A long day

He fell asleep with her doing this!!!

The following is a ridiculously long synopsis of yesterday, more for my records.  

The drive to SickKids yesterday was a little crazy.  There was an accident on the 401 so we exited and then used our cell to call GPS (Graham's Positioning Service) and we were able to find another route that was also slow but at least cars were moving.  Josiah is not a fan of being in a vehicle unless it is moving fast.  I thanked the Lord for the portable DVD player many times yesterday, starting in the car.

When we arrived at the hospital I rushed to the echo lab and found out that a floating appointment means that they just slotted Josiah in even though there wasn't an appointment available.  Josiah would have his echo when someone cancelled or was late (a normal occurrence).  I found a room and gave Josiah his enox shot (again, the DVD player held his attention and he didn't even make a sound when I poked him).  We always give the needle with two people so that one person can hold his leg still because he is a strong boy.  Thankfully I was able to do it alone.

We returned to the waiting room and someone else must have been stuck in traffic because we were able to get a 9:00 AM appointment.  I gave Josiah his drugs and formula while the echo was going on.  After about forty-five minutes the sonographer needed to put a roll under his neck with his head extended back to place the ultrasound wand (I don't know what it's called) all around his neck and upper chest.  Josiah naturally became very upset so I picked him up and soothed him.  I told the sonographer that she was welcome to try again but I thought he would do the exact same thing (oh me of little faith).  She tried again and he was so still and calm and quiet.  I just kept humming and singing to him and holding the DVD player.  I just watched him with his eyes wide open, completely calm and I thought there must be angels keeping him still.  Josiah actually fell asleep while she was moving the wand just under his neck.  At the end I said I thought we'd just witnessed a miracle.  She said, "Praise God." and I said, "Amen."  Thank You Lord Jesus!

Waiting for blood work results

She went to check the images and then said they needed more images and the doctor who reads the images came to do them.  I was getting antsy as I was supposed to get Josiah's blood work and IV done before 10:00 and it was approaching 10:30.  As soon as they said they were finished I rushed to a different section of the hospital.  Nurses looked at his veins and then put some cream on his feet and one hand, covered with a clear tape to help numb the area.  I went back to the waiting room for a half hour and was able to visit with a friend.  I returned to the room at 11:30 and they were able to insert the IV on the second attempt.  Let's just say that the cream doesn't take away all the pain and Josiah let them know.  They drew back blood with the IV and sent it to the lab. 

His hands are above his head ... he fell asleep!!!

We then needed to wait for an hour to get the blood results that said his kidneys were working fine so he could have the dye contrast for the CT Scan.  I had also asked for additional blood tests and his calcium and other electrolytes were all within normal levels - praise the Lord!

I then moved to another room with Josiah and my instructions were to give him his formula and have him fall asleep.  He eventually fell asleep in my arms and we moved him to the room with the CT Scan machine.  As I expected, he woke up.  His arms needed to be pulled up beside his head and his body was bundled up so he couldn't move.  I was able to stay in the room and hold his hand and sing to him.  He actually fell asleep again and was calm for most of the time.  He cried when they inserted the dye so the nurse thought the images might not be good but they were excellent images. 

Isaac and Josiah at dinner time

The wonderful nurse who inserted the IV asked me if Josiah would need the IV in clinic.   I said I didn't think so but she decided to keep it in and said it was such a good IV.  She said if no one would take it out I could return after clinic and she would remove it.  She puts in IVs all day and she told me that she loves what she does and that's she's able to insert them.  Praise God for awesome nurses with amazing skills.

I made my way to the clinic and gave Josiah more medicines and ended his feed.  I then found out he needed an ECG so we did that next.  We then met with the lovely nurse who works with Josiah's cardiologist.  She weighed and measured Josiah and took his sats and blood pressure and I answered questions.  She paged our doctor who then asked for a chest x-ray.  We headed downstairs.  When we were called in I said I didn't want him to have a Pigg-o-stat x-ray (they were planning to give him one) so I went back to the waiting room while she contacted our doctor to ask him.  I said I would need a very good reason why he needed to have a Pigg-o-stat.  He ended up having the chest x-ray while lying on his back so that felt good to save him and me from extra fear and screaming.

So happy to be going home

We went back to see our nurse and then she said the doctor wanted more blood work to check Josiah's haemoglobin levels.  I was not excited to hear this as I thought it meant a nasty poke but praise the Lord for the nurse who said we should keep the IV!  She was able to draw back blood perfectly!  We found out later that his haemoglobin is great and his body is compensating for the low oxygen level and he doesn't need an iron supplement.  Great news!

We finally met with our cardiologist and found out much of what I wrote yesterday.  He still thinks that the second surgery (Josiah's first surgery which was formerly called the Glenn and was reversed in Josiah) is off the table for good due to the obstruction in one of Josiah's SVCs and his presumed high pulmonary pressures.

Please compare his NG tube placement with previous photo!

Right before our doctor left we spoke about Josiah's puffier face and his diuretics.  He thinks that the puffier face is simply due to the existing clot in one the SVC so there is some fluid backing up.  Instead of increasing the diuretic he wants us to decrease it.  I wasn't too excited to hear this as it means we're rocking the boat.  I finally understand the reasoning.  Increasing diuretic means decreasing blood volume which means that less blood goes through Josiah's shunt to his lungs and therefore less blood gets oxygenated.  The hope is that by decreasing the lasix, more blood will go to the lungs.  It's nice to have clarity.  I was also excited when I realized that this may mean I can theoretically go to bed earlier as his last drug may be around 10:00 or 10:30 PM (I want to check a couple of things with the pharmacist at SickKids first.)  We are to watch for increased puffiness and shortness of breath which might indicate that we need to go back to the previous amount of diuretics.  Please pray that he will improve with less diuretics. 

My blue baby in Grandpa's arms today

The nurse removed the IV and then we had a quick bite to eat (I had eaten an apple and almost one piece of bread with a little peanut butter around 6:30 AM, chocolate from my friend around 11:00, and a muffin around 3:30 PM).  In my naive plans I was going to have time to buy lunch.

Isaac was amazing the whole day ... although he did start screaming when he randomly saw a clown and my mother had to remove him from a room and calm him down.  He kept crying after we put him to bed last night and we'd go in and he'd say, "I don't want to see the clown."  We talked and prayed and he eventually fell asleep but he was talking about it again this morning.  Please don't show up at our door in a clown suit!  

This morning Isaac told me he'd made the above horse.

Thank you for your continued prayers!  We are incredibly blessed with so much help, support, and love.

A dear friend came over for a visit today.  It was so lovely to spend time with her.

Blessings,

Elizabeth

Psalm 3:3-4
But you, Lord, are a shield around me,
    my glory, the One who lifts my head high.
I call out to the Lord,
    and he answers me from his holy mountain.