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.

Adenotonsilectomy

Raphael was admitted to hospital on Thursday 3/7/2008 to have the adenotonsilectomy surgery on Friday.

Thursday night I received a concerned call from a anaesthetist registrar who went to check on Raphael saying that he sounded like he had a severe respiratory infection and that it might not be safe to proceed with the surgery. But after I explained his normal state she understood that this was as good as he ever got. His normal anaesthetist also had a look at him that night and agreed that this was as good a time as any.



Friday surgery went smoothly and he was in NPICU (Neonate and Paediatric Intensive Care Unit) within three hours. He was very dopey coming out of his General anaesthetic with morphine, as would be expected. But after a nap and waking up in the evening, he set about his work charming the nurses in the ICU. Because of his risk factors he was kept in ICU overnight but he was in very good condition.

The next day he was moved to the Paediatric ward and we found out later that the nurse handing him over said that she had fallen in love with Raphael and it was so nice to actually be a nurse to a person rather than to machines (which is what ICU nursing is normally about).

The ENT surgeon gave us a quick run down on how the surgery went (adenotonsilectomy and laryngoscopy) and the only thing that we were worried about was that his right ear had some blood in it. (The last time his left ear came back from surgery with blood in it he lost 50db of hearing in that ear).

Sunday morning 6/7/2008 he was discharged and he was very happy to come home again.

Raphael is out of hospital again

Not much more to say.

Raphael in hospital again

On Monday lunch time we got our mail. One was from the Royal Hobart Hospital saying that Raphael is scheduled to have his operation on the 4th of July. This was a reschedule because last time he was hospitalised with a pneumonia instead of having the surgery.

Raphael must have read the letter and decided to get sick again. Annie took him to hospital on Monday night... another 3 and half hours waiting in the department of emergency medicine (DEM). Near midnight Raphael was finally admitted to hospital because of sustained high temperatures that could not be explained.

in hospital again

Raphael went in to have his pre-assessment on 8/5/2008 for his upcoming adenotonsillectomy but as he was getting quite sick we took him around to the PACU area to squeeze in to see a doctor to see what they thought about him. Shipping him back and forth between PACU and the pre-assessment area when doctors were ready to see him filled our day.

I felt a bit guilty about turning up to the packed clinic times with people over flowing in the waiting area only to push in line to see the poor overworked registrar. When I told the registrar that I suspected that an x-ray will probably reveal a pneumonia she said "I think that you should really present to DEM (Eepartment of Emergency Medicine)". I responded with a cheeky "Yes but that will take us ages and you are supposed to make special exceptions for people like us (with complicated children)". She took pity and organised a queue jumping x-ray for us which of course revealed a pneumonia.

This wrecked his chances of having the adenotonsillectomy surgery any time soon and instead landed him in hospital for observation for a couple of days. He was discharged on 10/5/2008.

Finally out of hospital

Yay, finally out of hospital today with oral antibiotics and an iron supliment. Apparently he has low iron.

Admitted to hospital with pneumonia

Yesterday Raphael didn't eat anything and didn't drink much all day and vomited what he drank. He hasn't been eating anything for a week now and he has been drinking less and less of his formula each day so yesterday when he had practically nothing I thought I should call the paediatric ward and ask them what I should be looking for with dehydration. The head nurse went to ask the registrar and came back with the asnwer "bring him in to DEM (Department of Emergency Medicine) so that the registrar can have a look at him". I wasn't very happy about this, but when I pushed for my original question to be answered the nurse did not respond well so I brought Raphael into Emergency in the hospital.

On arrival to DEM we noticed that it was quite busy. There was a person waiting in front of us with a bucket. She was obviously very unwell and just in case she was contagious, I moved Raphael's pram around to face the other way away from her. At that moment another guy came into emergency, also carrying a bucket. I shuffled Raphael's pram away from him too but became quite sandwiched between these two sick people. After going through the triage desk I was asked to sit in the priority seats but one look at them saw little space between even more people I was beginning to think that I had taken Raphael into hospital just so he could catch another vomiting disease. I sat a short distance away from "vomit row" and sadistically amused myself by noticing that when one of the poor soles vomited others joined in the chorus.

After only 1.5 hours we saw the registrar and his examination showed that Raphael was only mildly dehydrated and he could go home and stay home if his intake improved tomorrow. Before we left though he wanted Raphael to have an x-ray just to make sure that Raphael didn't have a pneumonia. Well and you know the result of this already... he had pneumonia.

Raphael stayed in last night and he was a little better today, they suspect viral pneumonia but are giving him oral antibiotics as a "just in case" measure. He will probably be in for a few days so they can monitor his condition.

Discharged

Raphael was fine last night and he was discharged this morning. We took him home and will go back later in the day to pick up his prescription of Amoxycillin and Prednisolone.

Endocrinologist, dietician, paediatrician and hospitalisation

Raphael had his first endocrinologist appointment today. There were no surprises, but it is good for us to hear from the specialist. We will have a thyroid blood test at some time but this is not urgent.

While we were waiting for the the endocrinologist we managed to see Raphael's dietician and we were able to adjust his feeding script that we receive from the hospital to reduce the amount of Nutrini and increase the amount of solids fortification (PediaSure).

Raphael had lots of coughing yesterday afternoon so while we were in the clinic we also asked to see a paediatrician to just check his lungs and make sure that he was ok. He had a temperature of 40.9c! He didn't seem to be that sick to look at him but apparently he was cooking inside.

The paediatric registrar had a look at him and his lungs sounded clear, which is good, but his tonsils were really swollen. Any other child would have been sent home but because he is complicated the registrar phoned Raphael's regular paediatrician and when she came in to have a look at him, she ordered him to the ward for the night. His tonsils were so swollen that she was concerned that may exacerbate his sleep apnoea and so wanted him to be constantly monitored overnight.

He was written a script for Penicillin (to treat any possible bacterial tonsillitis infection) and Prednisolone (to reduce the swelling of his tonsils). Of all the drugs in the world I would have thought that penicillin was probably the most well known, well maybe apart from Viagra. But the hospital didn't have any Penicillin. Isn't that kind of like the cheese shop sketch? Oh well the doctors said that Amoxycillin would be fine in this instance and so he was given that instead.

Free again

Raphael's regular paediatrician discharged him today so I finally have him at home. He had me worried for a little bit when he coughed and coughed for several minutes. But finally he managed to expel a small flood of mucus and then he was happy again

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.

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.

Out of hospital

Raphael has finally escaped from hospital today. We have a course of antibiotics to give to him over then next five days.

In hospital again

Raphael had a hard night on Thursday 31/5. He coughed up mucus into his CPAP mask and we think that he may have inhaled some back into his lungs. He didn't have a temperature but he was starting to cough, reminding us of previous times when we had to admit him to hospital. After taking the mask off and putting him on his stomach he coughed up a lot more mucus. Annie and I couldn't agree on whether to refit his mask again and so we called on a home care nurse again. The nurse visited us and had a listen for any problems in his lungs and we eventually refitted his mask. The rest of the night was generally uneventful (apart from a few "high leak" mask alarms)

Early Friday morning (1/6) we called on the home care nurse again because we found that Raphael had a high temperature. Sure enough we packed up and went into hospital again and dumped our other kids on one of our baby sitters. He was inspected by a doctor and a chest x-ray and blood was taken. The verdict was that Raphael probably just has a viral infection that isn't causing pneumonia yet but given his history, and condition, it would be wise to admit him over night to monitor him if he gets worse.

Our paediatrician was on the paediatric ward and so we managed to ask her our two burning questions about the surgery coming up on the 12/6 (it has been brought forward from the 14/6). We wanted to know what people can eat after having fundoplications and we wanted to make sure that our preferred anaesthetist was going to be able to perform the anaesthesia on the modified surgical date. Her answers put our minds at rest and we are all ready to proceed with the surgery on 12th of June.

Later that day a registrar tried unsuccessfully to insert an intravenous line to give him antibiotics (just in case). Eventually he was given an injection into his muscle to slowly release antibiotics over a period of twenty four hours. Apparently this is much more painful for the child and so it is blended with a local anaesthetic to make the pain go away quickly. The irony is that the anaesthetic causes more pain while the injection is being given.

Finally escaped from hospital

Raphael is finally home. We have been issued with three machines that go ping, an oxygen cylinder, sticky things, slippery things and enough plastic tubing to pump gas into and out of every house in our street. We are still waiting on the suction machine to be delivered though.

The night before last we tried a prototype headpiece but this did not work very well as it kept on slipping down. Last nights CPAP was very good, we finally had a customised five strap headpiece that fitted well and did not slip off at night when he moved around. At one point he even got up and crawled around the cot. He knocked off some of his sensors (sticky things) but the mask stayed on and maintained a good seal the whole time.

Over the last two nights they also measured his CO2 levels. The first nights results were ambiguous but the second nights results encouragingly showed no CO2 build up.

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.

An informative day in the hospital

Our paediatrician talked to me this morning. All the relevant consultants now agree that it is a good idea to proceed with inserting a g-tube and performing a fundoplication. We have a tentative date booked in three weeks for the operation but this is dependant on there being an intensive care bed available after the procedure.

I also finally managed to get copy of a stack of reports that I was missing. The consultants are generally too busy to chase down reports so the best thing to do is to ask a nurse (or intern/resident/registrar) to get copies of all the reports ready for the consultant so all the consultant has to do is say "give the reports to them".

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.