The swelling took about three days to go down completely, but the scabs fell off earlier this week and we now only have some pinkish scars in the crook of his arm to remind us of that awful day.  We also haven't seen any more diarrhea or signs of other gut problems... but we have been giving him more water than usual to help things heal faster anyway.  The only problem we have now is that his ear has been draining what looks like green snot... and that isn't a great surprise, seeing as he has a minor cold and ear tubes helping his ear canals keep clear of infection.  But it's still REALLY DISGUSTING, and I do gag when it's my turn to clean things up.  I can't help it!  Blood, poo, wee and vomit I'm fine with.  Bogies from the nose, eyes and ears are HORRIBLE and they make me retch.  Gah!  I'm turning green just thinking about it.

I need to lie down.


Wednesday, March 2, 2011

2. B is for Baby Steps

Okay... day two!

So, we left off with Little O being admitted to CHOW for dehydration following a Rotavirus diagnosis at a different hospital. Well, we finally got settled in our room at about 8pm, which is usually Little O's bedtime, but, as anyone who's ever been admitted to hospital knows, getting through the barrage of tests, questions, medical history and other assorted interruptions, means that it's another several hours before you're left in peace. Finally at around midnight we were left alone for a while, and I managed to get the pull-out couch set up so I could also sleep. However, during the night we were constantly being woken up by nurses and other medical professionals who needed more blood drawn, or vitals taken, or even just medical students 'taking a look' at 4am. It was absolutely absurd, and by 5am I'd given up and got up for the day. I'd had about three hours of sleep, and Little O had had about five.

Because he was so tired and ill, my son was also GRUMPY! I therefore made an executive decision to instruct all medical staff and other busy-bodies to leave us the hell alone after 12pm so we could both nap. Little O was getting sleepy around 12.30pm, but he was finding it hard to drop off and just wanted to roll around and tug on the number of tubes and devices attached to his body. At 1pm he finally succeeded in ripping off the splint that was keeping his arm straight so the IV would stay put, and before I could run over to his bed and stop him, he'd already begun playing with the IV itself. Convinced he'd done some more damage than I could see (with my medically-untrained eyes), I pushed the call button for the nurse and held Little O's hands still until we could fix the bandages, splint and IV. After about 20 mins a different nurse came in from our usual one, took a cursory look at the IV, and announced that she saw nothing wrong with it. I protested, and explained that Little O had definitely been playing with it, but she flushed it a few times and stuck to her guns. Then she wrapped the splint back on his arm so tightly I couldn't see any skin from armpit to fingertip.

Feeling unsure but relieved, I tried to get Little O to sleep again, but he started cycling through patterns of sleeping for about 15 mins, then waking up screaming and being restless. Then he'd tire himself out from screaming so hard he'd fall asleep, and 15 mins later the pattern would start all over again. I was really upset. I was so, so tired, and getting frustrated and worried. I called a nurse in (our usual one, this time) to look at him and she said she'd get a doctor, who never came. Then twice I called for a doctor myself, even going out into the hallway to physically bring one back with me. Doctors are not gods, and no matter how much respect I have for their knowledge, profession, or time, I felt as though I needed to start making a fuss so someone would help me with my son.

At about 2pm I called my husband away from his work and he arrived just after 3pm. The first thing he said when he entered the room was: "Little O is in pain". At around 4.30pm we managed to get some more doctors and med students in to take another look, and both my husband and I told them explicitly that we felt Little O's IV was bothering him, and that he was in pain. Finally one of them agreed to give him Tylenol (paracetamol) and a nurse was sent off to complete the order. At 5pm she came back in to administer the meds, and while she was in the room she checked his IV, for the first time since 1pm. Immediately she said, "This has to come out" and pulled off the gauze, tape and splint to reveal a very swollen little arm. She ripped out the IV and ran out of the room to get some help.

I approached the bed to see what the problem was, and to my horror Little O's arm was so swollen that he could not physically move his fingers. His arm was about three times the size it normally is, and he was SCREAMING in agony. His whole arm, from fingertip to shoulderblade, was absolutely massive. It looked like someone had inflated it with a bicycle pump.  When the nurse had taken off the adhesive, the skin underneath had been stretched so thin that the tape had taken several layers off with it and left a gaping, weeping wound in the crook of his arm. There were also blisters and burns, and the whole thing was very painful to touch. The IV must have infiltrated about four hours prior, when he'd been playing with it, and the fluid meant to rehydrate him had instead been slowly pooling under the skin, swelling the arm and causing a lot of pain.

Well, I just lost it. I scooped Little O up and started sobbing and sobbing. I disconnected his feeding pump and took him over to the couch for cuddles and kisses, while both us got drenched in tears. My husband began the practical stuff, by getting us pillows and blankets, and applying the warm compresses the nurse had brought in to soothe the pain and start to relieve the swelling. I was able to calm down enough to tell my husband I wanted to take Little O home, because I felt he was being harmed more than healed under CHOW's care, and he immediately agreed with me. We told the nurse our intentions and she got a doctor in to try and talk us out of it. We didn't listen, and prepared to go home.

Before we left, Little O's regular GI doctor stopped by to see us, and recommended getting some stool samples to test on while we were heading home. As it was non-invasive (Little O kindly prepared a "sample" during the discussion), we said it was okay and then left at about 7.30pm.

More on the results of those tests tomorrow... But just one last thought for today: I called this post "Baby Steps" for a reason. One, because Little O is finally learning to walk, and two, because learning how to be an advocate for your child can take you to places you never thought you'd go. Having a nurse ignore your pleas for four hours, and for medical professionals to cause harm by thinking they know your child's patterns of behaviour better than you do, well, it really made me take a few baby steps in a new direction. I have been forced to face up to the fact that I may be seen (or unseen) to be invisible, and for my instincts to be ignored.   This has never happened to me before, because most doctors my son sees defer to me on how to take care of him in the best way.  However, I am certain, more than ever, that I am the best advocate for my son, and I am certain that I will not take no for an answer next time. I will do better and will be stronger, so that there is never, ever, a "next time" anyway.

Baby steps, baby steps.


Tuesday, March 1, 2011

1. A is for Announcement

Well!  This marks the 100th post on this blog, and with it comes an announcement: for the entire month of March I will attempt to post every single day, so that I get back into the habit of regular updates.

I'm hoping to use each letter of the English alphabet, with perhaps a few Welsh characters thrown in at the end to take me to 31 days.  Welsh, or French, or anything else that takes my fancy on the way... I haven't decided yet.

So let's get started.

Since I was last on here, I have had (and now stopped) a full-time job.  Little O was in full-time daycare as a result, and in addition to the never-ending guilt I felt about that, it also meant he was exposed to far more germs and beastly beasties than he ever was at home.  He got sick so often, and so severely, that by Friday, February 11th, I'd had enough.  As I was taking him in to the local ER, and he was being admitted overnight again, I reassessed my priorities and decided I would not be going back to work on Monday.  I went in to clear my desk on Sunday and wrote a formal e-mail (gosh, how modern of me) to my boss explaining my decision.  She was absolutely wonderful about it and said I'd get a glowing reference if and when I needed one.  However, it was a real turning point, and the culmination of five weeks of illness for my little boy.  He had been ill with a cough before Christmas which turned into bad asthma... and that then turned into bronchitis in January... which then went back to being bad asthma again... then he got double ear infections... twice... and then in mid-Feb he came down with similar symptoms he'd had last October (remember that?).  Not willing to risk more hospital treatments, I took him in to the ER to be proactive and nip whatever it was in the bud, and he was admitted anyway.  Sigh.

They ran all manner of tests on him overnight and the results came back Saturday afternoon saying he had Rotavirus.  It's something they vaccinate for here in the USA, although my folks back home have never even heard of it.  And yes, Little O WAS vaccinated.  But his immune system has a hard time making antibodies and keeping him healthy, so his defences against this rather unpleasant virus weren't exactly solid.  Anyway, armed with this knowledge we came home on a different feeding schedule with extra fluids, and did our best to keep him hydrated at home.  It worked, until I felt he was looking and acting a bit peaky ("peaky" is not an American expression, apparently.  Trying to describe your child's status as "a bit peaky" to an American doctor gives you both an education...), and I took him in to CHOW's ER for some more IV fluids.  And, of course, they admitted him again.  When will I learn?  Sigh.

...and because I need something to post about tomorrow, I will leave it on that tantilising note for now.  See you tomorrow!