Monday, June 13, 2011
Lilly's Eye Test Results.
Lilly had her Retinogram and BrainEvoke Response Visual test this morning. Basically the findings are: There is evidence of degeneration in the light receptors in the Retina, which is worrying and will need following in the next year to watch for any changes. Her brain responses are almost normal to visual stimuli at the moment though which is good news, But the right side of her brain responds better than her left which suggests some asymetry in the development of her brain. This means she sees better with her left eye and coincides with the fact that she uses her left side more than her right side. She will need to be sedated or under GA to have her retinas investigated. She may be able to were glasses as it appears she can see larger objects as opposed to smaller ones. We have been referred to Can Do 4 Kids, an organisation which assists those with visual and or hearing impairments. Whoo lots to take in
Monday, June 6, 2011
May 2011 - PICU visit
Last post we were awaiting the PEG insertion. Well that was done , but from the minute it was done, lilly had problems tolerating the feeds. She would scream evry time the feed was on, then burp and vomit. After 10 days of this she developed a wheeze and was breathing really hard and fast. We took her to the LMH where she was treated for asthma? and given ventolin and oxygen. She continued to vomit and not improve at all, They couldnt hydrate her because they could not get a vein to give her IV fluids, even with an ultrasound to guide them. The doctors told us they were transferring her to the WCH in case she got worse, because she might need to go to intensive care. At this point i was worried but not too much, i mean it was just in case right?
On the 25 minute ambulance ride to the WCH, mu Lilly Bubba struggled to get a brreath and had practically stopped breathing when we reached the hopital. They raced her in to resus where i stood, watching them run around my baby, stick things into her all over, gave her an adrenaline shot to kickstart her breathing and bring up her heart rate, gave her ventolin, oxygen and other drugs to keep her breathing. It was like a dream..i knew it was happening but i didnt feel anything..numbness, shock, disbelief. My Nurse side kicked in and took over from my mum side i think so i could cope. Thank you nurse side!
She was admitted to the paediatric ICU and given ventolin and oxygen. Because her oxygen was so low she had a hypoxic seizure, and then hd trouble keeping her oxygen up, and was still breathing with such a struggle that thy ventilated her with CPAP. This is basically a mask, which seals over her nose and mouth, forces air in to her lungs and keeps her lungs inflated so she can breathe out and get rid of the Carbon dioxide that builds up. She was on this for 3 days. They put in a central Venous line in her femoral ( groin) artery for fluids and drugs. She was given antibiotics aswell. Her left lung had totally collapsed, and her lungs were filled with thick sticky mucous which was acting as superglue.
The docs are saying she had a virus which turned into a pnuemonia, testing positive for staph, so then turned bacterial. But she may have aspirated in to her lungs on her vomit or feed. They are not sure, so they are doing a Ph probe to test for reflux.
I am currently sitting in WCH now, while lilly undergoes Ph testing. It takes 24 hours after a tube with sensors is put down her nose into the oesophagus and measures the acidity of fluid coming up in to the throat. I have to press buttons on the recorder when she coughs, cries or vomits, or eats/drinks until 2pm tomorrow. She is doinfg much better now, off the oxygen, saturating well, happy and bubbly :) Except that she now has an infected and very sore peg site :( Darn hospitals! Three samples of hers tested positive to staph whilst in here that were clear before.
I have been in a daze, not able to think more than a few hours ahead of time. During all this i had to do a presentation for my TAFE course and i have another which i am supposed to be preparing for now instead of being on here! lol Cant wait to get her home again and settled. I am over this hospital stuff...yet again!
I am however ever so greatful and priveledged to have such a wonderful supportive family, bunch of friends and online community at Lilly Lane Kids Without Diagnosis xx
On the 25 minute ambulance ride to the WCH, mu Lilly Bubba struggled to get a brreath and had practically stopped breathing when we reached the hopital. They raced her in to resus where i stood, watching them run around my baby, stick things into her all over, gave her an adrenaline shot to kickstart her breathing and bring up her heart rate, gave her ventolin, oxygen and other drugs to keep her breathing. It was like a dream..i knew it was happening but i didnt feel anything..numbness, shock, disbelief. My Nurse side kicked in and took over from my mum side i think so i could cope. Thank you nurse side!
She was admitted to the paediatric ICU and given ventolin and oxygen. Because her oxygen was so low she had a hypoxic seizure, and then hd trouble keeping her oxygen up, and was still breathing with such a struggle that thy ventilated her with CPAP. This is basically a mask, which seals over her nose and mouth, forces air in to her lungs and keeps her lungs inflated so she can breathe out and get rid of the Carbon dioxide that builds up. She was on this for 3 days. They put in a central Venous line in her femoral ( groin) artery for fluids and drugs. She was given antibiotics aswell. Her left lung had totally collapsed, and her lungs were filled with thick sticky mucous which was acting as superglue.
The docs are saying she had a virus which turned into a pnuemonia, testing positive for staph, so then turned bacterial. But she may have aspirated in to her lungs on her vomit or feed. They are not sure, so they are doing a Ph probe to test for reflux.
I am currently sitting in WCH now, while lilly undergoes Ph testing. It takes 24 hours after a tube with sensors is put down her nose into the oesophagus and measures the acidity of fluid coming up in to the throat. I have to press buttons on the recorder when she coughs, cries or vomits, or eats/drinks until 2pm tomorrow. She is doinfg much better now, off the oxygen, saturating well, happy and bubbly :) Except that she now has an infected and very sore peg site :( Darn hospitals! Three samples of hers tested positive to staph whilst in here that were clear before.
I have been in a daze, not able to think more than a few hours ahead of time. During all this i had to do a presentation for my TAFE course and i have another which i am supposed to be preparing for now instead of being on here! lol Cant wait to get her home again and settled. I am over this hospital stuff...yet again!
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