A banner day!

Where to start?

When I arrived at the hospital today I found Josiah on CPAP on a peep of only five!  That means he came off of Bi-PAP and was weaned from a peep of at least seven.  He was off of CPAP for an hour this afternoon with just nasal prongs and he did quite well for the first forty-five minutes and then he had more indrawing and was paler but he did not desat until he was back on CPAP.  He'll try again a couple of times tomorrow.  The oxygen level on the machine is around 45%.

He went off milrinone this morning (a heart medication) so his only continuous medication is the morphine which was at 24 mcg/kg/hr this morning but was weaned to 18 late afternoon.  At his peak he was on 70 mcg/kg/hr so he has come so far!  He also hasn't needed any extra sedation since before the weekend and he hasn't seemed restless or agitated for at least a few days.   

He had two physio sessions today for his lungs and enjoyed both of them.  He's doing much better at coughing up his secretions himself and his cough is a lot stronger.  He still has congestion in his lungs but he hasn't had any collapsed areas in a while.  Later this week he will transition to physio that will work on his movement and control and things like holding up his head.

There hasn't been any increase in Josiah's drainage.  If this continues to be true, he may be able to get his chest drainage tubes out on Thursday.  His feeds were up to 55 millilitres and are going up by 5 millilitres each feed, every three hours.

Ever since a nurse mentioned that it would nice if the hospital had more mobiles, I've wanted a mobile for Josiah.  When I walked into Josiah's room today he had a mobile.  I had asked the nurse to speak with the Child Life Specialist and she was able to find one with good developmental patterns and colours to stimulate him.  I'm not sure how interested Josiah was but Mommy was happy.  I later asked the Child Life Specialist if she had a rattle that I could use with Josiah until Graham brings some toys this weekend and she brought me a bag from the Starlight Children's Foundation.  They "help seriously ill children and their families cope with their pain, fear, and isolation through entertainment, education, and family activities."  In Josiah's case this meant he was given a helicopter rattle, another toy that makes a rain noise, a Clifford book, and a soft mini blanket with a giraffe head.  How kind and thoughtful!

I was given the results from neurology today and they are very encouraging.  The MRI showed evidence of an old stroke.  This is presumed to be a perinatal stroke, occurring either in utero or at birth.  There are usually excellent outcomes from these types of strokes and it's promising that we did not notice deficits previously (such as only moving on one side) and he is currently showing equal movement on both sides of his body.  Apparently these strokes are not all that uncommon and risk of recurrence is extremely low as it's assumed that the original clot was from the placenta.  Josiah's risk may be a little higher given that he has a heart condition.

They are questioning whether or not Josiah has a clot in the venous system in his head.  The MRI was inconclusive so he needs to have a CT Venogram.  I believe we'll wait until Josiah can breath on his own before this is done.  We do not need to rush as the treatment for a clot is the enoxaparin which he is already on.  The visual Evoked Potential test results showed normal results on both eyes.  He is able to get the signal from his eyes to the back of his brain.  The somatosensory Evoked Potential test did not give normal results but they also weren't distinctly abnormal so they don't know how to interpret this.  This test isn't very reliable for such young children so it will be repeated when Josiah is older.

There is no evidence of new brain ischemia (insufficient blood flow to the brain resulting in poor oxygen supply and death of brain tissue or cerebral infarction - stroke).  Additionally, nothing has affected the white matter in the brain.  This is incredible!  There were many times when Josiah had very low saturation levels.  I remember once asking the nurse how low Josiah's oxygen saturation levels had gone after she told me that his blood gas results came back and they put him back on nitric oxide because they were low.  Her answer was, "as low as they can go."

So, in terms of neurology, Josiah will have the CTV before we are discharged and then he will be followed up by the stroke clinic three months after discharge.  In terms of any deficits in Josiah's abilities, we just need to let Josiah grow and develop before we know more.  While Josiah seems to be more alert when he is awake, he still doesn't usually focus on me when I'm in front of him speaking to him.  He's also very lethargic.  His lethargy can't be assessed until he is off all of the sedation.  His fingers are also quite blue which surprised the staff physician yesterday.  She said she is used to blue feet but hasn't seen blue fingers like his.  The fellow thought Josiah would be in the CCCU until at least next week.

Sadly, I missed a visitor today but she kindly left me some chocolate so I would know she had come.  I missed her visit because I was at RMH getting a free fifteen minute massage on my neck and shoulders.  A massage therapist volunteers her time for patients and parents at RMH.  Not surprisingly, she said my shoulders were very tight and suggested I do some shoulder rolls.

Lest anyone be tempted to feel sorry for me, please know that in addition to my massage and chocolate, I was also blessed with a steak and baked potato dinner and an ice cream sundae all thanks to McDonalds who provided this meal at RMH.  I am currently enjoying my tea as I type and watch the lights on the C.N. Tower and listen to music that proclaims Jesus' faithfulness.  I had a wonderful snuggle and snooze with Josiah this afternoon and afterwards I discovered ...

... (I saved the best for last as a reward for those who kept reading my novel) ... that Josiah cut his first tooth!!!  How exciting is that!?  The medical staff didn't seem quite as excited as me but that's okay!  The nurses kept talking about how much better Josiah looks and how great he's doing.   

Okay, actually the best news is that Emma Stewart was moved out of PICU and to the ward.  Thank You Lord! 

Time to pump and then go to sleep.  Thanks for your prayers!  We are so grateful for all God has done and continues to do.

Blessings,

Elizabeth