Daily Doses, Daily Blessings

We've been blessed to have more visitors the last couple of days.  It's nice to reintroduce Josiah to family and friends.  A cousin came by yesterday and we put her to work holding Josiah and then playing with Isaac.  She had great timing as our shift nurse was not available yesterday (we certainly missed him).  Caring for Josiah is certainly doable by one person, except when he is very fussy and desats and won't be consoled.  Then we find that one person needs to hold him and try to calm him down while the other person prepares medications.  It's always nice when Isaac is also calm and preoccupied at these times.  The case manager suggested that we explain to Isaac that there will be times when both mommy and daddy need to be with Josiah and won't be able to be with Isaac and to think of something special he can do at those times.  We're still thinking about what that could be.

A huge thank you to the Gardecki family who sent a comment about the NG tube extension.  We actually had these extensions from CCAC but we didn't know what they were!  Our feeding bag is the Kangaroo one (purple).  The extension is a different brand but it is working really well and we are thankful that we don't need to use tape anymore.  Thank you SO much for your comment and of course for your prayers!     

We gave Josiah two extra doses of morphine today in addition to his regular two doses.  That meant that he was itching his eyes more tonight so we gave benadryl.  We also gave him PEG again at lunchtime but he still hasn't had a BM. 

We haven't put the sat monitor on Josiah for the last couple of days which tells me that we're feeling more comfortable and we are less anxious when he is upset.  I think we're always going to find the morphine decision a little difficult.  Tonight I was in his room flushing his NG tube and I looked up at his face and saw that his nasal prongs were on top of his nose and thus he was not getting any oxygen.  I'm assuming that he would eventually start crying without any oxygen which would alert us to the problem but we decided to put the sat monitor on him tonight.  Hopefully removing his nasal prongs is not his new trick.

The Occupational Therapist and Speech and Language Therapist came today.  The SLT focuses on swallowing.  Josiah had a food tasting session while they observed.  He had some rice cereal which enjoyed tasting for a few minutes.  We can try this every day and we'll see if he would like something tastier to try.  You may remember that he had also done this at SickKids.  The OT came to see Josiah for the first time last week and asked that we put off trying oral foods until the SLT could come as they hadn't assessed him.  Josiah passed the test with flying colours.        

I've actually slept in my own bed the last two nights!  Last night he didn't cry from when I left him around 12:45 AM until around 5:30 AM.  He goes down for the night around 7:00 PM after his enoxaparin shot but he often cries out a number of times.  What a blessing to see him sleeping more peacefully! 

I thought I'd give you a little idea of our schedule in case you're wondering what we do.  We have our alarms set to go off all day long so that we don't forget his feeds and meds.  Typically Josiah has woken up shortly after 5:00 AM.  These last couple of mornings he has woken up very happy with lovely smiles.  We boil the kettle to start heating up his frozen milk around 5:40.  His first medications and feed are at 6:00 AM.  Sometimes he's fussy and presumably hungry before 6:00 AM which is when one person needs to hold Josiah and the other person works on his meds and milk.  First we need to check that the NG tube is in the correct place in his stomach by putting air in a syringe and pushing it quickly through the NG tube while listening to his stomach with a stethoscope.  We should hear a "pop" if it's in the correct place.  We do this every time we use the tube.

Josiah feeds every three hours until 12:00 AM.  A feed lasts around half an hour and we need to remember about fifteen minutes into the feed to move the tube because it works by gravity.  We flush the tube with water at the end of the feed. In total, without any additional medications such as Tylenol or Benadryl or extra morphine, there are eleven times during the day that we need to access the line and this involves giving eleven different medications and using 40 syringes.  Whenever we want to give him an extra medication at a non-feed time, it involves three syringes: one to check the pop, one for the medication, and one for a flush.  We have a system of baggies that I prefill with syringes each night.  Someone asked me how long it takes so I timed myself tonight and it only takes five minutes.  One of us cleans the syringes from the day in the evening and we put them together the next morning.  We love our system.
  
We've decided that this would be a great time for Isaac to start sitting on the potty!  Back in July when he sat on the potty for the first time he peed right away to my delight but this time he's just happy to sit there while we sing songs from a song book.  Well, mommy sings and he looks at the pages.  You can picture me sitting beside him singing old favourites like "Only a Boy Named David," and "The Wise Man Build His House Upon the Rock" until I decide it's time for us to wash our hands.   

We've been blessed with tremendous support from our family, friends, church family, various other churches, and strangers.  This is a time of relative peace right now for which we are so thankful to Jesus.  This time is a blessing.

Blessings,

Elizabeth 

Grieving with those who grieve

Our hearts were deeply saddened today to learn that Sarah Tapley, the amazing 11-year-old daughter of Graham's cousins Matt and Lisa Tapley, went to be with Jesus today.  As Matt said on his Twitter account: "Sarah was brave and strong and a FIGHTER all the way. Our lives are so much better for having her for the time she was with us."  Well said.

Our thoughts and prayers are with them tonight.


Blessings,

Graham and Elizabeth

The swing is for Baby

Isaac fell asleep easily tonight.  We've instituted a new rule:  no wrestling with mommy right before bedtime.  I'm not sure what I was thinking yesterday apart from thoroughly enjoying him jumping onto me and laughing.  It makes me laugh just thinking about it.

This morning Isaac kept calling mommy and then daddy from the living room.  I have been trying to teach him to come and find us rather than yelling our names (usually we are within sight of him when he's yelling).  I was holding Josiah so I told Isaac to come and find me.  He kept yelling so I finally came out and found him sideways on the baby swing that was swinging very fast.  I think he was a little scared but certainly not petrified.  I saved him and hugged him and kissed him and then we both had a good laugh.  I'm actually quite impressed that he was able to turn it on and climb onto it.  The swing is unplugged and Isaac knows it's for "Baby".  I will try to respond more promptly when he calls.   

Josiah had some nice play times today.  Here's a video that Grandpa Faulkner took.  I was sleeping when this was taken and I think he looks better than he did all day.  Grandpa therapy does wonders.   

   

The nights are a little blurry for me.  Josiah keeps waking up and crying from time to time.  It's great that it doesn't take long for him to settle but it disrupts our sleep and usually one of us ends up just staying in his room.  I think it seems like he's in somewhat of a dream state when he's crying.  I hope he's not having bad dreams.  With the shift nursing here during the day, both Graham and I are able to find time to nap so we really don't feel exhausted most of the time.  It's nice when Isaac wakes up after Josiah's 6:00 feed.  He's done this once so far. 

We gave Josiah a stroller ride today in the house and he seemed to enjoy it.  He likes to look at everything as long as we keep him moving.  He's not a fan of doing his exercises so it's a little hard for me to know how much to challenge him in terms of tummy time, etc.  He is pulling his legs up and kicking them more which is nice to see.     

We had a good visit with our amazing case manager and nurse practitioner today.  KidsAbility had called this week regarding our referral but our case manager said Josiah should just stay in the home as opposed to doing outpatient appointments so if we need KidsAbility at a later date, CCAC will refer us then.  What an incredible blessing this is to us!

They reminded us that we have access to 24-7 nursing so if we ever have a question, they are available.  We also feel better knowing the process if God were to call Josiah suddenly.  We wouldn't need to go to the hospital at all.  They also encouraged us to give morphine whenever we think it could help Josiah. 

I just gave Josiah his 9:00 meds and feed.  He slept through it and even smiled in his sleep as he felt the meds go down his tube.  He doesn't always like the feel of the cold medications.  I was thinking how I was once hopeful that we would leave the hospital without an NG tube.  How horrible it would be to have to give all of these medications orally.

We were blessed with visits from all of the grandparents today.  We were also blessed with a delicious supper tonight.   

Thanks for all the prayer support!  It's always great to hear that people are praying for us.  God is giving us His peace.

Blessings,

Elizabeth

A Noah Sighting

Isaac loves the story of Noah's Ark.  (Well, at least he likes the children's version which tends to skip over the death and destruction part.)  Isaac went to the grocery store with his grandparents today and he was quite pleased to see Noah there.  Noah had a long white beard and happened to be wearing a big red suit.  I wonder if Isaac would like to get his picture taken with Noah.

Our shift nurse is very attentive to Josiah's needs.  It's great to be able to have a nap and know that someone is with Josiah.  An RN comes daily to hep lock Josiah's picc line and do a quick assessment.  We met the physiotherapist today and she gave us a few more ideas of things to do with Josiah and explained the suction machine (which thankfully he hasn't needed since we arrived home).  Tomorrow the CCAC case manager will visit along with a nurse practitioner who works with our paediatrician. 

Graham left the house to do some errands today.  He picked up some medical supplies and went to a pharmacy to get some assistance regarding one of Josiah's medications.  I ended up being by myself for a while with both boys as the nurse left for his lunchbreak.  I was thankful that Isaac didn't wake from his nap and Josiah was calm.  

Josiah had a few smiles today and lots of laundry.  The cap on the end of his NG tube came off a couple of times when Josiah was in his bed.  We've put some tape on it to help keep it closed.  These tubes are supposed to last a month but we access it so often for all the drugs we're giving him. 

We're hoping that everyone here has a good sleep tonight.  Isaac did not want to go to sleep and seemed to be wired.  We're going to try a new strategy tomorrow night.   

I have laundry to fold (I enjoy doing laundry) and a feed and medications to prep so I will say goodnight.  My knees and hand felt a little better today so I'm thankful for that. 

Thanks for your support and prayers!  God gives us His daily bread which sustains us. 

Blessings,

Elizabeth and Graham

Divide and Conquer

Life is never dull with two boys under two years old.  Elizabeth and I have adopted the "divide and conquer" mentality to keep things organized.  This morning Isaac decided to wake at 4:30 AM.  After I laid down with him he fell asleep again and didn't wake up until close to 7:00 AM.  This worked out well because at 5:30 AM Josiah was restless and Elizabeth needed my help getting his feed and meds.  By the time Isaac woke up we thankfully were back on our routine.

At 8:00 AM the new shift nurse came for the day.  It turns out he too has a new baby at home, so he is mindful of our need for sleep, and encouraged us both to take naps during the day when we could.  He was a quick learner, and adopted our "system" for how we have organized the meds and feeds.  Elizabeth came up with a good system, and it is running like clock work. 

Elizabeth's parents came after breakfast and took Isaac to the library.  He absolutely loves books, so trips to the library are a special treat.  They returned mid-morning when the RN and her trainee had just arrived to change the dressing for Josiah's PICC line.  Our little home is certainly seeing its share of traffic these days, but thankfully it hasn't felt too crowded yet.

This afternoon we had visits from members of the prayer team at WPA.  It was great to see familiar faces and to agree in prayer for Josiah's healing.

Shortly after they left the CCAC dietitian came for a visit.  She weighed Josiah and took his length.  He is 7.9 kg (17.4 lbs), which explains why he feels heavy to hold these days!  Josiah is definitely more cuddly recently, and often prefers being held standing up.  However, today he did have some nice sleeps in my arms while I sat in the La-Z-Boy.  I must confess I also dozed off during those times too.

Elizabeth tried getting Josiah in the stroller this evening in order to walk him around the house, but he wasn't a fan so we had to cut that activity short.  Perhaps tomorrow he'll be in the right mood to try again. 

We enjoyed delicious leftovers from the various meals people have provided over the last few days.  Thanks to those who made the meals -- you know who you are. =)

This evening Isaac went to bed pretty well, and Josiah has had a calm night so far.  We are praying for a peaceful night and morning, so that we are ready for tomorrow's visit from the physiotherapist, RN, and shift nurse, and whomever else enters these doors.  We are thankful for every moment we have with our boys and are so blessed to be living in Ontario where we have the support systems we need for this time. 


Thanks everyone for your prayers and encouraging words.

Blessings,

Graham

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

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

Gifts from God

For the last ten minutes we have been enjoying amazing smiles from Josiah!  I'm sitting by Josiah watching him play with his new blue spoon from his aunt as I type this.  These moments are so precious.  Last night was difficult as I listened to Josiah struggle.  This morning I just wanted God to please take him soon and stop his suffering and I wanted it to happen in the hospital.  However, he had a much better day.  Josiah's morphine pump is set up to allow us to give him morphine up to every two hours.  Today we gave him morphine three times.

After Isaac left yesterday I realized that we didn't have any recent video of the two boys together (actually we may not have any video at all of both boys together).  So, Isaac came back to the hospital again today with his grandparents.  We now have great video of the two of them including Isaac holding Josiah's hand and Isaac listening to Josiah with a stethoscope.

We had more family time today and a good friend dropped by as well.  We've had a lot of help with laundry, packing, and cleaning at RMH.  Thank you!

Josiah's face looks quite a bit puffier tonight.  He threw up a lot of his feed once.  He's been quite calm for a lot of the day but he has gagged a few times. 

Graham and I both waver between wanting to be in the hospital longer and wanting to be home.  We're asking for wisdom in making decisions.

It's time to get some milk for Josiah's 12:00 feed.  We have been so blessed with many uplifting comments and emails.  Thank you all so much for your prayers!  I do hope we sleep well tonight as I haven't had much sleep the last couple of nights.  It is so nice to sleep beside him though.

Blessings,

Elizabeth

Family Day

Last night was a rough night with Josiah.  He was very irritable and none of us had much sleep.  At around 4:00 AM he desatted again and we decided to start morphine and later asked for a dose of chloral.  We called family members in the morning and by the end of the day we had seen all of our immediate family living in Ontario.  It was nice to be together.   Our pastor and his wife also blessed us with a visit.  

We had lots of questions and confusion in the morning but we felt much better after meeting with Palliative Care.  The earliest we could leave SickKids to take Josiah home would be Monday if everything works out.

Josiah had a good afternoon.  He actually ended up doing physio and he went for a long stroller ride in the hallways with his relatives.  We took lots of photos.  He is now on a morphine pump and that along with oxygen should keep him comfortable.  He also has a big bed now so that's where Mommy will be sleeping tonight.  Daddy will be on the couch in the room.

Isaac was able to spend some time with his little brother today.  He said good-bye to Josiah when he left.

It's time to go to sleep.  It's been both a good and hard day today.  It's great to know that we can keep Josiah comfortable.  It's time for some snuggles with him.  We thank God for answered questions and His peace today.

Blessings,

Elizabeth and Graham 

Another non-stop day

This morning Josiah's sats dropped just as rounds were happening.  They pumped oxygen into his nose prongs and gave him additional oxygen via mask, but it didn't seem to improve his readings.  Eventually he did pull through, but it wasn't a good start to the day.  They ended up ordering an x-ray.  X-ray finally called to say he could come well after his 12:00 PM feed, which had been put on hold as they wanted the x-ray done before he ate.  Anyway, the fun news in all of this was that we took him to the x-ray room on the main floor, so Josiah got to take a stroller ride off the 4th floor!  However, the not-so-fun part was that they had to strap him into the Pigg-O-Stat (http://www.piggostat.com/AboutOurProduct.html - apparently named after Mr. Pigg, the inventor) to get the correct body position.  After that drama we returned Josiah to his room and he slept for much of the afternoon.

In the morning, while we waited for x-ray to get us in, we were able to take him for another spin in the stroller.  We also squeezed in a stroller ride in early evening.  For most of the day he has needed quite a bit of oxygen to keep his sats up.  Typically we haven't had to keep him on oxygen during stroller rides, but today we did.  We have been using a small tank of oxygen that Graham straps over his shoulder which makes things much more manageable than the large tanks.

This morning's episode, and Josiah's general malaise today, reminds us that one of these days, barring a miracle, we will need to make a decision about what to do when he experiences a serious decline and is not getting any better.  We look forward to talking through some scenarios with palliative care in the next day or so, so that we can get our thoughts on paper and make clear decisions before being in the heat of the moment.  Ultimately we want to listen to God's leading in all this, but we are also thankful for the trained professionals he provides to help us think through these issues.

Josiah is a beautiful boy and a gift from God.  We are thankful for our seven months with him and will treasure each moment we still have with him.  We really want to get home so that he can spend time surrounded by family and friends who love him.

In the midst of our anxious thoughts, we are reminded again of "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6,7 (NIV)

Thanks again for all your prayers and support.  It means so much.

Blessings,

Graham and Elizabeth

Blue Baby

We are writing this in the basement of RMH as we are doing seven loads of laundry.  Tonight the nurse on duty has Josiah as her only patient (she is training a new hire, so she only needs to provide periodic support to them).  This meant that we could leave after we setup his 9:00 PM feed and won't need to return until first thing in the morning.  This is an incredible blessing, as we needed to do laundry, but also needed to organize the contents of our room to prepare for transport back to Kitchener next week.

Josiah had another busy day, and is looking kind of funny too.  Unfortunately he has had thrush in his mouth, and the previous medication didn't seem to cure it.  So, he's on gentian violet three times a day for the next day or so.  The medicine literally is the colour of writing ink, so Josiah looks like he just chewed on a pen.  It also means his hands are blue from sucking on his fingers.  Thankfully he will be off the medication by the time he leaves the hospital.

This morning Josiah's sats were all over the place, even going to the high 90s during his stroller ride, even without assistance of oxygen.  On the other hand, during some moments of sleep he had sats in the 70s/80s with oxygen.  They are trying to get him on a baseline level of oxygen that provides consistent sats, so that we have the proper oxygen level for him when he returns home.  His ideal sats are around 80 and over 90 is too high. 

Josiah did well during his physio this morning.  We'll take some pictures with the physiotherapist tomorrow in order to make an instructional brochure for us. 

At lunch time we worked with the OT to spoon feed Josiah some fortified rice cereal.  He did surprisingly well, and the OT seemed genuinely impressed with the performance.  It was pretty messy affair, between the gentian violet and the rice cereal.  However, it was great to see Josiah happy and enjoying tasting food.


We also met with the dietician and pharmacist to discuss feeding and med schedules for Josiah.  The dietician is thinking we can adopt a "feed every three hours" schedule, but skip the 3:00 AM feed.  The pharmacist showed us a proposed schedule that includes 13 different medicines (some taken a number of times per day) that starts at 5:30 AM and finishes at midnight.  Thankfully the dietician and pharmacist had mercy and will allow us to sleep from 1:00 to 5:30 AM!  We will continue to work with them to optimize these schedules to make them as "home friendly" as possible, but unfortunately there are certain spacing requirements for meds and feeds, so there is only so much wiggle room with the schedule.

Elizabeth met with the lactation consultant mid-afternoon and discussed how best to wean her pumping.  It was a difficult decision, but it is unfortunately not a realistic option to keep pumping at home in light of the med and feeding schedules being proposed.  Thankfully we have been building up a large supply of pumped milk which we can take home with us.  We were recently blessed with a freezer to use at home to store the milk when we return.

Later in the afternoon Elizabeth changed Josiah's NG tube and Graham gave Josiah his 6:00 PM enox shot in the leg.  Graham had a practice session with the pharmacist earlier in the day, and we both read the NG tube literature earlier too.  Graham will change Josiah's NG tube early next week most likely, so that we both know how to do it.  We even squeezed in a bath for Josiah between the NG tube change and the enox. (Elizabeth here - by the way, Graham was a pro on his first enox shot!) 

Elizabeth's parents came for a brief visit tonight and shared in a meal with us.  It is always great to have familiar faces in the room for Josiah.  He is filled with lots of smiles despite all the challenges he faces right now.  It's nice to share those smiles with others.

Thanks so much for your continued prayers.

Blessings,

Graham and Elizabeth

Questions and Answers

It has been an exhausting day, but at least we have some more information to deal with as we prepare for transition to life back in Kitchener.  The target date for returning home (and it is a moving target), is next Wednesday. 

There are a number of things that we need to learn and practice before we can take him home:

• Inserting and caring for his NG tube
• Giving his meds through the NG tube (at some points in the day he has half a dozen or more at one time -- each has different viscosity, so there is a preferred order for administering them, and then proper flushing of the tube when done)
• Giving his enox shot in his legs twice a day (Elizabeth has already been able to do this several times but Graham has not learned yet)
• Attaching his nose prongs and applying his oxygen level
• Giving him his fortified milk through the NG tube (this involves loading a special container and then prepping the hose that attaches to the NG)

So, if you are praying for us, you can pray that we can learn quickly and feel confident when performing these important functions.

Josiah celebrated his seven month birthday today!  He had lots of smiles today and enjoyed his stroller rides.  He did a lot of sleeping throughout the day, which was handy as we were in a number of meetings so could not be with him.

As mentioned previously, we had a meeting today with 11 of the staff that provide leadership to various aspects of Josiah's care.  The meeting started at 11:30 AM, but we ended up being brought to the meeting at closer to 12:30 PM as they wanted to discuss Josiah before we arrived.  It was good to hear from the team and to clarify some miscommunication.  Even though they were delivering bad news in the sense that Josiah's long-term prognosis is not good (barring a miracle), we felt supported and left encouraged. 

Later in the afternoon we were able to meet with the palliative care team.  They outlined some of the options we have when looking toward having Josiah back home.  As well, they asked that we start planning what we want "life" to look like for our family and for Josiah particularly upon our return to Kitchener.  We will begin to fill in those details over the next several days as we gather information about resources available in the community and mull over what our hopes and dreams are for Josiah and for our family for the next weeks/months/years.  It certainly brings things into perspective to consider that we have a limited time with him, barring a supernatural intervention.  We continue to pray for daily wisdom as we make decisions.

After our meeting with the palliative care team we were able to go to RMH for a gourmet meal provided by Timbercreek Asset Management.  It was good to be out of the hospital for even a few minutes and to enjoy a free meal.

So, it was a good day in many respects.  We were able to talk through some very difficult issues with the amazing staff here and to cry through our questions.  The harder part is still to come, but we know that Jesus will give us our daily bread as walk with Him through this time.

Thanks again for your prayerful support.

Blessings,

Graham and Elizabeth

Bed, bath and beyond

Josiah had a relatively busy day today but managed to squeeze in a number of good snoozes.  Graham was able to take him for a couple stroller rides around the fourth floor which Josiah enjoyed.  In the evening we gave Josiah a quick bath, which wasn't as enjoyable as a stroller ride.  Thankfully he is now sleeping again while getting his nine o'clock feed.

During rounds this morning the physiotherapist worked with Josiah.  He didn't like tummy time as much as on Friday, but it could be because he had just had his 9:00 AM feed.  Josiah did a good job at moving his neck, kicking his legs and responding to noises. 

Later in the morning the occupational therapist came and worked with Elizabeth.  Josiah did very well at tasting some of the fortified rice cereal with formula on the spoon, and was good at sucking his fingers when they put some cereal on his hands.  The goal is to reinforce the idea in his mind that eating with his mouth is a positive experience, after so many months of being fed through his NG tube.

The meeting tomorrow will help clarify many things, but it does seem like we will be heading home fairly soon.  We have been assembling a list of questions to take with us tomorrow as there is so much to plan for the coming days.  As well, over the next few days we will need to clean out our room at RMH so that it is ready for when we do leave Toronto. 

Today we had some good cries, which was helpful emotionally, but is also physically taxing.  Lord willing Josiah will have a peaceful night so that Elizabeth can get some sleep in the room.  Thankfully the nurse tonight said he could handle the 3:00 AM feed for Elizabeth so that she could sleep.  Graham will head to RMH shortly and get some rest before returning in the morning. 

This evening the chaplain came by for a quick visit.  He is very good at listening which is helpful when we need someone neutral to vent our frustrations to.  Yes, we've known for many months that Josiah is medically complicated.  However, everything feels so soon and a bit rushed right now.  We are praying for God's strength and wisdom to get through these days.

Thanks so much to everyone who is praying and who has asked others to pray.  We are also really humbled by all the cards and gifts of encouragement we have received.  It is incredibly strengthening to know we are not facing this alone.

Blessings,

Graham and Elizabeth

The Gift of Presence

Josiah's aunt surprised us with a visit this morning and afternoon.  She was such a blessing as she was able to give Josiah stroller rides while Elizabeth was pumping or resting.  Graham and Isaac headed to church in the morning, and then had a nap after lunch at RMH.  In the afternoon they came over to SickKids and Isaac had a fun time playing with his aunt and seeing his baby brother.  Later in the afternoon Grandma and Grandpa Faulkner came for a visit and to pick up Isaac.  After supper together, Graham headed to RMH with G & G and Isaac, and they got Isaac ready for his big trip to Listowel.  He always does so well with saying goodbye.

Having Josiah in 4D has its benefits and complications.  It allows us to have multiple visitors at a time, and to bring in food as needed.  As well, there is a little bed to rest on, and Elizabeth has privacy for pumping.  However, it does mean that we are providing more hands on care, which is why having family here to free us up was very helpful today.

Josiah may be teething, so he seems quite irritable tonight.  Lord willing he'll be able to have a restful sleep once the Tylenol kicks in.

The next few days will be filled with learning how to care for Josiah from the nurses and other staff.  We look forward to discussing his care with the team on Tuesday.

Thanks to all who prayed for Josiah at church today.  It is really humbling to think about all the people who are interceding for him.

Blessings,

Graham

p.s. Isaac turned 23 months today!  He's growing up so quickly.

Our own room

Josiah was moved to his own room today, which was a bit sooner than we expected.  As we were not prepared, Graham is currently finishing the laundry while I stay in the RMH room with Isaac.  Graham will then head over to the hospital to spend some time with Josiah before returning back here.  I'll head over there in the morning with my suitcase.

It was a challenging day with lots of thoughts and questions going through our minds while trying to deal with a fussy baby with decreased nursing support as well as a sweet toddler who needed more than a 45-minute nap in Josiah's room.  4D is short staffed so we had another one of the wonderful charge nurses from CCCU as our nurse today.  Thankfully she just had one other patient.

It was nice for Isaac to finally see Josiah again but I think it was also challenging for him to see Mommy and Daddy with Josiah.  Isaac has only seen Josiah in his crib twice since we've been at the hospital.  Today he saw us holding Josiah and taking him for a stroller ride.  Isaac definitely wanted to be held more by both of us.  It was nice to all go for a walk together on the fourth floor.

The night nurse last night said Josiah had sats in the 50s when he was upset.  Today he often dipped into the 60s.      

I like to be in control and right now things are out of my control.  I like knowledge yet there's a lot of uncertainty.  I like to know my options and I can't currently see or understand them.  I like to be in control of my emotions in public and they are unpredictable.  There are things I feel like whining about or getting mad about (and yes I regularly tell Isaac not to whine!)  However, I am reminded that God is involved, He wants to do something and it's not all about me or us. 

I am thinking of a dear beautiful friend who has gone through a much much tougher road than I have.  When she was told of her upcoming challenges her first thought was, "My life is perfect and it's about to become more perfect."  My friend looks like Jesus and that's compelling.  Every day I need to choose how I will respond to the pressures I feel.  Jesus has told us that His strength and provision will be enough.  "I do believe, help me overcome my unbelief" (Mark 9:24).  Help me to consider this as "pure joy" (James 1:2).  That's hard to understand.  I thought I might lose it if I stayed at the hospital tonight but I think tomorrow will be better.   

Isaac likes to hide, especially if he knows I need him for something he does not want to do.  I'm too old to hide under the covers but I'll never be too old to need Jesus to hide my heart.  I need his strength for this and I need your prayers and encouraging words.  I also need sleep and knees that aren't swollen.  The song for tonight is Hiding Place by Sara Groves:

I'm not sure if I'll be able to access the Internet from 4D in order to write these posts.  That would be sad for me.  This is a good outlet. 

Thank you for your prayers and kind words - they are both always so welcome!

Blessings,

Elizabeth

God sent me flowers

God sent me flowers today.  Technically, He told someone else to send them and I'm sure He asked them to pay for them too - but God wanted me to have flowers when I arrived home from the hospital.  My wonderful relatives didn't know the news we would receive today, but God did.  A big thank you to my relatives for choosing such beautiful flowers accompanied by delicious chocolate!

God once again set us up with the perfect nurse for today.  I told her tonight that she thought she was there to care for Josiah but she was really there for me today.  She is so good to Josiah.  She is also one of the charge nurses from the CCCU and she's called herself Josiah's girlfriend.  She was fighting for that role with another nurse but I think she won.

As you may have guessed by now, my meeting with Josiah's cardiologist did not bring good news.  The short form is this:  for a variety of reasons, the cardiologist does not expect Josiah to be a candidate for the second surgery (the bilateral, bidirectional, cavo-pulmonary shunt - formerly called the Glenn, which was his first surgery on August 15th and was taken down on August 29th).  It is also looking unlikely that he will be a candidate for a heart transplant.  Also, related to this is the fact that the cardiologists are very concerned about Josiah's current and future neurological status based on the imaging they saw. 

I heard the words "palliative care" today.  

Well, I was looking for something to help me cry ....  This worked.  I haven't had time for a long and good cry but I'm confident that the faucet will work when I'm ready. 

There will be no discussion in the big group on Monday regarding Josiah.  My cardiologist took him off the list.  Neurology will try to assess Josiah on Monday.  There will be a meeting on Tuesday morning with a couple of cardiologists, an OT and PT, a nurse practitioner, a fellow, and someone from neurology.  The main purpose is for all of those people to hear from each other while they are speaking to Graham and me.  I don't know all of the criteria for getting on the transplant list but part of it is neurological so neurology's expectations are important.  However, based on what our cardiologist said, there are a variety of other technical issues that I think would keep Josiah off the list (without a few miracles). 

It was helpful to speak with the chaplain today.    

If the conversation with the cardiologist hadn't happened today, I would have said it was a pretty good day.  Josiah was fussy this morning but I gave him a couple of stroller rides and he did better than expected during physio on his mat.  I don't think he needed suctioning.  He also sat in his tumble form while the OT and I tried to get him to taste formula mixed with rice cereal from a spoon.  He was on 1L/min of oxygen all day and increased to 1.5L/min when I left.  Before I left I was able to rock him to sleep and cuddle him in my arms for around half an hour.  At one point he started smiling and doing a belly laugh while he slept.   

The boy I mentioned yesterday was moved to the CCCU. 

When Isaac arrived he was happy to see Mommy and gave me some cuddles before falling back to sleep. 

Here is our song tonight:

Thanks for your prayers! We know that God can and does heal, so we're praying with you for a miracle.

Blessings,

Elizabeth

p.s. Graham had a nice visit with Josiah tonight.  Josiah had just woken up when Graham arrived, and he gave him lots of smiles.  After his feeding and meds Josiah fell back into peaceful sleep again.  The nurses had turned down his oxygen to about 1L/min as his sats were good. 

Open my hands

The sun was beautiful this morning.  I like the city and the feel of the city as I walk to the hospital.  I'm sorry for writing a novel below.  Short update for busy people:  Josiah had a good day.  

Josiah is having a good day.  He didn't need chest vibes or suctioning today as his chest sounded good.  We thank God for that!  We carried him to a mat in the playroom where his PT assessed his mobility.  Josiah was quite calm and lasted longer than the PT expected.  It was interesting to watch how Josiah's sats dropped to 60 when the PT turned him on his right side.  They also dropped to a lesser extent when he went on his left side.  It was yesterday morning that I noticed him bringing his hands together and pulling things to his face and he was doing it a lot more today.  This is wonderful progress! 

Oral feeding attempts won't start again until Monday as there is still a worry of whether or not he aspirated some of his feed yesterday which could cause pneumonia if the milk had any bacteria in it.  It wouldn't show up for a couple of days and new things are not started before the weekend.  However, I have instructions to give Josiah lots of positive oral stimulation, including giving him some of my milk on the pink sponges he likes.      

The nurse couldn't take blood again this afternoon from the picc line so they decided to TPA it again.  This happened around 4:00 PM so they didn't want to make a final decision about the picc but if they didn't TPA it then it wouldn't be open tomorrow.  If the picc isn't working then it should be removed but whether or not they'll want to or be able to do that on a Friday is a question.  Once the picc is removed they will be watching for any signs of the clot in the heart moving to where it shouldn't move (the picc is in the clot in the heart so it is possible that the picc will actually be difficult to move).  Please pray for wisdom regarding this picc line and for a safe and straightforward removal at the perfect time.

I heard today that the pressures in Josiah's lungs are not currently acceptable for the second surgery.  I don't know if they've come down since his last cardiac catheterization.  Josiah's cardiologist asked to speak with me tomorrow morning.  The large team will discuss Josiah's case on Monday afternoon.  I know one big question is what to do with the clot in his heart and right SVC (and whether or not to do anything).  Please pray for wisdom.  (I'm so thankful that James 1:5 is in the Bible!)

They are organizing a meeting with all the different teams involved in Josiah's care (cardiologist, neurology, thrombosis, etc.) so that they can all be in the room at the same time (along with me) to discuss where we are headed. 

We had a nurse from the CCCU today whom we have had before.  She was happy and surprised to see Josiah doing so well.  One of the staff physicians from the CCCU also came to see Josiah.  I gave Josiah some of his medications and feeds today, we had a cuddle in the rocking chair, we had a stroller ride, and he sat in his tumble chair. I've had him wearing sleepers for three days.  He looked cute in his lion sleeper today. 

It seems like there are a lot of Christians here.  In our hospital room of four families, three are Christians (I'm not sure about the fourth family).  I've also met lots of Christians at RMH. 

There is a boy in our room who needs a touch from God.  He just looks like a boy sitting on a bed but his heart is failing.  His caregivers also need the peace of Jesus.

It probably sounds crazy but it's still hard for me to realize/accept/know/understand that Josiah is sick and has a sick heart.  He looked normal to me and was balanced for three and a half months.  He's been in the hospital since the end of July, he's had three surgeries with lovely scars to prove it and I still want to think, "Just let me feed him and he'll be fine." :) 

Okay - I wanted to post another link to a video but I've had a hard time deciding which one so I think this is going to be Sara Groves week with more to follow.  I actually just discovered this song tonight and I love it.  We've owned the song for over a year now.  It's called "Open My Hands" and it's based on the Bible verse Psalm 84:11 ("No good thing will He uphold from those who walk uprightly.")  I want to "open my hands and heart and nod an emphatic yes to all that God has for me."  I don't know where this journey will take me but I know that I want to walk it closer to Jesus.

One line in this song says, "Pain is no measure of His faithfulness."  Abraham was ready to give up his only son but he did not doubt God's faithfulness.  Well, I just read Genesis 23.  He may have doubted but if he did doubt, he still walked in faith, spoke in faith, and obeyed God.  Can I go through tragedy and still believe and sing that He withholds no good thing from me?  Isaiah 55:8 says that God's thoughts and ways are different than our own.  Many mothers have watched their sons and daughters die, knowing that God could save them.  I want to trust God and His goodness, come what may.


Thank you for your prayers!  You are making a difference in our lives.  

Blessings,

Elizabeth

Wet lungs

When I arrived at the hospital this morning Josiah was off oxygen and looking good.  He even had his chest physio with suctioning and maintained his sats.  At around 10:00 AM his amazing nurse and I took Josiah (in his crib) to the second floor to have an ultrasound.  While we were waiting in the hallway, Josiah gagged and spit up.  During the ultrasound Josiah was quite irritable but his sats were good.  The nurse was concerned about his colour as he became very pale.  He started to desat right when we were ready to leave so she put the oxygen mask by his face.  This nurse worked in the CCCU for a year but prefers the ward as she can be silly with the children and have more of a relationship with the families.  She did say she picked up great skills in the CCCU, especially learning how and what to think when children deteriorate quickly.  

Back in the room, his sats wouldn't stay up so he ended up being put on 1.5 L/min of oxygen which he remained on for the rest of the day.  He threw up again around 3:00 PM for no apparent reason.  The nurse was surprised as it had been three hours since his previous feed.  When he had physio in the afternoon, the PT was able to get out quite a lot of thick secretions, including a large plug.  The fellow called for an x-ray which showed that Josiah has very wet lungs.  He'll get more lasix tonight and they are monitoring him very closely.  If he gets a fever, they will start antibiotics as they will assume he has pneumonia.

His echo from yesterday showed no changes from his previous imaging.  The ultrasound of his right groin showed that the previous clot hadn't changed.  I actually found out that there are two clots there but only one is an occluded clot.

Josiah's picc line was TPA'd again as they couldn't pull back blood.  One lumin was done and then they both worked beautifully and blood was sent to the lab and in less than an hour the lumins didn't work again.  The other lumin was then TPA'd and I didn't hear if that worked.  (Update: I just spoke with the night nurse and she wasn't able to draw back anything but then another nurse worked on it for a while and was able to draw back so it's clearly very finicky which isn't surprising given that the end is inside a clot.)

The nurse practitioner said she would need a full day to read through his entire history.  She told me she's staying on her tiptoes for a while.

We weren't able to attempt any oral feeds or developmental physio today but our new physiotherapist said that Josiah will be on a mat tomorrow (as long as he is stable).  His PT isn't on the floor on Wednesdays but he did come down to do Josiah's afternoon session.  He is very kind and really seems to care for Josiah, telling him what a brave boy he is and commenting on his cuteness.  Josiah usually doesn't like getting the vibes on his chest and hates the suctioning down the back of his nose but the catheter goes in his mouth after that and he calms down right away.  He bites on the catheter and we think he likes the feeling of the suction on his tongue and his right cheek.  That's his treat.   

Two phrases I hear a lot are "it's a balancing act" and "he doesn't have any reserve." 

Grandma and Grandpa L. were able to visit this afternoon and they both pushed Josiah in the stroller.  Even though Josiah wasn't overly stable today, he would go from being mad to giving a beautiful smile. 

Isaac had a wonderful playdate with a friend from church this morning and later in the afternoon he had a Daddy date, getting his hair cut, looking at animals at Petcetera, going to the library and then out to dinner. 

One of the staff members at RMH told me that she brought in ten new families last night and two tonight.  There are room for 80 families here and they have only one or two more spaces available, though there are often people leaving as well.   

Apart from asking for healing for Josiah, I often don't know what to pray for or what to ask you to pray for so that's part of the reason that I let you know what's been going on so you can decide what to pray.  We really appreciate your prayers for Josiah and our family.  We are blessed indeed!

Blessings,

Elizabeth

Pinker

Josiah had a good day today.  He was pinker.  Yesterday was the first time I looked at him since he's been feeling better and I noticed how blue his skin looks.  He had better sats today and he went down from 2L/min of oxygen to 0.5L/min of oxygen. 

Josiah slept a lot today and was also uncharacteristically calm.  His hearing test had to be cut short and is rescheduled for next week.  There may be some hearing differences in his left ear but she thought it was something that he would outgrow.  The previous test showed that Josiah had good hearing in his right ear so we praise God for that. 

I may have mentioned a family here whose daughter is waiting for a bone marrow transplant.  When I arrived back at RMH tonight, they told me the exciting news that a donor has been found!  The transplant won't take place until January.  They are thanking God for this wonderful gift!  

Josiah wore a sleeper today!  It was size 9 months but it seemed a little snug.  Grandma is bringing more from home tomorrow.  It was nice to see him in clothes again. 

God answered an unspoken prayer today.  I had been wondering if we'd see one of the nurses we really enjoyed in April.  She's one of the charge nurses and she did Josiah's carseat test in April.  I walked into Josiah's room this morning to found her as his nurse for today and tomorrow.  I haven't been doing Josiah's enox shots but tonight she passed me the needle and said it was the perfect time to practice (on Josiah).  We were both surprised at how well it went (after I finished my swallowing and aiming routine).

Josiah's heart rate is lower than in used to be but the doctors are assuming it's due to his medication and it's a good thing.  It's been around 104 bpm when he is sleeping and around 110 when awake.  His heart rate doesn't change much when he is angry due to his medicine.    

The OT assessed Josiah as we attempted an oral feed with a bottle for his 3:00 feed.  She was surprised that he didn't gag on it.  He gnaws on the bottle nipple so he barely drank any milk.  She said we might try a spoon feed to see what he does.

It looks like we will probably go to our own room tomorrow or Thursday.  It's clear that I do not have to be there 24-7 so I'll probably sleep at RMH on the weekend while Graham and Isaac are here.  Isaac will be allowed in Josiah's room if he's feeling well.  

I had a nice chat with another heart mom today at the hospital and another chat tonight with the mom of a girl with leukemia. 

Thanks to Oxford Properties Group for an amazing dinner tonight.  It's time to go to sleep.  Thank you for your prayers!  There are a lot of Christians here so it's nice to be able to share the daily good news and thank God together.

Blessings,

Elizabeth

A better day

Josiah had a better day today.  He was fussy this morning but a stroller ride did the trick.  He had a big nap this afternoon and he's sleeping peacefully now without any extra sedation.  He was given extra sedation last night when his nurse was on break.  He was on two litres of oxygen per minute until around 5:00 PM when he was turned down to one and a half litres of oxygen.

They increased his physio to three times per day as his x-ray showed his right upper lobe looking worse.  This is the area that has repeatedly been problematic.

His 3:00 PM feed was my milk fortified with Goodstart formula.  His is still being fed using his NG tube.  When they are happier with his breathing, we can attempt oral feeds.

Thankfully he hasn't had fevers so I think he'll need to stop being diaper boy.  I'm taking over a sleeper for him in the morning.

He is scheduled for a 10:00 AM hearing test tomorrow but he must sleep through it in order for it to work. 

Tomorrow morning the team will discuss if it's time for us to move to our own room.  I'll keep you updated.

Thanks so much for your prayers!

Blessings,

Elizabeth


P.S. Thanks to TD Bank for a delicious dinner! 

Always Faithful

I awoke to the sound of Isaac falling out of bed.  Thankfully the pillow fell first as the flooring is hard.  He only cried for a moment after I picked him off the floor and gave him a hug and then he immediately pointed to the mattress on the floor, deciding that it would be a better place to lay his head.  He was awake for about an hour before he went back to sleep which was mainly my fault because I wouldn't give him milk.  The clock said that it was just after 4:00 AM but I hadn't turned the clock back so I thought it was just after 3:00 AM.  I learned later that the clock automatically changed to the correct time so to Isaac's body it was actually after 5:00 AM.  Within the time he was awake he had a brief period of hysterics when everything I tried to do was wrong.  However, it usually works when I ask him if we should pray to God to ask Him to help Isaac to calm down.  As soon as I start to pray he is quiet and then at the end he will say, "Amen."  After that he was able to lie down and drink his milk which meant that Mommy could go back to sleep.

We made it to church in time to participate in the singing portion of the worship service.  It's great to sing to God in unity with others.  Speaking of unity, it's amazing to have so many people from various Christian traditions supporting us.  Here is a photo of a Prayer Quilt that was made by members of St. Peter's Lutheran Church in Kitchener, where one of Graham's co-workers attends.  It's a beautiful quilt of Noah's Ark that has knotted threads all over  it.  Each knot represents a prayer that was said for Josiah and as people come and pray for Josiah, they can tie more knots.  It's an amazing visual reminder of God's love and His open ears to all of our prayers. 

In addition to this amazing gift from Lutherans, we have had prayer and other practical support from the following traditions in alphabetical order:  Anglicans, Baptists, Brethren In Christ churches, Catholics, Coptic Christians, Mennonite Brethrens, Pentecostals, and others.

My sister-in-law very kindly stayed with Josiah most of the day.  It was great to know that Josiah had someone to cuddle him while we were at church and then eating lunch with Isaac.  Josiah enjoyed the company and had quite a good day with just a few fussy times.  He is now receiving regular ventolin in a mask to help with his breathing and saturation levels.  He was on one and a half liters of oxygen today when we left him.  Here is a photo of Josiah receiving developmental physiotherapy on the weekend. It's not his favourite activity. 

My other brother and sister-in-law also came to visit today so all six adults and four children (not counting Josiah) were able to be together.  It also meant that Graham and I could have a short visit with Josiah together.  It was good timing because the nurse practitioner came to speak with us.  In order for Josiah to go home, he needs to be able to have feeds and be off his oxygen or at least have stable and low oxygen needs.  She thought we might be able to get to our own room this week.  We'll see how Josiah is doing tomorrow to determine if we can try some oral feeding or not.  While we are well aware that it will be Josiah letting us know when he is ready to the leave the hospital, the nurse thought it was reasonable to think that we might be home by the end of November and sooner if all goes really well but hopefully at least by Christmas. : )  One day at a time.  

My brother and sister-in-law brought more cards from church members today.  They are so encouraging to read.  Thank you!

Here is a video featuring Sara Grove's song, "He's Always Been Faithful."  My mother-in-law sang this at our wedding.  He has certainly always been faithful and we know He always will be.  Today we remember our Little One whom we lost four years ago today in an ectopic pregnancy.

Thank you for your love and prayers!

Blessings,

Elizabeth

P.S. I just called 4D and found out that one his CCCU nurses is his nurse tonight.  Yeay!     

Clocks turn back

I will not be turning back our clocks until tomorrow morning, after Isaac wakes up.  Otherwise, the early hour might be too much of a shock.  No one warned me prior to having children that the extra hour is no longer taken up with sleep. :)

I was mainly at RMH with Isaac today while Graham was with Josiah at the hospital.  Josiah was desatting to the 50s and 60s today so the CCRT fellow was called.  An x-ray showed some congested areas in the lungs so he had a mask put on his face with ventolin and more chest physio and both of these seemed to help.  At one point he was receiving four liters of oxygen per minute through his nasal prongs.  He was on two liters for a lot of the day but he is on three liters now.  After the CCRT assessment, he was NPO so he missed his 3:00 PM feed but he received half his feeds at 6:00 PM and 9:00 PM.  He did not gag or spit up today.  The CCRT fellow who was consulted was another one of our previous fellows from CCCU who happened to be the doctor who intubated Josiah the second time.   

Josiah was given extra sedation overnight and today.  He was also given more lasix today through his picc line (he is now on oral lasix regularly).  I believe people think that one reason for his fussiness is all the sedation he has come off of.    

This afternoon we had a nice visit with our family who live near Ottawa.  Both my brother and sister-in-law were able to hold Josiah.  It will be great to spend some more time with them tomorrow and be able to give my nephew more cuddles.

It was nice to be able to get more rest today while Isaac napped but I was also quietly texting with Graham, wondering what was happening with Josiah.

Graham just skyped me from Josiah's hospital bed so I was able to see him.  He was getting more ventolin.  The nurse said that ventolin is like a rush of adrenalin or having ten cups of coffee so it will unfortunately keep him awake for a while.  He will receive ventolin as needed, with doses separated by at least four hours. 

Our amazing physiotherapist from CCCU worked on Josiah this morning so it was nice that Graham was able to meet him and Graham shares my high opinion of him. 

Okay - I have great faith in our ability to get to church on time tomorrow as long as Josiah's condition cooperates, Isaac doesn't throw up, and firefighters don't cook our breakfast.  I hope we don't arrive an hour early!

Thank you for your prayers and support.  I confess I was wondering what floor Josiah would be on when I arrived at the hospital this afternoon.  He is still in need of God's touch and so are we.  I've been extra tired these last few days and my knees are acting up a little.  It's been great to have Graham here.

Blessings,

Elizabeth

p.s. I was able to dip Josiah's soother in my milk and Josiah seemed to like it.

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