Friday, August 1, 2008

It's a Rocky Road

I apologize for not posting sooner, I really intended to and tried--but I was so tired last night that the few first sentences didn't even make sense so I thought I would just wait till this morning.

First of all Thursday night we got a special treat, one of the attendings came in and said that she heard we wanted to hold Grace and she didn't see why we couldn't hold her all the way. She told us that this wouldn't be a frequent thing, but that it was about time (3 weeks since we held her) and would be good of us and Gracie. It was quite the process of moving her into our arms and once she was there neither of us wanted to let her go--but unfortunately we had to put her back into her bed.

Because I only got a couple of hours with Grace I headed up to the hospital quite early. When i got here I found out that we were at full feeds on the feeding tube, the nutritional supplement was being weened down and would be off shortly, her methadone was being weened down and she was given an oral heart medicine. In addition to all of this the doctors felt it was necessary to put the wound vac on her chest to help with the healing. It still looks terrible--she is a long way from the tissue and skin repairing and healing.

Anyways, around 11am wound team came and started debring and cleaning the wound. I tried to stay and be at Grace's side, but didn't last very long. So I left to go pump and eat some lunch, when I returned the Attending and Fellow, including both of her nurses were standing around her bed. Grace's blood pressure had dropped and her CO2 levels were really elevated and her PO2 levels were slowly falling. It seemed like they tried everything to help her and nothing really made a difference. They tried giving her some extra fluid, which she normally would respond to, but didn't. They turned her methadone back up and even started her back on dopamine and her blood pressure didn't even budge. They even got a second dopamine to make sure something wasn't wrong with the first one. The only time her blood pressure went up was during the Echo or when one of the doctors would press on her tummy momentarily.

I eventually turned to her nurse and asked her how scared should I be and her response, because I didn't want her to sugar coat it was that she was scared. What a roller coaster ride to think that thinks are going fairly ok and then to hit such a rocky patch.

At around 9:30pm they eventually got her blood pressure to be steady with a mean of 45 (still lower than they want, but better and they were willing to take it). So now we are just watching and waiting. There are many other things they are concerned about--her edema is a big thing, she is so puffy that even her little ear is tripled in size. We are wondering if maybe she just has to pee all the fluid off and she will improve with less pressure on her lungs and heart. But she doesn't pee when her blood pressure is low so it is a very hard place to be at. They've reinserted a catheter to hopefully help her pee better.

She is also developing a fever which could mean another infection so they started her back up on two more antibiotics (she is on 4 again) and they are concerned about one of her heart valves leaking and two blood clots that they have found on her heart that they are watching. My poor Gracie, she is having such a rough time, but is hanging in there and being so strong. Please keep her in your prayers, she needs extra strength and support and just miracles to get her to a better place.


Hollie said...

I am so sad to hear that Grace is having such a tough time with all of this. She is so beautiful and I know how difficult it is to stand by and feel so scared and helpless. You are all in my prayers, I will add Gracie (and you and Jason) to my fast tomorrow. Please let me know if there is anything I can do for you, even if it's just a listening ear. I'm still in bed 17. (Elaina took a step back too)

Hollie (and Elaina too!)

Gourley Family said...

Deanna and Jason,
Its Mike I can't even begin to tell you how sorry we are for you guys right now. This is one of the hardest times to be a parent. We are praying for you guys and gracie. I know everything will work out, Gracies a fighter!