We are starting week #3 here. She is still on the vent. I am missing her terribly. Even though she is right here, I miss my playful, cuddly, sweet little girl.
The doctors did rounds this morning, and the focus shifted away from the trach to optimizing the next (and probably final) extubation attempt in a few days. Because she has required so much sedation and so many different meds for sedation, the challenge is to narrow down the eight different types of meds to three kinds (Ativan, methadone, and Precedex) in addition to weaning her down from those so when they try extubating, she has the best shot.
The huge catch-22 is that she still gets incredibly agitated when her sedation wears off. Partly delirious, partly anxious. But definitely agitated. In my mind, to call it a ‘challenge’ to accomplish being able to wean her down from sedation plus being able to keep her agitation down is an understatement. But that is the plan.
Today was the start, and she actually did better than she did yesterday. Yesterday, she had 7 doses of the paralytic and “on to the second page” of her as needed doses of sedation meds. Today, she has only had one paralytic since 7 am. I don’t know the amount of other meds she has needed today, but it has been pretty consistent. They are weaning down her fentanyl and versed drips and upping her ativan and methadone drips.
On a separate issue, she has developed pretty significant conjunctivitis (pink eye with a lot of goop). She has also developed a peripheral blood infection, so they started her on vancomycin today. Of course, when I hear “blood infection,” my first fear is sepsis. However, the docs all feel that this was caught very early so it should be okay.
They are going to place a PICC line very soon to help get her meds because her right femoral (leg) central line will no longer draw back blood. She can get meds through it, but they can’t draw from it anymore.
Dr. Bhakta came to visit Hannah and I today. He stayed for well over an hour, and it was wonderful having him there to talk with. I watched him when Hannah was getting agitated and needed more sedation, and he was just so good with her, putting his hand on her head and talking to her. He has also offered to help us find a medical team to accept Hannah when we transfer her to a vegas hospital in a couple of weeks.
Tomorrow is one day closer to an extubation attempt (my guess is on Wed or Thurs). One of the doctors mentioned a 40/60 chance of it being successful. Even with that kind of odds, I just still can not get excited about the possibility of it working. I hope, hope, hope it does. I would love to spare her the trach. I just am scared to get my hopes up.
Prayers for Hannah and that the extubation is successful and Hannah handles is well.
“He has also offered to help us find a medical team to accept Hannah when we transfer her to a vegas hospital in a couple of weeks.” Your Dr. B and Dr. R are amazing. I hope with them back in the picture that Hannah stands a better chance at extubation. Will they hold off if she doesn’t seem quite ready–to give her the best chance possible? Or is it extubation by Thursday or bust (trach)?
We’re still keeping you in our thoughts and hearts!
.-= Cristina´s last blog ..Question: So how *does* Cristina get so much done? =-.
I would suggest Dr. Vorha at UMC. They would put you in the PICU there would be my guess. UMC and Sunrise are the only hospitals that have 24 hour Peditric Critical Care Docs (and I would confirm that to make sure it is still true). I know St. Rose (in Henderson) and Summerlin both say they have PICU’s but they are not staffed 24 hours with docs and I really do not think they can handle a complicated kid. Good luck on the extubation! My V had way lower chances than that (they were basically just humoring me) and it worked just fine the second time. I would suggest VERY minimal stimuation for the first day afterwards. They put a sign on our room saying entry for purpose required written approval from the attending for each entry and shut the door. They can check vitals from the door. Adminster meds from behind her. Leave her in a dirty diaper all day. Just don’t mess with her. And make them let you hold her right away. They extubated DD under general anethesia and did the gtube at the same time. I was holding her when she came out from under the anethesia and I think that made a huge difference. Also, my DD was a tummy sleeper too and a very expereinced nurse told me it was OK to flip her over immediately after the extubation. I really think that made a huge difference with the agitation level! You have my number on facebook. Call me if there is anything at all I can do to help!