Well, things have been moving right along in the past few weeks! M got a heart on July 7. She came off the ventilator about a week later, was moved up to the Intermediate ICU for about a week and came home to the Ronald McDonald house with us this past Saturday. It has been a whirlwind. We are just starting to somewhat figure out the meds schedule, etc. almost a week later! I’ll give you an idea of our typical day:
At 7:30 a.m. we are supposed to take her vital signs – blood pressure, heart rate and temperature. Right now, we can only do the temperature part because our custom made blood pressure cuff and machine has not been delivered. This means that we have to go to the heart clinic at the hospital to have it taken. We did this three days in a row at the start of the week, but the cardiologist said we could take today off and go in tomorrow…take the weekend off and go in on Monday. It was nice not to have to get up and immediately leave the house this morning!
At 8:00 a.m., she gets the bulk of her medicines. Right now, she gets cyclosporin, cellcept, magnesium glutonate, a shot of lovanox (my husband typically does that), predinisone, nystatin (a mouth wash that keeps her from getting thrush) and pepcid. All of these have to be loaded into syringes and then placed in her feeding tube.
At 9:00 a.m., she gets methadone. This is temporary as she is on a wean from it right now and will be done with the wean in the middle of August. I also have her getting her 1/2 tab of baby aspirin, which needs to be crushed and then dissolved in water and given through syringe.
At 10:00 a.m., she gets lasix (a diuretic), enalipril (a blood pressure med), and iron. I could give these all at 8 a.m. too, but it just seemed like too much medicine all at once. This way, she at least gets a couple of hours to get the first stuff out of her system.
We are letting her eat on her own schedule right now, just to give her a bit of a break from the constant “messing with” she was getting at the hospital. So, we let her sleep until she wakes up crying and then we feed her. Sometimes it coordinates with her feedings, sometimes it doesn’t…so, we aren’t on a really tight schedule at this point. She will also sometimes go 4-5 hours between feedings, while other times she won’t even make it 3 hours. But, I feel like she needs some good rest, so the longer sleeps are okay with me.
As the day goes on, she gets more medications. She gets the methadone every six hours right now. She also gets the magnesium three times a day, so she gets more of that in the middle of the day. She gets a nystatin treatment (we put it on a little dental swab and swish it around her cheeks, tongue and gums) three times a day as well. At night, we do it all again starting at 8 p.m., but she gets septra at night as well as the meds from the morning, but no aspirin.
I have read different people’s ideas about keeping track of all the meds – color coding, etc. But, it seems easier to me to just have a daily schedule sheet where I check them off as I give them. I have it done hour-by-hour and we also record her diapers and her feeds and any other notes on the sheet. That way we have one sheet and we know what the other person has done. I think it will be helpful to anyone who comes in to take care of her in our absence as well.
We had our first clinic appointment on Wednesday. She had to go to the Short Stay unit to get a blood draw first. This is also where we will go on Tuesday when she gets her infusion of some other medicine that has to be infused. After that, we went to the heart clinic and she got a LONG echocardiogram (they were training a fellow on the machine and it took a really long time – longer than I remember taking in the past) and then we met with the docs for a short time. They said that everything looked good. They made a slight adjustment to her meds – up slightly on the cyclosporin, down a little on the predinisone (I guess she is being weaned off this as well…but, it will be a slow wean), everything else stayed the same.
We are constantly a bit nervous. I mean, its hard to know what is going on in a five month old. You can’t ask them how they are feeling or get any feedback from them. So, when she is fussy, we get worried. When she sleeps for a while, we are worried. Whenever anyone gets close to her, because of her immune compromise from the meds, we are worried. Its really tiring…but, its great to have her home.
She has her first biopsy on Tuesday and I THINK I will feel better after that is done as we will REALLY know the level of rejection she is in. The echos are somewhat indicative, but the biopsy will be more specific. And it will just make me feel better to know for sure.
Other than that, she is still having to take half her feeds through her NG tube, which is a little disappointing, but she’ll get better at feeding with time I’m sure.
Well, enough time spent typing this…back to the daily grind! A daily grind I am sooooo thankful for!