Friday, October 1, 2010

Another update

Thank you all for continued prayers for us.

It has been a productive day that was made even better by my friend Carla who came to visit. Apparently, Carla and I have one major thing in common. Food. No wonder we are both a good 100 pounds over weight! ha! It was nice to have someone just sit with me, laugh with me, and give me some normalcy. It's amazing what a little non medical talk can do for a heart mama's soul! Thank you, Carla, for taking time out of your color coded days to come and spend a day eat with me. haha! (I actually got out of the hospital for almost 4 hours today because of Carla- and thankfully we had my favorite day nurse today which made it so much easier to get out. Thank you favorite day nurse- I know you read here!)

I have reached a place of resolution with my social worker in regards to a place to stay. We were able to chat for a bit, and work some things out. I still say the sooner we are out of here the better. I hate having to fight to stay close to my child. I hate having to put the nurses and the social workers in a tough spot with tough decisions to make. I'm glad we came to an agreement, found common ground, and were able to come to a comprimise that I hope both of us are happy with. I hate to be as fiesty as I was, but sometimes I just have to be.

I also had a good chat with the chaplan today. She came in for almost a good hour and allowed me to dump on her. I think I'm doing pretty well considering everything I've been through with Joshua over the past 6.5 weeks 8 months. I also realize when I need help and am not afraid to ask for help, and I'm not afraid to admit that I have some PTSD and anxiety in relation to Joshua's life. As a nurse said the other day, I have "spent Joshua's entire life from pregnancy until now, expecting the worst and hoping for the best." It's so true- at 11 weeks when I thought I was miscarrying and was told that we would lose Joshua before 18 weeks all the way through the HLHS diagnosis. It has been a constant state of worrying about the death of my sweet baby. I felt like it was a good conversation with the chaplan. Talking about all of our stresses It's also a good reminder that God truly does give us more than we can handle.

Lastly, Joshua had about an hour long spell of heightened respiratory rate, heart rate, and oxygen sats this evening. He spent almost the entire portion of the early evening with a heart rate of about 160, respiratory rate of 100, and O2 sats in the high 90's. Naturally I was freaking out, but once again, our nurse was a calm and rational voice in the midst of my freaking out. She has been such a comfort to me and when she is here, I know Joshua is well taken care of. She is such a patient/family advocate and I admire her fiestyness when it comes to what she feels is best for us. Not to mention that she has become someone that I consider a friend. I'm thankful that she was calm in caring for him and reassured me that she would make sure the night nurse knew to keep an eye on him. Thankfully, since I've been back after shift change, his sats have been lower, as well as his respiratory rate. Lets just pray that he continues to stay there.

Pray for a restful night for Joshua. Pray for no more nightmares for me- I had a really scary one last night that I woke up completely freaked out about. Pray for the nurses as they continue to care for Joshua.

Good night!

5 comments:

Hope's Blog said...

More prayers coming your way. I really hope you have a restful night...along with Joshua.

Stefenie said...

Just read your latest fb update before I checked this. Saying many prayers for all of you Jill. I know it's been a tough fight from day one for you but you are STRONG! I know you are tired and weary but I have faith that God will provide just what you need to handle whatever He throws your way.

heterotaxy said...

Thinking about you and your family. I am just about to go thru this myself. What hospital are you at?

Paula B said...

Jill, I am so glad you had the right people with you at the right times yesterday. It was good for you. I keep praying for you, my little Popeye aka Joshua, Shane, Caleb, and Hannah. God is good and with all of you all the time. Love you guys!

Carla Sue said...

Glad to eat with you... :) I intend to color code it so I can come again soon!

 
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