Recovery going strong

Muriel continues to astound and amaze.  I really expected that we wouldn't see much change for a few days as she stabilized after surgery.  But here we are just 30 hours later and she has already accomplished:

• Ventilator oxygen from 60% post-op to 21% (normal air) while holding her oxygen saturation levels
• Pacemaker "half" off, where it is only pacing her ventricular beats at her normal 130bpm
• Naval "central line" (arterial tube where they were drawing blood for tests) removed
• Epinephrine drip eliminated
• Nutrient fluids restarted (sugars, lipids) with blood sugar levels back to normal (from 400 post-op!)
• Swelling reduced and fluid balance nearly zero (she is still taking in slightly more than she is peeing)
• Reduction (by half?) of the sedation drugs, which should allow her to become more alert tonight

Removing the naval central line

Plans for the night staff include eliminating the Nitrous Oxide mix in her ventilator and perhaps reducing the ventilator rate - to allow her to "breathe over" the ventilator rate unassisted.  There is some talk of having her ventilator tubes removed on Thursday.

Grandpa visits from Dixon

My father and stepmother drove in today from Dixon and had a nice visit with Muriel, Megan, and I.  As with the NICU, we can only bring one visitor at a time into her room.  My father recently had heart surgery himself, so they were able to compare scars.  Hers is smaller.

I've been badgering the poor nurses all day with technical questions about how the equipment works and what the sensors and screens represent.  Megan finally told me to leave them alone and save my questions for the doctors!  They have all been extremely helpful and tolerant, though, and even brought me zeroxed pages from textbooks and marketing materials :)  I'll have the ventilator running Linux by tomorrow, surely.

Some schooling on electric signals in the heart

In a nutshell she is recovering at a rapid pace, showing what a very strong little girl she is.  We are very proud of her, and cautiously optimistic as she gains strength.  We still have absolutely no idea what it will be like to bring her home and take care of her without this army of super-beings at her bedside with us, but I am sure it will become clear soon.  I think they are being careful to keep us focused on what is happening in the present so the long term plan can unfold on its own.  One day at a time!

The first 24 hours

Other than pumping every few hours, Megan and I were able to get some sleep last night, and I am here this morning in Muriel's room feeling much more rested than I have in the past week.  She is sleeping now, but apparently through the night she was often awake, eyes open, and comfortable.  Someone decorated her last night :)  The bow looks very pretty on her!

Her swelling already peaked this morning - the above pics are on the downswing.  When the doctors came by for rounds a few minutes ago the first question they asked was "where is the swelling?!?".  She seems to be the perfect recovery patient.  When I arrived she was actually off the pacemaker already, and the Heart block (expected after this kind of surgery) seemed to be gone.  Unfortunately around the same time they took off the pacemaker her lactic acid levels rose, so they started it again while trying other things to reduce it.

The top trace line is the heart rate, and the funky pattern is the result of the pacemaker

They are starting diuretics (furosemide (Lasix)) today to reduce the fluids in her tissues which will also help the lungs and hopefully get her off the ventilator in the next few days.  All of her blood gases are looking perfect right now, including her CO2.  They are convinced now that the surgery has improved her blood flow in a way that has made the CO2 problem go away.  Excellent news.

I just asked the Cardiologist (Dr. Melissa) what challenges we are working on this morning, and stumped her!  Basically everything is in normal ranges right now, and there isn't anything they are working on to resolve.

Cardiologist Dr. Melissa Nater

We got casts of her hand and foot yesterday just before surgery, and the finished product arrived this morning.  So cute!

In recovery

Muriel is now in recovery and resting calmly.  She is still getting sedation drugs (Versed, Fentanyl) and probably will for the next few days as she gets through an initial stage of swelling and fluid retention.  Although it was not expected, her CO2 levels have dropped to normal levels immediately (from a high of 60% to 35%).  She has lots of tubes and wires connected right now, though they should start disappearing over the next week.

Muriel just before an EKG

We were told, somewhat sternly, that we should take tonight to get some rest ourselves.  It is very hard to tear ourselves from her bedside, but the advice is sound and we came back to Ronald McDonald house to get some food and try to get to bed a bit earlier tonight.  She has a dedicated 1:1 nurse for the next several days and a team of people that will be watching all of her many statistics continuously.  Of course there is nothing we can do right now and she is sedated anyway.  Much more important for us to be around later when she is alert and feeling better.

Nurse Brian - "Get some rest!!"

Here are some pictures of our amazing world-famous surgery team.  Dr. Ilbawi is one of the reasons we are at Hope Hospital and we are very fortunate to have him leading our case.

Dr. Ilbawi

Our mood is so very positive tonight - a 180 degree turnaround from the anxiety of this morning.  Thanks to all for your well-wishes all day today.  We still have a number of hurdles to clear, but for tonight we are happy to have cleared the first.

Mid-surgery

Getting updates from the surgical nurse as the surgery progresses.  Her first update was basically to tell us that all prep was complete and that surgery was beginning.  She came in again about 30 minutes ago to say that the basic operation is complete, she is off the heart/lung bypass machine, and is being monitored for another hour at least.

Today's surgery consisted of:

• Closing (permanently) the malformed tricuspid valve
• Widening (permanently) the existing ASD (Atrial Septal Defect) , to allow the oxygenated flow from the lungs to bypass the now closed tricuspid valve
• Banding the Pulmonary Artery to regulate the blood pressure in the lungs.
• Leaving (permanently) the existing 6mm (!) VSD (Ventricular Septal Defect) , to effectively create one large pumping chamber
• Connecting leads for use with an external pacemaker, in the case that she shows signs of Cardiac dysrhythmia

All is complete, and the monitoring is to ensure that the band on the Pulmonary Artery is correctly regulating the pressure to the lungs.  They may have to adjust it (tighter or looser) depending on the pressures they are measuring.  This band will be removed in a later procedure (BiDirectional Glenn Operation).  Unfortunately the external pacemaker was required, and is now regulating her heart rate.  We are told this is temporary, and should be able to be removed during her recovery, which may last two weeks or longer.

The steps above are the first stage of the Fontan procedure which will result in a single ventricle heart, which will pump to both the body and the lungs by itself.  The lungs will receive the blue de-oxygenated blood directly from the body, and return the oxygenated blood to the heart as before.

The nurse just visited again as I was writing this, and all is now complete.  They are closing her chest and moving her to the PICU (Pediatric Intensive Care Unit) for continued observation, then to her own room in Hope Children's Hospital, which is connected to Christ Hospital.  We have to wait another two hours before we can see her.  All is well so far!  I'll post another update when we are settled in tonight.

Muriel heads off to surgery

We arrived at the NICU (Neonatal Intensive Care Unit) this morning (Monday), expecting to meet the team of doctors doing rounds for an update, and possibly to speak with the Cardio team to better understand the surgery scheduled for Tuesday afternoon.  Instead we found the nurse preparing her for surgery!  A bit of a scare as we hadn't heard of the schedule change, and we didn't know if it was moved up for any particular reason.  Turns out it was all just scheduling - Muriel had been doing fine.  We waited with her for several hours and spoke to several doctors getting ready for the event.  Finally we followed a team down the halls and up an elevator to give our last kisses and hugs.  Now waiting in the waiting room.  Expecting hourly updates which I will post here.  The surgery itself may last five hours or more.

Intubation

While in Naperville visiting our two older girls, we got a call from Dr. Kukkera.  Muriel's struggles with her CO2 levels started causing her to thrash around, clearly agitated, and she was tugging on the various tubes and sensor cables.  Her struggles weren't helping her oxygen saturation either - when she cries the pressure coming from her mask in her nose just goes right out her mouth!  For this reason and after consult with the cardiologist on call, she decided it would be best to go ahead and Intubate .  

To get the tube inserted into her trachea she had to be sedated, and for that very small doses of Morphine were used.  By the time we returned to the hospital she had been on it for about an hour, and the change was dramatic.  She was no longer thrashing, her heart rate was a bit slower (probably due to the sedation) and her oxygen saturation levels were in the high 80's and 90's - much higher than we had been seeing.  It was hard to see her with a large tube in her mouth, but it was apparent that she was relaxed instead of struggling, and that was reassuring.

The intubation was going to be part of the surgery preparation anyway, so it was just done a bit early.  We spoke at length to the nurse, and asked that Dr. Kukkera come in to speak with us a bit later, so we could get something to eat and let Megan pump (she has been producing milk for Muriel to start with when she is ready - hopefully next week).  We met with her around 11PM and she was very positive - reassuring us that this was done electively, and purely to make Muriel more comfortable and let her rest for the coming surgery.  Hard to do, but we must not look at this as a setback.  She is still in far better shape than anyone expected.

Pretty eyes...

Sunday morning we were allowed to hold her for the first time, and she opened her eyes!  We are told she can resolve up to about one foot, so should be able to see our faces.  She is still struggling with her CO2 levels and fluid in her lungs, and her oxygen saturation drops occasionally requiring a richer oxygen mixture in her CPAP mask.  We will head back to Naperville today after our visit to see Madeline and Mirabelle, and to try to finish moving our stuff out of the old house.  Surgery is currently scheduled for Tuesday.