A busy month and a trip to A&E

Before I launch into news about our trip to A&E, a few things have happened between the last entry and now. Firstly Max’s great ability to sit up unassisted has meant that the sides to his bed are too low to keep him safe especially as the bed goes quite high so that his nurses can suction him without hurting their backs. We have requested higher cot sides (as they are called) for quite some time and eventually got told that before they can be issued, as they are not standard, we need an occupational therapist’s recommendation. Why we couldn’t have been told this months ago I have no idea, but luckily our new OT (we haven’t heard from the old OT in over a year) was trying to contact us and she managed to squeeze an appointment in within a few days. Two hours after she had left us she had: called the nursery to make an appointment to see Max at school, made an appointment with the representative that sells the chair she wants to recommend for Max, sent an email to the LEA to tell them she thought Greenmede was not the appropriate school for Max and called the community nurses to recommend higher cot sides. We were all impressed! Anyway the higher cot sides have now been ordered but goodness only knows when they’ll be delivered. In the meantime we lower Max’s bed as far as it will go whenever we leave him in his room on his own just to reduce any damage that could occur should he fall out of bed.

Another current bone of contention has been Max’s tracheostomy tube. The makers of Max’s current trachy, Shiley, have (from what I understand) changed their manufacturing process and the change over to the new system has proved very difficult. The upshot of this is that Shiley tubes are in very short supply until the manufacturing starts again, hopefully in May this year. It was recommended to us to change over to another type of tracheostomy tube called a Bivona tube. Of course these are now in short supply as they are trying to cater for a sudden hugely increased demand. Also Max’s trachy size is a very popular size, so very few Bivonas and very few Shileys around. After much discussion with community nurses and Max’s ENT surgeon we have decided to stick to the Shiley tubes and start changing them every fortnight instead of every week. Also, I have discovered, that many people have a policy of re-using Shiley tubes, just the once, so we will also be doing that. Hopefully this means that the few tubes we do have will last us until things get back to normal. Max doesn’t seem to be suffering any ill-effects from a fortnightly tube change, so as long as that is the case we will stick to this new regime.

Lastly, Max’s gastrostomy has been rather a big problem. We have always suffered with his gastrostomy and now that he is so mobile the long tube that we had managed with for so long is no longer viable. So we now have a button again, but this seems to need to become shorter and shorter. We have seen various people and have gathered that the main reason for the gastrostomy length shortening is probably that the balloon that holds it in place is slowly working its way up the tract and therefore widening the tract as it goes. The only way to confirm whether this is the case would be do put an endoscope down into the stomach, but because the tumour is blocking the way we can’t do that. So we are making the assumption that this is what is happening. Max’s surgeon suggested just getting a shorter tube, but the specialist nurse at Great Ormond Street suggested removing the gastrostomy for long enough for the hole to start healing and closing. Unfortunately this would take quite some time with Max’s gastrostomy (for various technical reasons) and in other cases they would consider feeding him with a nasogastric tube in the meantime (ng tube, like the one he came home with from the NNU). As we can no longer insert an ng tube, that is not an option for us, so we thought that maybe it would work if we took the gastrostomy out overnight, 12 hours with no feeds, and then re-inserted it in the morning. We did this last Monday and it did improve things but only very marginally. In order to make a real difference we would need to remove the gastrostomy for longer, or maybe for several consecutive nights. As we have respite for four nights out of seven, I asked if we could have some extra cover so that we could do this every night over a period of a week. Unfortunately like all Primary Care Trusts, St George’s is hugely in debt, so our community nurse has already said that she thinks our request will be turned down. So our next move is dependent on what Great Ormond Street suggest when I finally get round to calling them again for further advice!

As far as Max’s school situation is concerned I have written to the LEA and we are waiting for a response. Of course as it is now the Easter holidays, we will be waiting a while. It is assumed that Max will continue to go to Red Balloon Nursery next term and that he will be going for 3 days a week. Hopefully that will force everyone to sort things out, if nothing else.

On Monday 27th March Max wasn’t really himself as he had developed a rather nasty dry cough and so we decided to have a quiet day at home. On Tuesday we were due to go to the Little Chasers’ Easter Party, even though he hasn’t been to any of the Little Chasers fortnightly play mornings this term. Although Max had been on oxygen the night before I decided that it was still worth going along and seeing how we got on. We had a lovely time and Max seemed all right, although we did not let him go swimming, just in case. (Luca did go swimming and as the water baby that he is, he had a great time.) That evening when we put him to bed we realised that he had rather a bad temperature (39ºC) and was shivering. We gave him ibuprofen, but an hour or so later his temperature had only come down to 38.6ºC so we gave him some paracetamol. That night Verna kept up a good regime of analgesia and he had a fairly restful night. On Wednesday morning he really was showing signs of being very under the weather, and after an early lunch we put him to bed for a nap. We put him on the saturation monitor and his oxygen levels were way below what they should be and we put him on oxygen but the usual amount of 0.5 litres per minute was not enough and we had to increase it to 1 litre. Also his heart rate was really very high (160) even though he was asleep (when it should be nearer 80). Although some increase in heart rate is caused by the temperature, this seemed to be too much. I called our community nurse and spoke to Helen (our previous community nurse). She felt that we needed to get Max into hospital to have a chest x-ray as she was concerned that he may have a chest infection.

We woke Max up and bundled him into the car and off I went with the help of Sarah who had come to visit. Jemma stayed at home with Luca. Poor Sarah had come round for a nice lunch and to see the children before she headed off to Kenya on a long holiday (students really do have an easy life!) and instead spent the afternoon with Max and me back at St George’s in A&E! It was actually a very horrible experience as he had a temperature of 40ºC (104ºF) by the time we got there and it was extremely difficult to get it to come down. Also he got terribly upset when they did the chest x-ray and because of the pregnancy I wasn’t allowed to stay with him so Sarah was left to cope. He was very distressed and it really was awful to watch. He did calm down after that and his temperature eventually started coming down too, but by this stage we had been in A&E for at least 2 hours. Luckily Helen had called down and had warned them of our arrival so we did not wait at all and were seen immediately, but by the time we were seen by various registrars and consultants, and doctors around the hospital who know Max were consulted quite some time had gone by! Eventually quite a senior consultant came down to see us and convinced us that the best course of action would be to have Max admitted overnight, to agree to have a canula put in so that he could be give intravenous antibiotics and she agreed that Verna, who was due to come to the house to look after Max, could come to the hospital instead. Max had been coughing up some rather horrid secretions which threatened to block off his trachy if he wasn’t suctioned immediately. We stayed with Max until Verna came, and this extremely wonderful consultant managed to get a canula into Max’s hand without too much trouble and above all without too much distress. By the following morning he was much better and that evening we were home again. Unfortunately we had to go back the following day for the third of Max’s intravenous antibiotics but that was just a visit. By Friday you wouldn’t have guessed that he had been at all unwell but he did give me quite a fright.

On that particular Friday morning, I had my 21 week scan and we discovered, as predicted, that our third baby is another boy. Justin and I are struggling with names and undoubtedly will not have chosen one by the time the baby is born! Since our trip to A&E, life on the home front has been quiet. Max has been on holiday since the 22nd April and Jemma had a week off last week. However, there have been some amazing progress by both children relatively recently.

We had a visit from Portage at the beginning of April and one of the things we have been working on is trying to encourage Max to learn to climb the stairs. Luckily Luca has just learnt to go up the stairs too, so this has encouraged Max no end. In the last month he has gone from climbing one step to doing the whole flight very competently, all by himself. He does sometimes lose his balance and risk falling backwards, so we need to be there for him, but otherwise he gets to the top of the stairs, turns round with the biggest, proudest smile ever and gives himself a round of applause! Now the two of them practically race each other up the stairs. One day not that long ago, Max came up the stairs with his community nurse and Luca decided to follow about 5 minutes later as the bottom stair gate had been left open, but the top stair gate was closed – however not securely. In his attempt to open the top gate (as it opens towards the stairs) he lost his balance and went tumbling all the way down the stairs. He had a couple of carpet burns but other than that seemed unscarred by the experience!

On Tuesday 14th March Max took his first steps unsupported on his walking frame. We are very proud! We have this recorded for you, and will post it soon. On Sunday 2nd April Luca took his first steps all by himself and has been practising ever since. He doesn’t go very far and he looks terribly sweet doing it!