tag:blogger.com,1999:blog-78465049867712553062024-02-21T08:25:31.261+08:00All the little thingsAnonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.comBlogger99125tag:blogger.com,1999:blog-7846504986771255306.post-79024024170914977892016-04-24T23:53:00.002+08:002016-04-24T23:54:07.881+08:001 Year OnTime passes so fast. It has been a year since we laid Kaelyn to rest.
We came together and had a memorial on her 1st anniversary in Heaven at where we last bade her farewell, at the waters off Changi Ferry Terminal.
We then went out to sea in 2 bumboats.<br />
<br />
<a data-flickr-embed="true" href="https://www.flickr.com/photos/128718963@N08/26523782802/in/dateposted-public/" title="Kaelyn 1st Anniversary memorial"><img alt="Kaelyn 1st Anniversary memorial" height="375" src="https://farm2.staticflickr.com/1464/26523782802_9158a20527.jpg" width="500" /></a><script async="" charset="utf-8" src="//embedr.flickr.com/assets/client-code.js"></script><br />
<br />
My neighbour's boy, Jayden, drew a picture for her beforehand. It is a picture of them out at sea on a boat enjoying the day.<br />
<br />
<a data-flickr-embed="true" href="https://www.flickr.com/photos/128718963@N08/26013481363/in/dateposted-public/" title="Kaelyn 1st Anniversary memorial"><img alt="Kaelyn 1st Anniversary memorial" height="281" src="https://farm2.staticflickr.com/1485/26013481363_b9cb98e14d.jpg" width="500" /></a><script async="" charset="utf-8" src="//embedr.flickr.com/assets/client-code.js"></script><br />
<br />
We went out and didn't think of how to end with the drawing. One of us made it into a paper boat. We tied balloons of Kaelyn's favourite cartoon character to it.<br />
<br />
<a data-flickr-embed="true" href="https://www.flickr.com/photos/128718963@N08/26343381090/in/dateposted-public/" title="Kaelyn 1st Anniversary memorial"><img alt="Kaelyn 1st Anniversary memorial" height="500" src="https://farm2.staticflickr.com/1646/26343381090_40865f7074.jpg" width="375" /></a><script async="" charset="utf-8" src="//embedr.flickr.com/assets/client-code.js"></script><br />
<br />
We dropped off flowers, set the paper boat off and reminisce as we watch the paper boat sail away.<br />
<br />
Truly grateful for the friends that remembers her. Also very proud of my girl in the way she left impressions among people who interacted with her.<br />
<br />
A year later after we laid Kaelyn to rest, it still hurts when memories of us together flood my head.
Time heals all wounds they say. This statement is a lie. This wound never heals. It will only be buried by the hustles of life, but never healed.<br />
<br />
<br />
<br />
<br />
<br />
<span style="font-size: x-small;">Also written at <a href="http://kiwininja.net/1-year-on/" target="_blank">KiwiNinja</a></span>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com2tag:blogger.com,1999:blog-7846504986771255306.post-17694146024579392812016-02-16T16:24:00.001+08:002016-02-16T16:24:18.206+08:00Happy 4th4 years ago you said hello<br />
Happy birthdays we wished to sing<br />
We understood you had to go<br />
Still we wish you Happy Birthday<br />
May you hear it from where you are<br />
<br />
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<a href="http://i2.wp.com/kiwininja.net/wp-content/uploads/2016/02/img_7284.jpg?w=840" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://i2.wp.com/kiwininja.net/wp-content/uploads/2016/02/img_7284.jpg?w=840" height="240" width="320" /></a></div>
<br />
<br />
This was posted first at <a href="http://kiwininja.net/happy-4th/" target="_blank">KiwiNinja</a>, named after Kaelyn's 2 pet turtles.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-13340825581577042872015-08-21T23:37:00.001+08:002015-08-22T00:00:59.706+08:00孩子,你慢慢来 (Because I Love You) TV DocumentaryKaelyn was recently featured in a TV Documentary 孩子,你慢慢来 (Because I Love You).<br />
<br />
It is a 4 episode series featuring babies/toddlers who require special care.<br />
<br />
This documentary series was aired on <a href="https://www.facebook.com/channelu" title="Channel U">Channel U</a><br />
<br />
Kaelyn initially wasn't supposed to be featured that much but for some reasons, she got more involved and was featured much more than we had expected.<br />
<br />
She passed away 4 days after her final filming session.<br />
<br />
Grateful for the production crew and the chance that Kaelyn got her story told.<br />
<br />
The YouTube links are below. For some reason, some portions of the videos are silent or lack background music, which are not production fault.<br />
<br />
<a href="https://www.youtube.com/watch?v=hkc4mh2oH6c" title="Episode 1">Episode 1</a><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/hkc4mh2oH6c" width="560"></iframe>
<br />
<a href="https://www.youtube.com/watch?v=TVJyVHZamf4" title="Episode 2">Episode 2</a><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/TVJyVHZamf4" width="560"></iframe>
<br />
<a href="https://www.youtube.com/watch?v=MDX-P71eekQ" title="Episode 3">Episode 3</a><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/MDX-P71eekQ" width="560"></iframe>
<br />
<a href="https://www.youtube.com/watch?v=qMBalMK6uZE" title="Episode 4">Episode 4</a><br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/qMBalMK6uZE" width="560"></iframe>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-50370335685454043682015-08-21T17:00:00.002+08:002015-08-21T23:35:00.315+08:00HCA Remembrance Day SharingThis was something we shared on HCA Starpal's Remembrance Day 15th August 2015.<br />
<br />
This is a day where they remember the sons and daughters under the care of Starpals, who have earned their wings.<br />
<br />
======<br />
<br />
Kaelyn will be 3 1/2 years old exactly tomorrow. However she isn't around anymore.<br />
<br />
She passed away on April 23rd 2015 due to Spinal Muscular Atrophy Type 1.<br />
<br />
We have been invited to share abit on this day as we remember our kids who have been around.<br />
<br />
<h3>
Discovery of her illness </h3>
Kaelyn was born normal but at age 6 months, we were told she have muscular atrophy type 1 by a neurologist.<br />
<br />
We didn't know what it was. We went home checked the Internet about SMA Type 1. It sounded and is horrible and terrible as those affected will lose control of their muscles and will atrophy.<br />
<br />
Anything that requires muscles will be affected. From sitting, moving and even breathing.<br />
<br />
And her symptoms totally fit.<br />
<br />
We were devastated even though the results had not come back. We waited for 2-3 weeks for the result to come back.<br />
<br />
<h3>
Grief</h3>
We grieved about her diagnosis. It was like a death sentence for her. We've been through the stages of grief.<br />
<h4>
Denial</h4>
We try to tell ourselves it may be other reasons why she is so weak.<br />
<br />
How can it be this genetic disease when we do not remember of any family history.<br />
<br />
We keep thinking she could be slow in development. Or she is taking her time to grow stronger.<br />
<br />
<h4>
Anger</h4>
Then we were kind of angry. How could it be? Who could play such a joke on us.<br />
<br />
<h4>
Bargain</h4>
Can I give up years of my life for a normal life for my girl? Pretty please whoever is up there.<br />
<br />
<h4>
Depression</h4>
Whenever we thought of her diagonsis, we would tear up. Why does this little child of mine have to suffer from such a disease.<br />
<br />
After 2-3 weeks of waiting, we received her result. We cried and cried that day.<br />
<br />
<h4>
Acceptance</h4>
But that was the day when we tell ourselves that Kaelyn young as she might be, will know and feel the mood.<br />
<br />
We shouldn't let her think that why is she always making her mummy and daddy sad.<br />
<br />
We told ourselves that we should simply keep her happy, and at the same time treat her as normal kid as much as we can.<br />
<br />
<h3>
Our daily life</h3>
Take away the BiPap, milk pump and other equipment, She is just a normal little girl.<br />
<br />
She wants to munch on food, even when she is tube fed from 10 months old onwards.<br />
<br />
She wants to watch her TV shows.<br />
<br />
She loves dolls.<br />
<br />
She loves to paint her nails.<br />
<br />
She loves to go to the playground. And she throws tantrum if she feels she haven't spend enough time at the playground.<br />
<br />
Insert medical emergencies now and then, and physio session everyday, we try to give her a normal life.<br />
<br />
As long as she's happy. We told ourselves.<br />
<br />
<h3>
Lesson learnt</h3>
In the documentary where Kaelyn was filmed. We were asked if we've learned anything.<br />
<br />
I did not really have an answer. As it happened quite fast<br />
<br />
But we think now we have.<br />
<br />
<h4>
Think positive</h4>
We are encouraged by her positive outlook of her life.<br />
<br />
She has been tube fed for most of her life.<br />
<br />
One day at the playground, we asked her if she wants porridge when we get back home, she did a HAHA! Because she knew she is tube fed so no porridge for her.<br />
<br />
At the playground, she is very content to watch kids play. Though I believe she deeply desires to be able to run up the slides, slide down, and then do it repeatedly.<br />
<br />
You could say this was the only life she had. Immobile and tube fed. But we cannot deny that she has a always been cheerful and contented most times of her life.<br />
<br />
<h4>
Sharing and encouragement</h4>
Kaelyn most times is willing to share what she has, or what she knows.<br />
<br />
In one of the hospital stay, Kaelyn was going to do her chest physio and cough assist.<br />
<br />
A young doctor happened to be around and asked what's a cough assist.<br />
<br />
Mummy asked her, Doctor don't know what's a cough assist. Can you show him how we use it?<br />
<br />
Kaelyn answered loudly yes! She went on bravely to do her coughs and suctions, as if she was doing a product demonstration.<br />
<br />
We were encouraged by her to share her story to encourage anyone in a similar boat.<br />
<br />
<h3>
Her passing</h3>
Her deterioration came as sudden as lightning. After few days in ICU, We had to let her go.<br />
<br />
We had been mentally preparing for such a day to come. But when it came, we still weren't prepared.<br />
<br />
It's like we had a dream of 3 years 2 months and 7 days.<br />
<br />
A poem I came across, Author unknown<br />
<br />
A butterfly lights beside us like a sunbeam<br />
And for a brief moment its glory and beauty belong to our world<br />
But then it flies again and though we wish it could have stayed...<br />
We feel lucky to have seen it.<br />
<br />
<h3>
Closing</h3>
On this day, we remember our little angels, who have departed prematurely in their lives.<br />
<br />
Ultimately, their lives are much shorter than normal.<br />
<br />
How long? we don't know at that time. We know we just want our kid to be happy.<br />
<br />
Though unwilling to be apart, we rejoice in the hope that Kaelyn has a whole body, and is free from the shackles of her old body. Now she is free to run, hop and play.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-75860861762827800912015-05-14T17:53:00.002+08:002015-05-14T17:53:24.459+08:00One of the early celebration for Kaelyn's 3rd BirthdayI edited this fully, leave it in my phone and didn't upload it until recently.<br />
<br />
One of the few celebrations we had for her birthday. Happy times...<br />
<br />
<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/RsyNGoliEr0" width="560"></iframe>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-79147744985254123322015-05-05T22:51:00.000+08:002015-07-30T06:28:58.858+08:00Epilogue - Kaelyn's JourneyIt's been slightly more than a week. I come home from work and home's quieter than usual.<br />
<br />
There is no beeping sounds from the oximeter, humming sound from the oxygen concentrator or sound of air gushing through the BiPap machine.<br />
<br />
The most significant absence is the sound of Kaelyn and mummy's playtime, the constant bantering between Kaelyn and our helper whenever they are together, and Kaelyn calling me as I walked past her room to mine to drop my stuff down after work.<br />
<br />
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It will take a while to get used to the lack of these noises.<br />
<br />
This is the new usual, it seems.<br />
<br />
It all seems like a dream.<br />
<br />
We bade farewell to Kaelyn almost 2 weeks ago. She earned her angel wings.<br />
<br />
Though the journey with her short, it was also intense.<br />
<br />
Her diagnosis of SMA Type 1 at that time was like a bad dream.<br />
<br />
But I do know the time spent together is very real.<br />
<br />
Since her diagnosis, we have tried our best to keep our promise of keeping her happy for as long as she lives.<br />
<br />
We are prepared for this day to come, but we are never ever prepared.<br />
<br />
Until her last conscious day, she was still cheerful and playful as always.<br />
<br />
She remembered all the story telling, dancing moves and the singing by those that drop by and visit her. She loved it all.<br />
<br />
She really digged the photo shoot by <a href="https://www.facebook.com/portrait.from.e.heart" target="_blank">Portrait from the heart</a>. She wasn't fussy and in between shots she would take a break, just like a diva would, except she puts on her BiPap for some breath and to clear her secretions, then snap some photos once more.<br />
<br />
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<br />
Most importantly, that was our only proper family portrait, which we cherish it dearly.<br />
<br />
When she was well few days before the acute incident, we've contemplated about few issues on change of a different feeding tube, quality of life issues and her comfort.<br />
<br />
Our helper was thinking of heading home and ending her contract at year end. That will need mummy to stop work and/or find a suitable helper to hire at home.<br />
<br />
No firm decisions were made at that time.<br />
<br />
Kaelyn is always decisive about her choice of playtime, clothes to wear or cartoon to watch.<br />
<br />
On one warm day after her bath, she decided it was too warm to put on clothing. she FaceTime her noon time call list, wearing only her diapers, and seemingly proud of her playful defiance.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT8YcDidsMkTBJeUWr7cQf6TAeccGnDjE_1M4GIGDMIvhs9irnJbM2DTnfGGW4If39eW9fW5MYZd2918_aIHTvz_T168qMxOvl6obv62fiw3CgqW9YThHPwNMJwFBQpiNVuUxV429eHaI/s1600/16754120404_c1c0756d54_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT8YcDidsMkTBJeUWr7cQf6TAeccGnDjE_1M4GIGDMIvhs9irnJbM2DTnfGGW4If39eW9fW5MYZd2918_aIHTvz_T168qMxOvl6obv62fiw3CgqW9YThHPwNMJwFBQpiNVuUxV429eHaI/s1600/16754120404_c1c0756d54_n.jpg" /></a></div>
<div style="text-align: center;">
<br /></div>
Refusing all appeals to put on clothing, She allowed her helper to dress her only after grandma said anyone walking outside naked can be caught by the police.<br />
<br />
This time round, just like her normal feisty self, she seem to choose her way.<br />
<br />
There was no need for anyone of us to make up any decision for her.<br />
<br />
And it seems like this was actually the best way for her, judging from all the circumstances.<br />
<br />
When well, Kaelyn regularly goes to the playground below the block and just look at the kids play.<br />
<br />
Occasionally, she wants one of us to play on the swing or work out on the exercise station. It is as if she does what she wants to do through us.<br />
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<br />
You have always yearn to play on the swings and merry go rounds in the playground.<br />
<br />
It has been tough on Kaelyn physically, but she has endured it all, always coming out of situations with smiles and cheerfulness.<br />
<br />
I was wrong. You have been brave. You have been a fighter.<br />
<br />
Your fight is over now. You have broken free, and with a complete body. Go now girl (still my baby), have an adventure of your own.<br />
<br />
<div style="text-align: left;">
Thank you for God for the peace and serenity you've granted her in her last days. May you watch and bless your fellow little fighters.<br />
<br /></div>
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Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-72934728592131118422015-04-14T14:54:00.001+08:002015-04-14T15:44:38.474+08:00We don't wish to but we have to<p>I had to drop by the hospital as I have arranged to meet the parent of <a href="http://savechloe.com" title="Chloe">Chloe</a> to pick up some things. </p>
<p>They are one of the family in our support group.</p>
<p>I was there as the nurse was attempting to set the IV plug on the wrist for Chloe’s treatment. </p>
<p>This is a weekly event for Chloe.</p>
<p>The nurse tried 2 or 3 times to find the vein but couldn’t.</p>
<p>I left. But they did eventually set the plug successfully on the other arm</p>
<p>I thought of Kaelyn resting at home nursing her infection. It’s been 12 days since she started having intermittent fever.</p>
<p>We are contemplating hospital admission but don’t wish to risk any other form of infection (although you could say she already is)</p>
<p>We have increased the intensity and occurrence of her chest physio daily in the attempt to keep her lungs clear and open as her mucus generation increases following the onset of some form of infection.</p>
<p>When she’s sick, her schedule are like this
1. Wake up
2. Start nebulizer
3. Chest percussion (this could take awhile)
4. Cough assist and suctions
5. Rest/play
6. Nap</p>
<p>Repeat the above for 3 times during the day time.</p>
<p>Our coughs, percussion and suction could take quite a while (as long as 2 hours sometimes) as we try to clear her airways properly.</p>
<p>We jammed up 3 suction catethers attempting to clear her single nasal airway yesterday. It was thick and sticky even after the nebs. </p>
<p>The treatment/therapy takes out a lot from Kaelyn. She looks dead beat after that.</p>
<p>As a parent, I believe it hurts for parents to see their child go through such pains of probing and piercing, let alone on a regular basis.</p>
<p>We could only try our best to console the kid as they undergo the treatment/therapy to get them better.</p>
<p>Making them undergo treatment/therapy are sometimes between the devil and the deep blue sea.</p>
<p>If only pain is transferable.</p>
<p>We don’t wish to but we have to. Sigh.</p>
<p>Note:
<em>I understand there are individuals that may ask why put them through more pain in their life. Of course this question definitely comes to the mind of the parents of special needs kids. But that would be another topic for another day :)</em></p>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-28298575521993978152015-03-26T00:01:00.001+08:002015-03-26T00:20:49.112+08:00da da ma maI walked past Kaelyn’s room one evening while the door was ajar after we had just carried her into her room.<br />
<br />
Mummy’s with her.<br />
<br />
She grab mummy’s attention with her vocable call for attention. Mummy asked if someone walked past the room.<br />
<br />
<a href="https://www.flickr.com/photos/128718963@N08/16927802855" title="Lazing in bed, waiting for her bed time story by Kelvin Chan, on Flickr"><img alt="Lazing in bed, waiting for her bed time story" height="500" src="https://farm8.staticflickr.com/7639/16927802855_1acd615dae.jpg" width="375" /></a>
<br />
She answered yes.<br />
<br />
Mummy asked who was it?<br />
<br />
She managed to vocalized “da-da”<br />
<br />
We tried that a few times of me walking by and Kaelyn calling out and identifying who walked past.<br />
<br />
Then I switched role with mummy.<br />
<br />
She manage a “muaaa”<br />
<br />
Later I told her to try this “muahahahha”, something like Dr. Evil’s laughter.<br />
<br />
She did a “muaa. Haha”<br />
<br />
ROFL literally. <br />
<br />
Her body is limiting everything a human can do. Even the muscles to smile is diminishing. When smiling she could only manage to curl one side of her lip up. <br />
<br />
It’s really nothing to scream about for a 3 year old to barely make phrases or speak the words that resonates with just ahhs but inside us, we are squealing with delight for Kaelyn.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-19831281596605378132015-03-20T14:51:00.001+08:002015-03-20T14:51:44.005+08:00an earlier home care appointment<p>We brought Kaelyn to her home care appointment last Friday. It’s her first time out of the house since last December (not counting trips to the A&E)</p>
<p><a href="https://www.flickr.com/photos/128718963@N08/16682693578" title="Warming up in her stroller after months of not sitting in it by Kelvin Chan, on Flickr"><img src="https://farm8.staticflickr.com/7650/16682693578_d216df08a5_n.jpg" width="240" height="320" alt="Warming up in her stroller after months of not sitting in it"></a></p>
<p>It was supposed to be 2 weeks later but it has been an eventful month (<a href="http://kaelyn-a-day.blogspot.sg/2015/03/rude-awakening.html" title="here">here</a> and <a href="http://kaelyn-a-day.blogspot.sg/2015/02/just-some-bad-days.html" title="there">there</a>). Home care and Starpals team deem it significant to bring forward the appointment.</p>
<p>Mandatory for every visit. The weigh in of daddy and Kaelyn. We totaled almost 100kg(97kg). We both grew in weight! Kaelyn was almost 15kg</p>
<p>I think she grew in her height too at 103cm.</p>
<p>There were discussions which mainly focus on her current main risk now, which is aspiration. </p>
<p>Recommendations were thrown in
1. Change to a faster absorption milk feed
2. Change to a GJ feeding tube</p>
<p>We are leaning towards option 2 ultimately as option 1 is a may/may not help.</p>
<p>However the frequent reports of bursting of the current batch of GJ tubes worries us.</p>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-90526067168089502342015-03-02T09:22:00.001+08:002015-03-02T09:25:06.340+08:00Rude awakeningTo hear a shout in the middle of the night from Kaelyn’s room with oximeter alarming is always not a good thing.<br />
<br />
She looks like she was in discomfort. We went through part by part asking if this was painful. she said her stomach was aching. We had to suction her thick secretion present in her mouth.<br />
It wasn’t the 1st time tonight she had to wake up and be suctioned. I was too deep in the sleep to hear what’s going on. <br />
<br />
We cleaned her, settled her down and stabilized her and everyone tried to went back to bed. <br />
<br />
Another shout.<br />
<br />
This time she was aspirating. One of the worst fear we have.<br />
<br />
My helper was suctioning. Had to bag her for a while. Managed to clear her airway and pacify her to rest without more drama.<br />
<br />
<a href="https://www.flickr.com/photos/128718963@N08/16501739620" title="Untitled by Kelvin Chan, on Flickr"><img alt="Untitled" height="500" src="https://farm9.staticflickr.com/8648/16501739620_1941fa0ef3.jpg" width="375" /></a><br />
<br />
Let’s hope no more drama<br />
<br />
Kaelyn aspirating isn’t the <a href="http://kaelyn-a-day.blogspot.sg/2015/02/just-some-bad-days.html" title="first time">first time</a> within a short time frame.<br />
<br />
It seems it happens when her body is stressed. It may be a sign of fundoplication becoming loose.<br />
<br />
Right now K is knackered and is asleep with higher than usual heart rate. The oxygen concentrator is still humming away, providing O2 for her.<br />
<br />
I couldn’t rest now, but just wondering…<br />
<br />
How could we do without the oxygen concentrator for 2 years?<br />
<br />
Silly me. By running to the hospital every time shit like this happens.<br />
<br />
Both hospital and us could save more money by making this a subsidized standard item for special needs kid like K in the beginning. We save on hospital trips. They save on subsidies. They just need to prevent us from going to hospital 1 time less to cover the cost.<br />
<br />
PS
Just going off tangent wildly on the last part. Silly sleepy brains not going to sleep but having silly thoughts now.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-82191475281530665432015-02-27T13:42:00.001+08:002015-02-27T13:50:16.443+08:003 not so easy yearsWe celebrated Kaelyn’s 3rd birthday over 2 weekends. <br>
<br>
First one was with a volunteer and her friends, where Kaelyn got serenaded with singing from the visitors.<br>
<br>
<a href="https://www.flickr.com/photos/128718963@N08/16595549676" title="Untitled by Kelvin Chan, on Flickr"><img alt="Untitled" height="282" src="https://farm9.staticflickr.com/8574/16595549676_fc8db9aee9.jpg" width="500"></a><br>
<br>
The 2nd was with immediate family members where Kaelyn was a princess for the day.<br>
<br>
<a href="https://www.flickr.com/photos/128718963@N08/16414171487" title="Kaelyn 3rd Birthday 20150215182922 by Kelvin Chan, on Flickr"><img alt="Kaelyn 3rd Birthday 20150215182922" height="500" src="https://farm9.staticflickr.com/8653/16414171487_a71a729299.jpg" width="333"></a><br>
<br>
Every year is worth a celebration considering 2 years is the average lifespan for SMA Type 1 kids. <br>
<br>
I think for them to wake up and breath everyday is a miracle for them.<br>
<br>
The simplest task of swallowing water could choke them.<br>
<br>
The suit of Darth Vader probably don’t help much.<br>
<img alt="Darth Vader Suit" src="http://img3.wikia.nocookie.net/__cb20100427121150/starwars/images/7/76/Vaderarmor_negwt.jpg" title="Title">
<br>
There are ups and downs. The bad days life threatening, while the the ups are simply having fun days that puts a smile on K’s face (and without any choking or mucus pluggin episodes) and we treasure that.<div><br>
The highlight of last year was of course the trip on the cruise. Kaelyn absolutely loved it. It sure took quite an effort on the logistics part.</div><div><br>
We were also faced with literal life or death decisions yet again in the wards of the ICU, where we contemplated hard about Kaelyn’s life, death, quality of care and comfort.</div><div><br>
We are thankful that we didn’t have to go through with our worst case scenario decisions.</div><div><br>
Every checking out from a critical stay in the hospital feels like a student just scrapping pass the exams. Just barely made it.</div><div><br>
We made it through another year. But we have to be realistic. But as much as we want to, for now, we cannot beat SMA.<br>
In fact at any time, if a mucus plugs her airways or she aspirates her feeds, her life will be in danger if we are unable to clear it in time for her to breathe.</div><div><br>
But for now, we celebrate the days. We try to lead an inclusive life with Kaelyn with the support of friends and family (even strangers for that matter) and face the challenges of a special kid.</div><div><br>
Happy 3rd Birthday Baby (Although you are now grown up and don’t want us to call you baby now)<br>
<a href="https://www.flickr.com/photos/128718963@N08/16657836341" title="Kaelyn 3rd Birthday 20150215182826 by Kelvin Chan, on Flickr"><img alt="Kaelyn 3rd Birthday 20150215182826" height="333" src="https://farm9.staticflickr.com/8656/16657836341_923c9a149c.jpg" width="500"></a></div>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-4936546661487908612015-02-09T10:03:00.001+08:002015-02-09T10:42:29.756+08:00A helping handI was doing some cleaning of the bookshelves when I came across the book Fred and Reb passed to us.<br />
<br />
<img alt="a helping hand" src="https://farm9.staticflickr.com/8636/16265958260_1ecb2cbd19.jpg" />
<br />
It reminded me of the time when we just discovered that Kaelyn’s journey is going to be different.<br />
I supposed you could say it was dark days.<br />
<br />
What to do? We didn’t know the when, whats, hows and why.<br />
<br />
We could only turn to the Internet. We found articles writing about SMA being the number 1 genetic baby killer, does not live pass 2 years, no cure. It was depressing.<br />
<br />
We found the Muscular Dystrophy Association Singapore (MDAS). Sent an email in asking for any help but was expecting my mail to be lost in the imaginary heap of mails that is the enquiries mailbox.<br />
<br />
But we did get a reply and they linked us up with parents who were willing to share their experience with us.<br />
<br />
Fredrick and Rebekah was one of them. They let us visit them and they shared their experiences of their own. Their younger daughter, <a href="http://myprincessdanielle.blogspot.sg/" target="_blank" title="Danielle">Danielle</a>, also has Spinal Muscular Atrophy (SMA).<br />
<br />
It sure helps with a helping hand, especially one who have walked through the road we have to take.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-24988432796890281452015-02-05T23:48:00.001+08:002015-02-06T00:10:31.689+08:00Just some bad daysSitting down, and starting to type out this entry after a bumpy evening. My helper is putting Kaelyn to sleep earlier than usual.<br />
<br />
Kaelyn heart rate was tachy and wasn’t holding her spO2 too well this evening.<br />
<br />
We didn’t finish her sets of cough assist. We gave her a break after checking that she sounds clear enough.<br />
<br />
She just wasn’t holding it too well today. <br />
<br />
Seems like she’s like this when she doesn’t get enough rest. <br />
<br />
<a href="https://www.flickr.com/photos/128718963@N08/16264573527" title="Untitled by Kelvin Chan, on Flickr"><img src="https://farm8.staticflickr.com/7328/16264573527_b9b730f6f9.jpg" width="375" height="500" alt="Untitled"></a>
<br />
Last Saturday was more stressful.<br />
<br />
Same thing. Tachycardia and spO2 didnt hold up well. She even seem to aspirate her feed.<br />
<br />
Aspiration of her feed is bad as it could go into her lungs and lungs could collapsed.<br />
<br />
SpO2 dropped well into the 50s% (healthy is 95% and above)<br />
<br />
We standby to bag her on Saturday. But we didn’t have to. Good not to stress her body further.<br />
<br />
After her own record ICU stay, she’s really more fragile. <br />
<br />
Her fingers weaker.<br />
<br />
Ankles stiffer.<br />
<br />
Her smile is fading.<br />
<br />
Her voice lacking her usual strength.<br />
<br />
The combination of the progression of her disease, splints preventing her hand movement, IV lines preventing her wearing of her AFOs just takes the poll on her.<br />
<br />
I go to bed thinking when she recuperates enough, maybe she can wave her hands, give me a bigger smile and shout so loud from the hall, I can hear from the corridors when I come back from work.<br />
<br />
Just a weak maybe.<br />
<br />
She’s in good spirits most times, but it just takes lesser to set her off now.<br />
<br />
if she starts to not have quality naps and night sleep, She is literally alarming. Her heart rate goes up to 180–190 like a sports car going into the highway and her spO2 goes below the healthy level and stays there long enough for you to worry. <br />
<br />
It’s like screw it, I am tired breathing normally. Take 5. Breath harder in awhile. Let them go fix me a dose of O2 therapy for me. Chop chop.<br />
<br />
We scramble around, put her into her favorite position, suctioning what we could suction, supplement whatever appropriate dose of O2 she needs.<br />
<br />
Amidst the frantic action going on, We tell her It’s ok baby. Rest and relax, but just remember to breath in breath out.<br />
<br />
As K’s previous therapist told us, We are going to have just some bad day now and then (somewhere along that line)<br />
<br />
Just some bad days.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-38794865196752231492015-01-22T08:56:00.004+08:002015-01-22T08:59:00.208+08:00Out of hospital<span style="font-family: inherit;">Kaelyn has had her <span style="background-color: white; color: #545454; line-height: 18.2000007629395px;">endotracheal tube</span><span style="background-color: white; color: #545454; font-weight: bold; line-height: 18.2000007629395px;"> (</span>ETT) removed, discharged from the ICU and has made it home.</span><br />
<span style="font-family: inherit;"><br /></span>
3 weeks ago we admitted her into the hospital We have had difficulties managing her secretion and mucus while in the High dependency ward after almost a week and had to bring her to the ICU, put in the ETT.<br />
<span style="font-family: inherit;"><br /></span>
<br />
<div>
<span style="font-family: inherit;">While on the ETT, it has been easier for the medical staff to manage the secretions. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">We had the ETT removed last Thursday. She sustained well on her own going back to the nasal mask.</span></div>
<div>
<br /></div>
<div>
<span style="font-family: inherit;">She is back home to her routine of trying hard to refuse naps and sleep. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">She seem to have grown an inch when put on her mattress for scale. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<div>
<span style="font-family: inherit;">She still seem fragile.</span></div>
</div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">But her voice is gradually coming back and getting louder, and still has her playful spirit.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
She tried making funny noises, found it amusing and kept making it, until her secretion got caught up and had to have a slight suction to clear her throat. After that, back to making those noises.</div>
<div>
<br /></div>
<div>
<span style="font-family: inherit;">Her mucus in her nose is still never ending, although manageable through our suctioning.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">She still has some thick old gunk in her nose being suctioned out.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">I did it for her nose again last night and drew some fresh blood. I stopped doing for her nose. I didn't want to traumatize her nose anymore. Although I would definitely have to try to do it some time next day. </span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
<span style="font-family: inherit;">Suctioning is such necessary evil. And she's such a trooper, just nodding if I ask her if it's comfortable, and shaking her head if I asked if it was painful.</span></div>
<div>
<span style="font-family: inherit;"><br /></span></div>
<div>
We are thankful she sustained well after coming off the ETT. There would be painful decisions for everyone, in the short term or long term, to make if she cannot come off the ETT.<br />
<br /></div>
<div>
This is Spinal Muscular Atrophy.</div>
Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-79937353905319031772015-01-13T09:45:00.002+08:002015-01-22T08:58:45.308+08:00Turn of eventKaelyn having done ok since her admission, things suddenly took a turn in the hospital<br />
<br />
Her fever spiked. It’s not high but it’s a constant low grade fever.<br />
<br />
Her secretions and mucus became more in volume. Together with bleeding in her nose and throat (probably trauma from suctioning), all these just stuck together, making things unmanageable.<br />
<br />
We were literally fishing for mucus plugs.<br />
<br />
We bagged her few times.<br />
<br />
We were recommended to intubated her. We went ahead with that to make her breathing and secretions more manageable.<br />
<br />
Being intubated, she is now in ICU. Fever is gone.<br />
<br />
We took the chance to do a bronchoscope procedure, clearing a plug in the airways Where we wouldn’t be able to reach it.<br />
<br />
Her secretions production still high gear. We have still been able to keep her lungs clear, a plus point.<br />
We are awaiting for better, clearer conditions in her airway to extubate her.<br />
<br />
Gosh this feels like a rocket launch.<br />
<br />
Fingers crossedAnonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-25808866571009594682015-01-07T00:13:00.000+08:002015-01-07T00:13:21.476+08:00Not a start to the year we want<span style="font-family: Arial, Helvetica, sans-serif;">I am at the hospital with Kaelyn. We have been here for the past nights. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Not a start we want for the year, month, week, day or hour as a matter of fact.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwBjV9xVcDFjtJANTE5JA_uBBtyERWdBPmrMpoS84bZ87BfZChVk6fdhkGHhWgUIXpz_umtMbE9tJMU3Ev5BvqYeb3bydPHgl9Mxp_DiLy9bUAEiGsonT4ZEXdQCLtw1Vgwna4pHVBDpw/s1600/IMG_6650.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwBjV9xVcDFjtJANTE5JA_uBBtyERWdBPmrMpoS84bZ87BfZChVk6fdhkGHhWgUIXpz_umtMbE9tJMU3Ev5BvqYeb3bydPHgl9Mxp_DiLy9bUAEiGsonT4ZEXdQCLtw1Vgwna4pHVBDpw/s1600/IMG_6650.JPG" height="320" width="240" /></span></a></div>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">We arrived into the hospital, after <a href="http://www.livestrong.com/article/207246-how-does-an-ambu-bag-work/" target="_blank">bagging</a> her, in an ambulance.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">We were doing music therapy and she was humming along. Then suddenly she turned quiet, gave non-responsive stare and her sats just plummets. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">We stablised her after a while but the ambulance was well on its way.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">For the past few days, she has fever that goes up and down for the past few days. Her inside of her nose is also swollen and bloody after numerous suctioning to clear her airways.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Her condition is stable so far.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I sit here writing this and having </span><span style="font-family: Arial, Helvetica, sans-serif;">second thoughts, such as we probably shouldn't have needed to leave home if we handled the situation better. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">We should be more confident in our knowledge of K's condition and whatever life saving hacks for K.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">After all, if possible, home is the best for resting and recuperating.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">The first night, we had a boy opposite us who couldn't stop crying. No rest for that night.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">The hourly checks for temperature and blood pressure in the day and night just irritates K out of her rest.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">The aircon went bonkers as well, rendering the ward as cold as a data centre server room temperature. This also had some effect on K's sleep.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">But on 3rd thoughts, we are <i>kiasee :P</i> Scenarios like bagging her halfway and we run out of oxygen and then not sure how to sustain her in the last minute dash to the hospital.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">After the incident and admission, I had a chance to talk to a doctor who knows K and her condition. We talked and walked thru about what had happened and he gave some information on what usually will happen during sickness and the effect it has on kids with compromised breathing.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">We take this as a lesson that we need to MENTALLY rehearse (we do not want an actual situation again ever!) well to handle well such emergencies, that will take place so often on kids with Spinal Muscular Atrophy.</span>Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-35999796379812815172014-12-05T10:15:00.000+08:002014-12-05T14:52:26.651+08:00Big Day Out - Mariner Of The Sea<div style="box-sizing: border-box; color: #333333; line-height: 25px; margin-bottom: 16px;">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">We have been wishing to be able to bring Kaelyn out of the Singapore borders. But we have not done so out of fear of medical or equipment issues cropping up when we are more than 1 hour drive away from medical help. In addition, her equipments and requirement to have oxygen tanks on standby with her probably makes customs clearance difficult.</span><br />
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">In November, we were given the opportunity to do so by </span><a href="http://www.clubrainbow.org/" style="box-sizing: border-box; color: #4183c4; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; text-decoration: none;" target="_blank" title="Club Rainbow">Club Rainbow</a><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> as they were organising a 4 day 3 night cruise, together with </span><a href="http://www.rdss.org.sg/" style="box-sizing: border-box; color: #4183c4; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; text-decoration: none;" target="_blank" title="Rare Diease Society Singapore (RDSS)">Rare Diease Society Singapore (RDSS)</a><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> for both their members, on board Royal Caribbean’s Mariner of the Sea.</span><br />
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">It is really a big day out for </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Kaelyn</span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> as it was her first ever trip out of Singapore, and also her logistics require ‘big’ effort.</span></div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">These are the bags for 3 adults and 1 Kid, with no winter clothing and excluding the equipment on her buggy.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Rf4T9VdkjJjBCJZ3VUZcdgmgGhtNQifXMFvcdItxhCSBkKIrLFsmPpTUuUcTHlZuSEUO552Xiu64YXd0UiBq43fKRXpp9Knt_o7NCFtCdiuLskGSVszQM2jzMtmACDTYSZHoV8bA5DY/s1600/IMG_6055.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9Rf4T9VdkjJjBCJZ3VUZcdgmgGhtNQifXMFvcdItxhCSBkKIrLFsmPpTUuUcTHlZuSEUO552Xiu64YXd0UiBq43fKRXpp9Knt_o7NCFtCdiuLskGSVszQM2jzMtmACDTYSZHoV8bA5DY/s1600/IMG_6055.JPG" height="240" width="320" /></span></a></div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">We were kiasu (scared to lose) and kiasee (scared to die). We bought backups for her critical machines. These made up half of our baggages. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Tagging along with Club Rainbow and RDSS probably made clearing the customs easier as we were going through as a contingent. The customs were probably expecting what we have on hand. </span></div>
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Also Club Rainbow have a medical team on stand by all the time during the cruise. We know we have some support if there are issues. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">I am glad that we were able to make this trip. </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Kaelyn pretty much</span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;"> enjoyed the time on the ship even though activities for her were limited. </span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">She loved the christmas tree on display. She tries to sing some christmas songs whenever she goes past the tree.</span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">She also shook hands and posed for pictures with puss in boots.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqjoxaAtILuoV82tlrcb9b7ohUVVolSdGb74Uq5UDX2K0L6Y-iIQZMCFOOabUYfh4jWhwf1mdJT2-y0NymDijDL1YCr21im9BNFhUgTPvo7BMqetPyrVS5t71FlzZrfZ1x2eS_-USmI1k/s1600/IMG_5928.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqjoxaAtILuoV82tlrcb9b7ohUVVolSdGb74Uq5UDX2K0L6Y-iIQZMCFOOabUYfh4jWhwf1mdJT2-y0NymDijDL1YCr21im9BNFhUgTPvo7BMqetPyrVS5t71FlzZrfZ1x2eS_-USmI1k/s1600/IMG_5928.JPG" height="240" width="320" /></span></a></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Not a very keen fan of the outdoors </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhciHSbWHxMWo5bTDN5WG-YilJuZPesAmcXb-ymX0s8c-zBj9Bzf0ml3VSmuly0o63ORfMibmLeST-8B1oKaOgFvNQFQ8ZVEfyiYkKHjBC1-zKZwYK0aW3PsXODTCfbMDFHUff705FIJkw/s1600/IMG_6011.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhciHSbWHxMWo5bTDN5WG-YilJuZPesAmcXb-ymX0s8c-zBj9Bzf0ml3VSmuly0o63ORfMibmLeST-8B1oKaOgFvNQFQ8ZVEfyiYkKHjBC1-zKZwYK0aW3PsXODTCfbMDFHUff705FIJkw/s1600/IMG_6011.JPG" height="240" width="320" /></span></a></div>
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<span style="color: #333333; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; line-height: 25px;"><span style="color: #333333; font-family: 'Helvetica Neue', Helvetica, 'Segoe UI', Arial, freesans, sans-serif; line-height: 25px;">This trip also brought families with kids having rare life threatening conditions together. </span><span style="color: #333333; font-family: 'Helvetica Neue', Helvetica, 'Segoe UI', Arial, freesans, sans-serif; line-height: 25px;">This is <a href="http://myprincessdanielle.blogspot.com/" target="_blank">Danielle</a>, who is about 4 years older than Kaelyn. Same as </span></span><span style="color: #333333; font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif; line-height: 25px;">Kaelyn</span><span style="color: #333333; font-family: Helvetica Neue, Arial, Helvetica, sans-serif; line-height: 25px;"><span style="color: #333333; font-family: 'Helvetica Neue', Helvetica, 'Segoe UI', Arial, freesans, sans-serif; line-height: 25px;"> she has SMA. They were just sort of hanging out and watching the cartoons together. </span><span style="color: #333333; font-family: 'Helvetica Neue', Helvetica, 'Segoe UI', Arial, freesans, sans-serif; line-height: 25px;">K wanted to touch and stroke Dan's hair. and Dan didn't seem to mind K at all. </span></span><br />
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<span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">Just kids enjoying the company of other kids. </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">How did we know that she didn’t want to leave the ship and holiday behind? </span><span style="font-family: 'Helvetica Neue', Arial, Helvetica, sans-serif;">This is her face when we disembarked to go home and told her holiday's over.</span></div>
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Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-67602334546348388262014-12-04T10:12:00.002+08:002014-12-04T10:12:55.413+08:00Equipments starting to break down.<div style="box-sizing: border-box; color: #333333; font-family: 'Helvetica Neue', Helvetica, 'Segoe UI', Arial, freesans, sans-serif; font-size: 16px; line-height: 25px; margin-bottom: 16px;">
K has been using her medical equipments since November 2012. Her inventory of medical equipments are</div>
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<ol>
<li>Breas Vivo40 BiPap</li>
<li>Covidien Desktop Oximeter</li>
<li>Desktop suction machine</li>
<li>Kangaroo epump</li>
<li>Portable Oximeter</li>
<li>Portable suction machine</li>
<li>Ormesa Buggy</li>
</ol>
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<br />
Most of her equipments are mechanical and/or driven or supported by batteries. Given time, both mechanical and electrical systems will deteriorate.</div>
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Her BiPap <a href="http://kaelyn-a-day.blogspot.sg/2014/10/bipap-down.html" style="box-sizing: border-box; color: #4183c4; text-decoration: none;" title="gave way">gave way</a> 1 fine afternoon. We have since got hold of a replacement.<br />
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Her desktop oximenter and milk feed pump’s batteries are wonky. Thankful for the portable oximeter that was kindly handed down to us. It allow us to monitor K easily when we are out. So the batteries for the desktop monitor don’t matter much for now.<br />
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We've change out the battery and the leaky cannister for the portable suction machine before we went on the cruise.<br />
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Recently it is the milk feed pump that really frustrates everyone at home. It will spin for 7 or 8 times before giving out the feed error. Repeat this infintely.<br />
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We managed to get hold of and older milk pump and compatible milk bags, and then send our own milk pump in for servicing. Now to wait for the cost of servicing.<br />
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Kind of frustrating to have different problems coming in one by one, week by week. However I am grateful none of those happen during the cruise trip.<br />
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Another problem we are facing is that K is slowly growing in age and size. She is going to outgrow her buggy, mattress, beds. I would say this is a good problem to have:)</div>
Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-78916694706488658062014-11-27T07:42:00.003+08:002014-11-27T07:42:47.386+08:00365 days hospital stay free. 0 days freeK has been doing well in the period leading into and after the cruise, until last midnight.<br />
<br />
K vomited around twice.<br />
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No fever. No cough or cold. She just threw up after her end of a feed and shortly after her medicine and flush for the evening.<br />
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It was almost time for bed time for all when my helper shouted for us. She noticed liquid starting to spew out from her mouth. Seconds later, her spo2 started to descend.<br />
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We stabilized her spo2 with suctioning and a blast of O2. Her heart rate went up and stayed there.<br />
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Shortly after she threw up again. Again, we stabilized her.<br />
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Given the recurrence in such short while, we were worried about aspiration into her lungs. We decided to bring her into KKH, have a look at her x-rays and a check while she is doing ok, instead of having to rush out there should she deteriorate.<br />
<br />
Although K's been in and out of the hospital a few times. She just gets agitated when she sees the people in nurse or doctor gown approach or touch her.<br />
<br />
She got so agitated her spo2 dropped enough for the medical staff to bag her.<br />
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She is stable, but at a higher resting heart rate and Bipap settings.<br />
<br />
Hopefully she will settle soon back to her baseline, or close enough to get her out of her ASAP.<br />
<br />
She just has to make a stay in hospital an anniversary thing.<br />
<br />
We have been admitted last year on the same date, and probably the year before last.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-84384438529403909022014-11-18T07:39:00.001+08:002014-11-18T08:53:36.179+08:00Gold class seats<span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">After being down for a few weeks, K has been recuperating and is getting physically stronger.</span><br />
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Since she has some of her strength back, we started to put her up in her seat to 45-60deg and her head looking straight ahead. </div>
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Her usual head position is to the side to allow her saliva/secretion to easily flow out. If her head is straight, she has to put in more effort to clear her secretion.</div>
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We have her up looking out of the window and ask her to wave hi to the neighbors in the opposite block. We have her sit up to watch her shows on her tablet.</div>
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And she really enjoys it even though she has to put in more effort to stay in that position.</div>
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She refuses to come down when we get her to come down. </div>
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I call this her Gold Class movie seat. It's reclinable and has a leg rest that looks pretty comfortable for one to enjoy her movie.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLd275zU8G0DaXxr0lp4_E8HXFngxWApdSdGH_Gx8no4IWJp59XBay61GC1rRuHsp82KPbVMdX4YOq18vJYowha8b2_UgbJpEeDMw1mX7oQmMT0SFuP63T4wMr095nLnqI4fyeOgEtFkU/s640/blogger-image-12344524.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLd275zU8G0DaXxr0lp4_E8HXFngxWApdSdGH_Gx8no4IWJp59XBay61GC1rRuHsp82KPbVMdX4YOq18vJYowha8b2_UgbJpEeDMw1mX7oQmMT0SFuP63T4wMr095nLnqI4fyeOgEtFkU/s320/blogger-image-12344524.jpg" width="240" /></a></div>
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<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">This is Gold Class version 2, with a nicer tablet holder. </span><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody;">We would also put her arms on slings to let her move her arms on her own. (This angle doesn't look like she is too comfortable. She is ok)</span></div>
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Yes I think she probably needs better arm slings.</div>
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This lounger, together with her mattress is very useful. The comfi mattress provides a ventilated and comfortable padding on the lounger. The ikea lounger is really easy for us to put her back down flat promptly in the event she handle her sitting position or needs other attention.</div>
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The physio sitters provide really good support for her. Only problem the loaner we have fits her really snugly. Getting her out requires more effort (or we could try the next size?) to dig under her bottoms to lift her out, and at the same time ensure her tubes don't catch on any corners or hooks</div>
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Clumsy dad is catchy (Geddit? No? Never mind:( )</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhctM7T9fC5FY7egChVcu5mREHzdrKVmBR_CpcfTriT4tFKSn8pbaP6YcgYpKmZA_2BZ9GjLX_bYazi939Dnc70GUWBXsM39FR0RbR0J64Ocg_yU_NNLuUxbu-Z_av_qKW2ylaB0VEr8P4/s640/blogger-image-2144321335.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhctM7T9fC5FY7egChVcu5mREHzdrKVmBR_CpcfTriT4tFKSn8pbaP6YcgYpKmZA_2BZ9GjLX_bYazi939Dnc70GUWBXsM39FR0RbR0J64Ocg_yU_NNLuUxbu-Z_av_qKW2ylaB0VEr8P4/s320/blogger-image-2144321335.jpg" width="239" /></a></div>
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Only problem is that she is growing up. The mattress is running out of "runway" for her length and her arm span has exceeded the width of the mattress. Need to think of a solution for our use case at home before clumsy dad accidentally knocks her off the lounger *gasp*</div>
Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-76245483838692184142014-10-15T01:00:00.000+08:002014-10-15T01:00:03.048+08:00BiPap DownJust as K was settling into her routine after some downtime, our BiPap decided to stop working last week.<br />
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After the mask was removed from K for bath, it stopped working after she came back to the BiPap. It couldn't pump to the required pressure.<br />
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Rushed back home from work to have a look. No restarts could make it work again.<br />
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Called up the supplier to come have a look and bring a temporary replacement unit.<br />
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Thankfully K has a good day with her secretions. She was able to manage and hold out without her BiPap until the supplier came.<br />
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We have our <a href="http://en.wikipedia.org/wiki/Bag_valve_mask" rel="nofollow" target="_blank">ambu bag</a> on the standby of course, but didn't have to use it this round.<br />
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Now...to look at the repair cost :(Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-66122095275059887262014-10-15T00:53:00.000+08:002014-10-15T00:53:01.574+08:00Just a minor rough patch hopefullyWhat's going on lately? K has recuperated enough to sit up and play.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTDLHRixl8zO6Ysj-iY13ebUHpe9daGFmBtMpOcrP8ZOV9g5799LPYG5GVnbh830gQ2q8LxJALw3koOrVzAZYddc7J3OyKML7qEie_AEnljYdI1nhEKrBLrDKTrWOSvBFB-NBaJAgNNPg/s1600/IMG_5267.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTDLHRixl8zO6Ysj-iY13ebUHpe9daGFmBtMpOcrP8ZOV9g5799LPYG5GVnbh830gQ2q8LxJALw3koOrVzAZYddc7J3OyKML7qEie_AEnljYdI1nhEKrBLrDKTrWOSvBFB-NBaJAgNNPg/s1600/IMG_5267.jpg" height="320" width="240" /></a></div>
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We still give her once a day flumecil and nebulizer. But we can probably cut that off soon.<br />
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She had a home care visit recently too. She has healthy gain in weight and height.<br />
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We updated the docs and nurse of the bad episode that happened at home. Doctor decided the episode is probably enough to warrant an X-ray of her lungs. It also has been almost a year since she undergone an X-ray.<br />
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After discussion with the gastro team, we also had her feeding hours by another 2 hours, and then another 2 hours in future when she is used to the increase of feeding per hour.<br />
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But just when we thought we rode over the hump, she has a fever just over the Sunday.<br />
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Monday she also has some rash coming out.<br />
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Suspicions were cast on chicken pox, even though she has had her vaccines and has not been in contact with anyone in remote contact with chicken pox.<br />
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Vaccinated kids still has a chance of developing chicken pox, though it may not be full blown.<br />
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So far the rash has not been spreading. This has got the doctors and nurses puzzled though as the rash came with some scratched stripes on her skin. So we are monitoring this at the moment.<br />
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*Fingers crossed* Hope this is just a minor rough patch.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-71194728004593819962014-09-11T07:40:00.002+08:002014-09-11T07:40:57.669+08:00Getting out of the woodsIt has been 2 to 3 weeks since the last <a href="http://kaelyn-a-day.blogspot.sg/2014/08/resuscitated.html" rel="nofollow" target="_blank">terrifying episode</a>, K has been doing ok. No scares.<br />
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We have her on the nebuliser with saline, together with Flumecil, to loosen her mucus or secretion.<br />
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I am glad to say she is doing much better now. We managed to stay out of the hospital throughout these period of time, which is kind of an achievement. But of course, we needed an oxygen concentrator to tide us through at home.<br />
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One thing we noticed is that she dislike even more turning her head to her left. It seems like she has a bit of phobia of not being able to manage her secretion.<br />
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Starpals doctors and nurses are still concerned with her right upper lobe as her air entry sounds unequal. Even when she is well, her air entry sounds unequal.<br />
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But it has been like this since about <a href="http://kaelyn-a-day.blogspot.sg/2013/01/kaelyns-1st-involuntary-admission.html" rel="nofollow" target="_blank">2 years ago</a>. Chest physios even when she is well doesn't seem to make it better.Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-79203553995096055562014-08-27T07:32:00.003+08:002014-08-27T07:38:51.752+08:00ResuscitatedJust as we thought K is getting well after this <a href="http://kaelyn-a-day.blogspot.sg/2014/08/low-grade-fever.html" rel="nofollow" target="_blank">episode</a>, we probably lost K for a while yesterday.<br />
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She was taking a bath when she couldn't manage her secretion. Sensing problem, my helper accounted that she brought K to her bed to clear her secretions.<br />
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Suction was done but very promptly, she became unresponsive, eyes closed.<br />
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She had to be resuscitated. We are very thankful for my helper's response. K came around.<br />
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When I reached home, I was anxious but glad to hear her cries.<br />
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We got Starpals to come have a look to make sure that the lungs are not compromised.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8__aJEy8uynfe4OdtCpQDFfLvFQE1Us8Qg6ObRRs9AbqmdzQxWxIB3QVlO2gpfwUXJ19SShtRWMul5BggD6ybrzOMHMSQa_9r9HIC0E_eICMPsNCz2-IkV4w5dpIdAlR-jfTnqE_-YZc/s1600/photo.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8__aJEy8uynfe4OdtCpQDFfLvFQE1Us8Qg6ObRRs9AbqmdzQxWxIB3QVlO2gpfwUXJ19SShtRWMul5BggD6ybrzOMHMSQa_9r9HIC0E_eICMPsNCz2-IkV4w5dpIdAlR-jfTnqE_-YZc/s1600/photo.JPG" height="320" width="240" /></a></div>
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Hours after that episode, she can play with the nurse and doctor who came.<br />
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Although well now, she still has got thicker than usual mucus and secretion We think K got choked by a mucus plug that led to this episode.<br />
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Mucus plug is the bane of these kids with low lung function as they do not have the strength to swallow or blow out strong enough to expel the secretions.<br />
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Thank God Kaelyn is well and good as of nowAnonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0tag:blogger.com,1999:blog-7846504986771255306.post-56262449586430409702014-08-25T07:12:00.000+08:002014-08-27T07:25:17.442+08:00Low grade fever<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; font-family: Helvetica; font-size: 12px;">
<span style="-webkit-text-stroke-width: initial; font-size: 12pt;">Kaelyn suddenly had an onset of fever, thick mucus and secretion in the nose and mouth/throat for the last week.</span></div>
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<span style="font-size: 12pt;">Thick mucus and secretion is the enemy of patients with low lung function. Suspected culprit was probably a viral infection.</span></div>
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<span style="font-size: 12pt;">We went though an oxygen tank in half a day. We still have another spare. We are trying our best to not go hospital. </span></div>
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<span style="font-size: 12pt;">Thankfully we were able to loan an oxygen concentrator from Starpals to get us through. Only her upper respiratory tract is affected. So long we manage her secretion and mucus well, it should be ok.</span></div>
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<span style="font-size: 12pt;">Looks like an oxygen concentrator is next on the list.</span></div>
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Anonymoushttp://www.blogger.com/profile/07186332748502881999noreply@blogger.com0