2bliss

Good morning everyone A huge thank you to Hubland for my beautiful flowers and all the treats you sent to Karmi's parents. It really gave them a positive boost. Also, thank you for supporting little Karmi throughout her illness. It has been a really close call, but she is such a little trooper! She is now in the general paediatric ward which means mum can sleep over. This seems to be doing her a world of good! I have here the first sighting, in a long time, of the magnificent bunny smile! (Seen here with one of her aunts.) (PS: Please don't be offended that I'm not answering all the PMs in my message box at this time.)

Dearest Hubbers, you are the very best! Karmi's parents are buoyed by your generous and thoughtful gift. Each is a favourite. Whilst being a distraction from their everyday stress, it is also a reminder of how many people care. Thank you, thank you! (Taking of photos in ICU is not allowed, but mum sneaked one of Bunny with her new soft toy.)

She is very ill. Doctors are now convinced she has some kind of genetic condition and testing is underway.

For those of you who believe, please pray together at 18:00.

They've tried the easily digestible formula, but now discovered that there is a reflux and aspiration problem. This must have contributed to her lung damage.

Nope, they had to get her back on the oscillator in a hurry.

UPDATE: Karmi is now on a regular mechanical ventilator only, but is not yet coping. Her sats drop to the low 70s at times. She has to work harder for every breath. I hope our little fighter manages better in a while. They will feed some "Neocare" instead of milk through the nasogastric tube to see if she can digest it. Milk did not work. Wish I had more good news and that she was improving faster.

Thanks for the input everyone. The Bell Sidetrack comes in "child" size too which is smaller. Perfect, but wow, it sure is PINK!!! EDIT: Is this visor design safe for small kids?

I would not mind spending more, but try finding an XS high-end helmet for a 2-year old... eish. I'm not talking junior helmet here, it is for a toddler with a balance bike.

Does anyone have experience with this one?: https://www.cwcycles.co.za/product/first-ascent-jnr-electric-helmet Looking to buy for a really small toddler. Has to be safe, fit well and have proper ventilation. It would be an added bonus if it matched this: EDIT: Or this one? http://cyclelab.com/images/detailed/6/alpina-ximo.jpg

Oh dear, Karmi did not digest any of the milk fed to her via nasogastric tube earlier today. I don't know what the implications are or how they will treat the problem.

Is "charity department" the new term for "university"?

Hey, don't joke. Universities are downsizing and not re-hiring! Our unit has half the staff we had three years ago and they expect us to do way more work than before to bring in more funding and subsidies.

You give me way too much credit. I had nothing to do with all of this kindness. Besides, it will help ease my guilty conscience for not being there as I should. In my field of work, this is the very worst month of the year and as much as I would like to take leave, it just is not possible right now. EDIT: Spelling.

UPDATE: Karmi is stable! Meds and physio continue. They are slowly lowering both the percentage of oxygen as well as the pressure of the ventilator. That is great, because it means her airways are not quite as blocked anymore and air can get in with less force. They've not been able to do away with the oscillator just yet. She is on total parenteral nutrition, but today they also gave her a bit of milk via a nasal feeding tube. I hope that goes well. Final bit of good news for today is that the overall swelling of her body and some internal organs is starting to go down.

Yes, please, count me in!

Any open office space for rent next to yours? Sounds great!

Slowbee, you have been busy! Thank you to you and all the Hubbers contributing to such a huge treat for mom and dad.

That is SOOOooooo cute!!! Thank you! Can't wait to see a healthy Bunny sporting her kit

Bunny is much the same as yesterday, except for slightly elevated blood pressure. Apparently it isn't bad enough to worry about. Mum is out of leave and is returning to work tomorrow :( Imagine having to work with your baby in PICU! Anyway, they'll drive there straight after work every day. It means updates once a day from now on.

Indeed, fanievb. Some posts just deserve way more than a mere "Like" Anyway, here goes with the afternoon update: Karmi is doing well, all things considered. The paediatric pulmonologist has been pushing the physiotherapist to be a bit more aggressive in treatment and suctioning. If you are squeamish don't read the small text: A lot of mucous and hard bits are coming out now. Her sats are in the 90s with the aid of ventilator and oscillator. Blood pressure normal with the help of meds. She is also receiving something for her heart and a number of antibiotics. She will have to stay on the oscillator until her saturation stabilises - it goes up and down quite a bit still. Overall, the doc is positive and says Karmi is doing well. Tough little Bunny!

No way! Luis, you are an angel. Thank you. These two tiny words are so inadequate to express the gratitude in our hearts. All of you are absolute superstars!

Another stable night, another step towards healing. During her last physio session yesterday, a lot of mucous was cleared. (Please tell me if these updates are too graphical!) They proceed with caution, because the physio does cause her to desaturate and requires increasing oxygen flow. Because she is intubated for the ventilator, they can at least suction her larger airways. It must feel horrible! The nursing staff had to suction her intermittently throughout the night and the physiotherapist will be back this morning. EDIT:Oh, forgot to mention that she is still on the oscillator as well.

Dear ChrisF, thank you! We are humbled by all the offers of help from so many wonderful people. I've asked them repeatedly and the answer is always the same: please just keep our baby in your prayers / hearts / thoughts. They don't ask anything for themselves. We will be driving through to the hospital again on Sunday, taking with us some frozen home-cooked meals. Also, the biggest box of chocolates we can find for the amazing doctor who crossed Karmi's path in the nick of time.

Well enough that the doc was 50% successful in her plan for today. (They had to leave the oscillator in place for now.) Still, progress is progress, even if it is slow. The blood transfusions helped quite a bit and the doc says Karmi "looks a bit better". Vague, but I'll take good news in any form. The lung issue is the result of chronic lung congestion and infection since her prem days. I know the following statement is not in keeping with the positive vibe of this thread, but I would love to get hold of her (now fired) paediatrician for a little chat! How could he have missed this? She really struggled to gain weight. She was admitted to hospital many times and had a chronic cough. She couldn't sleep, because she woke up coughing all the time. Not to mention that prems are prone to lung issues and the paediatrician should have been vigilant. How could this have happened? EDIT: AND all the previous physio, nebulising and asthma meds he prescribed did not help one bit.