Let The Healing Begin!

Although we got some sleep, it was a rather restless night.  I'm still not sure if it was squaring away her pain management, her fever, or if it was her need to be snuggled.  I got her out of bed, tethered to her TPN and the oxygen cannula, the 02 sensor and all the other crap that we have to be very attentive to.  After a minute of that, the TPN pump starts roaring, a kink in the line or such.  The nurse, one I rather liked - btw, reset it, and helped me get set up to hold her in the chair.  Andi sleep in my arms for I don't know how long. I finally had to put her back into bed because I was so groggy, I was afraid I would drop her.  Just prior to this, the Kaiser nighttime team came by to check on her.  The Dr. for the night is the same one we had six months ago when we were here for the leaky g-tube / failure to thrive.  In any case, I told them that she was rather fidgety, as if she's in pain. She's not sleeping and she's trying to escape her hospital bed confines -- blankets rolled up to confine her to a part of the bed, trying to prevent the "rolley-polleys".  In any case, I told them that I thought I could hold her and that would resolve a lot... which it did.  The reason I bring them up is I got to throw my jab in to the Dr., 'same problem, different month, different year'.  It had to be said.  In any case, I addressed the need for O2 by posing a question. In the past, when Andi was here pre-heart surgery, she required oxygen.  They had said that O2 was a tricky balance with her, because of her heart defect, the heart was working really hard to do it's job pushing the blood through and dealing with the defects going on in there.  So, for Andi, O2 was sort of dangerous because it sent more blood to the lungs, and that made her body work even harder.  So, I brought that whole scenario up and asked about the need for O2.  I said I wasn't sure if that was still an issue now that the heart has been repaired. However, given there is still a slight leak in the left side, I wanted to make sure we aren't causing her body more grief.  They said they were working to ween her off, but, I will continue to remind them that. 

After awhile, Andi stirred again. The nurse came in an gave her another "taste" of morphine.  That stuff only lasts about an hour, so, for an hour she laid sideways in the bed, totally knocked out! So, we got some rest, although it wasn't like home, it was some rest.  Andi is coughing today, trying to get the junk out of her lungs.  We're putting drops in her ears three times a day, to help keep her new tubes happy, and we're supposed to put saline spray up her nose at least four times a day.  She's only on a .5 liter of O2, but we're hoping to get her off that today. She's currently sawing logs and I have the sign on the door trying to assure that people don't come in and disturb her if they don't really need to.  Lastly, our day nurse today is great too.  She's a chatty one, but I really enjoy her upbeat energy.

The surgeon team, the social worker, and nutrition came in this morning as a group, day #2.  I failed to really share yesterday's group meeting.  Yesterday, we had about 15-20 people in our room.  I was finally able to talk to the surgeon to find out what he wanted to do with the central line/tpn, rest stomach, do the g-tube "revision" in a few days, and go home on TPN.  He wants to continue to rest the stomach and let everything heal, before we start using the new site.  His thought process is to be really conservative with this new one, to make sure it has the best possible hope of success.  Hearing all of this though, especially after the horrid night we had, left me nearly hysterical in front of all of them.  He asked, 'what do you want?'  Of course, I used this as an opportunity to unload about all the things I wish Andi was doing right now that she just isn't doing - most likely because of this failed g-tube.  However, I regrouped and was able to tell the entire room that I wanted them to do their job and get it right this time because this is so incredibly hard on us.  That was yesterday.  Today, there were a few less people and they were able to see the usual me.  I asked a couple of questions, and was able to request that we have a solid pain management plan in place for Andi because we find that this recovery is much more difficult for us than all of last year combined, because she's a little person now - not a baby.  The surgeon said they're keeping tabs on her.  They are looking to take her in to do her g-tube "revision" on Thursday or Friday.  He said, 'more likely Friday.'  He wants to make sure she no longer has any fever (it spiked to 103 last night), and isn't coughing or have a runny nose.  After the group departed, the social worker stayed to talk briefly.  I remember her from the PICU, as she works there and this wing.  She told me that I'm a great advocate for Andi, that I'm doing a really good job! I said 'wow, thank you.'  She continued, saying that I'm really good about letting everyone know that Andi had a runny nose, cough, and yesterday morning, a low-grade fever.  As last night it turned into a full-on fever (103) and it was because of me that they were fully aware of all of this going on.  It was a nice compliment from a person who probably sees a lot of s*&t! 

In any case, Andi's fever is gone and she's been sleeping soundly for the past few hours.  Sadly, I've had WAY too much Starbuck's to join her.  Although, I may try regardless.  I need to give Andi a bath at some point, as she has iodine all over her chest, leftover from the surgery.  However, sleep is the best medicine at this point.  So, let the healing begin!