Sunday, September 17, 2006

By popular demand

I've had a few requests regarding previous posts and general questions, so I'll try to knock them all out here.

  1. Posting comments: I finally figured out what was wrong. I've never used before, and didn't realize there was a setting I could change that would allow anyone to publish posts without "logging in". Sorry to those of you who previously tried to post and had problems. It SHOULD be fixed now. Let me know if it's better.
  2. Contacting us at the Hospital: We're in the PICU for at least 3-4 more days (most likely through Friday). When in here, we don't have access to our cell phones, so if you want to reach us, please call 434-295-1885. We're in room 87. If not in here, you can reach us on our cells. Please don't send mail here, as we don't expect to be here much longer!
  3. Why the Ronald McDonald House sucks: I've had a few requests for an explanation on that one. The McDonald house is a great concept - giving parents and siblings an inexpensive place to stay when sick kids are in the hospital for extended periods. Considering most hotels here are ~$139/night to be close to the hospital, the cost adds up quickly when you're here for a month or two. Unfortunately it's the implementation that is terrible. Some families staying in the house have kids with colds that they allow to roam freely to spread their germs. You have to clean your room and shared bathroom yourself - but most of us are there to sleep, shower and leave. There's shared everything - kitchen, the 3 tvs in the house are shared by 16 rooms of people (most have at least 2 per room). The hours for various activites are not condusive to the families staying there. For example, there are laundry facilities available - from 1 p.m. to 8 p.m. Visiting hours at the hospital are 9 a.m. -9 p.m., so most families are at the hospital during those times. Duh! "Quiet hours" are 9:00 p.m. to 8:00 a.m. There is one computer in the house for internet access. It can be used between 10:00 a.m. and 9:00 p.m. Most of the time, however, the staff forgets to put back the keyboard/mouse that they take away during night time hours, so there's no access. The rooms consist of a bed, chair, picture on the wall, mirror and a nightstand. No dresser. No TV. No radio. Nada. So you can use your room for sleeping, but have no desire to use it for relaxation. The bathrooms are shared. I won't go into details as to why, but this is not fun for a post-partum mom - and many of the families there have premies/newborns in the hospital. There's a "gameroom" and "playroom" for kids, but the toys aren't very sanitary looking and I don't like Katie playing with stuff the sick kids have slathered with their germs. There are "rules" galore - no drinks in your room (this is great, again, for post-partum, nursing/pumping moms), no food/snacks in your room, wash your towels every two days, take out your own trash, clean the "shared" bathroom every time you use it, etc. My favorite rule is that you can not turn on the washing machines yourself - you need to ask a manager to push the button for you. I was reprimanded for that one on one of my bad days and, needless to say, that manager got an earful about what I think of their "house rules." Personally, I had a hard time with it because I don't like to "share" the experiences we're having with others. Everyone likes to talk to each other in the communal kitchen - how sick their kids are, bad days, good days, how to handle the "outside" world while here, etc. I just don't want to. I want to go in, get my peanut butter sandwich in peace, and leave. I've discovered I'm a very private person about this stuff - I do better writing about it than talking, and I don't want to share my day-to-day coping (or lack there of) with strangers. The McDonald house is a great idea - but like many great ideas, its implimentation kills its value. We've found a reasonable rate at a hotel that's 2 miles from here that we're "moving" into tomorrow, and I can't wait. So, that is why the McDonald House sucks, thanks for asking. :)
  4. The type of surgery Sadie had: Sadie had an arterial switch operation. There are older methods out there (Mustard/Aortal Switch), but this is the newest one and, they believe, the best "fix" available. Basically, they cut the aorta and pulmonary right above the valves and switch them. Then they cut buttons around the coronary arteries (which are only 1 mm in diamater and supply the heart with the blood it needs to function) from the aorta and attach them to the pulmonary vein. The coronaries carry the biggest risk in this surgery, as if they are kinked or damaged in any way, they can lead to cardiac arrest. With Katie's she also had to have the ductus (the vein going from one side of the heart to the other that infants use to oxygenate the blood prior to birth) tied off as it had been kept open with the use of prosteglandins to ensure additional circulation prior to her surgery. She also had her ASD (the hole between her atria) covered with tissue from a donor. She, of course, had to have a lot of blood transfused during the surgery to prime the heart/lung bypass machine. Her VSD (the hole between her ventricals) did not end up having to be plugged as it looked small and muscular, and will most likely repair itself over the next several months. They did not have to do the preventative dialysis tube as they had discussed with us, because her kidneys began to function pretty well in the 24 hours before surgery. So far, the kidneys still look great! So, there is a lot that is in Sadie that was donated from others. Which reminds me to remind you - if you are can and willing, please give blood and register as an organ donor! The gifts from others of blood and organ donation have saved Sadie's life.
  5. Meds she's currently on: I have no idea why some of ya'll keep asking about this, but will answer it in one swoop so I don't have to reply to as many emails (yes, I'm lazy at this point!). Sadie came back from surgery only on Epinephrine (for blood pressure) and Fentanyl (for pain). Since being back they've added Milrinone (improves the heart's ability to pump blood to the body by increasing Ca), Potassium (which is being deplenished by the Lasiks) and Lasiks (which makes her pee, to rid her body of the build up of toxins and fluids). She occassionally receives bolsters of Fentanyl (she's at 4 mcg/kg/hr on drip) and Versed (to calm and reduce bp when it skyrockets). They will be weaning her from the Fentanyl in the coming days and slowly replacing it with another class of pain killer. There are withdrawal symptoms that are highly likely with the Fentanyl wean, as she's been on it for almost 2 weeks.

So, there you go, your favorite questions answered. Fun stuff.

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