A Month in

Posted by Juliette 

Sammy was diagnosed with Cystic Fibrosis (CF) roughly one month ago so I thought I'd post an update on how we are all doing.

Since the first home visit we have been to CF clinic 7 times and had a couple of home visits from the nurses too. The reason for the frequent appointments is not because they can't get enough of cute little Sammy, (though a couple of minutes cooing with smiley Sammy is definitely part of every consultation) but so that his weight can be checked, his medication checked and tweaked if necessary and so that we can be taught more about an aspect of care or the condition. At the last couple of clinics we have also been checking for any signs of an infection following a little cough he had which has now cleared up by using a course of rescue antibiotics. 

The people we see each time at clinic are: a CF consultant, a specialist nurse, a physiotherapist and a dietitian. Doses of medications and top up feeds have been changed on almost every clinic visit as making these adjustments fine tunes the regime to suit Sammy. These alterations certainly keep Mark and I on our toes but the difference they make to Sammy is remarkable.  

One of the drugs Sammy takes is an enzyme which helps him to absorb fat, protein and nutrients. Sammy doesn't get the enzymes his body makes because the tubes they should be travelling down from pancreas to stomach are all furred up with thick mucus meaning that food just goes straight through him without its goodness being absorbed. This is why he was so slow putting on weight in the early weeks of his life. Despite feeding nearly 24 hours a day he just couldn't get all he needed from the milk, including that nice full feeling that you get from absorbing all the rich fats and goodness in food. Added to this was the problem that even though his stomach was full of milk, he still asked for more and often vomited as there was no more space in his belly. 

The enzyme that we give him is called Creon and tiny scoops of little granules are given on the back of a spoon with some apple puree each time he eats. This has made an enormous difference to Sammy.  The tiny scoop of Creon (in fact half a scoop initially) has meant he digests what he needs from his feeds, making him feel satisfied and allowing him to put on weight. Before diagnosis he was some way beneath the lowest centile line for
what a baby normally weighs but is now just nudging the line for the lightest
babies so we hope before long he will be back on the chart. In our most resent
clinic visit the dietician advised we give a fourth formula feed each day and
increase the Creon dose with the formula. This should really help to boost his
weight.

 

The use of Creon has made such a difference and now that he feels satisfied from the food he can be himself, he is the most smiley baby I know.  Just recently we had a new milestone; he had a formula feed and fell into such a content sleep that I was able to put him down in the Moses basket where he slept whilst Joseph and I ate lunch and played.  This may not sound like much to you but to us it was a major event.  Before this point Sammy's daytime sleeping had been so shallow that at best he dozed in my arms for a short while which made it difficult for Joseph and I to play together.

 

Other updates: We are leaning a variety of physio techniques so we can mix things up a bit. 

The boys and I are staying with my parents while we have a porch rebuilt. 
Who knew that there is sometimes spores in brick dust? We want to keep Sammy away from this risk to his health and we get to have a change of scenery and a bit of a 'holiday' at the same time. 

All in all Sammy is putting on weight and we are in control of other symptoms of CF, Mark and I are doing well at keeping on top of the ever changing routine and Joseph is having a whale of a time staying at Granny & Grandpa's house.