For day 2 of National Kidney Month, I'm sharing about Rowan's medications.
Rowan currently has a list of 19 medications and 2 different formulas that he gets to keep him “healthy” and nourished. He receives 12 of these medications daily and the rest are either every other day, every week, once a month, or as needed. Some are your more typical medications for babies like Tylenol and Simethicone (gas drops), which he just takes as needed.
On a typical day, I give Rowan cholecalciferol (vitamin D3) and Nephronex (vitamin B Complex with Folic Acid) through his G tube with his first feed of the day around 9:30 am. Every other day, I also give him Calcitriol at this time, which helps control his parathyroid hormone to regulate his calcium and phosphorous levels. He has to take this by mouth because it’s oily and would get stuck in his G tube. Around 12:30 pm, I give Rowan Senokot and Colace, which both help to prevent constipation. With his 3:30 pm feed, I give Rowan Protonix (to help with reflux), Amoxicillin (to prevent bacterial infections), and Lactulose (which also helps to prevent constipation). Rowan has a sensitive stomach and gets constipated often. Constipation can prevent his growth because it causes him to throw up most of his food throughout the day, and can prevent his dialysis catheter from working so it’s important to keep things moving. Along with the 3 daily constipation medicines, he is prescribed glycerin suppositories as needed. I don’t give any medicine with Rowan’s 6:30pm feed because his stomach is usually the most sensitive in the evening. At 8:30 pm I give him Ferrous Sulfate through his G tube. This can’t be given with food so I give it an hour after his last daytime feed ends and an hour before his overnight feed begins. Around 9:30 pm, I mix breast milk with Amino Acids (a formula with protein and calories in it to help with growth), Sodium Phosphate, and table salt (which helps Rowan’s body absorb nutrients since dialysis depletes his body of sodium) for his overnight feed.
Every other Wednesday, we have to give Rowan a shot called Aranesp, which helps to increase his amount of red blood cells. I usually give this around 7:30 pm before bed so I can comfort him and snuggle with him afterward because he hates getting these shots.
Once a month, Rowan receives a shot called Synagis, which helps prevent RSV in babies born before 35 weeks gestation or babies who have a chronic lung condition called bronchopulmonary dysplasia. Rowan checked both of these boxes and started getting the shots in November 2019. Because of Rowan’s weight, he has to get 2 shots each time and a nurse comes to our house to inject them. This is one of my least favorite things that he has to do. It’s so painful for him and I always just wish I could take the shots for him. March is our last month of this medication, thank goodness!
Every 4 days we change Rowan’s dressing that covers his dialysis catheter. During the dressing change, we use Gentamicin drops where the catheter enters his belly to help prevent infection.
Last, but not least, Rowan now has to get Human Growth Hormone injections once a day. We just got our first supply of the HGH injection pens delivered today, so we will be starting this tomorrow.
In the next few weeks, I will also be taught how to give Hizentra infusions, contain antibodies to help Rowan’s body protect itself against infection because his IgG level is extremely low. We have done 2 of these infusions at the hospital so far and they take around 4 hours at the hospital but will take closer to 2 hours at home.
Every month, Rowan gets blood work done to check his levels. Depending on the results, his nephrology team may change the dosages of some medications to keep everything balanced. When I first left the NICU with this long list of medications, I was so overwhelmed. I remember the pharmacist standing there with the list and huge bag of medicine bottles, explaining what they were and when to give each one. I don't think I really processed anything she was saying and had to rely on that list every day until one day I realized that I knew all of the names of the medications and the dosages of each one and when to give them. I now know all of these by heart and find it easy to adjust the dosage and timing if needed each month. I haven't had to look at a list or set an alarm in months. It's crazy to think that things like cholecalciferol, aranesp and ferrous sulfate are so familiar to me.
留言