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.

Paediatrician and paediatric intensivist

Raphael weighed in at 10.97kg today. This is a good result! His head circumference is big but he is still very short.

He was a little sick and so the paed gave us a script for antibiotics. She reassured us that his vomit in CPAP two days ago doesn't appeared to have had any detrimental effect on him.

We also talked about our concern over Raphael's speech and she gave us some ideas on avenues we could go down to ultimately improve his communication.

After the consualtion we ran into one of Raphael's intensive care consultants and we had a brief chat about his mask getting to small for him. She kindly went and got a batch of masks that were around his size but there wasn't one that was going to fit him. She said that she would contact her interstate colleagues and see if there was anything that might fit Raphael. In the mean time she gave us a maks that we can attack with some scissors to try to get it to fit.

Intensivist consultation

We had an intensivist consultation today straight after discharge to talk about CPAP settings, adenotonsilectomy and future possible sleep study.

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.

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.

Nearly escaped from hospital

A paediatrician came around in the morning and was satisfied to send us home in the afternoon after another dose of IV antibiotics. But before midday one of our paediatric intensivists came to see us and said that she was not happy about Raphael going home today and that she wanted him to have close observation tonight. She wanted him to have a night in hospital without any oxygen before sending him home.

Because he has had a spiking temperature over the past few weeks, she is concerned that he will be back again in another couple of days unless they do everything that can be done in the hospital. So he is stuck in the hospital again at least for tonight.

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.

Yesterday, what a day!

Yesterday started with my wife waking up with a moderate allergic reaction. So I:

• Rushed my daughter off to school leaving my wife next to the phone with strict instruction to call 000 if she started to have any problems with breathing.
  
• Rushed onto hospital to pick up Raphael
• Realised that he didn't have his hearing aid and so rushed back home to pick up his hearing aid
• Zoomed down to Early Learning Tasmania where he got some one-on-one work with physiotherapists. The next lot of gross motor practice for him will be to practice getting down from standing (that is standing while holding onto something). In general they said that although he is still a little behind in his gross motor skills, he should not be doing more at this stage anyway because of his other impairments.
  
• Flew back home so Raphael could have a sleep before his Australian Hearing appointment (to get new hearing aid molds).
• Received a phone call saying that the molds weren't ready yet (phew, that gives me an hour break)
• Took Raphael along to a parent teacher interview (for our elder daughter)
• Rocketed back to hospital to meet with a orthoticist(?) (someone who practices orthotics) and occupational therapist to see what they might be able to do about sorting out a customised hat to secure the CPAP on Raphael at night.
• Immediately afterwards we met with intensivist and paediatric home care nurse about arranging necessary equipment that we will need to have at home to maintain the CPAP on Raphael. One extra piece of information that came out of here is that it is not the air pressure that causes gradual facial squashing but rather the pressure of the straps that hold the mask on. Another interesting point was that the intensivist was going to alert the ambulance service that if we call about Raphael needing emergency transportation, then we really do need it. I imagine that there is some kind of list of people that we have been added to, titled These people aren't kidding if they call.
  
• Drove to an extended family dinner at my parents place, stopping at a bunch of shops to buy supplies along the way. While at this event Raphael learned a new Auslan sign: "applause". He would raise his hands in the air and, in response, the rest of the family shook their hands in the air accompanied by a "yay", eventually he got the idea of vocalising as well and he would raise his hands, take a deep breath and say "aaaaa" with a big grin on his face. (photo courtesy of my mum).
  
• Finally after saying a long goodbye to some relatives who were going back to the mainland, we zipped back home for me to pick up my work clothes and then I went to the hospital to fit Raphael's CPAP mask and sleep next to him in order to gain experience with fixing any problems that might occur overnight.

Last nights CPAP experience was pretty good with the new blue gel mask. This blue gel mask had a ridiculous clear membrane on the inside that was frequently blocking Raphael's nose (that was until I attacked it with a pair of scissors the night before last), it is much better now. Once the mask was on and strapped down it only took half a minute before he was fast asleep. The headpiece needed to be adjusted four or five times last night but apart from that there were no problems. I am looking forward to getting the custom made headpiece when it is completed.

I got about four hours of interrupted sleep last night in the hospital. I am looking forward to tonight when it is my wife's shift in the hospital and I get to crash at home in a nice comfy bed instead of an armchair recliner that can't be made flat.

Still in hospital

Yesterday we saw a paediatric surgeon about the possibility of performing a laparotomic (open) G-tube insertion and fundoplication.

The ENT registrar also visited to ask about the mysterious neck which had been ordered for Raphael. Like us, they seem to be unsure why this has been ordered. I actually think that there was a miscommunication somewhere and that it was supposed to be ordered for our other son Zachariah. He also commented that the CT scan showed some evidence of congenital cholesteatoma but he probably does not have this. It will continue be monitored and we will talk more about this at the next ENT consultation.

We attempted to connect for his afternoon sleep but he would not tolerate it again. It seems at though we are not going to have any success with his afternoon sleeps. I was exhausted and so I went home to sleep and while I was out I missed our paediatrician who came around to see us (rats).

Last nights CPAP was good. The intensivist made some adjustment to the mask by hacking at it with a pair of scissors becuase she said that it was probably the mask blocking his nose that was causing the unknown desaturations the previous night. He woke up four or five times last night, panicking with the air flow across his face but had no desaturations. His blood oxygen saturation level was consistently around 97%. They said that they will not send us home with this mask because it is not safe now. They have tried three masks so far but they will keep trying to find better ones.

The intensivist has increased the CPAP level to 9CWP (centimetres of water pressure). This seems to be enough to overcome his obstructive snore. This level of pressure is getting up to the level where we start to have to monitor his facial development. High levels of CPAP can push the front facial bones back during growth. The intensivist is interested to know how much the NGT is effecting the efficiency of the CPAP. We may have to do further adjustment of pressure after the NGT is replaced with a G-tube. This is what his profile looks like now

First attempts with CPAP

Yesterday after his Gymbaroo and Australian Hearing appointment (to get new moulds made) we rushed back to hospital to try his CPAP at 3:00pm. The intensivist tried a couple of different masks but Raphael was in a fighting mood and so this first attempt was abandoned.

At 9:00pm we tried again, we had a new headpiece (a nice soft one) and even though we had an initial struggle to get it on him he finally went to sleep with it on. All seemed good for the first hour but after that he would "desat" (blood oxygen level would drop) periodically with no apparent reason. This seemed to happen more when he was on his back or right hand side.

During his sleep he would occasionally move and the mask would slip a little. This resulted in air escaping and blowing across his face. This made him panic and struggle making the leak worse. This meant that I didn't get much sleep last night.

Still in hospital

Raphael is still on oxygen when sleeping otherwise his oxygen level maxes out at 85% and drops to the mid to low 70's frequently. The paediatricians say that they want him to be above 90-92%.

Early today we had a visit from a paediatric surgeon resident to have a quick chat about having a G-tube surgically placed via a laparotomy and also possibly performing a fundoplication. This initial consultation was mostly fact finding for the paediatric surgeon with some very basic information for us.

At 2:30 pm a session was arranged to give me an introduction to CPAP (Continuous Positive Air Pressure) and how we are going to introduce it to Raphael in the hope that it will overcome his obstructive sleep apnoeas. One thing which really stuck in my mind was when they said that applying CPAP for a child is a life altering decision becuase of the large amount of work involved in maintaining it at night through the alarms and potential issues that itself can cause. The meeting had our paediatrician, two intensivist consultants (intensive care doctors) and two home care nurses who are going to help us maintain this system long term.

Unfortunately (or one could argue fortunately) some of the equipment that was set aside for Raphael's CPAP was intercepted in an emergency for another child so we were not able to start CPAP on Raphael tonight. They pointed out that although CPAP is used widely, it is very difficult to find a mask that fits an infant well becuase the major market for these sorts of devices is for "fat men who drink too much".

We are planning to start the CPAP tomorrow at 3:00pm during Raphael's afternoon sleep.

Marathon paediatrician effort

We spent well over an hour and a half with Raphael's paediatrician today and also spent some time with an intensive care consultant (intensivist) discussing Raphael's need for some intervention regarding his sleep apnoea.

After Raphael's simple sleep study, his ENT examined his adenoids and tonsils but didn't find that they were obstructive and therefore would be no benefit in having them removed. Because of this, the next step is to admit Raphael to hospital on Monday for some days for all of us to get used to operating a CPAP (Constant Positive Air Pressure) machine while he sleeps.

As usual with long consultations, I will need to go over the recording that we made to pull out all of the information and to make the list of topics covered.