Settling in

Mommy and her boys

I ended up sleeping in Josiah's room again last night after starting out in my own bed.  He needed some morphine in the night.  I have high hopes for a good sleep tonight.  He cries out a lot but he is often able to go back to sleep.  A potential side effect of one of his drugs is vivid dreams or nightmares.  We hope his sleep is not disturbed by any fear.  It's always sad to see fear in his eyes.   

Josiah has wanted to be held and cuddled more the last couple of days.  I assume his body has adjusted to being held upright.  He prefers to be held while we are standing and rocking (just like Isaac did) but he sometimes lets us sit down with him.  It's nice to feel like we are able to give him some comfort in this way.  He also likes to grasp my hair with his fingers and put it in his mouth.  He'll often be soothed if I give him my hair when he's crying.  This is a gift to me as he won't take a soother and I can't nurse him to comfort him. 

Graham and I both had naps today which helped.  This morning while Isaac was enjoying church Josiah had his daily visit with the nurse.  We then gave Josiah a bath and put him in the swing which he didn't enjoy.  He spent some time in his chair and on his mat though he was fussier today.  He also slept in both mom and dad's arms.  It just takes the right number of bottom pats to calm him down. 

Yesterday, the last of the gentian violet came off his lips.  He still has some under his fingernails but it's nice that his face isn't purple any more. 

We meet our day nurse tomorrow.  He is coming at 8:00 AM and staying until 4:00 PM.  This will be an interesting transition to say the least.  We're praying that it goes smoothly and that Josiah loves his nurses and that Isaac adjusts to having an extra person in the house.

It's time to get ready for bed before the next feed.  We missed being with our church family today.  We're not sure what our outings will look like but we're taking this one day at a time.  We certainly feel very loved and blessed.  Thank you for your prayers!

Blessings,

Elizabeth and Graham

Ready for bed

There is snow on the ground outside.  I'm very thankful that the snow waited until we returned from Toronto, though I imagine the view of snow falling outside our window at RMH would be lovely with the CN Tower in the background.

We will be sleeping in our own bed tonight.  We'll leave our door open so we'll hear Josiah if he wakes and we'll put him on the sat monitor overnight.  Last night we were both on a mattress on the floor of Josiah's room but we didn't get too much sleep.  Hopefully we'll all have a good sleep tonight.  We've been blessed to have Graham's parents with us the last two days and nights and my parents were here earlier tonight helping with Isaac.  We've been spoiled with all the care.  We now have a lock on Josiah's cupboard where most of his medications are kept.  I can't imagine Isaac being in Josiah's room by himself but we want to be careful.  It didn't dawn on my until today that Isaac could easily turn the dial on Josiah's oxygen concentrator which is on the floor beside his crib. 

Yesterday I realized that an oxygen mask had not been delivered (we only had the nasal prongs).  I called the company and found out that they were on order and would arrive on Tuesday.  I had decided to ask for an adult mask in the meantime as we only put it beside Josiah's face for blow-by but thankfully the order arrived just before our RT came to visit us yesterday.  We've since used the mask a couple of times when Josiah was desatting.  I thank God for the reminder about that mask and His perfect timing.

Tomorrow morning we will meet with the nurse again.  My parents will pick up Isaac for church. 

Today we enjoyed delicious meals and a visit with an aunt and uncle.  Josiah was fussy this morning until the nurse arrived around 9:00.  After that he had a pretty good day.  We were able to have him on a play mat in his room and he even tolerated tummy time and his other exercises well.  At one point I was holding Josiah and Isaac climbed up for a cuddle too.  Josiah's chest was uncovered and as soon as Isaac saw it he said, "Uh oh."  We tried to explain what had happened to Josiah.    

Each night we'll wash all of the syringes we used during the day and pack up baggies with the syringes we'll need the following day.  Josiah hasn't gagged or vomited for a number of days which is a great relief.  It could be because we have reduced the amount of his feeds to around 75 mL every three hours from 6:00 AM to 12:00 AM.  Also, he is only getting my milk without any fortification.  One of the palliative care doctors told us that some kids seem to perk up because they are no longer overloaded with fluids.  It's so easy to stick a specimen bottle full of my milk into a cup of hot water.  I'm thankful for the milk.  All the pumping was certainly worth it.      

You may recall that I wrote a few weeks ago that Isaac fell out of the bed at RMH.  What I found out later was that on that same morning, a couple offered my parents rails that go on children's beds because they knew Isaac was sleeping in a big bed.  One of the rails is now on Isaac's bed at our home and it's working great. 

Please pray that we stay healthy.  Thank you for all your support and prayers.  I was reading some of the previous entries on the blog and realized how many times something could have happened to prevent Josiah from coming home.  We're so thankful to be together now.  I'm going to go and get Josiah's medications and milk ready before heading to bed.

Blessings,

Elizabeth

Lots of support

A nurse and nursing student showed up at 9:00 this morning.  We also had an OT come as well as an RT, a neighbour, an uncle, a friend from church, and the grandparents.  The highlight was when my parents brought Isaac.  He seemed surprised but happy to see me.  It's odd to think that he hadn't seen his Mommy in his home since July.  Graham and I showed him his two surprises:  Baby "Ja-ja" in the crib and then a doctor's play set on his bed.  He went in the crib and tickled Josiah's toes and was most excited about the Baby Einstein dvd that was playing.  He was also excited to be Dr. Isaac with his medical bag.  He took out the thermometer and immediately knew where it should go.  Let's just say that he doesn't get his temperature taken under the tongue or the arm.    

Josiah was quite sleepy today.  His sats go down when he's up, being held, and when he's fussy.  I don't recall seeing any smiles today.  He actually looked quite pale.  We did change his nasal prongs tonight along with the tapes on his face.  We definitely need more practice.  He screamed.  I don't know how a baby's mind works but my adult mind wonders if these moments take him back to all the awful (but necessary and important) taping and retaping in the CCCU.  I was the one who often said that he didn't need chloral for the procedure.   

I'm falling asleep while typing so I'll say goodnight.  Thank you  for all your prayers and support.  Oh yes, Josiah basically slept through the night last night so we were able to successfully skip the 3:00 AM feed.  Thank You Lord Jesus!

Blessings,

Elizabeth

Home at last

Josiah is peacefully sleeping in his room as we write this.  It has been a full, but blessed day.

One great surprise is that we are happy to be home.  I really expected this to be stressful but it's been fun getting the place organized and Josiah has been great.  I enjoy trying to figure out the best way to prep the drugs and the feeds.  Thank you for your prayers in this regard!  God has definitely answered them.  I think Graham and I are a good team.  He gives most of the enox injections and I listen for most of the pops!  We are soaring with our strengths! 

The trip home was good.  Josiah was a little scared at the beginning and didn't enjoy Toronto's stop-and-go traffic but he soon fell asleep.  He was on a stretcher and we ended up giving him his 3:00 feed and medications in the ambulance.  We had been told that this transfer ambulance would not have medical personnel but the woman who sat behind Josiah had completed all of her EMS training so that was reassuring.

A nurse was going to drop by tonight but she called and asked how we were doing and we said that a morning visit tomorrow would be fine.  It was nicer to be able to get some things put away.  The OT also called and she'll come by in the morning as well.  Another nurse will come in the afternoon and a social worker called and said she would come next week.  What amazing support!  Shift nursing starts on Monday but we don't have all the details.   

This morning at the hospital there was last minute paperwork, sat monitor training, medications to pick up, goodbyes from staff and other parents at SK, collecting the final bravery beads, and packing.  Elizabeth's dad came for our luggage and the milk.  The milk is currently in three freezers.  

When we arrived home, we were met by family who also arranged a lovely fruit bouquet.  Graham actually told me this morning that we needed a fruit buffet so it was the perfect gift from our family.  Our sister-in-law explained all of the instructions for using the oxygen as she was here for the training.  All of the other local family members came by to welcome us home and see Josiah.  Graham's parents are staying the night and thus we had a delicious dinner and put them to work with laundry, washing syringes, and keeping Josiah entertained. 

Before we left the hospital, Graham ran into a couple whose infant daughter had a heart transplant in August.  Thankfully, she is doing well. 

We've decided to monitor Josiah's sats overnight and he has been doing quite well.  I think we're getting better at anticipating his morphine needs. 

It is a little bizarre seeing some of Josiah's things like his vibrating chair and swing and remembering that he used to be in them here.  It seems a little like that was a different baby and in many ways that is true.  I felt like I was introducing this Josiah to his home for the first time.  A lot has happened over the past three and a half months.  Josiah's bedroom is new.  Our family did a great job setting it up.  I cleared out all of his three to six month clothes from his drawers as he has grown. 

It's time to get his midnight feed ready.  It is good to be home and good to be able to say that.  God's amazing love is so evident.

Blessings,

Elizabeth and Graham

Last night

It's hard to believe that this might be the last post written from SickKids.  This has been my home for over three and a half months.  We've had superb care here and I like it here.  It will definitely take a little time to transition back to Kitchener.  I'm sure I have a lot of underlying comfort just knowing that there are nurses outside my door here.  I never envisioned bringing Josiah home unwell.

We've already said some goodbyes to amazing caregivers and other families.  One couple whom we regularly pass when we push Josiah in the stroller made us his name using beads.     

I heard last week that I had four big boxes of my milk in the freezer downstairs.  I found out this morning that it's actually ten big boxes.  We're going to take home five boxes tomorrow and we are hoping that it will fit into our freezer and that of my parents.  They will store the other milk for me here.  My weaning off the pump is going well.  Today I pumped three times for three minutes each time.  It will be nice when that's finished. 

Graham dropped off our prescriptions at the pharmacy today.  Our nurse practitioner said we won the award for the longest list - it was three pages.  He's now on benadryl to help with the itchy eyes due to the morphine.  We have the draft copy of our discharge summary and that is seven pages. 

Our highlight today was seeing the imaging from Josiah's MRI.  We saw how his pulmonary veins are narrowed.  The expectation is that these veins will continue to narrow which would decrease and stop oxygenated blood from going to his heart from his lungs.  We saw the imaging in the multi-media room (it looks like a mini-theatre) where the cardiac team meets for its conferences when they discuss different patients.  It was nice to see the room where decisions were made about Josiah.

Josiah's highlight was probably the two stroller rides.  He slept quite a bit today and we gave him more morphine.  We're going to start giving him regular doses at 7:00 AM and 7:00 PM and then whenever we want as the need arises.  It took so long to wean him from the morphine and I remember when it looked like he was in withdrawal. 

I'm going to miss sleeping by his side.  He's in a big hospital bed now but at home he'll be in a crib.  CCAC from Kitchener called us tonight to arrange delivery of all of the supplies we will need.  A nurse will drop in tomorrow night and then shift nursing will start on Monday.  Shift nursing is such an incredible blessing for which we are so grateful.  We thank God for this gift and we also realize what a blessing it is to live in Canada.   

I can't wait to give Isaac a big cuddle but he'll be with his grandparents tomorrow night during the transition.  

We're heading to bed now.  Tomorrow at 10:00 AM we'll have training on using a sat monitor.  Thank you to everyone who has prayed for us.  Please continue to do so as we all move home.

Blessings,

Elizabeth and Graham

p.s. We can now pick up Josiah under his arms as it has been long enough since his surgeries.  It is a much more convenient way to pick him up for cuddles.

Wow!

Relaxing in his comfy chair

Four members of our Kitchener CCAC team came to meet with our team here.  As I previously said, our liaison here said she hasn't seen this happen.  We weren't in the meeting but after the meeting our SickKids OT came to our room and told us that the team was great and that we were in good hands.  When the team came to meet us and Josiah, they said they would take great care of us.  Our case manager said she'd hand pick the best OT and PT for Josiah.  They were able to arrange for 4-hour shift nursing starting next Monday but starting this Thursday we'll have a nurse drop in a couple of times a day.  We can even have the shift nursing whenever we want it so we may decide to have it during the day to enable us to have more time with Isaac.  What a tremendous blessing this will be! Thanks be to God and to the Community Care Access Centre of Waterloo Wellington.

So, we expect to arrive home on Thursday.  We'll come in a transfer ambulance so Josiah won't need to be in a car seat.   He is currently sleeping in his car seat while I write this as he is doing a test to make sure his sats don't drop too low while in there.    

Family helped receive the oxygen that arrived at our home this morning and later they set up Josiah's new room which used to be our guest room.  Tonight, my dad and brother came to take back our car and some luggage. 

Josiah has been very sleepy these last couple of days. We gave Josiah three doses of morphine today at 5:50 and 7:50 AM and then at 7:00 PM tonight.  We decided to try oral morphine tonight and Josiah was taken off the pump.  It was really nice to just have a button to push but Josiah is a lot less mobile when he is hooked up to the pump.  Anyway, the morphine didn't seem to have an immediate effect.  It could be because he is not "morphine naive" as they say.  If we stay on the oral dose then it will just take a day before we can get a pump if we need it in Kitchener.  He is getting the negative effects of the morphine.  In addition to his lack of bowel movements, he is always rubbing his eyes so he may start on benadryl to counteract the itching sensation.

The casts of Josiah's hand and foot turned out very well.  There are also two of his hand in mine.  

We are finding it quite challenging to know what to give Josiah when he is fussy.  Is he teething, hungry, in pain from his medications, trying to have a BM, trying to fall asleep, or air hungry?  If we decide he is air hungry then it still takes twenty minutes for the morphine to kick in (if this dose is working on him).
 
I wondered today what would be harder if God takes him home: for me to walk out and leave him in a hospital room or have someone take him from our home.  God will be with us and give us the strength whatever happens.  Actually, I thought I might lose him last Friday so this all seems like bonus.  These days are a gift.  Thank you Jesus!

It is time to go to sleep.  Thanks for your support and prayers.  We love your comments and emails!

Blessings,

Elizabeth and Graham

Goodbye Ronald McDonald House

As I type, I can hear Josiah's breathing.  I learned today that morphine should take away the perception of breathlessness from Josiah but that we will probably still hear laboured breathing sounds.  That will be challenging.  I often want to take deep breaths when I hear him breathing. 

Graham went to Ronald McDonald House today and signed out.  We think we may be able to go home on Wednesday.  We've both been sleeping here since Friday night.  We all had a relatively good sleep last night.  Our nurse gave Josiah his 3:00 AM and 6:00 AM feeds and his enox shot at 7:00 AM so that meant we could sleep more. 

We gave Josiah more morphine today.  That's likely the reason he didn't have a bowel movement today.  He'll get something tomorrow to help with that.  He wasn't Mr. Smiles today but he did well in physio and then fell asleep sitting in a chair.  The OT recommended a specific high chair and I found it on Kijiji today a few hours after it was posted.  The post listed times tomorrow when someone could pick up the chair just five minutes away from my parent's home.  Thank you Lord!

Oxygen will be delivered to our home in Kitchener tomorrow morning.  A portable tank will also be delivered to our room here for our trip home.  It sounds like we'll be able to take a transfer ambulance home.  There will be two workers who are not paramedics with the vehicle but Josiah will not have to be in a car seat and we can accompany them.  We thank God for providing this. 

We took Josiah off his floor for the first time today (apart from when we had to go and get an xray with our nurse).  I think he liked the new scenery.

The CCAC team in Kitchener is coming to SickKids tomorrow to meet with the CCAC team here and then with us.  Our liaison here said she hasn't seen this happen before.  I believe the missing piece right now is the nursing support but that may not be in place for our arrival home.  We've heard that there may also be some concern about the fact that Josiah has a picc line.  We'll find out the details tomorrow.  The team here has been very supportive.

I'll say goodnight.  We're hoping to get to bed early.  Thank you for all the comments and email support today.  All the words are so encouraging.  God has used each of you to bless us tremendously.

By the way, there is a little girl in 4D who has had the three operations that children like Josiah would typically have.  They found out on Friday that the last surgery may have failed.  They won't know for sure until this Wednesday after she has a cath.  She asked me today if I had seen any miracles recently and she said they were coming.  They are far from home. 
 
Thank you for your prayers!

Blessings,

Elizabeth