2bliss

Awwww... you are so sweet. Unfortunately, nothing is allowed into PICU, but I'm sure Karmi would love a soft toy (errrmmm... welding kit?) when she is better. Flowers would be a lovely gesture and have you ever heard of a pregnant woman turning down choccies? @fanievb and Kalahari Vegmot: You guys crack me up! It feels good to laugh again, thank you.

Netcare Waterfall City (Midrand) this time, because that is where the paediatric pulmonologist practices from.

Karmi, you little beauty! No further major incidents and she remains stable. Mum and Dad actually got some sleep. Her doctor is so encouraged that she will try two things today and see if Karmi can manage: 1) take away the oscillator, leaving her on a regular mechanical ventilator; and 2) wean her off the IV adrenaline that has been stimulating her heart to beat.

Karmi is receiving blood and nutrition intravenously. The meds and liquid build-up are making her whole little body swell up. I'm not sure if it is a problem at this time. Perhaps they need her to have lots of fluids to break down the thickened mucous in her lungs. She is still stable and they've started careful physiotherapy. We hope that she will have a restful night. Poor baby must be exhausted. EDIT: Today, exactly one year ago, Karmi was released from hospital to go home for the very first time.

I am ecstatic to report that, for the past few hours, Bunny has still been critical but stable at last. Her sats are now relatively good, as is her heart rate and blood pressure. She is on more meds than I can remember the names of, but the combo they have now seems to be working. It was really touch-and-go during the night and early today, so there really is no way to describe the relief. Thank you, each and every one, for all the posts, messages, prayers and good wishes. A special thanks to young Miss Emma who wrote from New Zealand. Messages of hope are a great comfort to parents during those times that cause them to sprout grey hairs overnight.

The first glimmer of hope. Bunny is marginally more stable right now. She has received a blood transfusion, is on a whole cocktail of antibiotics, as well as a special type of ventilator meant to keep her oxygenated whilst doing less damage than a regular ventilator. I gather they will try to clear some of the infection to improve her condition and then proceed to additional treatments.

No improvement. A lot of big scares. I ask all of you to understand if I don't share too many details right now. Rest assured that I will post as soon as there is any improvement. Thank you for asking though. I know it is because you are worried. We are too.

Oh gosh, this is terrible! Get well soon, Lynette. I hope you are on your way to a full and uneventful recovery. Not trying to add fuel to the fire, but as for cycling on a road, I have been shown the utmost respect by MANY taxis, MANY trucks and MANY motorists. A vehicle doesn't have a will of its own. It comes down to the person operating it. There will be those who are drunk, sleepy, inept or just aggressive towards cyclists in general - who knows what they will be driving?

Karmi did not have a good night. Three times both sats and heart rate dropped alarmingly. The cardiologist is inserting a central line now.

Mods, why is there no button for "super like"? Emma, you are a special miracle. Thank you for taking the time to share your inspirational story. It means a lot! The fact that you are healthy and even doing so well in MTB championships is truly remarkable. You keep riding like you stole it, okay?

Thanks everyone. Your support means more than you will ever know. In case you were wondering, yes, I do forward your messages to Karmi's mum. She is so touched that people she's never met could care so much and she appreciates every prayer or message of hope and encouragement. You are the best! Time for a bath and sleeping tablet. Cannot be up worrying all night as it won't help Karmi and there is work tomorrow.

A long night ahead. Hopefully things will look better in the morning. They occasionally manage to get her sats up as high as 90%, but any little change or movement sends it plummeting back down. Even covering her with a small blanket had that effect. She seems to be strangely resistant to sedation and fights the ventilator, turns her head and lifts her arms. All of these actions jostle the ventilator tube and send O2 sats down the drain. She now has a very good paediatric pulmonologist who is very strict and keeps nursing staff on their toes. Although the initial cystic fibrosis test was not positive, the clinical picture seems to contradict it. I'm no expert, but from what I've read there are a range of metabolic disorders related to CF and each can range in severity. It can sometimes be difficult to make a definite diagnosis in babies. The pulmonologist has put Karmi on the standard protocol for CF treatment, but the implementation is limited by her current condition. To sum up: Karmi is still not stable and in critical condition, but she has a fighting spirit even though her body is weak. She also has all of you

Back from the very brink, but not yet stable. Karmi is on a ventilator and oscilator. Despite these measures, her O2 sats are up and down. She has a feeding tube down her nose indicating, to me, that the doctors think she won't be out of ICU soon. She is heavily sedated, so I really hope she is not aware or suffering in any way. Her parents have only been able to see her for a very short time as the staff continually struggle to keep her stable. We are on our way to the hospital to lend support to her parents.

At this stage, anything positive is welcomed. Even if some of us are not religious, those who are can find tremendous strength and solace in their faith. So, I do not care what a person's belief-system entails, as long as they are a force for good in this world.

I've never brought it up here before, but desperate times call for desperate measures. Our youngest (honorary) little Hubber is clinging to life. Please pray for her or think of her or whatever you may believe in! https://community.bikehub.co.za/topic/169450-please-help-a-preemie/page-34

Karmi is now in paediatric ICU and on a mechanical ventilator. The procedure had to be aborted as she is too weak to endure it. They were able to take a sample of mucous for analysis, but could not clean out her lungs. The pulmonologist showed the CT scans to her parents and apparently they look terrible. There is a normal bit of lung the size of a R5 coin. The infected areas are surrounded by abnormal lung growth. There is even change to her main pulmonary artery. This is the best I can interpret Mum's distraught messages. She also used the term "bronchilitis deslycia", but as far as I can tell no such thing exists. Edit: Oh no, no, please pray for her or think of her or whatever you may believe in! They can't stabilise her!

Indeed! We're really stressing. She hasn't been this sick since PICU. I keep checking my phone for news that she is in recovery or safely under the care of the excellent ICU staff.

Okay, she went into theater at 11:22. So far we know that the CT scan showed she has almost no normal lung function remaining - everything is infected. Regarding the mucous, and these are the doctor's words: "It looks like PPC cement in there." Karmi will be going to ICU after they are done and it will take time to wean her off the ventilator. Will keep you guys updated as we hear more. They still have lots to do.

Thank you, everybody. I'm sure all the good Hub vibes will contribute to another Bunny bounce-back really soon Today's bronchoscopy will be performed under general anaesthesia. They will do a "bronchoalveolar lavage". This involves flushing the lungs with saline and suctioning it out again. Wash, rinse, repeat, until the thick mucous is gone. Hopefully antibiotics will then be able to clear up the infections. They will also be repeating the CF "sweat test" at some point. I'm not sure about the reason. It might be due to the results not having been entirely conclusive the first time, or due to her clinical profile casting doubt on the results. @Tothehills: You should be a writer or poet!

Hubbers, Karmi as you have never seen her before - very unhappy. She is sick and they poked the poor little thing all over trying to find a vein. Even her feet! They finally found a vein in her arm and now it is splinted so she cannot bend it! Bunny is NOT impressed. The CT scan and procedure to clean out her lungs will be performed tomorrow. She has lost 500g in the past two weeks.

Thanks all. Obviously, this blessing was unplanned, but wonderful. The only thing is that Karmi's mum is extremely nervous. I just have to believe that the pregnancy and delivery will be 100% uneventful this time. The balance bike for Karmi's second birthday might have to be a unisex colour...

The emotional rollercoaster never stops... Karmi and Albertus were conceived after years of trying and in vitro fertilization. Now, Karmi the miracle baby, is going to have a miracle sibling in April 2019 without medical intervention. Go figure

First the excellent news: Both TB and CF tests are negative. Thank heavens! Now the bad: Bunny's lungs are in terrible shape and filled with thick mucous. This creates the perfect environment for pathogens to thrive. No infection is ever really cleared up and she gets flare-ups, with the bugs becoming more and more resistant to antibiotics. On Tuesday they will clean and suction out what they can with her under general anaesthesia. That will be followed up with 28 days of antibiotics specific to the organisms she tested positive for. As for the next few years, she will need lots of physiotherapy, no more "school" and limited social contact. Poor baby She will have to stay home. Her parents are currently weighing their options regarding the cost of hiring a nanny vs mum staying home, but this is a major blow.

Yes, that is true and Karmi is immuno compromised. I was just saying that she can pick up an infection anywhere, so testing every person she regularly comes into contact with will not rule out all risk. Also, asking for TB or HIV/AIDS testing of the daycare staff is probably in violation of the POPI act or something similar.

She sleeps better sitting up. So far the TB test is showing no reaction. They are waiting for the CF "sweat test" and a lung specialist has been called in.