More sleep studies

Raphael had two more sleep tests in Hobart and he continued to maintain excellent saturations over night. So with this information we organised another full Polysomnography test in Melbourne for 29-30/4/2009.

To cut a long story short, this latest test confirmed the good results that he appeared to be having in Hobart.

The Doctor told us that the previous test in Melbourne showed 23 apnoea events each hour. To put this in perspective 1 is normal and 5 is extreme so Raphael was really struggling then. This recent test showed that Raphael had improved down to just 3.5 events per hour. This result is good enough to put a stop to CPAP. We were warned not to get rid of the machine though because if he comes down with a respiratory infection then he may need to temporarily go back on it again.

We also still need to continue to monitor him because since he has stopped CPAP we have noticed that his stridor (gurgly/raspy breathing) has come back again strongly during the day. If this is still there after six months then it may be worth another full sleep study in Melbourne to make sure that nothing is getting worse with his sleeping.

As for Annie and I, we are celebrating the opportunity of getting uninterrupted sleep for the first time in three years.

And a short video like the one from 2008:

Simple Sleep Study

Raphael had a simple sleep study performed last night in hospital. This is mainly to monitor his blood oxygen saturation while not on CPAP.

The results were good in that he maintained good oxygen levels all night without a single desaturation. He even has a slight upper respiratory infection at the moment so this was an excellent effort.

We will leave him off CPAP at home for the next few nights and he will go back into hospital on Monday night to see if things are still the same.

Melbourne Sleep Study

On Wednesday we flew to Melbourne to have a Sleep Study performed at the Monash Medical Centre to determine whether Raphael still needed CPAP.

I was unimpressed by the staff who managed the CPAP while Raphael slept. They did not seem to know how to use their own CPAP machine and did not do what I told them to do when it became obvious that they did not know what they were doing. The Nurses were lovely but I don't think that they would dispute the embarrassing mistakes that they made with the machine. It reminded me on how lucky we have been in Hobart where we had the specialist introducing CPAP on Raphael themselves.

Regardless of the errors in CPAP application it was obvious that Raphael is still unable to breath properly when he sleeps. I don't have the specialists final report yet but I am 100% certain that they will recommend continuing with CPAP.

intensivist followup

We had a followup with Raphael's intensivist today after his adenotonsilecomy some time ago.

The plan is that when he gets over his current cold we will reduce his CPAP pressure down to see at what level he starts to desaturate again.

Then about late October we will go to Melbourne or Sydney to have a formal sleep study
done again to see what problem there remain with his breathing while he sleeps.

Busy day with appointments

I had a hectic day yesterday, but here I will just talk about Raphael's appointments.

In the morning we had a consultation with a physiotherapist with lots of standing and walking practice. Handling uneven ground and very small steps is the next objective for him now. Also we will try throwing objects while standing up. I think we will be able to find a good game of throwing ping-pong balls at each other while standing.

He is confidently walking with a trolley that I hand customized for him. I added swivel wheels to the bottom of a normal child's walking trolley so that he can swing it around on the ground easily. I made it with some old bed wheels which were quite high and I was planning on going to buy some lower ones becuase initially I thought that it would be too unstable. But now looking at it, I am happy that it is not rock solid as it makes him practice his balance skills more and not just lean on the trolley all the time. He loves it and he seems to be walking with it all the time so I am happy that I spent the time on the modifications.

Later in the day we had an ENT appointment to book in his Adenotonsilectomy surgery for May when his normal ENT returns from being away. One of his grommets has probably extruded (fallen out) and is just sitting in his ear canal. Apparently it can take weeks for a grommet to travel down the canal in normal conditions but putting his hearing aids in all the time might be perpetually pushing it back up the canal and not permitting it to fall out by itself. When he is under anaesthetic for his surgery in May they will have a thorough look and see if they can just be taken away they will also look for any more sign of "glue" in his middle ears.

We also had a meeting with a home care nurse about his CPAP mask. It is starting to get too small and it is tricky to get on him at night without obscuring his nostrils. We had tried a larger one but it gave him a big blister on his cheek. We will try taping up his face with soft tape and giving the new mask another go tonight but I am not confident in succeeding with this.

We were also planning to see one of his intensivists but she was stuck in an emergency case so we abandoned that plan and will proceed without the consult until we exhaust our current CPAP ideas.

Vomit in CPAP

Raphael vomited into his CPAP mask last night and we were lucky to catch it and prevent him from drowning. A number of events conspired against us last night resulting in a near disaster.

Within 15 minutes of putting Raphael to sleep with his CPAP Raphael vomited into his nasal mask and his mouth filled up with vomit to. For some reason he did not sit up or roll over and instead just struggled with no source of air.

The Oximeter alarm went off when his blood oxygen level degraded below 85% but neither my wife nor I reacted to this alarm immediately. I heard the alarm but I was doing some business in the "little boys room" and I expected Annie to go to the alarm. Tonight however we had forgotten to turn on the baby monitor in our lounge room which we need to be able to hear the Oximeter alarm in the lounge room. Our current Oximeter is only monotone and is diffucult to hear in other parts of the house without the baby monitor to relay the alarm sound. In addition to this we get so many "false alarms" that I had become complacent and was happy to complete the task that I was attending to before going to see what was the matter. I was expecting that it was just Raphael having pulled off the Oximeter probe.

As soon as I entered the room though I realized that the problem was much more serious. The room was dark but there was two numbers glowing on the Oximeter his pulse rate and his Blood Oxigen saturation. The pulse rate was on the high end of normal but the other number burned into my eyeballs as 71. Going over to him I turned on the bedside lamp and saw his nasal mask which was full of vomit and his face covered with vomit. He was pulling at his nasal mask trying to take it off and his mouth was opening and closing trying to expel the pool of vomit that was in there.

Yelling out for my wife, I sat him up and ripped off his mask. He sat there for a moment without breathing and then coughed and vomited a lakes worth into the chuck cloth that I grabbed from his bed.

He recovered quickly and after a mop-up and a change of clothes and bedding he was was ready to go back to sleep. Sitting with him on our bed and recovering from the shock, he lent over and gave both of us a gentle stroke on the arm in turn (one of his ways of showing affection). This picked up our spirits immensely.

After we put him back down to sleep I turned the baby monitor on and then called the home care nursing team to let them know of the problem that we had just experienced. They checked with the registrar and were happy with what we had done. We have an appointment with our Paediatrician in two days and mentioned that any aspiration infections will probably start to show around that time so it is important to talk with the doctor then about the incident.

We were lucky that Raphael didn't drown last night.

The boiling tube

Last night a peculiar rattling sound emanating from Raphael's equipment woke us up. It turned out to be condensation in the tube that had built up over night into a small puddle in a loop of the tube. The air blasting past the puddle of water was making it gurgle.

We emptied the tube and turned the humidification setting down a notch to see if that solves the problem. I guess we'll find out tomorrow night.

Paediatrician and paediatric intensivist

Today we had a paediatrician review to discuss the Sydney trip but we weren't really ready. We only had two letters and we had not gone through any of the recordings yet to consolidate our understanding of what we had learned in Sydney.

The paediatrician was impressed by the size of Raphael's tonsils and wants us to see our ENT to discuss removal again. She would like to wait until Raphael is over his current infection though.

While we were there we managed to see Raphael's intensivist who showed us how to setup the humidifier on Raphael's CPAP machine and also gave us the ability to make minor changes to the pressure if Raphael needs it. We also discussed the possibility of using the "AutoSet" feature on the CPAP machine but decided against.

Losing power

Last night we had a live test of losing power while Raphael is connected up to his CPAP machine.

For some reason one of our electrical appliances acted up and tripped the safety switch that powers our house. The Oxygen monitor alarmed for just long enough to wake me up before its aged battery died. Floundering up from my deep sleep and trying to find my torch in the pitch black, I could hear Raphael starting to snore without the CPAP operating and so I knew that he was ok.

After calling our electrical provider and resetting our safety switch, I got back to sleep at 3:15am only to be awoken again at 3:45 by one, rather sad sounding, oxygen alarm beep as the power was cut off again. I reset the switch again and this time I was only awarded 15 minutes before the power failed again and now I couldn't reset the power switch without it immediately tripping. The next hour was spent by me hunting around the house turning off all of the power points I could think of, in my sleepy state, and resetting the safety switch. I had to try this several times until I had though of the device which was actually causing the problem.

I checked on Raphael every few minutes during this time but he happily slept through the whole thing, apparently oblivious to the lack of sleep that my concern for him was causing.

New CPAP mask and faulty CPAP machine

A home care nurse came today and made adjustments to a new type of mask so that it would fit Raphael and hopefully put less pressure on his face.

We don't know if it will be better or worse than the last mask (in terms of leaks) but there is one thing that is definitely better: the mask makes hardly any noise. The old mask made a "sssssssss" sound where the air came out of the escape vents but this new ones vents are completely silent.

On another note, we have been told that our model of CPAP machine has been recalled due to a manufacturing fault. We were asked to return the CPAP machine to the hospital and pick up a replacement but, on further prying, it may be the case that they won't have a machine waiting to replace the one that we bring back and so we don't know how long he would have to be without one.

We trialled Raphael without CPAP last night while we were away from home and we didn't hear any complete obstructions but we could hear that his airway was very narrow and it was hard work for him to breath while he was sleeping.

Because of this experience, we are not keen on Raphael being without his CPAP machine for more than a night. We are hoping that our home care team will be able to arrange a new machine for us before we return the reportedly faulty machine.

Intensivists

Today we went to have a consultation with two Intensivists and a home care nurse at the hospital. We are still happy to proceed with the CPAP at home even though it does make for very interrupted sleep.

We also talked about the possibility of facial deformity because of the CPAP straps and discussed attempting to use a different type of mask that reduces the pressure. We are planning to try to fit this mask on Sunday night.

Turning CPAP back down again

Raphael has finally been deemed well enough to have his CPAP turned back down from 9.0 to 8.0. A home care nurse came to do the honours for us tonight and Raphael slept though the minor adjustment without a stir. He is still happily sleeping now with blood oxygen saturations between 97-99%.

I am hoping that tonight will be better than last night, which woke me up nine times from various alarms going off.

No alarms last night

Wow, we had a whole nights sleep last night with no alarms; except for when the overnight NGT feed finished and when our other sick kids got up and needed attention in the early morning.

This is the first full nights sleep that we have had with no CPAP or O2 alarm since we started with the CPAP.

Intensivist followup

This afternoon we went to have a follow up with the intensivist who fitted Raphael's CPAP mask.

We mentioned that our biggest problem was that the alarms go off at night and wake us up. He reminded us that this was not going to be a picnic but then offered to arrange a new massimo(sp?) monitor for us that is less likely to alarm erroneously. We will have to wait for quite a few weeks before this can be arranged, unless we had a spare $8,000 to buy one for ourselves.

One of the home care nurses was at the consultation and as the intensivist was was leaving shortly to catch a plane, and would be away for a few weeks, he asked the nurse to arrange the equipment for us. The look of "this is impossible" crossed her face and the two exchanged a few words about who to speak to to get this done. By the end I think that the poor nurse still felt that it was a monumental task.

Later that night the home care nurse dropped off a new mask for us becuase the old one has a small split in the nose cushion that is starting to widen. But unfortunately it was the wrong mask. The device that she brought was actually connected to the sort of hat that we were using and so this is where the confusion must have happened. The current mask still works so we will keep using that one until the replacement arrives. The nurse also adjusted the CPAP level back down to 8.0. It was raised to 9.0 when he had his last cold but since he is getting over it the intensivist advised lowering it back down again.

Bronchiolitis

Home care nurse visited again this morning to check up on Raphael. She is concerned about him and thinks that he is a borderline case of needing oxygen overnight tonight because of his respiratory difficulties. We are not equipped at home to supply oxygen to Raphael with his CPAP so he would have to go to hospital if he needed this.

We put him down for a morning sleep with his CPAP machine and agreed to take him into the ward tomorrow for a Paediatric resident to check him. I personally didn't think that he needed to go to hospital but I was not going to reject the advice.

He slept very well with the CPAP and I took him in after he woke up. I believe that the resident was a bit overwhelmed by Raphael's condition. Raphael always appears to be in slight respiratory distress, even when he is well, so it is hard for doctors to decide whether he needs close monitoring in hospital. In the hospital his temperature was measured as 37.5 and it was noted that he had more respiratory distress than normal but was well hydrated. The resident called the on-call paediatric consultant, who just so happened to be our paediatrician, and returned to us with the same opinion. Everyone agreed that he is a borderline case for hospitalisation.

This places the decision on us and so I brought him back home with the advice to bring him into emergency if we think he heeds to be hospitalised.

Stupid machines!

Last night a home care nurse visited to see if anything could be done about the pressure sores that Raphael has been getting on his forehead from the CPAP mask.

Fortunately when she was visiting she also noticed some of the problems that we had been having with the oxygen monitor. She ended up going to get another one and taking the faulty one away.

Last night was not a good night in terms of alarms. Even with the new Oxygen monitor the alarms came thick and fast from the machine last night. Raphael is sick with a cold but was not having bad desaturations; he was coughing a lot which caused him to move which, in turn, resulted in faulty readings for the Oxygen monitor.

At about 3:00am we gave him some infant cough medicine (Demazin). We also turned him onto his other side and within thirty minutes his saturation monitor showed better readings and he did not wake up for the rest of the night.

While we were having problems with the probes at night we tried something new. Rather than move a probe when it was causing problems, we simply added another one to another foot or hand and connected it to the machine to see if the new location would be any better. In the morning I discovered the problem to this approach: Raphael had manage to tightly bind his feet together and was working on tying his hand probe tail to the NGT chord. It took me ages to get him untangled and at one point I too managed to connect myself to the octopus of chords and Elastoplast tape.

Help from a home care nurse

It was extremely helpful having the home care nurse come tonight. She dropped off a replacement suction pump and a bunch of equipment manuals. She further helped us by:

• Inserting a new NGT for Raphael.
• Going through resuscitation with us again on an infant dummy; better than the adolescent one that we practised on before.
• Explaining to us how best to clean the CPAP equipment
• Talking about how best to manage Dr appointments while being an inpatient
• Talking about how to deal with being an outpatient and having appointments close together.
• Offering to help consolidate appointments to be closer together rather than have them spread over an awkward amount of time
  

"The elephant is dancing"

Our code phrase to indicate that Raphael is awake

Oxygen probe showing poor saturation

Last night we had problems with the blood oxygen saturation monitoring machine. It kept on showing results that were clearly too low for what was actually going on with Raphael. We tried a few things:

1. We tried retaping the probe to his foot a few times. If anything this seemed to make the problem worse. At one stage it was showing a "reliable" signal but only reporting a O2 level of 15%.
2. We tried using an old probe. This was even worse, at one stage reporting as low as 3%.
3. We tried reseating his mask again but this had no effect.
   
4. We then attached a brand new probe but this still showed saturations dropping as low as 60%.
5. Eventually the computer techie side of me took over and I checked all cables only to notice that the machine end of the probe cable was loose.

Finally after reseating this cable everything sprang back to normal, well nearly normal anyway. It only showed 92% O2 level which isn't great but it was good enough for us to call it a success and we finally got to sleep at around 12:30.

Last night CPAP

Last night at about 10:30 Raphael's oxygen sensor alarmed and we witnessed the desaturation spike as low as 77%.

Unsure what was causing the problem we called a home care nurse who advised us to try suctioning him and also changing his Oxygen sensor probe (in case there was something wrong with the one we were using).

During the process we noticed that one of the air out-flow ports from the mask had become blocked with a dry goober and so we cleared the hole with a skewer and wiped out the mask. Suctioning did not get anything out of him but after we had put everything back on again we did not have any more problems for the whole night.

The nurse called again a short time later to see if we needed her to come but we were sure we were fine; gee they are dedicated!