Monday, June 30, 2008

A Day of Setbacks

If you have ever read the children's book "Alexander and the terrible, horrible, no good very bad day" you will understand how Elaina's day was today.

Today was a NOT a very good day. It all started last week with the issue of an "art line". This is like an IV, but goes directly into an artery so that they can draw blood as well as use it for fluids and medication. They also insert a sensor into this line to monitor her true blood pressure. Elaina had an art line in her right wrist that decided that it didn't want to work on Friday night. The doctor re-wired it and it worked okay, but only for a few hours. On Saturday, they tried to put an art line in her left ankle. It also only lasted a few hours. Then they finally got an art line to work in her right wrist, but it was very picky, and they had to be very cautious with the tension. When I got to the hospital on Sunday, the art line was gone. This morning on surgical rounds, the surgeons INSISTED that she have an art line for blood pressures as well as to monitor her arterial gases (how much oxygen she's really getting in her body). They can get a blood gas from a vein, or by a finger or heel stick, but these gases aren't as accurate. So the surgeon came and tried to put an art line into her armpit. (He tried both armpits) He didn't want to do a cut down (they will actually cut through the skin and tissue to expose an artery and once the catheter is in place they stitch it back together) in her armpit, so it was decided to send her to fluoroscopy (sp?) to see if they could get a picc line in. They had succeeded in getting an IV in her foot, so they injected some contrast to make sure that there was a vein that would work before poking her, but there was nothing they could find for a picc line. So they went back to the art line idea, and they finally got one inserted in her left groin. OUCH! Anyway, because of all the procedures, she was paralized and fully sedated for most of the day. This meant that all her ventilator settings went back up and we lost all the weaning that was done over the weekend. They are going to talk to me tomorrow about taking her back to the operating room to put in a broviac line. This is kind of like a picc line, but it lasts a whole lot longer and I was told that there is less of a risk of infection with it. We also found out that she was positive for C-diff, a bacterial infection in her bowels. It explains the fevers, and they started her on Flagyl a very strong antibiotic. One of the nurse practitioners told me that some babies are just born with this bacteria in the intestine, so who knows..... To top things off, the doctors are really worried about her profusion. They think that her oxygenation should be better at this point, so she had a sedated echo this evening. They said that the Glenn and the central shunt are open and seem to be working, but they also going to discuss maybe sending her back to the cath lab or for an MRI for a better look and to see why she's not more oxygenated. This is really discouraging for me. Things were looking up, and now this. Anyway, I need to get to the hospital early tomorrow so that I can be there for all the discussion and decision making. Hopefully I'll have better news to report tomorrow....

12 comments:

Isabella said...

Oh, it just breaks my heart that Elaina had a bad day.
Sending lots of prayers your way
Megan

Mike & Rebecca said...

Brinley had her appointment today at PCMC and while we were there we came by to see you, your post tonight explains why all the doctors and nurses were standing around Elaina's bedside...I'm so sorry for the step backwards today, hopefully things will get better soon, we're always thinking of your family.

Prayers,
Mike & Family
IHH-VP

Stephanie said...

These kind of setbacks can make you crazy! I'm thinking "All this for an arterial line?" It IS important to have info on pressures, though. AND it saves needle pokes for all the labs. I'm so sorry for your setbacks. I'll pray that this line stays open and functioning as long as she needs. Keep looking up.

Vanessa said...

Oh sweetie, I am so sorry you had such a rough day. It seems kind of crazy to do all this for an art line but we know how important those pressures are. Arianna didn't spend a long time on the vent so I can only imagine what your going through. Justk now my prayers are going out to you.

Vaeh's Blog said...

Oh, Hollie... so many prayers going up for you & Elaina. These set backs are so frustrating, especially when she was making such progress on the vent. She's just telling them she still needs more attention!

As for the art line being in the groin... Vaeh's have always been in her groin. With her first surgery, she had both her central & her art lines in the left side & now they can't get a line for a heart cath on that side. The artery is still good, though. She just had her art line there with the last open heart.

Praying that Elaina astounds them with her improvement & she is back to being ready to come off the vent soon!

Caden said...

I'm so sorry that she had setbacks. Hopefully they will get things sorted out and things will again start moving in the right direction. We are continuing to pray for you all.

Ashlea

Amber said...

I'm sooooo sorry! How frustrating for you and your sweet baby. :^( I am definitely still praying, I check your blog often.
hugs and prayers,

Colin's Blog said...

Oh so sorry to hear about Elaina's setbacks! She'll get there-Colin always had MANY setbacks after surgery. Colin has a horrible scar on his wrist from an art line gone wrong-a permanent reminder.

What a long road for you all. Prayers for moving forward and recovery.

Melanie & Colin

Jilian said...

I'm so sorry to hear of the setbacks yesterday. I was hoping and praying that there would be none. I hope today was a better day for you and Elaina. Evan had the groin line after surgery too. I hope they were able to get a better line in today. Evan had lots of re-do's on his IV lines and it broke my heart. I hope they get some answers on her sats soon.

Jill & Evan (TAPVR, PFO, PDA)

Kathy said...

Hollie...
Isaac had a broviac line put in at our last hospitalization...and it DID outlast all the other art lines. As a matter of fact, because he's such a hard stick, they let it stay in until 2 hours before our discharge (just in case)...
so....get the broviac!
and...don't worry too much if they need to do another cath or MRI...you'd rather them know the pressures and blood flows than just guess. Isaac's had 6 caths already...and his little veins are holding up just fine!

Try to stay strong...your princess is AMAZING...

How long has she been on the vent now?? Isaac was on his for THREE weeks...I thought I would GO CRAZY...but, she'll come off when she's strong enough.

we're praying for you guys.
Kathy

Anderson Family said...

You handle all of this so well. I would be such a mess. crying and such, I dont like having new pokes. I think you feel the same way. I'm sorry to hear all of the setbacks! I'll pray harder for her today and for them to get a line that will work and so she can get off the vent.

Hugs
Melynda and family

Gourley Family said...

Ryker had a broviac. I was not too thrilled to have him go to the E.R., but honestly was really impressed from it. They can go home with them. Anyways, hope she has some better days. That is frustrating about having her paralyzed. I would feel the same way. Seems like two step forward, on step back. Hang in there! You are amazing and so is Elaina!
Heart hugs, Emily