Massimo's story

We went to see Massimo today to be told that he now weighs 3.707 kg (8lbs 2oz) and is on 111 mls every 4 hours. He seems to be taking after both his father and his mother in this regard as we both excel in accumulating the pounds! He is, however, looking absolutely fantastic, although his head seems to be getting quite heavy, either that or the knowledge of his hydrocephalus getting worse has influenced my perception.

Tomorrow is the big day with the trachy change. Today I feel as though I have been chasing my tail trying to get ready but I don’t feel I have achieved anything except updating this site!

Today was spent wondering around Homebase purchasing storage solutions for all of Massimo’s medical equipment and thinking about what Massimo’s needs will be once he is home and if we are ready for it all. Shopping trips will be totally different once we need to take Massimo with us, as we will need all the usual baby stuff, plus a minumum of a portable suction and catheters, a spare trachy tube of the right size, a spare trachy tube one size smaller (just in case there are problems with the first), a mountain of tissues etc. etc. etc.

Slowly but surely we are getting ready and getting excited!
He currently weighs 3.5 kg (7lbs 11oz)

Today at 14.00 there was a multi-disciplinary meeting at the hospital to discuss Massimo and his transfer from the NNU into Community Care and Paediatrics for his future care. We joined the meeting at 14.30 and we met a variety of people. I had already met most of them but there were a few new faces for J. We discussed who would look after what in terms of Massimo’s future care and we discussed what was required of us and of Massimo in order to bring him home and what the plan was for getting him and us ready for his homecoming.

We also discovered whilst at the meeting that Massimo’s head has had another growth spurt. This would indicate another increase in the level of fluid in his head and this will be checked with an ultrasound scan in the next few days. It is possible that this will happen again in the future and a plan was made that the Community Nurse will take regular head measurements to watch out for any further increases. If this continues to happen, Massimo will require a shunt to drain off some of the liquid. His condition is Communicating Hydrocephalus, i.e. there is no blockage (as in non-communicating) and therefore although there is increase in fluid but no related increase in the pressure on the brain.

The really good news, however, is that a plan has been formed for J and I to do a tracheostomy change next Tuesday, for us to “room in” over the Easter weekend, a further tracheostomy change the Tuesday after that, with a view to Massimo coming home on Tuesday 22nd April!

Of course, a lot can happen between now and then, but this is the plan and this is what we will be working towards for the next 12 days.

Today, Helen came to the house and started unloading her car. I think it took her about three or four trips … and this is just the beginning. It was really weird to see the stuff at home when we are so used to it all, but in the NNU. As I unpacked the syringes, it really dawned on me that Max is coming home. In the NNU we are not encouraged to think about exactly when babies are due to come home so the thought is kept as a vague possibility some time in the future, but the future suddenly got a lot closer!

Helen and I unpacked all the boxes and packages and went through the use of each and every item. By the time she left, Massimo’s bedroom floor was hidden under medical equipment. We will certainly need to buy some sort of storage solution for all the stuff, or else we will never know where we are.

This morning we had an appointment at 10.00 am with the surgeon who will be performing the gastrostomy on Massimo. The surgeon would like to wait for Massimo to be a little bigger before he performs the operation and suggested the week of the 20th May which is when he returns from his holidays. Massimo is due to have the ENT specialist investigate his windpipe at around that time and so it has been decided that the two doctors will organise to do both under the same anaesthetic, date to be confirmed.

This afternoon I met one of the community nurses who will be caring for Massimo when he comes home. Her name is Helen and her job will be to ensure that we are equipped with all the know-how that we will need as well as all the equipment. She is an extremely nice lady and Massimo’s homecoming date will eventually be largely up to her. She is coming round to the house tomorrow afternoon and she will bring some of the equipment we will need with with her. It is all very exciting, but we don’t yet have a date or any real idea of when Massimo will be home. It could take up to 3 or 4 weeks and it will certainly not be in the next week.

I took J’s mum to see Massimo today and when we got the to hospital, a very nice lady called Mary told us that she had been called to the NNU to teach us how to change Max’s trachy tube! Luckily J could wrap things up in the office quite quickly and come and join us within the hour. Changing Max’s trachy tube is something that we will have to do possibly on a weekly basis, but maybe less often, depending on the type of tracheostomy tube the hospital give us. Most importantly, however, we have to be able to put in a new tube should the one he is wearing get knocked out of position.

As changing his trachy tube effectively means disturbing his airway, the whole procedure has to be planned with military precision. I must say that this was one of the most stressful afternoons that J and I have had in a long time. Max was hungry, which didn’t help, but all in all he was quite settled UNTIL we started fiddling with his tube and then all hell was let loose! The worst thing was that in the 2 seconds it took Mary to take the old tube out and fit the new one in Max’s face went completely purple as he fought for breath. Poor little mite, and then he had to wait whilst we quickly changed his nappy before he got his feed. When we realised that the nasogastric (ng or feeding) tube was actually split at the top and should really have been changed before feeding, we decided that he had really had a bad enough time and that we would feed him first, let him sleep a little and then change the tube. J and I left the unit absolutely exhausted from the sheer stress of it all.

More difficult still is that next week we will have to do it ourselves – with supervision of course – but until we can change the tube with some confidence ourselves, Max will not be able to come home.

Justin and I went to the hospital and whilst J video-ed (sp?) the event, I gave Max his third bath. This time was much much more pleasant than the last. Firstly because Joydee was the nurse helping us and secondly because having done it once before I was a little more of a dab hand at it. However, when it came to washing his back the nurse assisted because, as I had said first time around, it is difficult to do alone with a trachy tube as the standard holding position would block his airway. I am sure that in time I will find my own way of holding Max so that I can bathe him alone (or Justin can) but it will have to be a “non-standard” position. So that really went quite well. Also, J and I were taught how to change the ties holding Max’s trachy tube in place. These will have to be changed nearly every day so we will have to get quite good at changing them. Of course, unlike changing a nappy, his trachy tube is vital to maintaining his airway, so just a little bit more scary.

The videoflouroscopy happened today and the basic conclusion is that Massimo doesn’t swallow. This is something the doctors suspected but the test confirmed their suspicions, basically that a quantity of liquid at the back of the throat does not automatically trigger the swallowing reflex in Massimo.They can’t say that he doesn’t swallow at all, as he could be, but he didn’t during the test. We don’t know as yet if it is something he knows how to do but doesn’t do it automatically, or if it is something he doesn’t know how to do.

It was quite a sight watching the four of us (one nurse, one doctor, one father and one mother) wheel the incubator from one end of the hospital to the other laden with all that Massimo could possibly need in his hour outside the NNU! Those in the know will be able to spot a CPAP machine, a portable suction machine, I guess there was some oxygen somewhere, J carried a resuscitation bag with goodness knows what else in it, and that is only the stuff that I recognised! The whole process did not actually take very long. Once we settled Max in the chair – as you can see he wasn’t very happy until he was given his dummy – the hardest part was actually getting the barium in his mouth without it dribbling out or being dribbled out (he has learnt this technique for getting rid of excess secretions in his mouth and unhelpfully used it here!).

The upshot of all of this is that he will have to continue being fed by tube until we can teach him to swallow. This is very difficult to achieve and is a very slow process. It revolves around facial stimulation, especially around feeding time. We will need to observe him carefully to try to see if he ever swallows. If he doesn’t, we need to encourage him to do so by stroking the face in specific areas, until he does and then we use the same technique to encourage him to swallow more and more often until he can do it by himself, and hopefully, eventually, automatically.
Continue reading “The Videoflouroscopy”

Today Massimo had a very active afternoon. Firstly, he had two out of the three injections he is due for his normal immunisations. The third will happen in the next couple of days as they are still waiting for it to come up from the pharmacy. I held him while the doctor tortured him (twice – once on each thigh) and the poor little mite cried for all he was worth. Straight after that I gave him a bath, my first time. Unfortunately between him being distressed, the nurse being difficult (she isn’t one of my favourites) and Massimo being on CPAP, it wasn’t as pleasant an experience as I would have hoped! I did try to encourage the nurse to let us do it later on when J would have come to the hospital, or maybe even tomorrow, so J could organise being there, but I think she had just decided that today was the day, and of course it suddenly became a really good thing to do to soothe him after his injections, etc. etc. The only argument that I agreed with was that it was better to have his bath before his feed. In the end, between the injections and the bath, poor Massimo was fed 25 minutes late and boy does he hate that! He was so tired by all the activity that he was sound asleep by the time 3/4 of his feed had filled his stomach!

He currently weighs 3.16 kg and is on 94 mls of milk every four hours.

Massimo is doing really well with his time off CPAP and although he is 6 hours off and 2 hours on, the doctors are only keeping him on CPAP because his immunisations are due and they want the extra help there in case he has a bad reaction to them. Apparently many babies have some sort of reaction to the injections, fingers crossed that it doesn’t delay Max getting better. He is due for the injections tomorrow night.

Massimo had a lovely cuddle with Great Aunt Karin this afternoon, and then another long cuddle with Great Uncle John. Max was awake most of the time with Karin, but by the time John arrived I think he decided that no matter how much he wanted to stay awake he was too tired!

I went to the hospital today to find that there was a card waiting for me there from Massimo “to the greatest Mum in the world”! All the mums in NNU got one, isn’t that sweet and thoughtful of the staff?

Max gave me his own brand of best wishes today by deciding to poo twice whilst I was changing him, and the second time it was rather projectile and got me, and his bedding. We have photographic evidence for you all to have a giggle at!

Claudia finally got her cuddle after weeks and weeks of waiting and Massimo was as good as gold for her. (Each time she came there has always been some medical impediment!)

Massimo is still doing very well, 4 hours off CPAP and 2 hours on.

J and I went to the hospital today thinking we had a meeting set up with the doctor for 4.30. In we went, as we do every day, when we saw that Max’s name was no longer on the board under Nursery 2, he was ther under Nursery 3! He has been doing so well that it wasn’t really that much of a surprise, but lovely nonetheless!

So he is back where he was, in a normal cot in the High Dependency Room. He is now on 4 hours off CPAP and 2 hours on, and all the nurses agree that he is happier and more settled OFF CPAP than on!

The doctors have decided not to move Max from Intensive Care (Room 2) to High Dependency (Room 3) as they have decided to start weaning him off the CPAP and want to keep a close eye on him.

They have started him on a 2 hour cycle: 2 hours with CPAP, 2 hours without and he seems to be tolerating it well. Well done Max!

Justin learned to suction Max’s trachy tube this evening and did it extremely well. It’ll be my turn tomorrow. This will be something that J & I will have to do regularly for Max as long as he has the tracheostomy.

It is now 2 days before Max’s actual due date and for all intents and purposes he is now a ‘term’ baby. His current weight is 2.8 kgs (6 lbs 5oz) – which is a respectable weight for a newborn! Grandpa is clearly impressed!

We got verbal MRI scan results on Friday from the doctor. As far as the fluid levels are concerned, they cannot see what caused the increase and therefore we really know no more than we did before. The situation will have to be closely monitored. Three things could happen: the brain size could catch up with the fluid levels, the fluid levels could remain abnormally large but not increase the pressure on the brain, the fluid levels could increase and put more pressure on the brain causing severe brain damage. Only time will tell, however the growth of the fluid levels seems to have stabilised in the last week.
Continue reading “MRI results”

As you can tell by my news becoming further and further apart, things with Massimo have, on the whole, settled. However, last weekend, Max had a bit of a bad time. On Saturday morning when Max’s oxygen levels dropped badly the nurse cleaned/suctioned his trachy tube and found that there was a lot of fresh blood. Max was immediately taken back into the Intesive Care Unit and they contacted the ENT department to try to discover where the blood came from and what had caused it. Apparently granulated tissue forms along the bottom of a trachy tube once it has been on site for a while. When suctioning his tube this tissue must have been touched/knocked causing the bleeding, which of course went straight into his lungs and caused his drop in oxygen levels. Max was extremely unwell for a period of time and he was put back on the ventilator and suctioned regularly to remove the blood which he was coughing up. Whilst all this was happening his trachy tube then got knocked out of place and the nurses kept him going with the ventilator tube going straight into his lungs whilst they waited for the ENT surgeon to come down and put a new tube in.
Continue reading “Backwards step”