It has been extremely hectic lately!
Jazz put on 530g in the first month after starting polyjoule and the extra scoop of formula.
On the 21st May, Jazz spent the night with Paul while I stayed overnight on a chips camp with Kai and Paige. I had to wait until Jazz went to bed before I could leave though because every time I left the room Jazz freaked out! Paul was quite nervous because Jazz is still on the o2 and since the 17th of may has been having 30 of her little siezures a day, and they're just the ones I've seen!
The neurologist Michael Fahey wants to see more video, and she needs to have a sleep deprived EEG, he also wants me to keep a siezure diary.
Jazz did ok on the Saturday because I wasnt there when she woke up, but she was ultra clingy with Paul and wouldnt let him out of her sight until I got home.
As soon as she heard my voice she didnt want a bar of Paul and wouldnt even look at him!!
Throughout the next week, it seemed Jazz might be coming down with something and on Thursday the 27th May, I almost took her to Monash, but he was managing ok, I upped her ventolin as per her asthma plan and decided to see how she was on the Friday. She was having her RSV shot and seeing the infectious diseases doctor on the Friday.
We saw Dr Buttery on Friday at 9.30am, I told him I thought she was coming down with something as she had that whooping cough sound again. He checked her out and spoke to Dr armstrong, they said she was ok to have the shot and wasnt ED criteria yet.
We had to hang around at the hospital all day as she had an audiology appointment at 2pm (which she passed, but it did show some fluid or something in one ear) She had a long sleep before her audiology appointment. She refused any bottle and just wanted to go back to sleep.....very unlike her to sleep so much.
I decided to get her checked out after audiology. She had only had 160ml for the day and was pale and tired. When they checked her sats she was saturating at 87
She was admitted and put onto half a litre of oxygen.
On the saturday morning they did an NPA. She was tired, grizzly and not herself. o2 increased to 2.5l
Saturday night we got moved to a private room.
The sunday or Monday morning, Jazz started desatting, her o2 had gone up to 3 lt since friday, but was slowly coming down, she was on 2lt and she was dropping to the 80's, she was bumped up to 3lt , and the nurse left. Immediately I called her back because Jazz was still desatting. She bumped her up to 4lt and told me not to call again as she was going home, and to wait for the next nurse. Thomas wasnt far away thankfully and he gave a saline nebuliser in the hopes it would clear the mucous. Everything turned to shit so fast!! Within minutes she had 2 more nurses in with her, including Russell. Russell looked after her a bit up in Bay 5 as well, so he knew her quite well. They thought she had a mucous plug blocking her lung. A chest Xray was taken and ICU were called to assess her condition. Her oxygen via nasal prongs had increased to 10lt and she was having nebuliser after nebuliser with 8lt through the mask. Each time the nebuliser finished and was taken away and she was left with only 10lt, she desatted down to the 60's. Icu decided she needed to be there, so around 10.30am we went off to ICU on 18lt, it took 13-14 nebulisers to get her there.
She settled a bit once she got to ICU. She was put onto humidified oxygen with a mixer and initially was on 12lt at 100%. Slowly the o2 went down to 10lt at 60%. Npa and xray results came back. She had RSV, Whooping cough AGAIN, had aspirated a feed AND had a mucous plg!!! She came very close a few times to being put onto CPAP, only narrowly avoiding it when she again went up to 12 litres at 100%
I was shattered. It brought all the NICU memories rushing back in. I hadnt seen her look so sick since she was tiny in Bay 7. She was again having heel prick blood tests numerous times a day to monitor her sugars, phosphate and blood gasses, she had I.V's, nasogastric feeding and was so lethargic. Once again I was going through the rollercoaster of emotions, nurses had said she would likely end up on CPAP and could even need intubation and after living the NICU experience all the old worries about whether she'd make it came flooding back as well. I didnt want to leave her, and thankfully I didnt have to. They have special recliners that they bring in for a parent to sleep on, very uncomfortable, and I didnt get much sleep, but I certainly wouldnt be sleeping if I was at home!!
By Tuesday her oxygen was on 6 litres, I went on a break and when I returned she was once again back up to 12lt!!! They then realised that she was being lazy!! The machine that she was on, whilst not CPAP, does give a small amount of pressure and Jazz went back to her old ways.....dont need to breathe, machine will do it for me!! They finally twigged to it when they realised her breathing rate kept dropping. They decided to put her on the normal wall oxygen and lo and behold she started working again and o2 came down to 2lt at 100%!!!
Wednesday afternoon she made it back to the ward, thank goodness. Its hard staying in ICU, very scarey!
She still had a drip and the ng tube had been removed because the poor thing kept coughing it out. Wednesday evening the drip came out as it had tissued.
Thursday she was drinking a bit better. Shes been on 2-2.5lt oxygen awake and 3 lt asleep.
As I wrote this, it was Friday 4th June, shes drinking quite well, not eating though. Better within herself, but o2 is still 2-3lt. She was put back onto humidified o2 last night because the normal o2 dried her nose out and she started having nose bleeds. Her poor little nose was so sore looking!
When I saw Marc, he said the medical terinology for all that had happened was 'crap'!!!!
Jazz was 6.9kg when we got here, so far shes down to 6.6kg, but it could be a bit less as shes had 5 big vomits.
5 June 2010
Jazz is drinking a bit better, but hasnt been eating much. Her cough seems to be freshening a bit again....hope I'm wrong about that! Shes still on 2 lto2 and has been satting around 91-95
She might be turning a corner. Aside from the coughing fits and vomiting every time she has a coughing fit. Tonight she has dropped to 1-1 1/2lt o2 and has been satting low to mid 90's.
Shes also perkier!
6 June
Jazz managed to stay on 1.5lt all night! Little cow was up at 5.30am, oh god, I REALLY didnt want to get up!!
Sheplayed in her cot 'til 6.30am, drank 150ml formula!!!!! and went back to sleep, satting up to 96!
On the positive, Jazz is now on 1 litre and satting up to 96, on the downside, she had a very minor coughing fit followed by 5 big vomits.
David Armstrong saw her, he's very happy with her sats and said he'd really like to avoid the vomiting. There are 2 possible reasons for the vomiting, either she has a belly full of mucous or shes picked up gastro. He said its very common for bubs with RSV and whooping cough to vomit. If its gastro we'll know by this afternoon, but its unlikely because she's so active and perky and looks much better than yesterday!
12.40pm
Came back from my break to find the little bugger had dropped her sats to 86. We changed the sats probe and upped the o2 to no avail. Changed her sleeping position to a more upright one and she put herself on her tummy and her sats came back up to 95, but shes back on 1.5lt.
Jazz didnt sleep all afternoon. Mum brought the kids in to visit. Storm cried as soon as he saw her. By this time, 5pm, she was on 1.5litres o2 and satting nicely. She had a bottle and some custard, but vomited it up because I went to the toilet!! We are in a private room and I held the door open so she could just see me, but the minute I leave the room she becomes so hysterical that she vomits!!!
6.06pm
Jazz has drunk a bit more and is also coughing a bit more still. But o2 has dropped down to half a litre and she's satting low to mid 90's. Very unsettled though tonight. Shes tired, but as soon as you put her down ahe wakes. Refused strawberry mousse, had a nibble of a chicken chippee.
She finally fell asleep at 8.30pm. Bruna and Elvis came to see her around 9pm and the little ratbag woke up and wouldnt go back to sleep 'til 10.45pm!! She was just invincible!
7th June
So far so good oxygen wise. She's currently on a quarter of a litre. When the PSA came in this morning with the breakfast tray, Jazz woke just in time to see someone leaving the room and assumed it was me! She broke her little heart 'til I sat up in bed and said I'm still here!!!!
When she went to sleep this morning, she desatted and had to go back up to half a litre. When she woke, she was put back on half a litre and satting low 90's.
She staayed on a half and has been sent home with oximeter in tow. So excited to be home, but she wouldnt sleep!!When she finally did go to slepp at 11pm, she kept dropping her heart rate all night.
8th June
The Carelink nurse, Sally, came out to see Jazz. We tried Jazz on 1/4 of a litre, but she desatted when she was asleep, to mid to high 80's. So back up to half a litre. Sally weighed her, she's 6.6kg
She had a better day as far as bottles go- 500ml for the day!!! Thats her best effort for a very long time!
Forgot to mention that 3 weeks ago, Jazz started walking with her little block wagon. She walks the length of the loungeroom, then turns to see you clap and 'hooray', turns herself around and rides it back as though it was a scooter!!
She's been so happy to be home. Loves wandering around and playing with her toys. She can stand alone now for 30seconds!!!
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