Tuesday, May 26, 2009
Quick post to let you know PuffyFingers has surgery scheduled for Friday 5th June.
The next few posts will go back in time and give you all the information on how we got to this point...
Monday, March 23, 2009
LMI was in no doubt, or waffling from her, oh no. When LMI grows up she wants to be a dog. But not just any dog... When she grows up she's going to be... Scooby Doo.
Saturday, March 7, 2009
Until last December she'd lived by herself since my Grandfather died 26 years ago. She's cooked, cleaned, and done everything for herself. She was an independent lady.
The funeral is on Friday. Friday 13th. Red Nose Day. I think is particularly appropriate as she was most definitely always ready for a laugh. I'll be flying to the UK for the funeral next week.
For those of you who didn't know my Nan here are a few basic facts to give you a flavour of her character:
- She joined a dating agency in her 80s but complained that they kept sending her old men.
- She always had a glass of sherry at lunchtime.
- She always had a G&T in the evening.
- She used to drink Vodka rather than Gin but changed over about 5 years ago when she decided that vodka didn't have much taste.
- She used to bet on the horses every day. 5p each way, which was the same stake my grandfather did when he was alive 30 years ago. The bookies wouldn't accept bets that small from anyone else.
- She loved to sing, and could damage ear drums at 50 paces.
PuffyFingers, LMI, my Mum, and I visited her last week. I'm very glad that she saw her great grandchildren, and they saw her, before she died.
Friday, February 13, 2009
The man serving me was the actual pharmacist rather than one of his minions like normal. He looked at the array of drugs showing up on PuffyFingers computer record and said:
"I think, I shouldn't leave you without her meds over the weekend. What exactly is she being treated for?"
(Hurrah for the common sense pharamacist! I've had this argument with a chemist in the UK and totally failed to get any help.)
Anyway, he gave us 3 tablets to get us through to Monday when they'll fax the hospital about getting a repeat prescription.
Monday rolls around... I phone the hospital explain about the lovely pharmacist and ask if they've received the fax. No they tell me, they haven't. Hmm, maybe the pharmacist isn't so lovely.
But don't worry says the nurse, we'll phone through the prescription now. You can pick it up this evening.
Monday evening, I stop at the chemist to pick up the prescription. But, lo, there are two prescriptions waiting for PuffyFingers. One, a repeat prescription of the prednisolone at 2.5 mg per day, the other a new prescription for prednisone at 5mg per day. So the pharmacist was lovley after all.
I chat with the pharmacist (a different one). Prednisolone and Prednisone do the same thing (I wonder why they both exist?). Bu the dosages advised by the hospital are different: the refill is a repeat of the dosage before the sausage finger incident. I decide to go with the prednisone in the higher dosage, which is the new prescription phoned through from the hospital that day.
So one new medication to add to the list: Prednisone.
I did phone the hospital on Tuesday to check on the dosage - see, I'm not a total space cadet.
Monday, February 2, 2009
Saturday, January 31, 2009
LMI has had swimming lessons since she was a tiny dot. She's happy in the water. She's totally comfortable putting her face under. But will she swim? Will she hell. She sticks to the nearest adult like a barnacle and won't let go. If an adult is not available she'll hold onto a rail or the edge of the pool, but these are a marked second best.
This was the story until a 3 weeks ago, when LMI discovered that world wouldn't end if she didn't hang on as she could still touch the bottom. Hurrah! Great progress we thought. She will crack the swimming thing eventually. Give her another few months and perhaps she'll get it.
Then came last week's swimming lesson. LMI did her usual "I will do everything the teacher asks as long as he'll hold my hand at the same time..." until the last few seconds of the lesson. There are 3 children in her class. The teacher swam one of them across the pool to her parents, leaving LMI and the other child standing on a platform. There's a standing instruction, repeated every week, that they must stay on the platform until the teacher is ready for them. The teacher then came back for the other second child and swam her across the pool leaving LMI standing on the platform. As soon as the teacher turned his back on LMI she leapt off the platform and doggie paddled, head in water, after him, across the width of the pool. As the other little girl climbed out, LMI put out a hand to grab his shoulder giving him the fright of his life.
The teacher and I were then left with the dilemma of scolding her for totally ignoring orders by leaving the platform or congratulating her on finally swimming.
We both took the middle ground and did a bit of both.
Wednesday, January 28, 2009
Sunday, January 18, 2009
PF: "Hello Grandma."
I think: Bugger, I forgot to phone my Mum and Dad to tell them how the injection went because of the daycare debacle.
PF: "My finger is totally better. It doesn't hurt at all"
I think: Excellent. If only I didn't feel so ill I'd be happy.
PF: "But Mummy is ill"
I think: Oh bother, that'll panic her. Where's the OH? Why isn't he grabbing the phone?
PF: "Yes. She drank too much alcohol last night"
6.30 Get up, dress, rush PuffyFingers through breakfast so we can set off for work
8.00 In work, PuffyFingers entertains the locals by being coy
9.00 A meeting with a Marguerita in hand and child in tow - don't you wish you worked with me?
10.00 Back to my desk to try and clear stuff before leaving for the hospital at 11
10.05 Discover voice mail from hospital asking us to come in 30 to 45 earlier than planned as they hadn't told us about the 30-45 minutes it takes for the numbing cream to work
10.07 - 10.15 Try to contact the OH. Phone mobile - not working. Phone desk phone - not there. Send e-mail - no reply. Swear mightily. Look up people on the same team as OH. Call them : 1 - not there, 2 - not there, 3 - not there, swear again, 4 - Hurrah! He knows where the OH is and will go and get him for me.
10.15 - 10.20 Fidget
10.20 The OH phones back, he'll be waiting outside the building for us.
10.25 Shove PuffyFingers into car, zoom off to collect the OH.
11 Check-in. Get photo badges to prove we are meant to be there. We're whisked into prep room in less than no time. PuffyFingers goes through the usual: She shall be weighed and measured, but not found wanting. She's an expert at it all now, and stands in exactly the right spot for the height check, and doesn't bat an eyelid at having her blood pressure, pulse and temperature measured.
The nurse comes in during all the checks and preps the finger with numbing cream.
The three of us sit in the treatment room waiting for the cream to do it's stuff. We introduce PuffyFingers to the joys of Connect4 on the whiteboard. I get so carried away with my strategy absolutely wooping the OH in the first game that I give the second game away.
The doctor comes in to examine the finger. PuffyFingers greets her with: "Where's my injection?"
Doctor agrees that we should do the injection and thinks the numbing cream needs another 10 to 15 minutes. We continue with Connect4, and regain my cool and am in the middle of wooping the OH again when the doctor and nurse come back in.
PuffyFingers lies on the treatment table nestling her head on my lap. Her finger is cleaned and sterilized. She's totally cool, calm, and collected.
The needle appears. PuffyFingers declares "I don't want the injection" and jerks her hand up towards her face. The doctor, the nurse and I all grab for her arm as we don't want it to be contaminated having just been sterilized. PuffyFingers starts crying.
The nurse squirts freezing spray at the same time as the doctor does the injection. PuffyFingers cries more loudly. The injection seems to go on forever. Puffy sticks her free thumb in her mouth and the wailing ceases. All done and a Diego plaster (band aid) is applied.
12.30 We drop PuffyFingers off at daycare and return to work.
1:50 Voice mail from daycare. I call them back. PuffyFingers finger is swollen (well, duh! She's just had an injection). PuffyFingers is OK. But I tell them to go ahead and give her some Tylenol (acetaminophen/paracetamol) anyway.
3:15 Voice mail from daycare: The finger is hugely swollen, it's black and blue all over, PuffyFingers is in great distress and crying for me. I drop everything zoom out of the office.
3:30 I get to daycare. PuffyFingers is wonderfully happy playing on the classroom computer, there's not a tear in sight. The finger is swollen and has the smallest purple bruise where the injection went in. The teachers in the classroom apologise for panicking me and dragging me out. I get the impression without them saying as much, that the front desk (da management) decided to call me without their approval.
4.00 Get home. Stick the girls in front of a Peppa Pig DVD with plate of apple slices, goldfish crackers and ham.
4.10 Start to tart myself up for the office Holiday party that was postponed in December due to the excessive snow.
5:45 Start to get very, very drunk...
Thursday, January 15, 2009
Wednesday, January 14, 2009
- Go back up to 5mg of Prednisolone
- Change the naproxen for a different drug with similar effects. Different people react differently so this one might have a better effect. There's no predicting if it will work, you've got to try it and see.
- Try doing a joint injection on Friday - without a general anaesthetic.
I needed to talk to PuffyFingers about the injection. She had to decide that it was the right thing to do. Only she knows how painful the finger is, and only she can control herself and keep still during the injection. Bizarre as it sounds, our little 5 year old daughter was the person who had to make the final decision about her health care.
I told her what the nurse said in the car and her immediate reaction was that she didn't want the injection. We got home from swimming and while the girls were drinking their usual post-aquatic hot chocolate we made up a list. PuffyFingers dictated with some suggestions from the OH and me, and I wrote them down. Here's the list in it's entirety:
Reasons not to have the injection
- It will hurt
- I will miss some school
- I will have to go to work with Mummy
- I will have to sit very still
Reasons to have the injection
- It will make my finger better
- It will stop my finger hurting when it gets poked
- It will stop the joint getting more damaged
- Mummy and Daddy want me to have the injection
- The doctor will give me medicine so that it doesn't hurt so much
- I will have to have less medicine
- I might have to have the injection anyway if the medicine doesn't work
- They will probably give me a band aid and stickers
I explained that once I phoned the nurse tomorrow to confirm the appointment she couldn't change her mind. But if she told me in the morning she changed her mind that would be fine. Then PuffyFingers earnestly studied the list and then solemnly announced:
"I think... I should have the injection"
I have no idea what persuaded her to change her mind. But I am full of awe that she can be so responsible and so brave.
Tuesday, January 13, 2009
Think I'll be calling the rheumatology nurse tomorrow to ask for advice.
I'm taking bets on the response being one of the following:
- Just wait, and continue the medication
- Up the steroid dosage (that we've only just lowered)
- Go in for an appointment to see if she needs a steroid injection
Part of me wants it to be 3, because it's always worked in the past; and then I'll be free from the thought that every day that passes her joint is degrading a little bit more.
It's odd how your attitude changes with experience, the first time she went under a GA I was really worried. Now it's so old hat that it's my preferred option. Weird.
Monday, January 12, 2009
On Saturday I needed to go shopping for a new bra (oo-er, missus). I had the girls with me. We parked the car and walked through the car park into Nordstorm (a department store). No sooner were through the door then LMI made a beeline for the nearest arrangement of store dummies (mannequins) and started up an imaginary conversation between them...
"Hello, what's your name?"
"I'm Oviya, what's yours?
"I'm your Mummy, my name is Tamsin"
I didn't wait to hear any more; and I frog marched her off before anyone thought she needed locking up.
Sunday, January 11, 2009
So far they've:
- Decorated my white board
- Ran up and down the corridor
- Drunk chocolate milk
- Gone to the loo
- Watched an episode of the Tweenies on DVD
- Ran up and down the corridor
- Eaten an apple and banana
- Drunk plain milk
- Gone to the loo
- Ran up and down the corridor
- Watched another episode of the Tweenies
- Eaten goldfish crackers
- Ran up and down the corridor.
- Drank water
- Right now PuffyFingers is taking LMI to the loo again.
- Next up is an episode of Scooby Doo
I haven't managed to get that much work done...
Tuesday, January 6, 2009
The good news:
- It looks like the fingers on PuffyFingers right hand are responding to treatment.
- We will reduce the dosage on the prednisolone. From 5mg to roughly 2mg. Roughly because I said we'd finish the new prescription we picked up on Saturday. As it's in little 5mg tablets I need to try cutting them in half. That should be a fun task at breakfast time.
The bad news:
- Her left middle finger is still pretty bad and for the first time ever she complained of pain when the doctor was examining her.
- There's still swelling in the elbow.
- There might be something going on in her jaw, on the left hand side.
We also had the fun of a urine test. Just imagine trying to get a 5 year old to wee in a small pot.
They also did a blood draw. PuffyFingers was not a happy rabbit. She was excited and kept asking when they'd be doing her blood test until the needle appeared, then she cried. The Scooby Doo and Spider Man stickers soon sorted her out. I feel immensely chuffed that she did choose SD and Spidey rather than the dreaded Dora or Disney Princesses.
As for me, I'm rather upset. I'm trying to work out why. I know that it's her jaw possibly being involved that has stirred me up. But why does that upset me? Why should arthritis in the jaw be any worse than her fingers, or arms, or legs? Am I really that influenced by how someone looks? So what if her jaw is a wee bit lopsided? We'll probably be the only people who'll ever notice it. Surely it's worse if she doesn't have full movement in her hands? So why am I sat here blubbing as I type?
Friday, January 2, 2009
I got advice from lots of people on giving injections; some people at work are familiar with insulin jabs so I spoke to them. One person has a friend who's a paeds nurse so she spoke to her friend. And I mailed the lovely Kal at Trauma Queen for his advice. Plus I did a dry run on one of the nurses at the hospital with saline.
- Puffy Fingers checks out the injection box with all our supplies in it.
- Wipe top of methotrexate bottle with alcohol wipe.
- Get new syringe. Fill it up (this takes far more faffing to remove bubbles than I would have expected. I'm either very bad at it, or all the programs I've seen on TV lie).
- While 2 is happening the OH and PuffyFingers choose the spot for the jab and clean the skin with an alcohol wipe.
- While 2 is still happening (I'm really not very good with the syringe filling) PuffyFingers holds an Ice Lolly (Popsicle) against the chosen patch of skin.
- Get PuffyFingers to check I've got the right amount in the syringe.
- Lightly pinch about an inch of flab...
- While 5 is happening OH quickly removes wrapper from ice lolly and pops it into PuffyFingers' mouth.
- ...insert the needle, push in the plunger.
- Count to 3
- Take out the needle.
- Stick plaster (band aid) over needle hole - if I can see it, otherwise, stick it in general area. Scooby Doo plasters are preferable.
- Skin is tough. Or rather a 5 year old's skin is tough. The nurse I learnt on at the hospital (how brave is that by the way? Letting complete innocents jab you?) had lovely squidgy skin (much like my own) and the needle just slipped in... But for PuffyFingers I have to put far more force behind the needle than I expected.
- It's difficult to find a layer of fat on PuffyFingers to put the needle in. If she took after her mother this wouldn't be an issue.
- 5 year olds are astoundingly pragmatic. She is amazingly laid back about it. She knows it needs to happen and helps us to get it done smoothly. This morning was the first time we'd had any fuss at all, and the fuss was extremely minimal - the OH was taking his time about extracting the ice lolly from it's wrapper!
The title of post is PuffyFingers spelling on her cards to us. It entertained me, hence I'm sharing it with you. I don't understand how she got the P the wrong way around in her Christmas greeting but one week later had it correct in the New Year one.