Tuesday, May 3, 2011

Noon update

Harlie seems to be doing okay. She actually got a few hours of sleep this morning. But for most of the night something was being done to her. I slept some - maybe two to four hours with some interruptions. At one point I woke up and could tell there was a lot of activity in the room. I asked the nurse what was going on and she said that her blood pressure was trending low. And her blood gases weren't great. And because of those things they have not given her any pain meds since a dose of morphine right after surgery. They don't want them slowing down her system anymore.

The plan right now is to give her IV antibiotics for the infection. Infectious Diseases(ID) have been called and they are going to come and talk to me about their plan for ABs. She will most likely get a PICC line (just like she got last year - which is like an IV so we can give her those strong meds from home). That means weekly dressing changes which totally sucks for her on top of all the pain she's been through. But I know that things could have been way worse, so I am counting our blessings.

Unfortunately, she will have to go back into the OR on Thursday for another irrigation and debridement procedure and cast change. So I really don't see us leaving before next week. I have no idea how long they will want that vac dressing (suctions out the goo from the wound) to stay and we clearly can't leave with that.

I will have to talk about this more later - but that doc we saw in Richmond on Saturday (along with his attending physician) is getting a letter from me along with the photo of her wound. He was deceptive in the way he communicated his title to me (called himself Ortho Chief instead of Ortho Chief Resident) which is very different. And I just found out he did the same thing to the Resident in DC on Saturday over the phone. So when the resident here in DC was talking to him he thought he was talking to someone with many more years of experience, so he went with his decision. There are so many things wrong there that I cannot leave it alone.

All in all, I think we will be here till next week for sure. Her wound has to start healing from the inside out, and the vac dressing has to be out before we can go home. I will be happy if we are home in time for Murphy's birthday on the 11th. I cannot believe he will be 7 years old! I really hope he and Cooper are doing okay. It must be unsettling (even if they don't show it) to see everything's fine in the morning only to get home and find Harlie and I gone for the next week or so. Sometimes I can't believe this is our life. It is so weird to feel so incredibly lucky and blessed but cursed at the same time.

Thank you for all your support. You might not know what to say - but just knowing we aren't forgotten makes a big difference in our spirits - my spirits especially.

Thanks,
Christy

13 comments:

Heather said...

oh no! not infectious diseases! I'm so sorry! and that Chief Resident should be fired. I think you should send a letter to the real Chief! that borders on totally lying. jerk. what can we do to help with birthday party planning? let's talk and take that off your plate. wish I was there with you!

paige said...

LOVE TOO YOU ALL!!! Im saying a prayer of strength for you guys.

Donna said...

I couldn't relate more to your blessed and cursed comment. I am so glad you went with your gut and took her up to DC. And I can only imagine the red you are seeing at the MCV dr. I hate hospitals and I hate that our girls have to suffer unnecessarily by the 'practice' of medicine. They go through so much on any 'ordinary' given day, its just not fair. I hope you are home soon.
Hugs to you and Harlie.
xoxoxo

Christamae said...

Bless you! I come to check up on you and find an awful situation. I am so glad that Harlie is getting treatment so she can feel better. I had an infection in my back wound after scoliosis, too,and had to be reopened and debreeded in surgery so if you have any questions just e-mail or message me on tracheostomy. Give Harlie a hug for me.

Christamae

Veronica said...

Christy,
I'm so sorry for all of this! I am praying hard that Miss Harlie heals right up so you both can get back home. Thank goodness it was caught in time.

Kristen said...

That MCV doc needs to get the boot! Or perhaps a potentially deadly infection in his spine would be more appropriate! In all seriousness, that is horrendous and I am glad you are writing a letter. I hope the doc who spoke to him from CNMC is going to write one too!
Hang in there! Thinking of you and Harlie so much!

Libby said...

Hi Christy - Haven't written in awhile but always check the blog. Please know you aren't forgotten - that's really important for your own well being while you and Harley go thru this. Once again your maternal instinct guided you.So powerful. Harley couldn't have a better mom!! Many prayers and love and concern for both Harley and you and all your family.

Anonymous said...

Just checking in on you all... I am so sorry you all are going though so much. Know that we are thinking about you all. Mike and Marcy

Heather said...

never ever forgotten. either one of you. that would be next to impossible! wishing you both some much needed sleep tonight.

Stacey Hasse said...

I am continuing to pray for Harlie and all of you. I've not had to go through nearly the medical stuff that you are dealing with right now and I cannot imagine how hard it must be. Harlie is one lucky girl to have such a great Mom watching over her!!! Sending you all hugs and prayers.

Anonymous said...

I can't believe that the dr would be so deceitful, especially when dealing with a case as complicated as Harlie's. I'm am praying for your little girl.

K

Grandma said...

Geema is here. Cooper and Murphy are fine..cooper ran right up to me and said "Geema"...such a cutie. My prayers are with you and if you are lucky enought to be home for party...we will all figure it out. just focus on Harlie and give her a big hug and kiss from me.

Michelle said...

Don't know who that ortho resident was...there is only 1 pediatric ortho attending at MCV - a female at that(she is Abby's MD). Definitely write a letter!!

Have been thinking of you and Harlie...