Tuesday, August 21, 2012

Daily Treatments

Here is a description of Victor's medications and treatments and what a typical day looks like for him.

Creon: These are his enzymes which he must take before he eats anything. They help break down his food so he can absorb nutrients from it. We mix a little scoop into a little bit of apple puree and he takes this immediately before a feed. It will be effective for 30 minutes so if he takes longer than half an hour he will need more, but that has never happened yet. These enzymes aren't drugs, they are just pancreatic enzymes which everyone produces in their body so if someone else accidentally took some they would be totally fine. The only 'side effect' that these can have are potentially causing mouth ulcers if one gets stuck to his gum or something, so I usually check that none are stuck in his mouth. The dosage he gets depends on the fat content of the food he's eating, so as he gets older we will have to read a lot of labels and then work out how many enzymes he needs. He will need to take these for the rest of his life.

Creon with scoop, container of apple puree with baby spoon and a small vial of pre-measured Creon.

Salt supplement: Because he loses more salt than everyone else, we give him a liquid salt supplement throughout the day. He gets 4ml over the course of a day, given in 0.5 or 1ml doses. He really likes the taste of this so I often use it to settle him!

Salt solution and a measured 1ml dose in the syringe.

VitABDECK: This is his vitamin supplement, which he hates. They are primarily fat-soluble vitamins, which he has trouble absorbing because he is pancreatic insufficient, so he gets a little 'top-up' with these to make sure he has good vitamin levels. We break open a capsule and mix half with a little spoon of apple puree once a day. I do this at 6pm every night, right before a feed because he hates the taste, so it's good to quickly wash it down. The vitamin is bright orange because of the Vitamin A in it and it STAINS everything it touches! He has many little outfits with orange stains on them. We use a bib every time, or we will use a muslin cloth or something that we don't mind staining but it still manages to find its way everywhere. I have tried everything to get the stains out but they are permanent! I think he will also need to take this for the rest of his life but when he's older he can just swallow it as a pill, or we can mix it with something else to hide the taste a bit better.


Antibiotics: He takes 0.9ml of antibiotic twice a day. This is to prevent any bacteria growing if he manages to catch something, so it's more of a preventative measure because he is not sick. The antibiotic is actually two different antibiotics together and it's quite strong apparently. The antibiotics have a short shelf-life so I have them in powder form in my pantry with little bottles of distilled water. Every Friday morning I open a new bottle and mix it with 55ml of water to make up the antibiotic, which then needs to stay in the fridge. I think he will be on these for a long time, probably until he is two years old.

Bottle of prepared antibiotics.

Chest physiotherapy: We do fifteen minutes twice a day. There are 6 positions which need to be done, so that's 3 in the morning and 3 in the evening. We have to pat Victor's chest in various positions to help  break up and clear the mucus. It's a lot like burping him except the pats are a bit firmer. We usually call these his 'exercises'. As he gets older we will encourage him to breathe deeply and cough at the end, but right now we can't really ask him to do much! Sometimes this sends him to sleep (like it did this morning!), but if he is overtired he will cry inconsolably until we stop and just put him to bed. This often happens in the evening, so we try to get it done before he is that tired. A little bit of crying (grizzling) is good, because he is breathing deeply, but too much is just not worth it. I want him to have positive associations with the chest physiotherapy because he will have to do this for the rest of his life and at times we will have to do much more than 30 minutes a day. I usually do it with him on my lap, or sometimes on his play gym so he can play at the same time.

I have laminated charts up in his room to help me remember his medications and exercises every day, and I tick off each item as we do it. I find this really helpful as I never have to remember anything now, it's all on the chart. Before I put the chart up I found it especially difficult to remember how much salt I had given him, but now it's very simple.

Laminated charts in Victor's room.

I bring a little insulated lunchbox with me everywhere for Victor's medicine. I measure out individual scoops of enzymes into tiny little blood vials given to me by the hospital. This means I won't lose the whole bottle of enzymes if I leave my bag somewhere or something like that. It also means I can get the enzymes ready one-handed. I also have a small container of apple puree, a baby feeding spoon, and a fork to mix the enzymes into the apples. I usually bring the bottle of salt solution and some 1ml syringes. I don't usually bring the antibiotics with us, and only bring the vitamins if I know we will be out for a long time around dinner.

Is this not the cutest lunchbox on the planet?!

Victor still wakes through the night for a feed, so before I go to bed I will measure out the enzymes into the vials which makes it a lot easier at 3am! I will just have everything ready to go so I'm not searching for things in the middle of the night.

Victor having a nap
Felix playing Candyland
It's really strange giving my baby apple puree at such a young age (he had his first taste of solids at 4 weeks old!) but he has improved so much and is doing really well on it. The only struggle is giving him the dreaded vitamin, but that will improve as he gets older. He takes everything else really well and generally cooperates with his physio.

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