A wealth of information

Josiah's physiotherapist (PT) is amazing!  The nurses all speak so highly of him.  Today he told me that the left side of Josiah's body needs some work.  For example, it is hard for Josiah to bring his left shoulder and upper arm forward in order to bring his hand to his face.  This clinical diagnosis matches up with the location of the perinatal stroke shown in the MRI.  The PT showed me how to position Josiah and support him on my lap and in bed and pointed out the cues to look for to know when to let him rest and lay back instead of holding him more upright.

He said that Josiah is showing classic signs of not knowing where his body is in relation to other things - he feels lost in space (I forget his words and don't know how to explain it better than that).  He told me to put pressure on his tummy with my hand to help Josiah feel more secure.  He asked the nurse if she had friends in the NICU as a volunteer makes beanbag hands for the NICU babies.  The beanbag hand would go on Josiah's tummy when my hand is not available.

When Josiah is awake he needs to be on his side in the bed or on a chair or in my arms (the best option).  If he's lying in bed, he needs a mirror in front of him and something under his feet to push on if he wants.

Lastly, the PT asked to put a soother in Josiah's mouth.  He's never sucked on a soother  but he used to gnaw on it.  This time he just kept his mouth open and wouldn't touch it.  I also noticed that he hasn't enjoyed the pink sponge water lollipops as much the last couple of days.  The physiotherapist told me that babies that have been intubated and extubated a number times often develop an oral aversion.  So, he is going to make a referral to an Occupational Therapist who will work on fixing this aversion.

The doctors were hoping to let Josiah off CPAP for an hour and a half to two hours today but he didn't tolerate it this morning.  He was desating to the 50s. 

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I wrote all of the above midafternoon.  When I saw Josiah later this afternoon I found out that he had been off of CPAP for two hours and had no problems.  Before shift change he did have a heart rate in the 180s for a while.  They did an ECG which showed an arrhythmia but he was able to come out of it himself and did not have any negative consequences.  He is currently sleeping snug as a bug in a rug.

Josiah's day nurse was one of the charge nurses.  She arrives early so when she saw that she was assigned to someone else she asked to be changed to Josiah.  He has such wonderful care. 

I ate late but there were delicious leftovers from the dinner put on by TD Bank and I'll be able to take some for lunch tomorrow.  While I ate I chatted with a grandmother from Jordan and shortly after I met a woman here from Nunavut.  It will be good to see Graham and Isaac in person tomorrow night.

Time to pump and the sleep.  Thank you for your support and prayers.

Blessings,

Elizabeth