I edited this fully, leave it in my phone and didn't upload it until recently.
One of the few celebrations we had for her birthday. Happy times...
Thursday, May 14, 2015
Tuesday, May 5, 2015
Epilogue - Kaelyn's Journey
It's been slightly more than a week. I come home from work and home's quieter than usual.
There is no beeping sounds from the oximeter, humming sound from the oxygen concentrator or sound of air gushing through the BiPap machine.
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.
It will take a while to get used to the lack of these noises.
This is the new usual, it seems.
It all seems like a dream.
We bade farewell to Kaelyn almost 2 weeks ago. She earned her angel wings.
Though the journey with her short, it was also intense.
Her diagnosis of SMA Type 1 at that time was like a bad dream.
But I do know the time spent together is very real.
Since her diagnosis, we have tried our best to keep our promise of keeping her happy for as long as she lives.
We are prepared for this day to come, but we are never ever prepared.
Until her last conscious day, she was still cheerful and playful as always.
She remembered all the story telling, dancing moves and the singing by those that drop by and visit her. She loved it all.
She really digged the photo shoot by Portrait from the heart. 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.
Most importantly, that was our only proper family portrait, which we cherish it dearly.
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.
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.
No firm decisions were made at that time.
Kaelyn is always decisive about her choice of playtime, clothes to wear or cartoon to watch.
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.
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.
This time round, just like her normal feisty self, she seem to choose her way.
There was no need for anyone of us to make up any decision for her.
And it seems like this was actually the best way for her, judging from all the circumstances.
When well, Kaelyn regularly goes to the playground below the block and just look at the kids play.
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.
You have always yearn to play on the swings and merry go rounds in the playground.
It has been tough on Kaelyn physically, but she has endured it all, always coming out of situations with smiles and cheerfulness.
I was wrong. You have been brave. You have been a fighter.
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.
There is no beeping sounds from the oximeter, humming sound from the oxygen concentrator or sound of air gushing through the BiPap machine.
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.
This is the new usual, it seems.
It all seems like a dream.
We bade farewell to Kaelyn almost 2 weeks ago. She earned her angel wings.
Though the journey with her short, it was also intense.
Her diagnosis of SMA Type 1 at that time was like a bad dream.
But I do know the time spent together is very real.
Since her diagnosis, we have tried our best to keep our promise of keeping her happy for as long as she lives.
We are prepared for this day to come, but we are never ever prepared.
Until her last conscious day, she was still cheerful and playful as always.
She remembered all the story telling, dancing moves and the singing by those that drop by and visit her. She loved it all.
She really digged the photo shoot by Portrait from the heart. 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.
Most importantly, that was our only proper family portrait, which we cherish it dearly.
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.
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.
No firm decisions were made at that time.
Kaelyn is always decisive about her choice of playtime, clothes to wear or cartoon to watch.
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.
This time round, just like her normal feisty self, she seem to choose her way.
There was no need for anyone of us to make up any decision for her.
And it seems like this was actually the best way for her, judging from all the circumstances.
When well, Kaelyn regularly goes to the playground below the block and just look at the kids play.
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.
You have always yearn to play on the swings and merry go rounds in the playground.
It has been tough on Kaelyn physically, but she has endured it all, always coming out of situations with smiles and cheerfulness.
I was wrong. You have been brave. You have been a fighter.
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.
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.
Tuesday, April 14, 2015
We don't wish to but we have to
I had to drop by the hospital as I have arranged to meet the parent of Chloe to pick up some things.
They are one of the family in our support group.
I was there as the nurse was attempting to set the IV plug on the wrist for Chloe’s treatment.
This is a weekly event for Chloe.
The nurse tried 2 or 3 times to find the vein but couldn’t.
I left. But they did eventually set the plug successfully on the other arm
I thought of Kaelyn resting at home nursing her infection. It’s been 12 days since she started having intermittent fever.
We are contemplating hospital admission but don’t wish to risk any other form of infection (although you could say she already is)
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.
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
Repeat the above for 3 times during the day time.
Our coughs, percussion and suction could take quite a while (as long as 2 hours sometimes) as we try to clear her airways properly.
We jammed up 3 suction catethers attempting to clear her single nasal airway yesterday. It was thick and sticky even after the nebs.
The treatment/therapy takes out a lot from Kaelyn. She looks dead beat after that.
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.
We could only try our best to console the kid as they undergo the treatment/therapy to get them better.
Making them undergo treatment/therapy are sometimes between the devil and the deep blue sea.
If only pain is transferable.
We don’t wish to but we have to. Sigh.
Note: 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 :)
Thursday, March 26, 2015
da da ma ma
I walked past Kaelyn’s room one evening while the door was ajar after we had just carried her into her room.
Mummy’s with her.
She grab mummy’s attention with her vocable call for attention. Mummy asked if someone walked past the room.
She answered yes.
Mummy asked who was it?
She managed to vocalized “da-da”
We tried that a few times of me walking by and Kaelyn calling out and identifying who walked past.
Then I switched role with mummy.
She manage a “muaaa”
Later I told her to try this “muahahahha”, something like Dr. Evil’s laughter.
She did a “muaa. Haha”
ROFL literally.
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.
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.
Mummy’s with her.
She grab mummy’s attention with her vocable call for attention. Mummy asked if someone walked past the room.
She answered yes.
Mummy asked who was it?
She managed to vocalized “da-da”
We tried that a few times of me walking by and Kaelyn calling out and identifying who walked past.
Then I switched role with mummy.
She manage a “muaaa”
Later I told her to try this “muahahahha”, something like Dr. Evil’s laughter.
She did a “muaa. Haha”
ROFL literally.
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.
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.
Friday, March 20, 2015
an earlier home care appointment
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)
It was supposed to be 2 weeks later but it has been an eventful month (here and there). Home care and Starpals team deem it significant to bring forward the appointment.
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
I think she grew in her height too at 103cm.
There were discussions which mainly focus on her current main risk now, which is aspiration.
Recommendations were thrown in 1. Change to a faster absorption milk feed 2. Change to a GJ feeding tube
We are leaning towards option 2 ultimately as option 1 is a may/may not help.
However the frequent reports of bursting of the current batch of GJ tubes worries us.
Monday, March 2, 2015
Rude awakening
To hear a shout in the middle of the night from Kaelyn’s room with oximeter alarming is always not a good thing.
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.
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.
We cleaned her, settled her down and stabilized her and everyone tried to went back to bed.
Another shout.
This time she was aspirating. One of the worst fear we have.
My helper was suctioning. Had to bag her for a while. Managed to clear her airway and pacify her to rest without more drama.
Let’s hope no more drama
Kaelyn aspirating isn’t the first time within a short time frame.
It seems it happens when her body is stressed. It may be a sign of fundoplication becoming loose.
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.
I couldn’t rest now, but just wondering…
How could we do without the oxygen concentrator for 2 years?
Silly me. By running to the hospital every time shit like this happens.
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.
PS Just going off tangent wildly on the last part. Silly sleepy brains not going to sleep but having silly thoughts now.
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.
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.
We cleaned her, settled her down and stabilized her and everyone tried to went back to bed.
Another shout.
This time she was aspirating. One of the worst fear we have.
My helper was suctioning. Had to bag her for a while. Managed to clear her airway and pacify her to rest without more drama.
Let’s hope no more drama
Kaelyn aspirating isn’t the first time within a short time frame.
It seems it happens when her body is stressed. It may be a sign of fundoplication becoming loose.
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.
I couldn’t rest now, but just wondering…
How could we do without the oxygen concentrator for 2 years?
Silly me. By running to the hospital every time shit like this happens.
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.
PS Just going off tangent wildly on the last part. Silly sleepy brains not going to sleep but having silly thoughts now.
Friday, February 27, 2015
3 not so easy years
We celebrated Kaelyn’s 3rd birthday over 2 weekends.
First one was with a volunteer and her friends, where Kaelyn got serenaded with singing from the visitors.
The 2nd was with immediate family members where Kaelyn was a princess for the day.
Every year is worth a celebration considering 2 years is the average lifespan for SMA Type 1 kids.
I think for them to wake up and breath everyday is a miracle for them.
The simplest task of swallowing water could choke them.
The suit of Darth Vader probably don’t help much.
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.
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.
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.
We are thankful that we didn’t have to go through with our worst case scenario decisions.
Every checking out from a critical stay in the hospital feels like a student just scrapping pass the exams. Just barely made it.
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.
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.
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.
Happy 3rd Birthday Baby (Although you are now grown up and don’t want us to call you baby now)
First one was with a volunteer and her friends, where Kaelyn got serenaded with singing from the visitors.
The 2nd was with immediate family members where Kaelyn was a princess for the day.
Every year is worth a celebration considering 2 years is the average lifespan for SMA Type 1 kids.
I think for them to wake up and breath everyday is a miracle for them.
The simplest task of swallowing water could choke them.
The suit of Darth Vader probably don’t help much.
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.
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.
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.
We are thankful that we didn’t have to go through with our worst case scenario decisions.
Every checking out from a critical stay in the hospital feels like a student just scrapping pass the exams. Just barely made it.
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.
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.
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.
Happy 3rd Birthday Baby (Although you are now grown up and don’t want us to call you baby now)
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