Heart of the Matter

Sheena has been stuck inside for the past 2 days, as it is freezing and blowing a gale outside. Her chest is still very crackly so I was not going to risk it. She has enjoyed a millon cuddles from Aunty Daphne and Sheila all the way from Canada. Even the Canadian's are finding it cold here.

She was reviewed by her cardiologist today, and her heart has improved. The Doc things her VSD has closed, but she still has a small ASD and PDA. He thinks they are smaller than before, and he only wants to see us in 2 years time for a review. Sounds good to us.

He thinks none of her current symptoms are related to her heart, but just that she's been hit with the double whammy of 2 isolated viruses at the same time. That's why she's dropped so much weight, and is still breathing hard. Like the doctors at the hospital he reminded us that this virus can take a month or several months to get over. Its going to be a long winter.

My feet are Standing

Sheena-pops has all of a sudden decided that standing is the position to be in. Here she is in her PJ's last night standing and proud of it. Understandably she still needs support at this stage, but it has progressed from holding her under her arms, and holding her whole weight, to Sheena standing with our hands on her hips only. I don't know if any of her EI activities helped her in this, as it was really hard work to get her to bare weight. We'd do 'my feet are stamping' songs to get her to use her feet but its taken a long, long time. She is there now though.

No News is Good News

Other than a walk to the post office with a girlfriend and her bub, Sheena and I spent the day around the house. You wouldn't think Sheena had dropped to only 8kgs looking at that double chin when she does a full-body smile.

Home

Sheena is obviously happy to be home again.

She got out of hospital yesterday. She is more herself, and her breathing is much better. She lost 13% of her bodyweight overnight after having a diuretic on Monday. She's down to 8kg - literally dropped from 9.2kg to 8kgs overnight. This is not good. We have to go to her cardiologist for another assessment to see if the fluid build up was not just related to her Bronchilitis. I had been treating this hospital visit as a short-term hiccup, but now I am worried that her heart is an a poorer state than originally reported.

While in hospital I met a lady that had just been told their 18 month old had a serious genetic condition that has major health impacts. She was in the raw stages of crying non-stop, and reading all of the material saying how her kid is going to have kidney failure, is not going to grow properly etc etc. I gave her a very brief history of bubba, and she was saying 'how do you cope'... It was good to be able to pass on a few comments that had helped me. Most of the time I just acknowledged that it is really hard, because in the early days it is.

Winding Down

Today Sheena's Pead decided she had Pulmonary Edema. After some diuretics she had improved a lot, and her breathing is immensely better. She still needs the oxygen for now, so we're still stuck in hospital, but at least we're in a private room so we can sleep easy enough. We'll be in here until Wed or Thursday, so I am pacing myself. The hospital environment is brain-numbing. Its hard to read or watch TV or do anything other than care for Sheena and eat and sleep. I am treating it as a good way to completely wind down with no other demands other than Sheena's health. There is no point getting frustrated and impatient with it. Sheena's Nan is going to sit with her tomorrow while I have to work, so I will get out amongst the real world for a while.

A few more days.

Sheena took a turn for the worse last night. Hubby was about to go home for the evening at 7.30 when Sheena's panting started to look more labored while she was drifting off to sleep. We asked the nurse to come and have a look.

We had to get her up to have a proper look at her and she was not happy about it. She was blue in the hands and very mottled all over. She had a temp of about 38.3, and her oxygen levels had dropped to the low 80's so we also had to give her a mask along with the nasal tubes she already had. The nurse paged the Doc, and he examined her very closely. Given the rapid change in her, they did another chest xray to see if her bronchitis had developed into pneumonia, and by the time that happened her temperature had spiked to 39.8. She was extremely distressed, and they gave her codeine to calm her down somewhat. Given the temperature, they also decided that bloods and an IV were required. We stressed to the Registrars that she is impossible to get bloods out of let alone an IV, and that we wanted a neonatal or ICU Doc to do it, but ICU Doctors were too busy, and they were very keen to start treatment given her state. We had to let it happen.

Two Registrars had an attempt, all the time Sheena being awfully miserable and distressed. They finally made an urgent call to ICU to get one of them up to do it. By this time it was about 11pm, but it only felt like 30 minutes with all the panic. The ICU Doc tried her foot with no success, and they ultimately decided that they'd have to use a vein in her forehead. I could not handle that so left the room while hubby helped Sheena relax.

Still not 100% sure it is bacterial or still viral, but her chest xray did show a change so it is likely.
She is better today after fluids and general antibiotics overnight. It's possibly still viral but Sheena's Pead said that with her weakened immune system and heart defects she may take longer to recover. Even though the heart defects are small, it still means that oxygen is not as efficiently circulated as you'd like. He said we might still be in here for a few days yet.

Anyway the positives are that Sheena is still eating and drinking, albeit custard and yogurt only. Her temperature has come down, they're trying to reduce her oxygen again throughout the day and she looks a lot better. This picture is of her relaxing after custard for lunch today. Thankfully we were in hospital, as I would not have liked Sheena to deteriorate so rapidly anywhere else.

Another 48 Hours

Sheena is coming along ok. She is a bit up and down, but predominantly very floppy and lethargic. I would not trust her to sit in her cot as she'd just as likely flop down in any direction. Last night and this-morning were a bit tough on bubba. They had to increase her oxygen and her fever spiked a bit, but it has come down again. The Pead said that we might be able to go home on Monday, so here is hoping that it will be the case, if not earlier. She is much happier this afternoon, but she is still working hard with her breathing.

She looks to be having a particularly bad hair-day in these pics, because she had an EEG. Coincidentally we'd had an outpatients EEG appointment booked for yesterday, and they were still able to do it, so that was convenient. The EEG was fine which is great.

TLC for Sheena

Sheena is in hospital with a bad case of Bronchitis. She is awfully lethargic, and is on oxygen to support her - she is just really worn out. She hasn't improved since coming in yesterday, but she is stable and OK. I thought we'd be in for one night tops, but now her Pead has mentioned that we'll probably been in for another 2 nights. I am not too worried about it, in that it seems like an acute illness that she'll get over quickly enough with a lot of TLC.

Little Miss

Sheena has been in a grotty mood the past 2 days with a bad cough still lingering on from the bronchitis that started 2 weeks ago... She woke about 20 times last night with her cough, so back to the Dr we went just to make sure it wasn't anything nasty. Instead of being in a grotty mood at the Dr's she sat in the waiting room and beamed at everyone. When she was satisfied that everyone had smiled back at her appropriately, she played with some toys and was the picture of happiness. This photo is exactly how she looked while at the Dr's. She giggled when he checked her with a stethoscope etc etc. Little Miss. After coming home and having a nap she went back to being grumpy and sick.

Sheena in her Sleeping Bag

Here is Sheena in her night-time attire and me.

Sheena is getting rather mobile. She is getting into things, and makes her way across a room. Its not like it happens in 5 seconds, but these days we have to clear the floor of everything but toys and she will slowly make her way around the room. Today she was investigating the full clothes basket and was making a good effort at tipping it over.

Time to get a gate for our staircase down to the rumpus.

Understanding

Sheena has recently started to show clear signs that she understands me which is really cool. I told her to 'come mumma', and she rolled four times in a row to get to me. She doesn't do that often - she got quite pleased with herself for doing so too. At a first birthday party we went to on the weekend, I was feeding her fairy bread, and then said no more (even though there was plenty more), and immediately the bottom lip came out, and tears followed. Sheena has started to follow my pointed finger to look at things which is a big step too.

From an Infantile Spasms Yahoo Group that I read occassionally, I recently learnt that with the dual diagnosis, co-ordination in using hands can be effected. This is a bit of a relief to me in some ways, in that I have been annoyed/frustrated that we're taking so long to competently use a sippee cup. I am going to back-off somewhat, as I figure she'll be closer to getting it in a month or so, so I have decided to be satisfied in giving her water and milk in a bottle only for the time-being. IS makes all normal brain patterns completely disorganised, so normal patterns in fine and gross motor have to be completely relearnt once IS is controlled.

Light Weight

I took Sheena to the Dr about pink-eye, and he said she's got Bronchitis. Glad I went...

Although she's got this, she is doing well otherwise. I had hoped to take her swimming today, but we'll take her for a ride in the bike chariot instead.

I weighed her, and she is 9.2kg... I thought she'd be closer to 11kgs so I was very surprised. Glad she isn't, because she is heavy to hold as it is. She doesn't eat much, but she always has something (3 meals and 2 milk drinks). We only weighed her yesterday, because her jeans were loose, its like she is instantly thin. She has probably grown a bit, so is stretching out. I considered going to the maternal health nurse as I would like to get her measured, but am reluctant as they have a tendancy to stress you out if your kid does not sit on 50% - 75% for everything.

Tai Chi Fanatic

Sheena had creche today. I didn't dress her in her fancy Chinese gear, as I thought she'd be too slippery and they'd drop her, but here are 2 more picks of her looking the part.

So Sheena is on Gingko, and has been for about 2 weeks. I have noticed that she has picked up, especially in terms of response time when we ask her to do something, like choose a book. She'll grab one really quickly and then really enjoy every page. She likes to go through all the books, so she picks a different one each time, until I've read her about 5 stories.

Beijing Baby

Sheena had a mini-vacation at Nan's house while I was on my business trip. She enjoyed luxurious uninterrupted naps, lazy lunches, and more cuddles than you could count.

Sheena was jumping out of her skin when I got back. She did a butterfly dance with huge smiles for 5 solid minutes while I cuddled her, and she kept on hitting me on the chest as if to say, "don't you leave me for a week again mum". I bought her a rather sweet outfit as you can see.

We had a busy weekend straight after I got back. A wedding on Saturday, a trip to the zoo on Sunday, then a comedy festival show on Sunday night. Trust me, this was all organised before I knew I had the week in China, but they were all seemingly fun. That was until we went to the comedy festival finale, and an the act straight after intermission openly mocked Autistic and DS people. We were sitting there with a group of friends, and I was sitting there thinking this can not be happening. It was horrible hearing the material let alone hearing the crowd laugh. At first it was the Autism jokes, and I was thinking imagine if there are any family members of someone with Autism, and then the next joke was on the DS, and it was like a punch in the guts. Anyway, I got upset and left in tears with my girlfriend, and then hubby who was sitting a few seats also left. It was not comedy. I emailed to the Comedy Festival Director, to which I have still not received a response 2 days later...