Familiar faces

God sent some familiar faces today, a lovely gift to me.  One of the receptionists also works in the CCCU, the EP fellow saw Josiah's name on a list and came to see us, one of the charge nurses from the CCCU saw that we weren't downstairs so she came and found us, and there was also one of his previous nurses and one of his previous fellows in addition to the nurse practitioners whom I have known since April.  We're also in the same room as Aleeda (a little girl awaiting a heart transplant) whose mom I know from RMH.  Oh yes, I also saw Josiah's cardiologist in the hallway and we had a chat; we haven't seen him for ages as he is mainly involved when Josiah is at home and returns for clinic visits.  Wow - I didn't realize how many familiar faces there were until I started the list!

It was a tiring day but not nearly as tiring as yesterday and I had a good sleep last night.  Josiah was put back on the oxygen prongs last night as his sats were hanging out in the low 60s and then dipped to the 50s when he was upset.  The CCRT fellow told the nurse to leave the oxygen prongs on Josiah today.

CCRT stands for the Critical Care Response Team.  They follow children who leave the critical care unit and go to the wards.  Usually they follow up for 48 hours (two visits) but Josiah will be followed for 72 hours and the fellow who came today (the same fellow who last had to intubate Josiah) told me that I could ask the nurse to page them at any time even after the 72 hour mark.  The charge nurse from CCCU also told me that they can come up and assess Josiah if the need arises.  I hope neither of those options will be needed but it's amazing to know that all the support is there.

Yes, Josiah is still in the step-down room and I am so thankful.  Our new physiotherapist came by a couple of times today and he also seems great.  Josiah now has a tumble forms chair to use to support him in a more upright position.  This weekend he will just have some chest physio to help with secretions but on Monday he'll have more developmental physio.  His left arm is doing better but his left leg needs more work.

Today was tiring as Josiah was quite fussy and also gagged and seemed to be bothered by reflux.  Thankfully the stroller still seems to calm him but he starts getting fussy as soon as I stop moving.  I'm trying to be careful to not overwork my knees.  One advantage that will come when he is in his own room will be the couch/bed that I can lie down on when Josiah is sleeping.

Although Josiah won't receive my milk or start oral feeds until Monday, they did say that I could dip my finger or a soother into my milk and put it in his mouth over the weekend.  Hopefully I'll get a chance to try that tomorrow.  When I hold him in my arms he still seems to root so I'm hoping he remembers what to do.  The nurse told me today that if he ends up needing thickened milk, he won't be able to have my milk as there is no longer a product to thicken it (the previous product was recalled and is no longer used for babies under one year of age).  I suspect that Josiah will remember how to nurse but the bigger question is whether or not he will be able to breath at the same time, keep his sats up and not aspirate.  As I said before, it was amazing that he was able to nurse in the beginning as most heart babies do not learn this.  I would love to go home without an NG tube down his nose so even if he just learned to take a bottle, that would be great.

Josiah's enox level was down today so his dose has increased and another level will be done tomorrow morning.  On 4D they won't take the blood from the picc line to check the level as it is now heparin-locked so they have to poke him.  I don't like holding him down to get the needle but I'm glad I can be there.

Graham just returned from a visit with Josiah.  He said that Josiah was fussy.  It seems like a number of people think his fussiness is due to the amount of sedative that he used to be on.  May God give the doctors and nurses wisdom to help Josiah.

Thanks for your prayers!

Blessings,

Elizabeth