Awesome nurses

Last night was a better night though Josiah was restless around 3:00 AM and I noticed his breathing changing.  I woke Graham around 5:15 and we just lay and sat beside him and spoke to him and prayed and told him what a wonderful boy he was and how loved he was and what a wonderful brother he has.  He was restless but he was asleep and not distressed.  I told God that I really wanted his Grandma and Grandpa F. to be able to hold him and I knew they were coming today.  We gave him morphine around 7:40 but at 8:00 he was having another episode.  We asked for chloral but it had been taken off the PRN list so we gave him tylenol until the fellow was able to order chloral.  We now have chloral as PRN up to twice a day.

Since we met with palliative care on Friday morning, we haven't had Josiah's sat monitor on.  The idea is that we should be looking to him to know his needs of morphine and oxygen (in general we are to give morphine first when he seems to be oxygen hungry and if that doesn't work, increase the oxygen).  However, these last three nights we have asked the nurse to put the sat probe on Josiah and just monitor it from the nurse station so that they can tell us if we can put his oxygen down and can change it during the night while we are not looking at him. 

Josiah had a great day until all his visitors left.  He had another crying desat episode so we asked the nurse to check his sats (and not tell us them) and to let us know if she thought we should try tylenol or chloral first.  We started with tylenol and he was mainly better about twenty minutes later.  It feels a little stressful when he gets upset (those eggshells again) as we don't want him to have a big desat.  On the other hand he is a baby and thus cries.  We don't want to give him morphine and then find he is fussy due to a dirty diaper.  We want him to be comfortable but morphine also causes respiratory depression along with other potential side effects. 

So now all of the grandparents have held Josiah.  He had some nice smiles today.  We had more visits with family members today and help with laundry again.  We have such an amazing family!

We've had wonderful nurses throughout our stay.  These last couple of days the nurses aren't checking on us unless we ask for something, at our request.  They bring the medications and deal with the morphine pump and picc line and keep asking if there is anything they can do for us.  Two of the nurses from the CCCU came today as they heard we would be going home soon and wanted to say goodbye.  I mentioned to them that our nurse practitioner said one of the CCCU nurses would make 3D molds of Josiah's hand, etc.  They said that S makes the best molds and said she was on today.  Later, she came and made three molds.  Apparently these will be beautiful.  We'll get them before we leave.  This is the same nurse that is Josiah's girlfriend.  It was great to see her again. Actually she's not on tomorrow so God set this up today. 

CCAC met with us today.  They asked us some questions and started a chart for Josiah.  They speak with our local CCAC to organize care in our home.  They are requesting 40 hours per week (five night shifts) but it sounds like it would be unusual for us to receive this care right way.  During the interim a nurse might drop by twice a day.  They thought the earliest we could get home would be Tuesday.  We want to inquire about transportation options tomorrow.  We've been told that we would need to transport Josiah in our car and we are a little uneasy about this as he isn't too stable, has little reserve, and hasn't been strapped into a carseat for months. 

Today was a little hard for Isaac whom we did not see.  Please pray that our transition home (if and when this happens) will go smoothly for Isaac. 

I never wrote about Josiah's physical issues that are keeping him from having his second surgery or a heart transplant (as the main issues are not the heart).  In case you are wondering, these are:


1) Pulmonary vein stenosis which is most prominent in his left lower pulmonary vein but it is also in one or two others;
2) A clot in the right atrium which blocks the right SVC in which the picc line is inserted;
3) Moderate valve regurge;
4) High pulmonary pressures (related to 1 and 3)

Also, neurology has told us that the imaging of Josiah's brain showed a global insult due to all of the high pressures and lack of oxygen he experienced after his surgeries.

These last few days have been a blessed time with Josiah and our family.  We are so thankful for the time, smiles, cuddles, and care.  Our nieces prayed the sweetest prayers for Josiah tonight.  I asked them what would happen if God didn't heal Josiah and they said he would go to heaven.  Perhaps God can't resist Josiah's smiles either.

Thank you for your prayers and support.  We are never alone.


Blessings,

Elizabeth and Graham