Paediatrician, no-NGT review

We had a review with our paediatrician and dietician today. We brought in our ever growing list of topics that we have questions about but after more than an hour we had still only covered one topic - how he is going without his NGT.

Even though he has lost a small amount of weight, his consumption hasn't been that bad. This mixed with Raphael seeming to be very active over the last fortnight has lead our paediatrician to say that she is pleasantly surprised that he has done so well so far and is happy for us to continue the trial.

We are also planning to start to add more energy rich solids/purée to his diet in an attempt to start to introduce more variety.

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.

Trialling without NGT (10.3kg)

This week we are trialling Raphael without the NGT to see if he still needs the night time feeds. Our paediatrician said that she doesn't think that our trial will be successful but understands that we want to try before committing Raphael to surgery to have a G-tube inserted.

Raphael did not have an NGT feed last night and after his morning milk drink (of 115ml) we took him to our local doctor surgery and weighed him at 10.3kg (bare weight).

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.

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
  

Another tube out

I went to get Raphael up after his afternoon nap only to find that he had managed to soak the tube tape loose with his secretions and then cough the tube out half way.

I pulled it out the rest of the way (rather than risk reinserting it) as I know we have a home care nurse coming tonight who can put a new one in.

Another new way to extract an NGT

Well this one was a ripper.

I was in the middle of taking a few opportunistic photos of my family on a relaxing Saturday morning when Raphael started to cough. After three decent goes at coughing he started to turn the tell tale red of pending up-chuck.

I carefully threw the camera onto a couch and grabbed the nearest chuck cloth. lunging in front of him, I was just in time to catch the unpleasant contents of his stomach as it heaved out of his mouth. But something was different. Apart from the different type of thick lumpy vomit that the Nutrini causes (rather than the Infantrini), there was something else wrong. The NGT tube had formed a loop, I have seen this before when he has managed to vomit the tube out his nose so I grabbed the loop and intended on pulling the tube all the way out. This did not work exactly to plan. Somehow I ended up with the tube still securely taped to his face and the stomach end poking out his mouth. Argh, he had managed to vomit the tube out of his mouth, not his nose.

After cleaning him up we pulled the tube all the way out of his nose. Fortunately the home care nurses have previously offered to come to reinsert Raphael's NGT to save us going to the hospital should he pull it out again. So I have called them and I am now waiting for someone to come to fix him up again.

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

Next day in hospital

Last night Raphael spiked up to 40 degrees but Paracetamol helped a lot. During the morning his temperature rose above 38 a couple more times in the morning but Nurofen and more Paracetamol helped keep this under control.

Unfortunately we weren't there for part of the day to manage the taping of his NGT. This gave him the opportunity to pull out his NGT... twice. In desperation the nurses resorted to making a little boxing glove for one of his hands to stop him from pulling out the tube a third time in one day. He had actually kept his tube in for a record five weeks before pulling it out twice today; one more week and it would have been actually due for a change.

He is still not eating much and still coughing a bit but it was good to see that his temperature stayed normal all afternoon.

Yet another NGT

Raphael extracted his NGT again this evening. After his evening oral milk feed he rolled over to play and after a very short time stated to vomit out everything that he had drunk. I was too slow to catch this one with a chuck cloth, but fortunately it was caught by the blanket that we have laid on the ground to catch just such an occurrence.

One of his expulsions pushed out part of the tube. In the heat of the moment I was in two minds as to whether it was still in far enough for me to push it back in again. My indecision gave him the chance to reach up and he tugged it out further. That became the deciding factor and I pulled the rest of the tube out.

If he would have managed to hold onto the tube for just two more weeks then he might not have had to have another one fitted. We have tentatively got a surgery date to have a G-tube fitted (along with CT scan, grommets, and ABR) in two weeks time - more on that later, as we are not exactly sure what is going on with that yet.

Another dodgy plug on the NGT

Argh, this is the second NGT tube that we have had where the plug has come loose by itself. you might have notice that it has been over a week since he has had the tube replaced so we thought we were doing well; and then this happens.

A loose plug manifests itself in an devious way. The first sign that you might get is when you pick him up you might put your hand in a gooey slimy patch of vomit on his clothes, becuase this isn't that uncommon anyway we just change him and continue on our merry way until we find yet another vomit patch somewhere in a very short time. After another change of clothes we realise that his new change of clothes is already contaminated. That is when the alarm bells ring and we look for the offending plug. Sure enough when plugging it back in again it just slips straight back out again and the smelly part digested contents of his stomach start to leak out once again.

My wife has discovered that to perform a temporary fix we just need to snip of a plug from an old NGT and plug up the hole with it. And then do a load of washing.

The first photo shows the unplugged tube and the extra piece that we used from a previous tube. The second photo shows the extra piece plugged in, making the normal yellow plug redundant.

You might also be able to see dust stuck to the outside of the tube. This is just because it gets sticky-tape residue on it from where we tape the tube to his clothes during the day.

Grand up-chuck

Did I mention that he also threw up/out his NGT aswell?

We were a bit rushed between appointments and when we got home I fed him a pot of custard too soon after he guzzled down all that hot milk when we were trying to get him to sleep for the ABR. Poor lad, he doesn't know when to stop when it comes to eating solids after he has had milk. You'd have thought that I would have learnt though!

So now I have two more chuck cloths soaking in a bucket of water. If you have been to our house and wondered what all the white towelling nappies are doing draped over various objects or just lying on the floor, now you know. There must always be one in reach for whenever we hear the warning sign of an imminent eruption.

Woosh, there goes another NGT

I wonder how much these NGT tubes cost. They don't cost us anything except for about an hour of our time to get them fitted again.

The rostered head nurse greeted me kindly at the paediatric ward. She is always good fun and she is excellent at placing the tubes. She looked at my detubed son and said, "he is easy to place the tubes in isn't he".

So I looked at her quizzically and said "you mean apart from the aspiration, blockages and vomiting that usually happens with it don't you?". She hadn't had a problem doing him in the past so that came as a bit of a surprise to her. I praised her past skill in tubing him and so she did his tube again. This time and it went pretty smoothly, as smoothly as it can go anyway.

The woes of last night

Last night was a pretty poor night.

Raphael coughed incessantly; Annie was very tired and had to work today so she abandoned me early in the night to look after him and went to sleep in the living room.

He can make the most horrific coughing sounds. They can sound like he is vomiting (complete with squelching fluid sounds) which makes it really hard to know whether I need to get up or not. Of course both Annie and I usually both wake up when he makes this particular sound but we both pretend to sleep to see if the other is going to deal with the situation. I usually win at this pretending to sleep game but of course tonight Annie wasn't there so I had to deal with it.

At one stage I thought I heard him vomit so I dragged my "pretending to sleep" body out of the bed to check on him only to find that he was "crossing the river" (Crossing the river is a Chinese saying that we use to describe a flow of snot that has passed the mouth). But he wasn't just crossing the river, he was crossing a waterfall, a big waterfall, a waterfall of massive ectoplasmic proportions that would have sent shivers down the spine of any self respecting ghost buster. So after mopping him with a box of tissues, I went back to sleep. Well, I went back to pretending to sleep anyway - because of course this did not stop him from coughing for the rest of the night.

The following morning I stopped his pump and went to do my morning business only to find that in the two minutes of me leaving the room he has managed to rip his tube out again. This time he managed to leave the tape perfectly in place. He had managed to moisten up the tape so much that it just wasn't sticky any more. You can see how much tape we put on him; Annie and I thought we had found a fool proof system to prevent him from detubing himself. Of course the master detuber found yet another way to foil our attempt (Raphael: 12, Mum and Dad: 0).

The tubes that are in him are called long term NGTs. They are supposed to last a month before needing to be replaced. The longest he has kept one in for was three weeks, but then he detubed himself three times in the following week to make up for it.

Half detubing

Raphael vomited his tube half out this evening but fortunately both of us were there and ready for the vomit (we heard the warning signs). Because both of us were there we took it in turns to hold his arms and his "chuck cloth" while the other gently pushed his slimy, vomit covered NGT back into his nose until it was seated in place again.

Another detubing

Over time, Annie and I have developed are more and more complicated system for taping down Raphael's NGT to his face to prevent him from finding a way to pull it out. Today he used a technique to get rid of the tube that he has only used once before. He vomited with such force that he expelled the tube nearly completely. I had to pull it out the rest of the way because it was too far out to just shimmy back in again.

He was so proud of himself having pulled out the tube, until I reminded him that it would have to be reinserted.

Oh well I suppose We'll have to go into the hospital today to have it reinserted.

Compiled the blog history up to now

phew that took a while!

I know that I missed detailing several paediatrician appointments, at least one ENT appointment and I have barely mentioned the speech pathologist and dietician appointments but there were many in this time as well. I haven't even touched on the number of times that we have been to the hospital to reinsert his NGT after he has extracted it (3 times last week alone).

On average up till now we have had about two appointments per week. Sometimes four sometimes only one. I can't remember the last time that we had a week without an appointment of some kind for Raphael.

Hospitalisation for Nasogastric tube (NGT) insertion

from the 4/12 to 8/12/2006 Raphael was hospitalised for getting an NGT and setting up a night time feeding regime. I (Paul) had a really bad cold at that time and between Annie and I taking shifts at the hospital and looking after our other kids, I did not get the rest that I needed to get over the cold. But the good news was that with the NGT, Raphael was able to put on over 100g a week. While consulting in the hospital, our paediatrician visited Raphael and ordered an MRI of his head and upper chest to see if that will help diagnose his throat problems. That was scheduled for 18/12/2006.

Another Kind of Barium swallow attempt #2

This time it went well. Tube in, down to x-ray, short wait, the correct radiologist was there (phew) and the barium swallow was done with the appropriate x-rays. The result was even good news (not something that we were used to getting). There was no communication found between the oesophagus and the trachea.

Another Kind of Barium swallow

We arrived at the Paediatric Ambulatory Care Unit (PACU) on time to have the tube inserted for a barium swallow test but after waiting for a short while a nurse came out and sad “You are not supposed to be here today, it is for next week”. After a short some verbal negotiation she went back to check her calendar again and came back admitting that it must have been booked in her diary wrong as we definitely have a barium swallow X-ray booked for today.

We went into a treatment room and wrapped Raphael up in a blanket to immobilise his hands and then the procedure began. She measured the length of tube that she would need, lubricated the end of it and then slid it up his nose and slowly down the back of his throat. Of course he wasn’t very keen on this and thrashed his head from side to side (oops, I was supposed to be holding his head firmly to stop that). The poor boy gagged and choked and coughed and of course this made it all the more harder for the nurse to get the tube inserted. Finally it was over and the tube was tested to make sure it was in his stomach by sucking some bile out and testing it on some litmus paper.

Finally when we got to x-ray a puzzled radiologist asked us if we knew why he was asked to perform this procedure as the order from the paediatrician specified a particular radiologist was to perform the x-rays. He was very nice and very apologetic of the obvious administrative error that had occurred. After a phone call to our paediatrician, he confirmed that it would not be worth him performing the test. He informed us that his specialities were livers, kidneys, breasts, and penises and if we ever needed x-rays for these then he would be the man to see but the last paediatric barium swallow that he did was a long time ago and he would not be confident that he would be the best person to perform the procedure on Raphael. We agreed and were very civil about the whole thing, but afterwards Annie and I had a good rant to each other about the time that I had to take off work and the pain my boy had to suffer for no reason.