A Month Full of Love & Sharing

December is my favourite month of the year. It is a month of celebration, sharing of love and gifts. It also marks the end of a long eventful year and the beginning of a brand new, better one (don't we all wish for that huh?). A happening month means more to cover. Therefore, I shall keep my entry short (finger-crossed).

Little C was warded for the 4th time this year on 26 Nov 2014. Oxygen level was low accompanied by a chesty cough and high fever. It was a short 2-day stay but an unforgettable one. I was startled by two familiar voices in the high D ward at 3.30am. For a moment, I thought I was dreaming and disregarded it. Seconds later, I heard a familiar name and the same voices in the background calling out in distress. It was C's pal, Kaelyn, in the same ward just a bed next to us curtains drawn. It was a tense moment, I felt absolutely awful and I wish never to have to go through it again. I was glad Kaelyn and C made it home in full recovery.

Moments after C's story was published in the papers, a NYP student wrote to ECDA on our behalf to find out the possibility of providing an education for C.

Hubby and I saw a high level of maturity, sensibility and initiative in this young man and found his action admirable. We need more like him don't you agree? That will make a lot of difference to this not-so-pretty society I see today.

Meanwhile, we have also received messages from the public offering to help C in unique ways. Some offered to provide free clinic consultation and others healing therapy. A lady wished to dedicate a section in her retail outlet to sell my bento tools/accessories just so I could concentrate on caring for C and  not keep myself busy attending to business queries and sales.

How very thoughtful of these folks!

Their 'loot' - toys, books, stickers and cake

Just last week, a kind gentleman, Mr Loh, took time off work to bring the children Christmas shopping at Toy 'R' Us. Cayla was over the top excited, ran all over the store, grabbed every boxes of toys she fancied >_<|||

Poor daddy mommy were busy distracting her and returning the boxes to their original places. At the end of the day, all I could say is that Mr Loh made the children very happy. They hardly get the chance to do a shopping spree (neither do I hahaha, kiddin').

Been 2 years since we last had a Xmas tree

There were also 2 beautiful ladies, Lynda and Shirley, who came by our place to visit C. They brought me lunch & coffee, presents for the children, books, Christmas tree and accessories. It was our first meeting and I was overwhelmed by their generosity. They stayed to set up the tree and kept C entertained. The finished project - simply beautiful. I even bought a Gingerbread house to complete the look. All I need now is to finish painting the house.

To Mr Loh, Lynda and Shirley, you brought light and love to our home, brought joy and put smiles on our children's faces. We thank you for making a difference to our lives. I hope our relationships will blossom into long-lasting friendships in time to come.


While updating this blog, the funds from Indiegogo campaign has came through.
The breakdown of the total funds raised (all amount quoted in SGD) is as follows:

Indiegogo campaign - $14,288.11
Cheques/bank transfers - $5,610.00
CDA - $1,500.00
Grand total - $21,398.11 (as of 10 Dec 2014)

Here is how we wish to utilise the funds:

Tomato chair - $3,390.00 (still waiting for delivery)
Cough assist machine - $6,527.00 (recommended by therapists during C's hospital stay)
Buggy for Kaelyn - $3,500.00 (to help a fellow RDSS family purchase a machine)
Blessing for Danielle - S$1,000.00 (to help a fellow RDSS family with consumables)
Pledge a meal - $500.00 (this will cater more than 60 packed meals as initially intended)
Remaining funds - $6,481.11 (of which $1,500.00 is in CDA non-withdrawal account)

A heartfelt THANK YOU to all funders! We can never thank you enough.

Finally, a quick update on C's health status. His recent sleep test results came back. Nothing very much conclusive. I was told that his didn't achieve deep sleep at particular BIPAP settings. Tech titrated the settings throughout the night and they went as high as 15/7 (if this even make sense to the general public). C previously was on 12/6 and had increased to 13/7 while in hospital. To keep the story short, doctors would like to increase the settings at a rate C is able to cope with. Therefore they will keep the BIPAP at 13/7. All in all, C seemed to be in good shape for now. Can't wait to celebrate Christmas with my folks!

2D1N Stay

Today we checked in to 'Hotel KKH' for our 1 night 'vacation' stay again. C came in for a routine procedure - undergoing his 2nd sleep test this year. The recent one was done in February. Purpose is to determine if the current BIPAP settings serve him well, otherwise settings need to be adjusted to ensure that he breathes well.

As usual C cried whenever anyone came near him. A phobia he developed over last few admissions. These were taken during the preparation process. Needed to be all wired up - legs, body and head so as to take readings throughout the night while he sleeps.

C has grown heavier (from 9.2kg to 9.5kg. He's a very slow weight gainer) and lankier. This time I did not carry him while wiring in progress. All went well and he settled down a whole lot faster than last time (previously he cried for 1.5hr straight before dozing off to sleep).

I hope he fares well for the test. It will be encouraging to know that his lungs are still functioning well and he is maintaining his oxygen level at healthy level. Will know the results soon. At least I will find out from the tech how he does tomorrow.

Caring For Caelen

Today is my 8th day at the hospital possibly many more days to go. Seems indefinitely delayed for many reasons.

I ate, bathed, slept and breathed hospital air. Ward 65 is my home now and frankly I am so in need of a good grooming session. Sadly, during my stay here, I only had a 30-min bonding session with Cayla when she visited.

Learning how to connect the parts

C checked in last Tuesday and was immediately hooked up and tubed. Over the last week, he made good progress and was slowly off drip, oxygen, day BIPAP support and therapies. Unfortunately C was traumatized by the never-ending suctioning and soon refused to feed orally thus the need for NG tube. In order for C to be discharged, I need to learn how to suction, tube-feed, intubate and change his NG tube (successfully under supervision, 3 times, once each day which equates to an additional 3-day stay in the hospital). So poor mommy here has been taking up hands-on sessions with the homecare team (enthusiastically) to speed up C's discharge. The enthusiasm is somewhat dampened by many hurdles along the way (i) the need for more than 10k worth of new machines e.g. BIPAP, humidifier, desktop oximeter, suction machine, oxygen tank, a long list of consumables. The acquisition of which requires time and this further delays his discharge (ii) the time required to complete my hands-on (iii) the tons of information on patient care, machine usage and care etc to digest (iv) meeting with medical social work to discuss on possible funding (if we are even eligible in the first place).

First time intubating (inserting tube from nostril to stomach) and suctioning C was rather successful (if you could just ignore his screams and cries during the process). Luckily I'm not one who hesitate at the slightest protest or squirms at the sight of blood. I'm still hoping for the earliest possible discharge. Till then...

First Hospitalisation

C was admitted to KKH High D Ward just 3 hours ago.

It was a cough that started the day before, got worsen by the day accompanied with a high fever of 39.5°C. His sats were not looking good. SpO2 at 92 while asleep with BIPAP. It even dropped to 87 at one point. On seeing that C was in agony, we decided to make a trip to the hospital.

After initial assessment, doctors suspected a case of acute bronchiolitis, felt that he could do better under close supervision and advised for C to be admitted. In the next few hours that followed were many tests, poking and plenty of beeping from the machine. Prick test was done. Swabs from the nose, armpit and groin were collected. A drip set on his tiny hand. Oxygen mask donned his face. Sensor probe on toe to monitor his vitals.

C fell asleep shortly before 5 a.m. and as for me I'm blogging away to pass time. How to sleep on a wooden chair in a freezing room? And to think that I'm going to be here for the next few days sigh...

A Warning

From the time we had received the trial BIPAP machine till the time the new machine was delivered, masking C was often met with difficulties, either he was unwell or something just had to break down. For that reason, we had decided that C could enjoy a little more days of natural sleep without machine intervention through careful monitoring. He was doing very well for the longest time I could remember. Drops in SpO2 were rare.

Friday night was different.

The first alarm was triggered before midnight. Oxygen saturation on the oximeter read 84% and it continued to dip by the second - 83, 82, 81...  77, 76, 75...

In the past, C lowest SpO2 was at 72% so I wanted to prevent it from reaching that. I began to gently stroke his chest hoping to wake him up from deep sleep (usually my touch would wake him and send his pulse rate & SpO2 back to normal level). This time, no response.

70, 69, 68... the drop did not stop. Worried, I hasten to wake him but to no avail. I grew desperate and started calling and patting him. My gaze were going forth and back, on C and on the dreadful numbers reflected.

62, 61, 60... finally, C stirred and I breathed in deep for the first time. His SATS started climbing and things were soon back to norm. I did, however, noticed that his pulse rate was fluctuating and SpO2 was at a lower than usual 96%.

Few minutes passed and the alarm sounded again. Two more dips ensued. I then alerted hubby to be on standby while I changed a new sensor probe to ascertain the erratic readings. I had the BIPAP and mask ready too. Things quieten down for the next hour and just as we thought it was over, the cycle started again (even though the drops were not as drastic). By the sixth drop, we were ready to mask him. C usually fights hard when on mask but this time round, he fussed only because we shifted him. He went right back to sleep shortly. No more beeping and no more heart-stopping moments.

Tonight, even though C is doing better but I do see slight drop and decided that he should stay masked. Wondering if it's the Monday jab at the polyclinic which is making him weaker?

Anyway, shall continue to do my night monitoring and I do hope tomorrow will be a better day.

Rejoice!

Always been a side-sleeper

C's respiratory doctor had returned from leave. We took the first opportunity to explore the possibility of reducing BIPAP pressure settings so C could quickly resume usage. Dr B was very understanding and see to the changes immediately. Pressure was dropped from 15/7 to 12/6.

First night of trying yielded surprising results:
09:00pm   Mask on
10:30pm   Fell asleep
11:00pm   Woke in state of shock, heart-rate climbed to 170
11:20pm   Returned to sleep
07:30am   Slept till next morning

Second night was a breeze:
09:30pm   Mask on
09:45pm   Fell asleep
07:00am   Woke up

It definitely brought about hope and peace of mind knowing that C is quick adapting and is able to breathe properly during sleep.

Mid-week, we made another trip to KKH for a scheduled (video)fluoroscopy. C being a glutton, completed the procedure effortlessly. Nom nom nom, doctors monitored the motion x-ray display and voila! he's done in less than 10 minutes. Doctors observed droplets of milk entering and exiting the top of his airways, C is at risk of asphyxiation. Taking preventive measure, we were instructed to change his bottles and teats to one with extremely slow flow (so slow that C became impatient as he took 20 minutes to finish a feed). While drinking poses a risk, doctors were somewhat satisfied with his ability to take blended food. In fact he fared better eating than drinking and hence agreed that C continues to eat as tolerated, which is just as well since C loves to eat.

Other than going for appointments, what has C been up to lately? Well, he is pretty much growing up like a normal child. He prefers to be up and exploring than lying on his bed. We thus try to accommodate whenever possible, carrying him around teaching him new things. C is also fighting to be more independent too, wanting to hold his own bottle (provided it's not too heavy for him). See how elated he was doing that!

I hope to see more milestones coming. Surprise me baby :)

 

Before I go, this entry is for tonight:
10:10pm   Mask on and fell asleep

Blessed. Good night peeps!


P.S. Uncles & Aunties: Thank you for your generosity and kindness. Little C is very thankful and blessed to be loved by all.

Second Challenge

In March, Caelen went for a series of follow-up appointments with various doctors. Here's an update:

• Respiratory - Sleep Test results showed overall oxygen level at 93% (less than ideal of above 95%). Lowest oxygen level at 73% (frequent drops observed). Usage of a BIPAP machine during sleep is necessary to improve his breathing.
• Chest Therapy - Senior therapist checked and noted that he is not using full lungs capacity to breath.
• Physiotherapy - Weak trunk and limps. Need to continue with therapy at home to at least maintain and hopefully improve his strength.
• Occupational Therapy - More than satisfied with his fine motor skills and cognitive development. Praised that he is a smart boy and is able accomplish complicated tasks suited for older tods.
• Feeding - Doctors were concerned as he was no longer chewing his food and he seemed to have slight problem swallowing. Caelen was thus scheduled for a videofluroscopy early next month. Doctors also noted that his weight is not climbing as much as it should and I was ordered to thicken his milk as well as putting him on Valens Carborie.

After numerous trips to the hospital, Caelen came down with a fever 5 days ago with no other symptoms. Kaelyn's daddy and mommy (another special family) were kind enough to come check on Caelen (to ease my worries) and loan us their portable oximeter for monitoring his condition. That very night, Caelen's temperature shot up to 40 degrees with heart rate at 213, his vitals triggered the alarm. Drowned in the beeping of the machine, hubby and I sponged our boy for close to an hour, finally bringing his temperature and heart rate down to desirable level. Miraculously, his fever was completely gone the next day.

Caelen subsequently developed a cough in days that followed. We started putting him on BIPAP to regulate and aid his breathing. He cried incessantly each time we hooked him to the machine, we even tried to calm him by playing his favourite videos. Unfortunately, he vomited on different occasions, with one particularly bad that he erupted like a fountain. That I'll need to check with his respiratory doctor on the cause.

For now, his MMR inoculation this week had been postponed. He is on BIPAP (during sleep) for as long as he could tolerate. Otherwise, sometimes I think he fared better without.

Caelen Is One!

Overnight Sleep Test at KKH

On 28 Feb, Caelen underwent a Sleep Test at KKH. This test is often conducted for patients with sleep apnea or related sleep disorders. However, in the case of SMA patients, it is used to identify their sleep patterns, access respiratory functions and to also understand how the changes in airflow and pressure aid their breathing while asleep.

In order to take detailed readings of the above mentioned, technician needed to wire him up to a few machines. Took us almost an hour and a half to complete this delicate task with Caelen screaming and crying the entire time (not a great experience). He continued to protest for the next hour that followed, leaving me emotionally and physically drained. But the night ended well with him knocked out, totally exhausted.

We celebrated Caelen's first birthday cum fundraising the Sunday that followed. It was the best celebration ever and fundraising was a success! All these not possible without the help from families, friends and lovely people.

Heartfelt thanks to:

1. Mr Rahul Sharma & Ms Beh Hui Shiang the venue sponsors (very lovely place) for this party
2. Ms Isabel Lee-Shorrock the resourceful planner who has helped in ways I could never thank her enough
3. Many friends who came and helped out with the logistics and setup
4. Families and friends who came for the birthday party
5. All kind donors and supporters for the fundraising program

Special thanks to kind sponsors:

1. Mr Case Woo & Ms Tammy Sim for designing the 'Thank You' cards
2. Mr Tan Jit Khoon - Winson Press Pte Ltd for printing the 'Thank You' cards
3. Mr Bernie Lee - A'zone Corporation Pte Ltd for the customised Sesame Street backdrop
4. Ms Rena Tan & Partner - Sugarena :: Candy Buffet Stylist for the candy table of Sesame Street treats
5. Pan Pacific Singapore for the Sasha's Bears
6. Ms Annabelle - One-Stop No. 1 Entertainment for the lovely Sesame Street balloon sculptures and face-painting session
7. Mr Joe Lim - Wow Let's Party for the helium balloons & Elmo balloon bouquet
8. Mr Eisen - Birthday Party SG for the fabulous entertainment
9. Ms Samantha - Hey, Cupcakes! for the pretty and delicious Cookie Monster cake
10. Ms Renae Lim - Say It With Sugar for personally baking and decorating the Sesame Street cookies
11. Ms Vivy Toha for the organic Nutrifresh soya milk sachets
12. Mr Alex Pua - BellyGood by Tung Lok Group for the professional service and logistics arrangement

Finally, hubby and I did our first live TV interview with Channel News Asia AM Live today, a special arrangement by Mr Kenneth Mah of RDSS. For those who missed the live telecast, this is the link to the video clip http://www1.channelnewsasia.com/amlive/2014/03/03/interviews-rare-diseases/

Raise awareness, bring about changes and new hopes for all rare diseases patients.

Hectic Week

After a good long CNY break, it was back to the routine hospital trips. There were 5 appointments in first two weeks of February and an additional two end of the month.

Anyway, I absolutely dreaded these trips. There is always a high risk of Caelen catching something either from the train rides (plenty of peeps who refused to don a mask when sick) or from the hospital where all kinds of bugs and viruses lurk. Home is still the safest.

Well, this was Caelen during a mask-fitting session at KKH earlier, in preparation for his sleep test on the 28th as well as for the BIPAP machine which he'd be using at home very soon. I need not elaborate but it was not a pleasant experience for both of us. Endless crying and screaming was all I remembered.



Trying on a Mini Me

On a happier note, a few things to anticipate this week:

We will be celebrating "Rare Disease Day 2014" with other special families on 1st Mar at Furama City Centre Hotel, an event jointly organised by Club Rainbow (Singapore) and Rare Disorders Society (Singapore). This is open to public so please do support.

We will also be celebrating Caelen's 1st birthday on the 2nd Mar!! It's yet another milestone for my baby boy. How can we not put up the best for him? So here I am, working really hard to put things together and honestly, it's tough juggling work, family, babysitting, chores, hospital trips and organising an event. Hoping it will turn out just fine.

Before I go, here's another pic of my little one with his 3rd pearlie on the way. Better late than never! It's about time he grows some teeth. Cheers!