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.

Sick again

We called a home care nurse out today because Raphael has a bad cough and sure enough later in the day when the nurse arrives his temperature had risen.

Fortunately his breathing is still ok so we wont need to goto hospital... yet...

Home care nurse project review

Today we attended a meeting to talk with the hospital about the home care nursing. This was an important meeting with a few families and hospital staff involved with the home care nursing team. The goal was to gather information to achieve a permanent home care nursing programme for high needs children.

Quick visit from a new home care nurse

We had a quick visit from one of the new home care nurses just to check up on Raphael. It was nice to meet someone from the new team.

High temperature, vomiting and a little surprise

Last night at 10:30 Raphael became extremely restless while sleeping and it turned out he had a fever (39 degrees).

we gave him some panadol and he was so thirsty that we gave him some hydralite but after only 15ml of the hydralite he vomited everything up. We wanted to give him another dose of panadol because he had ejected it all but we weren't sure if it was safe, we didn't want to overdose him on paracetamol.

To find out if it is ok to give another dose if the first one is vomited out we called the new home care nursing team but we knew that they closed well before 10:30 and so we weren't surprised when there was no answer. We then called the 24 hour doctor telephone service available in Hobart. This was the first time that we had called this service for Raphael and after the nurse gathered some information from us over the phone, she asked us if we wanted an ambulance or to take him into the hospital emergency room. We didn't think that he needed to go to the hospital but this is the usual reaction for medical professionals who hear/see Raphael when he is a little sick. After getting a very brief medical summary, she referred us to a doctor and he told us that it would be ok to give Raphael another dose of panadol if he had vomited the previous dose out within 25-30 minutes of it being given.

He said that it was "refreshing to hear" when we said that we didn't want to bring Raphael into hospital whenever he is sick or we would be going there every week. From looking at him this time though I quietly thought that we might end up bringing him into hospital later that night; he had slight respiratory distress and he oxygen saturations were 90-91 when on CPAP instead of his normal high 90s. If he got any worse then I was going to bring him in. The previous night I was woken up 5 times by Raphael. I needed sleep but it didn't look like I was going to get much sleep that last night either so I mentally prepared myself for another sleepless night in the emergency room. I got to sleep at about 12:30 after monitoring him for a while and he woke up at 5:30. That was much better than I expected.

He is bright as a button now and this morning while watching me prepare his breakfast he even said and signed "more" without any prompting from me. His nose is runnier than normal but I don't think that we will be taking him to the emergency room today.

Crazy heart beat

Yesterday we took Raphael to his GP and she confirmed, just as the home care nurse had said the previous day, that this was viral and could be the nasty Influenza that has been going around. We were hoping that he would not get this because he is too young to have had the Influenza vaccination and we knew that it would effect him hard. On the good side, the GP was very happy with how his lungs were sounding.

Last night at 2:30 am his heart rate raised realy high (because of his high temperature). When it past 170 beats per minute his monitor alarm went off and I grogily raised the threshold to 200, when he started to scream and his heart rate past 200 I fought off my deep sleep to see that it peaked at 224 before I disconnected his monitor and CPAP to pick him up.

It was like cuddling a boiling kettle; he was steamy hot and his racing little heart was boiling in his chest. I gave him some Panadol and some hydrolite (becuase he has really thirsty too) and eventually I was able to put him back to bed.

Sick and hot

We measured his temperature as 38.4c on two occasions today. Panandol made him feel a lot better on both occasions but his fluid intake is well down today. His home care nurse visited and she recommended that we give him some gastrolyte to re-hydrate him a bit becuase he would not drink water or his Nutrini (formula). He is not dehydrated yet but of course we don't want him to become that way so I went to the chemist and bought some Hydralyte (which is a re-hydration fluid like gastrolyte). He was happy to take 60ml of that from a 20ml syringe.

Still sick

After a number of evening with high temepratures and a few visits from the home care nurses, I took Raphael to see a GP today. Although his ears were ok, a throat examination showed a pussy adenoiditis. He is on antibiotics now and the good news is that although we don't have the NGT to give him the medicine, he is willing to take it by mouth with no problems.

I assume that this is on top of his cold that his his two siblings and I also have, so even if the antibiotics fix his adenoids, he will still be miserable.

How much does he weigh now? (10.2kg)

I didn't have much hope for Raphael's weight gain today because he has been grumpy and a bit off his food and last night a home care nurse visited and we took his temperature at 38.6.

But today I was surprised by the weighing. His blanket had lost 20 grams and was only 450g but he had gained a little weight and now weighs 10.2kg, that's a 60g increase.

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.

Weight gain, development and another cold (10.22kg)

This morning I excitedly pushed Raphael in his pram to the local doctor surgery to weigh him again. Over the last seven days he has taken an average of well over 500ml by mouth (of mostly Nutrini high energy multi fibre) each day. This is only 50ml per day less than his total intake when we were using the overnight NGT feeds so I was confident that he would have put on quite a bit of weight.

I stripped his clothes off like last time to weigh him but this was not very popular this time. Maybe it had something to do with the weather (it was freezing cold). I carefully weighed him, and the blanket that he was sitting on, and then came up with his total weight being 10.22kg. That is 80g less than last time . I can't explain why he has not put on weight considering how much he has eaten! Because he was so distressed, being naked on the scales, I clothed him and balanced him back on the scales to take this photo of him.

On the up side, while we were at our first aid course at early learning today Raphael "cruised" by himself without anyone's hand to hold onto. He did need some encouragement from his mean dad who kept on taking his toys away from him and putting them out of his reach; forcing him to cruise to the toys.

While he has been sleeping, his breathing has been poor over the last day and a half. He seems to be very congested. At the moment his saturations are only 90% and we are waiting for the home care nurse to arrive tonight to have a look at him and possible raise his CPAP to a higher level.

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.

Oh no, high temperature again

After Raphael's snooze yesterday he woke up very groggy, he slumped in my arms all afternoon and evening. We took his temperature at 39.1 degrees and so we called the home care nurse. She came to have a look at him and after further consultation with an intensivist we gave him some Paracetamol and waited till the morning.

Last night was the best night's sleep that we have had in a very long time there were no alarms (apart from the morning NGT of course) and his saturations were 97%-100% all night. He woke up in the morning back to his usual self.

The home care nurse came again to check him out in the morning and after measuring no significant temperature she took a nasal secretion specimen from him for analysis. We expect the results to be available in a couple of days.

DEM

Our home care nurse arranged the emergency department so that we only had to wait for an hour before Raphael was seen. After the registrar had a poke and prode, she ordered oxygen for him and arranged an xray and a bed on the ward tonight.

Making appointments is always very difficult because we have so many of them and it is impossible for us to be able to remember when we are free. So I bought my wife a new PDA phone to give her access to her calendar wherever she goes. Today I am passing time in DEM (Department of Emergency Medicine) by writing this blog entry on it. I am beginning to wonder whether I bought this phone for my wife or myself.

Back to hospital

Raphael had a high temperature last night and today he has also become grumpy along with maintaining his high temperature. A home care nurse spoke with an intensivist who has advised us to come into the hospital.

So as I type, Annie is driving Raphael to the hospital and I will walk down from work to meet them there in a few minutes.

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.

Higher temperature

last night a home care nurse visited us again to check on Raphael's progress. His temperature had risen to 39 and he was quite placid. Normally when he has high temperature he is grumpy. Being a little concerned, the nurse contacted our paediatrician again and she sat with Raphael while he slept for an hour to make sure that he was going to be ok at night.

He was fine all last night and the only equipment alarm that went off was the NGT pump which just an easily fixed kink in the tube that stopping the flow at one point.

Without this fabulous service and care from the home care team we would probably have had to admit Raphael to hospital last night so I am very grateful to the people that make this service possible.

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.