Justin has kept you all informed about the various goings on in my absence but obviously due to time constraints he has been giving you more of an overview so I thought I would fill in the details.
As J said, on Tuesday after a pre-op appointment with the ENT Surgeon (and coffee at Starbucks with Katy, Harry (3) and Bessy (15 months)) Massimo and I came home. Massimo was asleep in his car seat but he was bubbly, as though he needed suctioning, so I suctioned him, but he was still bubbly, so I suctioned him again. Nothing seemed to be coming up but Massimo still sounded bubbly and then I noticed that his nostrils were flaring as though he was fighting for breath. I immediately called the Community Children’s Nurses, but I knew that our Community Nurse Helen who is a respiratory specialist was off for the day. I spoke to one of the other nurses and she and another nurse came round asap. I think they were knocking on the door within 15 mins. In the meantime I had been assisting Massimo with his breathing using the ambu-bag (see earlier posting on resuscitation) and I had attached him to the saturation monitor. His oxygen levels were good but he was still obviously working hard to get the oxygen in and the extra help from me was settling him. When Sarah and Emma (I really hope I’ve remembered their names correctly but I wasn’t really in a fit state at the time), the nurses, arrived we changed Massimo’s tracheostomy and he seemed to find breathing much easier. I still wasn’t entirely happy but felt that I had possibly worked myself up into such a state that I was looking for problems rather than appreciating that they had been solved. So the nurses left and I tried to calm both Massimo and myself.
I went upstairs to give Massimo his 3 pm feed and express milk aswell (I found that this was the only way of keeping my expressing regular and it is a good time saving way of doing it) when I realised that I hadn’t had any breakfast nor lunch except for a pain au chocolat at Starbucks and the whole situation overwhelmed me. I called Simona to see if she could come and give me a hand and promptly burst into tears when she answered the phone. She was round in a flash – she fed me, she fed Massimo, she answered the phone, the door and put me to sleep for an hour or two. I was SO grateful!
In the meantime one of the of the Community Nurses went to the NNU at St George’s to see if they could find someone who knows Massimo and ask them if they would kindly pop round to check up on him. They realised I wasn’t 100% happy and so were keen to get a second opinion. Sister Theresa Alexander of the NNU said she would happily pop round on her way home and she came at around 5.30. I was asleep and Simona let her in and chatted to her. Theresa felt that Massimo had a viral infection and thought it best for us to go to A&E. We got to A&E at around 6.00 and were admitted, as expected by Theresa, but the Frederick Hewitt Ward was not ready for us until after 10.30, by which time Simona and I had ordered pizza so we didn’t go upstairs until we had demolished the lot!
Tuesday night was uneventful. I slept and the nurses kindly came in and suctioned Massimo every half an hour. His viral infection has increased the amount of secretions and therefore the need for suctioning. I managed to sleep uninterrupted from 1.30 am till 6.30 am! On Wednesday during the doctors rounds Massimo’s head was measured and found to have grown another centimetre and a half and I was told that Massimo was likely to get worse before he got better and that they would continue to keep us in for observation.
Massimo had been on a monitor since being admitted to the ward and on Wednesday night I noticed that his heart rate had increased and even when he was asleep it didn’t drop below 165. [NB Babies heart rates are much higher than adults’. For reference Massimo’s is generally 140-150 when asleep and 160-170 when awake and active.] By 1 am the nurse went off to call the doctor as it was obvious that Massimo was working very hard on his breathing and she really listened to me when I said I was unhappy with his heart rate. The doctor came and explained to me that it was natural for Massimo to have an increased heart rate because the viral infection was making him work harder with his breathing and that this was to be expected. However he did take a blood gas (a blood sample to check the levels of carbon dioxide in the blood which gives them a good indication of how successful the breathing is) which Massimo did NOT like and which gave him a result of carbon dioxide levels of 9. When Massimo was discharged from NNU his carbon dioxide levels were around 6, so this blood gas showed an increased level, which wasn’t brilliant but just indicated that it needed monitoring. At some point, and I’m not sure when, we started giving Massimo extra oxygen to help him along. It wasn’t large amounts of oxygen and usually only during feeds or pooing.
Yesterday morning everything went fine. Massimo was weighed and he now weighs 4.645 kgs (10 lbs 4 oz), he was on 0.2 litres of oxygen (very low) but we kept him on it pretty constantly and upped it to 1 or 1.5 during activity. He had been getting more and more distressed during feeds and needing more support with his breathing. Then during his 3 pm feed he was so distressed that the nurse and I decide I should pick him up and cuddle him to see if this would help settle him. He did seem to settle a little, but then his lips went blue. The nurse stopped his feed, put the oxygen level up to 4 and called a doctor immediately. Massimo’s colour did come back quickly but he still looked very pale. A blood gas was taken showing a level of 12 and it was felt that Massimo needed much closer monitoring, possibly more help with his breathing and more help with his feeding too. So a line was inserted so that they could give him fluids and a drip, a load of blood was taken for testing and he was transferred to PICU.
PICU was cool, calm and collected when we got there. At this point Massimo was so exhausted from crying during the line being inserted and prior to that during his feed that he was dozing. His colour had come back and he looked better than before. At around 7 pm they put him on CPAP and he stopped working so hard on his breathing. By the time I left at 8.30 he looked settled, contented but hungry – he was chomping on his dummy. He kept nearly falling asleep and then waking up for another chomp. When I called later last night I was told that eventually he started crying because although he was being given nutrition via the drip his tummy was empty and he was hungry so they gave him some of my milk which I had luckily left there. He was currently being fed 80% of full feeds calculated at 150 mls per kilo per day. At home Massimo is on 180 mls per kilo per day. He was happy and asleep.
When J called this morning we were told that everything was fine but that they had had to do an emergency trachy tube change as he had managed to dislodge it. I know they had been planning to change the trachy ties (that hold the tube in place) the night before. We are assuming that either the ties which they were planning to change at some point were a little loose or that with CPAP in place Massimo has a much larger area to hit when thrashing his arms about – which he does a lot when awake – and a strong whack from him easily have caused the problem. Recently he has often hit his trachy quite forcefully but all he has managed to do so far is dislodge the humidifier that is attached to it rather than doing any real damage.
I am planning to go in now that I have updated you all and will write more soon. I just need to go and pack a few familiar items for the little boy to remind him of home in his new bed.