Saturday, March 23, 2013

Our 2 year no hospitalization streak has come to an end sadly.

We had a good run.  Ambrose is in the PICU.  He had been sick at home for almost 2 weeks.  The only exposure he had was at hospital appointments a few days prior to getting sick.  I try to be so careful.  It is so frustrating!
Two weeks ago Ambrose began needing more O2, having copious secretions, and having fevers.  Of course it was over the weekend.  By Monday, his fevers were gone so I was hoping he was on the mend.  He has weathered several respiratory illnesses at home the past 3 years, since we have had the ventilator and can give hime CPAP and pressure support.   He always takes a long time to get over something.  Progress is slow, but you see a few good signs and want to believe he is getting better.  I agonize over the decision to get a physician involved, especially since I believe that is how we got sick in the first place.
The other night when I got home from work (at midnight) Ambrose's nurse told me that he was desating while sitting upright and only tolerating laying down in his crib, despite xoponex and some bag breaths.  This was quite concerning.  I put him on his vent for the night and tossed and turned (as did Ambrose) knowing I would have to make a decision in the morning.  When morning finally came, Ambrose immediately desatted upon coming off the vent, despite the fact that he was lying in his crib.  I called his pulmonologist, who was at a conference.  Fortunately her secretary called her on her cell phone, she called me, then the PICU and made the arrangements.  I called 911, for only the 2nd time.  I usually try to transport him myself, but knew they could transport him lying down.  Rescue, Inc. did a great job with him and have just been wonderful to us!  He went to MY hospital, BMH, awaiting transport to DHMC.  Everyone there was great too!  After the obligatory few hr wait for transport, the DHART team came to transport him.  When moving him from the ER stretcher to the ambulance stretcher, Ambrose had a big desat and distress.  After instilling some saline in his trach he coughed up a huge, thick green mucous plug.

The PICU attending spent about 45 min with ultrasound looking for a good vein and using it for guidance in putting in a peripheral IV.  Poor baby had to have his arm taped to a board.  Needless to say, he did not like this.   I do appreciate the care that was taken to try to prevent repeated unsuccessful pokes.  
Ambrose had various cultures taken and was started on IV Zosyn and inhaled Tobramycin.  He had many seizures that day as he had missed some of his seizure meds during his hectic day.  It took 6 hours after he was admitted before they finally got meds for him.  That is my biggest pet peeve.  It should not take that long and that has always been my experience there.
Anyway, my darling did well, grew essentially normal flora and was able to come home Sunday afternoon (2 days later).  It seems that the plug was the source of much of his distress.   His WBC count was elevated at 18, indicating infection but cultures were normal.  He went home on antibiotics.
He is feeling so much better.
Thank you to everyone who kept him in their thoughts and prayers!  And thank you to all the medical personel who cared for him along the way!