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.
Firstly, we were told that a neurologist was coming to see Max on Thursday. However it wasn’t until Thursday that the nurse told us that the neurologist was coming because they felt that Max was “a quiet baby”. This was explained further by the doc on Friday. She explained that although Max’s muscle tone in his arms and legs was good, he was a little floppy in his torso/back area.
Along with this they had also spotted, again on Thursday, that Max’s head, which had been growing steadily and normally, had suddenly grown too much, and also that they had not done a head ultrasound on him for a while. The head measuring and head ultrasound and things done to all babies in the Neonatal Unit as a matter of course. The ultrasound has shown that the bits in the brain which are filled with fluid are too large and are out of proportion with the rest of his head.
We have no explanation currently for either the floppiness or the excess fluid. The neurologist suggested a CT scan and/or an MRI scan as well as a blood test that measures muscle tone. The blood test has come back normal. They are hoping to do an MRI scan this week however there are two small bands of metal in Max’s trachy which will impede this being done immediately. The ENT surgeon will hopefully come up with a temporary measure that can be used just whilst the scan is being done. We await to hear news on this in the next few days.
His lack of swallowing is of course another area of concern and in order to investigate why he is not swallowing they are planning to send him to Great Ormond Street Hospital as an outpatient to have a videoflouroscopy done (I hope that is spelt right!). Anyway this procedure will show what is actually going on in Max’s throat when he tries to swallow. Once that is identified we will discuss measures to hopefully fix the problem.
On the up side, Max now weighs 2.4 kgs (5lbs 5ozs) and he has been moved into a normal cot with a little heated mattress. He has also moved from the Intensive Care Unit to the High Dependency Unit. This move was prompted more by a need for Intensive Care beds, however it was felt that of all the babies he was the most ready to move. He is now on 53mls of my milk per hour and is looking really VERY chubby cheeked. He is settled and happy.