My life in the hospital

It has been three weeks today since we have taken up residence in the Santa Rosa PICU. We got readmitted to the hospital that Thursday during our follow up appointment because the left side of Gracie’s chest had fluid. We thought it would be as simple as pop in a chest tube for a few days and then back home. Yeah, not so much…she was up and down. Tuesday morning, she was okay, not great but okay. By Tuesday evening, she had really declined. She was in heart failure. They were finally able to get her stable by putting a central line and arterial line in…this was about midnight. By 6 a.m., she started declining again. She was breathing like a fish out of water, barely keeping her eyes open. She had that gray, pale deathly hue. She kept asking me to tell her The 3 Little Pigs over and over again. I knew we were at that point…the heart team wasn’t supposed to do rounds until after 9 when the whole team busted through the room…I knew from their faces it wasn’t good. They decided to put her on the ventilator to help lighten the heart’s load. It is a risky thing to do with a recovering heart kiddo but it had to be done to save her life. That was the worse day I have ever had in my life. As I write this account, I feel the tears forming in my eyes. Even though you have a heart kiddo and they are at a higher risk of dying, you just don’t go there. I never lost faith in God. I knew I had a great team of doctors. They were able to stabilize her by noon. They found more fluid on the other side and put in another chest tube and they also found that she had a blood clot in the fontan as well as in her right leg. They made me go home and rest. That was the second hardest thing I have ever had to do in my life. But I realized that I couldn’t do anything for her. I wasn’t going to be able to save her. I needed to let her rest and heal. I needed to rest and heal.


So, fast forward to 2 weeks later…she is off the vent (got off of it 4 days later)…she went through terrible withdrawals and is now being weaned off methadone. She had a PICC line for 10 day and it got removed yesterday. They have her on Coumadin but are trying to find the right dosage. She isn’t eating as well or not at all really so they put a tube that goes into her tummy and are now doing night feeds. We might be switching to another anti-coagulant medicine that has to be injected twice a day if we can’t get the Coumadin working right. She’s still on oxygen and she might be going home with it. She’s angry and frustrated about being stuck here. She is limited in going to the playroom because she has to be monitored (heart) and has oxygen. She is still sweet, charming and funny but you can see the weariness and wariness in my sweet girl’s eye. I’m trying to arrange play therapy for her to help her work through the major trauma she has gone through. I’m going to therapy to work through the trauma. I had been doing pretty well, feeling pretty okay when the rug was pulled out from underneath me. I stress over going back to work August 8th…will we be out in time? I only have 10 days to take and then I get docked. What happens if I get sick or she gets sick later on? Who will take care of her if we get out in time, she can’t go back to school just yet. The unknown is darn scary. I know we will survive but it would be nice to have some answers.

I am so ready to go home. I hate having to wear my clothes to sleep in. I hate having no potty in our room so I have to walk all the way to the waiting room to go. I hate the walk of shame, it really isn’t but it feels like that when you have to go potty like at 3 am with your hair messed up in the clothes from the day before. I hate not sleeping in the same bed as my girl and holding her all of the time. I hate that both of us have been changed and are wounded creatures. I hate that my baby is scared and has been traumatized. I hate the fact that there isn’t anything I can do to make it better. I hate that she didn’t get a summer vacation or get to recover with me. I hate that it’s going to be hard to transition back to home life if we have accessories like an ng tube and/or oxygen. I just hate feeling like our lives have been put on pause. I hate feeling like the world is passing us by.

On the plus side, I have met some wonderful people and have become friends with many of the doctors and nurses. I have seen them fall in love with my girl. They are her greatest cheerleaders and they adore her and lavish a lot of love and attention on her. I pray that in less than 2 weeks, we will be sleeping in our own bed and staying strong and healthy. My Gracie is my everything. I am thankful that God has blessed me with her. I know that He gives me only what I can handle and I know it’s for some purpose. I am stronger. It’s just how scary your life can change in a blink of an eye.

Ups and Downs

Recovery from the fontan has been a lot harder than the Glenn.  I had heard this was a tougher procedure but I didn't realize that also the recovery would be harder and slower.  We are sort of managing the pain with motrin and tylenol but when they start wearing off, you can tell.  She has not a lot of stamina and really isn't eating a whole lot.  She is eating pretty much rice and some eggs.  I've tried to get her to drink a pediasure a day but we aren't really successful.  She is incredibly stubborn...but that makes her the survivor that she is.  We're still working on the antibiotics.  I have to threaten with the hospital but then I also have to give the dose in halves because she'll throw it up.  She gets that anxious. 

I have been feeling a little house stir crazy.  It's hard because all she wants is me and is very high maintanance.  I get it but I finally got a break thanks to my parents.  I got a pedicure and the hour away made me feel like 20 times better...almost human again.  I think that is something you need when you have a big emotional thing like surgery and an extended hospital stay.  I think it is easier for two parent families to stay in the game emotionally and mentally because they can be spelled by each other.  Single parents have to rely on others but the problem is when your kiddo will not give you up.  It's tough but I'm thankful my parents gave the break at home and my bestie at the hospital.

We go to the doctor tomorrow.  Crossing my fingers that everything is good.  I think I'm going to address the pain issue with him.  We'll see what happens.

In the meantime, I'm going to post some of the pics from our Make a Wish trip.

Sesame Place & Surgery

Gracie, my mom and I went to Sesame Place near Philadelphia courtesy of Make a Wish.  We went right before Gracie had her surgery.  It was a blessing because during our tougher days after the surgery, we would try to talk about the trip.  I have pictures which I will post later  I have just been soo exhausted because of the surgery.

The Fontan was rough.  I don't know if it was harder this time because she was older or because I really knew her and knew how much pain and how scared she was.  It was an emotional roller coaster.  No big, scary moments like the first surgery where they had to bag her.  She got a feeding tube this time because she couldn't keep anything down.  We were also in the hospital longer because of the fluid coming from the chest drains was more than they wanted.  We had a scare yesterday when her fever kept spiking when the motrin was wearing off.  She had a rough night and we took her back this morning.  I really thought the doctor would keep us but he trusts me and so he took off one stitch in an incision that was bothering her and put her on an antibiotic.  She is doing better watching her new favorite, Snow White.  She discovered that in our 14 day hospital stay.  Ask me how many times I've seen it?  Like a zillion. But, it makes my girl happy when she's uncomfortable and that is my priority for her as she heals.  I'm hoping we'll continue with this positive progress but we are not out of the woods yet.  Keep those prayers coming.  We appreciate it and thank you.  Prayer is incredibly powerful and it has helped us through these rough couple of weeks.