Equipments starting to break down.

K has been using her medical equipments since November 2012. Her inventory of medical equipments are

1. Breas Vivo40 BiPap
2. Covidien Desktop Oximeter
3. Desktop suction machine
4. Kangaroo epump
5. Portable Oximeter
6. Portable suction machine
7. Ormesa Buggy

Most of her equipments are mechanical and/or driven or supported by batteries. Given time, both mechanical and electrical systems will deteriorate.

Her BiPap gave way 1 fine afternoon. We have since got hold of a replacement.

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.

We've change out the battery and the leaky cannister for the portable suction machine before we went on the cruise.

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.

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.

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.

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:)

BiPap Down

Just as K was settling into her routine after some downtime, our BiPap decided to stop working last week.

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.

Rushed back home from work to have a look. No restarts could make it work again.

Called up the supplier to come have a look and bring a temporary replacement unit.

Thankfully K has a good day with her secretions. She was able to manage and hold out without her BiPap until the supplier came.

We have our ambu bag on the standby of course, but didn't have to use it this round.

Now...to look at the repair cost :(

Getting out of the woods

It has been 2 to 3 weeks since the last terrifying episode, K has been doing ok. No scares.

We have her on the nebuliser with saline, together with Flumecil, to loosen her mucus or secretion.

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.

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.

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.

But it has been like this since about 2 years ago. Chest physios even when she is well doesn't seem to make it better.

Homecare Tea party 2014

We went for the KKH Homecare the party on Saturday. There were energetic Zumba performances, hand painting and cosplay characters. But we didn't really enjoy the party.

K had a few episode of desat there. Not sure why, but either she she couldn't cope with her secretion at that moment or she got a shock when she saw the masked cosplayers. But we sure made use of and thankful for the ample oxygen tanks around.

After resolving K desat issue, then our vivo BiPap decided to just off itself. We were on 12V external power and have used this setup countless of times. Thankfully after we connected the main AC power, the BiPap got up and working fine, including with the 12v battery, until we were home.

Only took this picture after we reached home. She went to party and got a "tattoo" and rainbow looms. 

PEG button change

Last Friday, K had her replacement of her PEG button in the Children Surgical Centre. The entire thing was over in about a minute.

I feel for K. They really yanked it out and popped in the new button.

I guess it was the way to go. But it done was really fast and clean. I guess it would have hurt for a longer time if you took the time to slowly twist and pull it out.

The area of the button was raw for few days, but expected.

This is the Bard after it was taken out. It's kind of our souvenir.

It was last October when we first had the button done for K. We had the Bard button put in for K at that time.

It was leaky after about 4 months. There was back flow, even 3-4 hours after last feeding. Since recommended time for change is about 6 months, we made an appointment to change the Bard out.

This time, we opted for the AMT Mini ONE Non Balloon.

The only thing about this AMT button is that it is slightly bulkier than the Bard. The Bard has a lower profile compared to the AMT when compared with both the continuous feeding tube inserted.

If you don't like the button/feeding tube combination to look like a small erm...button underneath the shirt, Bard would probably be the way to go.

Let's see how this model of AMT button goes.

Portable oximeter

We received a portable oximeter from a friend. We are thankful of the gift. What is even better is that it is same brand as the one we are using at home.

We do not need to source for different sensors. We save cost as we do not need to keep spare of another brand of sensor. it is conveninient as we just need to unplug the sensor and put it into the other oximeter. No unwrapping and wrapping of the tapes over the sensor

When bring Kaelyn out, we can travel lighter. Less worry about breaking her main oximeter when we move her equipment around.

We are thankful for this.

May power be bestow unto you

With K being dependent on machines to ensure as much of a quality lifestyle as possible, it has limited our activities in terms of time able to spend outside the house and activities. Then we also have to ensure her 20 hour feed per day. But that is another story for another day.

Where ever she goes, these machine follows. And these has a battery life.

• BiPap Machine (2 Hrs)
• Oximeter (5-7 Hrs)
• Suction Machine (1 Hr)
• Feeding Pump (10-15 Hrs)

Home care session (23/08) and reflux issues

Kaelyn measured in at 10kg++ and 81cm in length. Not much weight increase this time round so feeding stays the same. An increase of about 2.5cm in length/height.

She got to try out the cough assist this time round as we requested for it previously. We only tried out a few sets at +-10 pressure settings. This is a very low setting. I guess they have their concerns as I think KKH is trying out the cough assist machine on such a young patient (Kaelyn is 18 months old) for the first time.

I think there was a positive outcome as her SPO2 increase from her average of 98 to 99-100. I shall give it a benefit of doubt that it is the cough assist machine working.

The next time round in hospital would be for her PEG procedure. I really can't wait for this actually as there is a reflux issue surfacing now. Recently Kaelyn had reflux again. This time while suctioning for her. It is worrying. I will try to schedule it earlier if possible.

Visual cues vs oximeter

We had a minor scare during the weekend. What happen wasn't serious, but in fact quite funny come to think of it.

We were attending a church service last Saturday when in the middle of the service, we noticed Kaelyn's O2 Sats weren't doing too good. We proceed to perform some suctioning on her airway as she has quite abit of secretions. But she didn't maintain her sats but it continued to drop slowly.

We were starting to get anxious and turned on her oxygen supply, when we also smell something. It is slightly embarrassing on Kaeyn's part, but well...she is just a little girl. It was smell of poo :) we pushed her out of the room quickly before the congregation leaves the room :P We were also slightly anxious still as her O2 sats are still not good.

Since the changing room was in the ladies, I did not follow. After minutes of changing Kaelyn out, they came out. Kaelyn is fine. I think she was exerting strength and not breathing as much hence the drop in O2 sats.

Funny when we come to think of it but not so funny at that time.

Oximeters is just a machine and it only reacts according to how the body is or how you are condition your body to be. Perhaps we depend on the oximeter a little too much. It would be good if learn to be more sensitive to visual cues that Kaelyn shows as well.

Sunday morning walk

Morning walk around punggol park #kaelynaday, a photo by ka1w3n on Flickr.

We had wanted to bring Kaelyn to a park or something like that but always foiled by the weather.

Hence this time round, instead of opting to go out in the afternoon, where showers are more likely to appear, we went out in the morning.

Kaelyn's equipment

Ever since her discharge from her last admission into KKH, we have to go home with a number of equipment.

1. Pulse Oximeter
The Nellcor N-600x. This is to monitor her Oxygen(O2) saturation level (O2 sats) level and her pulse rate. It is also good for getting a warning that she is waking up from her sleep. Normally, her O2 sats should be greater than 95%. Her pulse rate at home and in hospital differs a bit. It is higher at home. So we are trying to see that she settles down at home and maybe establish a baseline for her pulse rate.

2. Bipap Machine & humidifier
The Bi Level Positive airway pressure machine continuously pumps air into her airway to ensure she gets enough air to breathe. The humidifier works to ensure the air entering her airway is not too dry.

3. Kangaroo ePump
She had her inpedence test done in her last stay in KKH. The results were a significant reflux. So for now, feeding her is a round-the-clock affair. This is to reduce the pressure of one single bolus milk feed on her digestive system, and minimising the reflux issue for now.

4. Suction machine
She has 2 of this. One a "desktop" version, or rather one that is stationary and has no backup battery. The other is the DeVilbliss portable suction machine, which we promptly got as a backup after the incident where the suction machine broke down. It is also for whenever we leave house. We can help clear Kaelyn's airway as and when we need if we are out.

Kaelyn with no ventilator mask and nasal tube

Kaelyn with no ventilator mask and nasal tube, a photo by chan.kaiwen on Flickr.

Just found another picture of Kaelyn. This one is probably taken during her weekly nasal tube change.

Off with the mask!

Each morning when Kaelyn takes a bath, we will remove her mask, take the oximeter sensor off her and take off her continuous feed as well.

This is 1 short moment for the day where she will not be attached to any machine. She is pretty glad not to be attached to any machine. And we do feel her gladness for this short while of freedom for her.

The temporary disconnection from the equipments, especially the oximeter, also does makes us feel insecure as we do not have the reading from the oximeter to indicate if her respiration is fine. We have to rely on Kaelyn's facial expression and cues to judge if she is fine.

Equipment failure on the day of discharge

On the day Kaelyn was discharged and coming home, it was supposed to be a non-event, but I think this deserves a post on itself.

Before leaving the hospital, she had suction done on her airway by the nurses. She was transported into our vehicle with all our equipment and belongings, and was on our way home. it was nearing rush hour and traffic was not quite fast. While driving, I secretly prayed that the batteries of the equipment will last the trip home and not give up while stuck in the jam.