oona (one) hildegard (fortress of strength)

Oona came off TPN NY eve just before her 3rd birthday, the Hickman line had completely seized up and her access became terrible so it was time to bite the bullet and take the risk of being fully fed on foods.. on 6x meals a day.. we're now coming up to the end of reception class - she's just about handling school, is still on chips for breakfast and 6x helpings of food a day, school are sort of on board with it but not fully aware of her history, if they were they might feel more compassion for her meltdowns/behaviour, dragging her from me to get her into school isn't ideal. But we did receive an amazing comment from the headteacher which was astounding - Oona does have the ability to talk to anyone, no matter there age or creed, and shout at anyone no matter who they are.. but on the positive side she has been recognised for the joy that she brings, and that has been the case since day 1!

Back to herself, in isolation on Neptune

So 30th birthday tomorrow, looks like we may or may not be going in for a new hickman. Came in via a&e on Monday latest week because of sky high temps from chickenpox caught from O's brother. We're now 11days post the pox starting, she looked pretty good on it until day 4 when everything starting getting hairy and scary and Monday night, the first night in hospital she was doing 40plus spikes and heart rates of 217 per minute. Thank god the nurses told us to come in as I am always hesitant to go to a&e. She stopped having fresh pox 7days in and temps recovered after the doc agreed to try anti virals. We knew that it was very unlikely to be a line infection but she was put on five days antibiotics anyway, which brought her swollen glands down, they measured 4x3cm when measured on Tuesday. An x ray on Monday night which was to check whether the pox had got into her lungs showed how precarious her line was, it had migrated north up to her ear! Yesterday pressures were extremely high and so she was put on the emergency list. But last night with a change of line dressing (in its usually shape) and a change of pump the pressures were fine. So waiting to find out what the plan is... discharge with a definite date to come and have the new one put in or wait for the emergency list and risk the effect to her lungs post chickenpox. Ideally they wait 20 days post infection. Chickenpox causes mild pneumonia in the lungs hence the anaesthetists hesitancy to put her under a general anaesthetic. Fun times Milk pump/continuous feed at 55ml per hour for 10hrs (550ml) and PN now tipping the balance as being slightly less calories than the NG feed at 28ml per hour for 16 hours (448ml).

January 2015 - Our first trip outside of central London with Oona!  To hampton court / bushy park for eating / playing / playground time.  Making progress with eating, finger foods preferred, as well as drinking up puree's!  So she can suck up too, still more progress to be made with drinking, a straw based cup needed (honey bear recommended - speech therapy), and I'm doing sneaky increases in her continuous feed up to 35ml per hr for 11hrs (condensed from 12hrs).  Still on 740ml of PN for 15hrs, 3 days of Lipid a week, and last weight 7.64kgs.  Seems to be growing in length and fully filling out 6-9month gear.. slowly slowly.  She now pulls herself forward in a sort of crawl/uncrawl when something really takes her interest.  Most important thing for us all is to now spend time doing fun things as a family and to try and keep sane.  Life is intense and still a bit isolating with her regime and we are having even less sleep as we go on.  She used to sleep through the night including nappy changes!  NOT ANYMORE!  She knows how to bellow the flat down now - she never used to cry and now she's fighting for attention - learnt from her big brother).  Her poo was a cow pat in consistency yesterday which is fairly superb! Means the mil can go up again, but perhaps when she's not fighting conjunctivitis and a cold.

Three days after her first birthday and we've landed back in hospital via A&E with a fever from her brother and then an allergic reaction to the vanc :( and ended up in worse shape than she was in her first place! Still here 48 hrs later, the puffy red face has gone but still spiking temperatures.

Oona’s 1st birthday after being discharged a few weeks ago. We’re on 15hrs pn at 700mls and 32mls an hour for 12hrs (total 390mls)

But she has made 1, just about. Wondering what the next year has in stall for us. ..

At home, home is good.  As of late last week we cautiously went up to 31mls per hr for 12 hrs on continuous feed pump and 15hrs PN at 700mls. Yesterday she had 2/3 poo's at most!  Surprising as she is as still snotty as can be.  Had to put an NG down at 2:30am last night and made her nose bleed :(

The fun never stops.  You think when your discharged there is a huge sigh of relief and everything is outlined with a golden halo.  Last night we had 2 hrs sleep due to incredible outpourings of diarrhea, coughing and snot so think I had to old her upright to get her to breathe.  Which is all fine and dandy but the paranoia with her temperature this evening because she seems not quite right, her system is totally overworked from the 29ml + virus and we could quite easily end up back in hospital at any point over this Xmas period with sepsis. 

We didn’t think they were actually going to discharge today what with the blood spatters in her stool last night, the vomiting, incessant pooing up her back, low sodium from her bloods and a raised crp. They throw in a last min neck ultrasound to check for space for her next hickman, told me at 4pm and was out in 45mins!.. the most ridiculous day (Well, one of many shared with O). Car pilled high with medicines and medical kit. We even managed to get her to vomit on queue for Grant (PN specialist nurse) at home. Going to hold off on puree/solids whilst on the continuous feed pump for next few days to give her gut a rest and hope they do decide to up the calories (as she is loosing weight) on our next appointment next Wednesday.

Her poo’s bave been absurd, 9 yesterday, 12 day before and 11 .. she has diarrhoea, is in discomfort with it but her bottom is no longer raw just red. Her weight has noy budged now for a month so begging everyone to up the PN so they might concentrate it tomo on the nutrition rounds. She can’t afford not to gain at 7.1kilos, although I think she has stretched out a little. Amazing thing yesterday, all 4 of us laying down in bed. Beautiful moment.

Disgruntled today, as expected Oona cannot tolerate the increase in 5ml to 29ml per hr for 12hrs that the dietician decided without consultation yesterday. Why do they never learn that it would be courteous and advisable to speak to parents about these things to gain an understanding of what they’re poo’s are doing. It is infuriating. On the positive we have dates for delivery of the fridge and equipment next week as well as the meeting with the community nurses. And PN disconnection has been going well, the home pump should go up this afternoon once I’ve picked up E and headed back in.

Oh the vomits.. as we creep closer to her discharge date I am getting more anxious and more aware that this discharge might not happen in 9 days. I think this is the third day in a row she has had quite considerable sized vomits, whether due to a bug, her cold (rhino virus) or feeds I am not so sure but I really hope it doesn’t prevent her coming home before christmas. Weight gain has come to a standstill the last two weeks, she is not eating as much because of all the bugs flying around and her PN has been reduced a bit because they were concerned she was gaining too much weight! Not likely! Sitting at 7.1kgs.