Saturday, August 3, 2013


Post Fontan Day 16


As happy as that makes me I am scared to death. We still have a long way to go before I feel "Safe". Jacob still has fluid on his right lung. He is on three different diuretics so that will help him get the fluid out. It is just going to take time for his body to re-absorb the fluid. That being said my biggest fear is the fluid re-accumulating. It is not uncommon for kids to have to be readmitted for another chest tube. I am not trying to be negative or pessimistic and I am praying to God that we won't have to go back to a hospital but lets just say I am being very cautious and kind of feel as if I am walking on egg shells.

My job is to keep him well fed and well hydrated and pray the diuretics do the trick. We will be going to our local cardiologist on Monday and they will do a chest x-ray then. Hoping it shows improvement or at least doesn't show any signs of it getting worse. I also need to watch out for signs that it could be coming back like coughing, lower SATs, fussiness. I am also going to continue to do chest pt (Pound on his back with a little thing they gave me) to help break up the fluid. Please continue to pray the fluid goes away and doesn't come back.

Another thing we have to adjust to is all of the medication Jacob was sent home on. Before his surgery he was only on Aspirin and Enalapril. Now he is on EIGHT different medications!!!

Overwhelming doesn't quite cover how this makes me feel lol. I feel like we are Post-Norwood all over again. The Norwood was his first open heart surgery and he was on 8 then as well. Many of these will be weened off in the next few weeks to months. Here is a list of what he is on and when he takes it.

Lasix  1.5ml
Frequency: 2x/day
Type: Diuretic

Diuril  2.6ml

Frequency: 1x/day
Type: Diuretic

Aldactone 2.5ml
Frequency: 2x/day

Type: Diuretic
Zantac 2.6ml

Frequency: 2x/day
Type: Reflux Medication

Sodium 3ml
Frequency: 1x/day
Type: Suppliment

Cephalexin 6.9ml
Frequency: 4x/day
Type: Antibiotic
Last dose tomorrow

Lovenox Injections 9 units
Frequency: 2x/day
Type: Anti-coagulant

Enalapril 2ml
Frequency: 2x/day
Type: Blood Pressure

Enough to make your head spin, right? I know after a week it will be nothing and I will be in my routine but for now I am checking them 4 times before I give it to him and being super cautious. I have a med schedule they gave me but I need to go home and make it on my dry-erase board so I can easily keep track of what I give him each day. I feel better the more organized I am with this stuff. He was throwing up with the Sodium, like clockwork but tonight I gave it to him and he didn't. I am wondering if it was positional because he wasn't in bed. He was up and playing. I also diluted it with more water and used a bigger flush. I give it to him in his tube. The nurse said diluting it helps. He gets a lot of meds at one time so they said I can give them however works best for him as long as I space them right. I don't want to be giving meds 5x a day but I also need to give certain ones like the Sodium by themselves. That way if he does vomit the rest stays in.

Right now we are doing:
  • 8am: Lovenox, Lasix, Enalapril, Zantac, Aldactone, Antibiotic
  • 12pm: Diuril
  • 2pm: Lasix, Antibiotic
  • 8pm: Lovenox, Lasix, Enalapril, Zantac, Aldactone, antibiotic
  • 10pm: Sodium
  • 12am: Antibiotic.
Luckily the antibiotic will be gone tomorrow.  So that will help. Then he will just get meds 5 times a day lol. UGH. Oh well we have to do it and hopefully he can be weened off some in a few weeks to a month. I need to get in touch with Hematology in Cincinnati so they can be our point person on when to stop the lovenox injections. It will most likely be in about 3 months. I will discuss this at his doctors appointment on Monday as well.

Jake has been so happy since leaving the hospital. He is driving me crazy because he is running everywhere, climbing, playing basketball... pretty much trying to do everything he is not supposed to do. He will stop if it hurts but I still worry. The fact is he is a 3 year old boy so it is kind of hard to hold him back. It is also great he feels so well.

We are at the Ronald McDonald House tonight and will be leaving first thing in the morning to go back to West Virginia. Like I said earlier we still have a while before we can "Relax" and truly feel Post-Fontan but please continue to keep Jake in your prayers. I will update the blog after his appointments on Monday.

I have to say it is pretty amazing to look over and see both of my boys sleeping peacefully beside me. I am so blessed!

post signature

No comments:

Post a Comment