Thursday, August 15, 2013

Home and LOVING IT!

 As you can see, they worked.

I am sorry I have not updated the blog since we have been home but we have been busy. Jake is doing AMAZING. He is pretty much back to normal. Happy, playing and pretty much pushing every limit and restriction he was sent home on lol.

As soon as we got home I set up my command center. 

Anyone who knows me also knows that I do better when I am in control (I am a serious control freak). Jake being sent home on all of those medications made me feel pretty uneasy but as soon as I set my board back up I felt so much better. I only really needed it for the first day or two but still it makes me feel better to have it lol.

We have been pretty busy with appointments since we have been home. Last week we had 2 chest x-rays, blood draw and two cardiology appointments. When we left CHOP Jake still had some fluid on his right lung. They increased his oral diuretics and we were able to come home. By that Monday the chest X-ray showed almost no fluid! It could be the added diuretic but I think it is because he was happy to be home and out of that hospital bed.

The X-ray on Friday looked even better. There was no fluid! Yay, now lets hope it doesn't come back. We went back to the Cardiologist today and the X-ray still looked awesome so we were able to get rid of one of his meds! Diuril is now cut off that long list pictured above. If things look good on the X-ray next week then he can drop the Aldactone and Sodium and the Lasix can be cut down to two times a day. That would mean we would be down to only 4 medications a day. We are headed in the right direction! We have to slowly ween off of the diuretics to make sure the fluid doesn't start building back up.

Jacob's oxygen levels are still hanging out around 85. This is normal. It could take 6 months to a year for his fenestration to close and the oxygen levels to get up into the 90s. If in a year they are still low then he will need to have the fenestration closed through a Cath. Hopefully that won't be necessary and those numbers will start to go up on their own. Either way it is not something we need to worry about right now.

Jake is back to his crazy 3 year old self. He is still technically healing yet you would never know it. He is climbing on everything despite me telling him he isn't supposed to yet lol. I woke up the other day and he was in my bed. He climbed up on the table next to my bed and climbed in bed with me while I was sleeping. SERIOUSLY JAKE. A few days ago I looked over and he was trying to go down his little slide on his belly. I ran over and grabbed him and he started laughing at me. He may be driving me crazy with worry but it is so awesome to see him back to normal. A smiling, happy rambunctious three year old boy. He amazes me daily.
I will try to write again soon but as always no news is good news. If I am not posting that just means we are living life and enjoying every minute! 


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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!

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Thursday, August 1, 2013

Another day hanging out in the CCU...

Post Fontan Day 15

Jacob's chest x-ray looked a little better today, YAY! Not too much to report other then that. All of his labs look good so they don't need to stick him tomorrow... double yay! Today he was on oral diuretics only, no IV diuretics. If his X-ray looks the same or better tomorrow then we may be able to go you know where. It is all riding on that. I am a little nervous because he has not drank as much today and is not peeing a lot. I have been trying to shove the sippy cup at him as much as I can lol. If it looks any worse then we will be stuck here the weekend so praying it looks better. People have been asking me all day if we are going home tomorrow. I am so afraid to jinx it. His cardiologist came by to see him this evening and Jake was driving all around the cardiac unit in a lightening McQueen car. He said "Looks like he is ready to go home". I just replied "We would love to, fingers crossed".

His buddy Sophia went home today and we seem to do everything at the same time so maybe that is a good sign. Another little boy who was here for the Fontan and went home last week came back tonight because of the fluid. It scares me because I know it can come back anytime and he still has some but I know they won't send him home unless they are sure. The fluid will take a while to reabsorb and he will be on diuretics for quite some time to make sure it stays away. If we do go H_____ tomorrow then we will go in for a chest x-ray at our local hospital on Monday morning. We will have to do a lot of follow up to make sure we monitor the lungs and fluid. 

Jake is beyond ready to get out of here. Tonight he literally tried to jump OFF his bed. He gave me a sly grin and I noticed his legs were hanging off the bed and he was scooting off. I ran over to catch him. I have since lowered his bed as much as I could and warned all of the nurses that he is crazy lol. He has been out of bed and running around most of the day. He just looks awesome. Love my boys so much.

I hope to write tomorrow from my own home but we will see what the xray shows. Until then here are some pictures of my little monster from today. Enjoy.

Laughing with a mouth full of food!

Super Aidan!
Looking for a way to escape.
Crazy Man behind the wheel :)

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