Friday, 28 February 2014

Albert fights back on Day 10!

To all of you who prayed so hard yesterday, THANK YOU! Albert seems to have made good ground over night and we are now about where we were a few days back, perhaps even a nose in front in some things.

Now to details. The exhausting struggle overnight had set Albert back slightly to 0.5 litres of oxygen via the low flow, with the occasional burst of CPAP to top him up. This morning he was already back down to 0.3 litres, but he did require a quick burst of CPAP after the effort of a feed left him a bit short of breath. It should give you some idea how weak Albert is that 5 minutes on the breast and 5 more sucking a bottle teat left him too weak to breathe without extra assistance.

As far as the doctors can guess, the overnight drama was caused by something going right. Apparently Albert's lungs have begun to allow blood to flow more freely (some relief in pulmonary hypertension), meaning that blood is flowing more easily through the lungs and back into Albert's heart. This places more load on the heart and, for reasons I do not yet fully understand, pushes larger amounts of fluid into his body. Instead of normal weight loss common in healthy newborn babies at this stage, Albert had actually been putting on weight. I had taken this as a positive sign, but it seems to have been mostly fluid retention caused by an overworked liver incapable of keeping up with what the heart was delivering.  

In an effort to reduce the load on Albert's liver, last night the doctors temporarily reduced his milk intake by approximately half. This tactic, combined with the diuretic, seems to have achieved what we were hoping for.  Albert has managed to rid himself of several hundred grams body weight by way of his nappies overnight and this morning, exactly the result we were hoping for. I am delighted to say that his skin has lost its sickly tinge, his eyes are alert and follow our faces as well as any baby his age, his heart is far less laboured (but still enlarged due to pumping so hard), his breathing is back to his regular struggle (still working hard, but as good as it has been so far) and his liver has returned to almost back to normal size. He is still slightly behind in oxygen requirements but, after last night, we are delighted to see him as well as he is today!

The poor little fellow has been poked and prodded so much it is difficult for the doctors to find a place to put another cannula that has not already been used recently (and often still bruised). The hand in the picture is the least affected, yet you can still see a series of small marks across the back of his hand where the cannulae have been.

The paediatrician at the local hospital thinks that things may have been taken a little too fast over the past week and that what Albert needs the time to slowly adjust to the improvements. He gave me a guestimate (my word, not his) that we still have weeks of hospital visits ahead of us, but not months. Overall it was a huge relief today to leave the ward today with a sense of a small light at the end of this particular tunnel.

The aim for the weeks ahead is to get Albert home. Once he is home, the aim is to allow him to slowly grow strong enough to cope with open heart surgery in a matter of months. Assuming the surgery repairs the holes in his heart, Albert's real progress can begin.

Once again, thank you for all your prayers!

1 comment:

chimakuni said...

What a wonderful post to top off the night. That albertasaurous is fighting for Albert too. Continued prayers for all of you.