Day 24 (plus recap of days 6-10)

So today is day 24 for little Miss Lily.  They have been monitoring a pleural effusion (fluid around her heart) for the past several days and so far it is unchanged.  Since it isn't getting any bigger, they are just going to continue to monitor it.  Her blood gases have been great for several days so they decided to wean some of the pressures on her vent this afternoon.  The first blood gas following that wean was good.  They are going to leave her at those settings for a few hours and monitor her blood gases to make sure they stay right where they should be.  If her blood gases remain in normal range then they will probably do another wean tomorrow.

She is continuing to have fluid output from her chest tube (that was placed there after surgery) so I can't hold her just yet.  I am really ready to hold her because I haven't been able to yet!  Her pain is getting more under control.  For the past few days since surgery she has required extra doses of morphine.  For the past 24 hours she has not required any additional morphine.  I am so glad that her pain is finally more under control.

Overall today has been a great restful day for my baby girl.

So now for a recap of days 6-10 (I will get this caught up)

Day 6 April 5, 2012 and ECMO day 4
She was very active today and would open her eyes when you talked to her.  She is still quite puffy from being on ECMO but it is starting to resolve since they started CVVH (dialysis).  She had a head ultrasound to monitor bleeding (one of the possible side effects of being on ECMO).  Apparently at birth (possibly), she had a grade one brain bleed.  They saw it when they did the initial head ultrasound prior to placing her on ECMO.  The brain bleed is resolving and there aren't any new bleeds.

She also had an Echocardiogram to figure out if she still had pulmonary hypertension.  She still had PPHN so she will be on ECMO for a while longer while that resolves.  We were also able to see her ventricular septal defect (VSD) which we didn't know she had until after she was born.  With PPHN, the blood in the heart wants to shunt and not go to the lungs so the shunting has actually made the VSD larger.  Hopefully once her PPHN resolves, the VSD will get smaller and that won't require any additional surgeries later.  She also started receiving breast milk swabs every 3 hours to get her used to the taste and give her antibodies.

Day 7 April 6 and ECMO day 5
Lily was very restless today and was easily agitated.  Her morphine dosage had to be increased and we had to minimize how much stimulation she received.  Her white blood cell count was slightly elevated but that will be monitored closely.  Her lung x-ray looked unchanged from the previous day so she still needs help getting her lungs to open up.

Day 8 April 7 and ECMO day 6
Her white blood cell count was still elevated but the marker used to indicate infection (CRP) was not elevated to a point that would show she has an infection.  Her PICC line had to be removed because they think it has infiltrated.  They think that may be the cause of her increased agitation yesterday and may have caused the elevated white blood cell count.  They also think that this is causing the inflammation in her chest.  CVVH has pulled fluid off of her everywhere except for her chest.  When they tried to pull additional fluid off to decrease the swelling in her chest, her limbs became too "dry".  Once the PICC line was pulled she actually allowed the respiratory therapist to do her lung "exercises" without getting upset.  By the evening, some of her swelling had gone down and she was much calmer.

Day 9 April 8 and ECMO day 7
Lily rested today.  They tried to put in a new PICC line but were unable to find a suitable spot (she is a notoriously bad "stick").

Day 10 April 9 and ECMO day 8
Lily had another nice restful on ECMO.  Her blood gases continue to be good and they were able to turn down her "flow" (amount of support) from 90% to 60%.

Tomorrow I will post about Days 11-15 which were filled with big changes.