One Step Back, Two Steps Forward

Her amazing surgeon, Dr. Starnes...

taken from the halls of the new CHLA hospital

Sunday was a big day for CHLA - as I mentioned before all patients were moved to the new adjacent hospital.  Love the new place!  We intended to use the day as a break from the daily hospital life and have a bit of fun.  The day just didn't go as we planned though...

 We started the day off in a fantastic cheese shop about two blocks away.  We sampled gourmet cheese, cured meats, olives, breads and picking out our picnic fare.  As we were wrapping up the shopping our nurse called to let us know that Zoe did great during the transfer and was doing well.  She then went on to mention that there was an infection brewing in her chest.  They didn't seem to concerned and put her on new antibiotics.  

Of course this was not the news we wanted and were unsure how to feel about it.  I was in a panic and felt I could not go on a picnic unless I saw for myself that she was doing fine.  We went over to CHLA to check on her but only one of us was allowed to go up to her room since the move was still underway.   I went up and to my relief she looked great and was alert.  I had a small discussion with Dr. Epstein who put me at ease and said to go enjoy our afternoon.  Of course that is easier said then done.

After that blip in the day, we went out for our picnic.  Our intentions were to go to Griffith Park to wine and dine then head over to the observatory.  Well, the park was not all that great at all so we drove around and around looking for a suitable spot.  Nothing.  Then we drove up to the observatory and was it ever so crowded so we skipped that too.  Then we headed over to another few streets close by that were to have parks and great views of the Hollywood sign - eh nothing to really stop at and picnic.  By this time we had wasted several hours driving around and then it hit me... I forgot my pump bag and was way past schedule.  Quickly the day was just going no where and we were getting frustrated.  We head back to the Ronald McDonald House to grab the pump bag and then back up to Griffith Park.  We gave in and found a semi-grassy spot and quickly dined while listening to a drum circle.  Right off the bat I knock over my first glass of wine, a special wine we have been saving.  Anyways... it was not a perfect day at all.

That evening we head back to the hospital to spend some time with Zoe since it was now open to all parents.  The RN came in and removed a clear film that was covering her stitches.  We quickly learned that this film was what was holding her chest closure together.  What a bummer because the antibiotics were working and her cultures came back negative for infections.  There was talk of reopening her chest to clean the wound and put in new stitches which was pretty upsetting.  Poor Zoe has been through so much already, I hated that she'd have to go back to the OR and be paralyzed and sedated again.

On to Monday...

Dr. Starnes had come by earlier to check on Zoe's chest and decided it was in her best interest to reopen the sutures and perform a wound cleanse then put in new stitches.  The upside was that they were going to also take out the RA line (a central line running directly into her right atrium), the pacing wires, and the final drainage tube in the center of her chest.  They were also going to put in another PICC line in her left arm and hopefully remove the one in her right arm.  Again we had to sign those awful consent forms.

Zoe was doing so well - I felt just awful knowing that she was going under again.  She was so alert and responding to us.  Her little legs were all over the place.  We were so thrilled that she was first given some pedialyte though her NG tube (feeding tube run through her nose to her stomach) and then some breast milk!  On day 14 she finally received some REAL food!  

And today, Tuesday...

We arrived at the hospital midmorning to spend time with Zoe before they took her back to the OR.  I was struggling with what was to come since she was so active with me.  I just felt horrible and helpless.  

Zoe went in for her wound cleanse and PICC line at 12pm.  I could hardly contain myself as I watched her be wheeled down the hallway.  It is just really scary sending your 15 day old baby to the OR.  The whole ordeal lasted just over an hour and went very well.  We are so pleased that her RA line, pacing wires, and drainage tubes are out of her chest.  Soon after she was settled back in her room she started waking up and just watching us.

The next step is to extubate her.  The respiratory therapist is already weaning her off the vent and the plan is to try to remove it on Thursday or Friday.  I realize her voice cords are going to be sore and she may be really hoarse or unable to make much noise but we cannot wait to hear her squeaky cries again.  In fact, she can cry and scream all she wants - we deserves to tell us how she feels about all of this.

It has been 8 days since we last held Zoe.  I am itching to pick her up and hold her tight, hopefully this is in the near future too.

Here she is all patched up and tubeless!  Much better compared to the pictures of the previous post.

All stitched up!  RA line, pacing wires, and drainage tube removed!

Mommy vent... as I write this I am being tortured, ok Zoe is, with trying to put in an IV line.  Two hands failed, foot failed... they said if they cannot get her veins in an arm or foot they'd put one in her scalp.  MOMMY IS NOT OK WITH THIS AT ALL.   I am about to put an end to this.