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”
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!
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. 
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? 
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!
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!
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!
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.
The weekly update is due and there is some good news and some bad news. We had a meeting with the Doctor in charge on Friday and it was really good to have a thorough update from her. The nurses do try to keep us abreast of what is going on but as they change twice daily it is easy for things to be missed.
Not much has changed since my last email last Tuesday. Max now weighs 2.154 kg (4lb 12oz) he was born at 1.556 kg (3lb 7oz) and is beginning to look chubby cheeked and healthy. The doctors and nurses on the unit are very complimentary about him, one of the doctors said “he is very beautiful, and we see a lot of babies in here!” So I know I’m biased but other people seem to agree too! 
Firstly my apologies for not writing for such a long time. I hope you have all assumed that no news is good news!
The news from the hospital is very positive. On Friday morning we had an appointment to see the doctor who has been looking after Massimo over the last 2 weeks. She wanted a chat with us as she was handing over to another doctor for the next 2 weeks.
Just a quick update to let you know that I didn’t get my cuddle yesterday but am hoping to get one tomorrow, however Massimo is VERY happy indeed in his new heated cot and is waking up nicely. The doctors said it would take some time for all the drugs to work their way out of his body, but he moves a little more every day. He is beginning to really grip when you give him your finger to hold and he seems to respond to my voice and touch as well as J’s voice and touch, which is very satisfying. All in all, the progress is good. What the future will hold, we don’t know as yet, but for the moment every step forward is a positive thing. I am attaching a picture of the little chap in his new bed with tracheostomy in place. As you can see the ventilator (big clear tube going to his neck, with 2 blue and one clear tube coming off it) looks quite daunting but once he learns to breathe on his own this will go and he will be left with a small plastic circle round the hole in his neck – still not nice but necessary. 
Sorry it has been so long since my last update, but we seemed to have been really busy and by the time I was ready to send an update it was gone 6pm on Friday and most of you will have left work for the weekend, so I decided to postpone.
