An octopus and a chicken

Josiah had a better night last night in terms of the amount of time he slept but he was fussy again this morning.  He was happy to see his grandparents and Grandpa F. rocked Josiah while he sat in his vibrating chair.

I met with a doctor from IGT (image guided therapy) in order to sign the consent forms for the planned procedure.  IGT was not happy with yesterday's plan so the plan actually changed three times.  In the end, Josiah did not have any procedure today other than an ultrasound to check that he doesn't have a clot in his left femoral area.  Thankfully that area is free of clots.  By Friday, they will decide whether or not he still needs to have a picc line.  If he does need it then it will go in his left femoral area.  I'll update you as I know more.

Josiah may be going up to the floor tomorrow (Thursday).  When I realized that, I decided I needed to do an errand that has been on my to-do list for a while.  I walked to MEC to buy a bag to replace my McMaster backpack that I inherited from my eldest brother when I started my undergrad at MAC (let's just say that was a few years ago)!  I was questioning my decision to leave Josiah until my walk home tonight during which I needed to clutch my backpack in front of me as the zippers would no longer be coaxed to work.  Perfect timing!  I am excited by my new Big Pod Sac and I am also happy about MEC prices.

It is Hallowe'en and SickKids had lots of costumes.  The children on the wards dress up and go from floor to floor to receive small toys.  Child Life brought by a new costume for Josiah so you'll see that he was dressed up as an octopus for part of the afternoon.  We also had a borrowed chicken outfit that Isaac agreed to try on tonight.  It would have been fun to see Isaac in person but I am thankful for technology.    

I took Josiah on two more stroller rides today, one with his costume on.  The photo at the top of this page is from his ride yesterday.  Josiah just became fussy if I stopped moving. 

I am so thankful for God's amazing timing.  I was not happy when I learned in August that Josiah would need to be on portagen and not breast milk until six weeks after his drainage tubes came out.  At the time, I envisioned being home and trying to feed two children (one with portagen that apparently tastes disgusting) as well as pumping milk every three hours.  Well, I'm so happy to say that he should be able to start my milk this Friday.  Thus, I have asked that he not start attempting oral feeds until Friday in order to give him the best possible chance to learn to take a bottle.  I would also love to try to breast feed Josiah but I'm not sure if they will let me as they will want his feeds concentrated and they may want to keep a close eye on his total fluid intake.

Although I'm still aware that going to 4D may be a challenge for various reasons, I also realized today that my previous experience on 4D is probably tainting my perspective.  In August we were there for six hours and he needed to go back to CCCU and be intubated.  In April when we were on 4D I was a mess much of the time with new baby hormones surging through my body along with little sleep, pain in various body parts, and the knowledge that I would be going home with a heart baby very soon.  We are in a very different situation now.  I am hoping that he goes to Step-down before his own room but the nurse told me that he wouldn't need to go to Step-down so I'll wait to hear what's decided.  It may depend on what bed is available. 

Thanks to NCR for a great meal last night and leftovers tonight!  I've missed thanking many sponsors of meals as I often eat them around 8:00 PM when the leftovers are in the fridge and there are no longer signs to say who served the meal. 

I was thinking about Romans 8:28 earlier today.  This is a popular verse: "And we know that all things work together for good to those who love God, to those who are the called according to His purpose (NKJV)."  I would like this to be my first thought when I get annoyed by something: God is going to bring good out of this.  What a wonderful, amazing truth to hold onto.  I don't think we can fully understand this truth on this side of heaven with our limited perspective.  It doesn't make sense when things are raw and painful and horrendous but at the same time it's so powerful to know it's true and to know that God wants to bring good and will bring good even out of the very bad. 

Good-night and thank you so much to everyone who is holding up our family in your prayers!

Blessings,

Elizabeth

Joy ride

I'm sad I don't have a picture to post tonight.  I left the camera card at the hospital.  I would have loved to show you a photo of our first venture out of the CCCU!  The charge nurse brought by a stroller today so I wheeled Josiah around the second floor two separate times.  In total he may have been in the stroller for around 40 minutes.  He wasn't smiling but I think that's because he was too busy taking it all in.  No doubt he was shocked to see a world outside his crib.  The first time he had some oxygen on for part of the trip but the second time he didn't have his nasal prongs on.  His numbers were great both times.  His sat probe was attached to a small portable machine that told me his sats and heart rate.  He also stopped all of his continuous infusions of medications and is completely off his heart medication.  His line is only being used for blood work right now.  Thank You Lord!

When I arrived this morning he was not happy and hadn't been happy all morning.  He's not sleeping well at night and doesn't sleep a lot during the day.  He didn't receive extra sedation overnight because he wasn't fussy but he didn't sleep well.  He's still getting fevers and his temperature spikes really quickly.  His temperature was around 37.6 degrees when it was checked and then not too long later it was 39.4 degrees.  That called for more ice and I wiped him with a cool cloth.   

... I just returned from the laundry room.  I had a nice chat with a woman from Kitchener.  They also arrived here on July 31st (the day we arrived from Kitchener).  They have three children and their youngest is at SickKids waiting for a bone marrow transplant as she has no immune system.  Her other two children enjoy playing with Isaac. 

Josiah had a hearing test today.  His right ear passed but his left ear did not.  That could either be because he is having hearing problems in his left ear or it's because he wouldn't stop moving and the test also timed out.  I'm so thankful that he at least has some hearing and he'll have further tests next Tuesday.

He was also referred to ENT (Ear Nose Throat) because the nurse practitioner thought his cry sounded weak this morning.  A couple of doctors came by and put a scope with a camera down his nose to check on Josiah's vocal cords.  They told me that everything looks good.  Yeay!!!  We should be able to try oral feeds soon.  The OT is coming to see Josiah tomorrow morning.

Josiah is scheduled to get the picc line in his arm removed at 2:30 tomorrow afternoon and get a new picc line inserted in his leg.  There will be some extra risk due to the fact that the end of the line is currently in the clot in his heart.  Thank you for praying about this procedure.

Tomorrow will be a busy day but hopefully we'll be able to have another joy ride in the halls.

He did have quite a few beautiful smiles later in the day.  Thanks for all your prayers!  We are incredibly blessed by all the support.  God is good. 

Blessings,

Elizabeth

P.S. I'm sorry I'm not replying to emails.     

Smiles and cuddles

When I arrived at the hospital this morning Josiah no longer had nasal prongs.  The nurse removed them this morning.  He did well without them until early evening when his sats started to decline so he'll have the nasal prongs overnight.  He had a great day with a few wonderful smiles and a couple of cuddles with mommy.

He was weighed again today and I wasn't surprised to see that he had lost some weight as he was NPO twice over the weekend.  His feeds will be more concentrated starting tomorrow.  

Josiah's enoxaparin level was high today so the amount of enoxaparin he receives has been reduced and his level will be checked again tomorrow morning. 

The current plan is to move him upstairs to the step-down room "Thursdayish".  This is a room on the ward with four to six beds with 24 hour nursing.  After that he will move to his own room on the ward and I can stay in that room with him. 

He may get his picc line in his right arm removed this week and get another picc line inserted in his leg.  Given that they will want Josiah to have the Glenn surgery eventually, they would like for the clot in his heart and right SVC to be reabsorbed by the blood as soon as possible.  (The Glenn surgery involves attaching his two SVCs to the pulmonary artery.) 

They are thinking that removing the current picc line, the end of which is in the clot, may help get rid of the clot sooner.  When the picc is removed, they are also planning to do a study with dye that will provide them good images of the clot and enable them to determine whether or not the clot has grown since the MRI.  The ultrasound last week determined that the clot is not extending out of the SVC so that was encouraging.  His new picc line may be able to be smaller, with only one lumin.  That would reduce the risk of a new clot in the new location. 

A couple of the staff physicians who were not on call today came by to see how Josiah was doing.  One of them hadn't seen Josiah without a tube down his nose.   

Thanks so much for your prayers.  I'm happy to see him doing so well and I'm calm but I confess I feel a little on eggshells.  It will be a transition for me to go from CCCU to 4D.  New faces and new people to trust, more responsibility and closer to going home.  The last morning I was at home I rushed Josiah to the hospital and watched him struggle for breath. 

I'm thankful that God is always near and He will continue to give us strength and wisdom.

Blessings,

Elizabeth

Tummy time

The nurse called me today to tell me that Josiah was on his tummy.  The last time he was on his tummy was right before he needed to be reintubated but today was a different story as you may be able to tell from his photo.  He enjoyed being on his tummy and he also had a good cuddle with daddy and time in his chair.  In the photo he is out of the oxygen tent and is just receiving oxygen through nasal prongs. 

This morning he was very agitated and needed some extra sedation.  It finally dawned on me that this happened the last two times that they have decreased his lasix and switched over to intermittent lasix.  I asked the nurse to pass on this information to the fellow but I'll also follow up tomorrow.

In the photo, you may notice the bruises on his thigh.  They are from his enoxaparin shots.  I just remembered two other good things.  His last dose of morphine was last Monday.  Also, he will start seeing an Occupational Therapist this Tuesday.  Okay - one more - this Friday he should finally be able to have my milk again!  Friday will be six weeks since his chest drainage tubes were removed. 

A large number of firefighters came and made a delicious breakfast for RMH this morning.  We thought we might have to miss it but they started it earlier than planned.  I'm afraid Isaac was not a fan of Sparky the "dog".  I needed to remove Isaac from the room after Sparky approached.

Once again I was challenged by the message at church.  If I am a follower of Jesus, I need to put into practice what He teaches me and not just study and learn about Jesus.  That sounds so basic but I've been guilty of delighting in new ideas or a new understanding of a scripture but not applying it in my life.

Another great reminder was that we need to put our faith into practice while walking in community with others who are trying to follow Jesus.  That looks a little different now.  I can't wait to get to church on Sundays but it can feel isolating as I am with strangers who don't know my story or my name.  It should feel isolating as it is a stark contrast to what meeting together should be and is during regular times.  We have made the choice to limit our interactions in the local church here due to pumping schedules and meal and nap schedules and the desire to maximize our time with our children (Graham only gets to see Josiah on the weekends and I can only spend time with Isaac on the weekends).  This is just for a season and we are being upheld by our home church, family, and friends in countless ways.  God has provided for all of our needs through so many people.  

Isaac's memory is better than mine.  There were some staff from the ROM at RMH this afternoon.  At one table a woman told us about a bird.  Hours later I told Graham that we had learned about a bird called red something.  I asked Isaac and he said "red knot".  I was surprised.  I assure you that Isaac is well practised in the art of crying but he also loves to laugh and finds lots of things funny.  It was so nice to laugh with him this weekend.

Thank you for all your prayers and support.  It will be nice to find out the next stage of the plan for Josiah tomorrow.

Blessings,

Elizabeth    

Extubated

Josiah is extubated, as you can see in this photo.  Thank You Lord!  They waited until mid afternoon in part because Josiah was very restless and had a fever and also because there were other procedures going on in the unit.  He was able to go straight to the oxygen tent without CPAP.  It would be so wonderful if he didn't need to go on the CPAP mask.  The staff physician told me that one of the main signs that extubation isn't working is a higher heart rate but Josiah is on medication to keep his heart rate down so it may be harder to tell with him.

Graham is with him now and was with him when he was extubated.  Graham just emailed to say that he is doing well but fighting sleep.  It must be very different to have a big plastic box around your head.  You can see the restraints on his hands that I've written about before.  The blue tube in the back delivers the oxygen.  He is currently on 33% oxygen and his sats are in the low 80s.

They were going to TPA his picc line again but they were finally able to get blood back from his line.  In the past this has meant that it may be TPA'd soon.  Please pray that Josiah will continue to be able to breath on his own without assistance.

It was a rainy day today but Isaac was easy to entertain inside.  We were playing "I spy" out the window and he kept pointing out all the birds he saw.  Family lent us a Noah's Ark which Isaac loves.  Today he pointed to the material on the peacock that is supposed to be colourful feathers and called it a backpack.  It definitely looks more like a backpack than feathers.

Random recollection:  During one of my babysitting jobs in high school, I discovered the movie Babe.  The only thing I remember from it is that I loved the song played during the closing credits.  I didn't even remember that the song was actually in the movie until I just searched for it now.  I need to start singing "If I Had Words" to my boys.  "If I had words to make a day for you/ I'd sing you a morning, golden and new/  I would make this day last for all times/ Give you a night deep in moonshine."  Here's a clip of Farmer Hogget singing to Babe.  I hope to dance in my kitchen with Josiah in my arms, singing loudly.  If Isaac wasn't sleeping, I'd be singing now. 

We received so many encouraging cards from church members this week and some precious gifts for Josiah from youth I have never met.  God bless you!  The body of Christ (the church) is amazing.  Thank you for your prayers and support! 

Blessings,

Elizabeth

Aiming for tomorrow

Josiah is not extubated but the plan is to extubate him tomorrow at 10:00 AM.  He had a good day.  The staff physician wanted his oxygen level weaned.  It went from 50% to 45% to 30%.  The other concern was that he didn't have much of a leak in his tube.  Before extubation, he always has a number of doses of a steroid which should help prevent his throat from closing after the tube is removed and it usually helps produce a leak around the tube.  This tube has now been in him for four weeks.  Hopefully his leak will be bigger by tomorrow morning.  We found out around 3:30 PM that he wouldn't be extubated.  Graham will be present for the extubation while I'm with Isaac.  

Time for bed!  Thank you for your prayers!

Blessings,

Elizabeth

Plan for extubation

Josiah had an amazing day!  I held him twice and he was sitting in his vibrating chair for hours.  He came off his rate on his ventilator and came down to a peep of 6 late this afternoon and will go to a peep of 5 in the morning.  The plan is to try to extubate him tomorrow after he has an ultrasound.  He will be NPO after having a feed around 5:30 and he has started his steroids to help his throat after the tube comes out.

The think he may have thrush in his mouth so he'll be on new medicine to help with that for at least five days.

I had a great visit with a friend tonight.  Friends are such a blessing.

I asked this morning if Josiah could get a neurology consult for his fevers as the assumption is that the thermoregulation in his brain is off.  Apparently they wouldn't do anything about the fevers apart from managing them with ice and Tylenol so we won't have a consult now.  We'll see if the fevers are still present after extubation and after he gets his lines out, etc.

I was gifted with a stethoscope from my friend and I used that today to hear the "pop" sound in his stomach before I checked for aspirates. 

Thanks to McDonalds for a great meal tonight.  Thank you for your prayers!  Please pray that the doctors will know clearly tomorrow whether or not it is the right time to extubate Josiah.

Blessings,

Elizabeth

Uncomfortable

Josiah seemed uncomfortable for most of the time he was awake today.  When I first saw him this morning, he wasn't agitated but he just looked like he didn't feel well.  Yesterday and today he has been moving his head from side to side over and over again in apparent discomfort.  I found spots on his head that may be bedsores so the nurse put duoderm on them.  He did sit in his vibrating chair today so that was good for him. 

I spoke to the dietitian today and she may increase his calories but we'll wait to see what his weight is on Friday.  They prefer to increase the volume of the feed before increasing its concentration but we will have to find out if the doctors are willing to increase his total fluid intake. 

I found this song in July.  Graham already knew about it but I must have missed his memo.  To me it speaks of getting to know God more and in a new way.  It would be good to draw closer to God, though I'm not sure I'm doing that.  I may be scared to hear what He wants to tell me. 

The nurses love that we are very calm when it comes to Josiah.  One of our previous fellows came and visited us yesterday.  She's not in the CCCU right now.  One of the staff physicians also dropped by today to ask about Josiah, as did the chaplain.  The team here is wonderful.  It's true that I am calm but I wouldn't want you to translate that as meaning always nice, as that would be untrue.  Unfortunately mean lines come to mind quickly if I am hurt or annoyed by something.  Usually those one liners stay in my head until Graham gets to hear them when I replay the day.

Thank you everyone for your prayers and support!  Isaac now has a big boy's bed in his room.  I hope he sleeps through the night.  Thanks to Sony for a great meal tonight.

Blessings,

Elizabeth   

A rainy day

I like the rain.  I smiled as I walked to the hospital, getting wet.  Given the weather, I thought I'd post this song that first spoke to me a few years ago,  Casting Crown's "Praise You in the Storm":
 

I just had a cry as I read the story of the little girl who inspired this song.  She died of cancer, trusting Jesus until she saw Him face to face.  God deserves all praise.  I can sing, "You are who You are, no matter where I am." 

Josiah once again had his breathing tube retaped three times within twenty-four hours.  It's frustrating.  His fever went to at least 38.9 degrees today and then the ice and Tylenol brought it down.  He seems to spike fairly quickly.  Thankfully he did well during physio and he didn't have any major desats all day.  He gagged and vomited during his 3:00 PM feed this afternoon.  The nurse's desk is actually quite a distance from Josiah's bed so both times he vomited, I called the nurse over to help.  I looked up his new medicine tonight and it says that it can upset his stomach so I'll ask the pharmacist about this tomorrow.  Please pray against adverse effects of the medications.  The main goal for Josiah right now is to wean his ventilator settings and try to get him extubated. 

I had a nice visit with a friend today.  Today is the twelve week anniversary of our arrival in Toronto.  God has taken care of us every step of the way. 

Tonight Isaac is sleeping in a big bed at his grandparent's home and tomorrow night Graham and his dad will take down Isaac's crib and replace it with a bed.  Graham will take photos for me.  I wish I could be in two places at once tomorrow night.  My big boy keeps growing up.  The first week I arrived here, Isaac started calling me Mommy instead of Mama.  On the weekend I noticed that Papa is now Grandpa.

Today is the third time that I have met different parents who were once in the CCCU and are back visiting the hospital for a clinic visit.  It's nice to see them and hear that their babies are doing well.  The couple today is actually from Kitchener.

Have a good night!  Thank you for your prayers and support!

Blessings,

Elizabeth

Mommy's turn

I held Josiah late this afternoon.  I'm afraid I actually said to the nurse that it was non-negotiable.  His numbers were good, he didn't have a fever, and he was awake and calm.  It was nice to have him in my arms after more than three weeks.

This morning he was given chloral to help him to be calmer during the echocardiogram and later he had ativan as he was quite agitated.  He also had tylenol due to his fever.  Thus he was asleep most of the day.

The echocardiogram showed that the clot has not grown.  During rounds I heard the staff physician say that the clot is not mobile.  The medical team has decided not to do anything about the clot at this time (he is already on the anticoagulant medication).

They are starting Josiah on a medication that should help dilate his pulmonary veins in the hope that it will help him to desat less.  He is back on the ventilator wean to try to move towards extubation.

Thank you for your prayers!

Blessings,

Elizabeth   

In his daddy's arms

We thank God for His wonderful gifts!  Graham was able to hold Josiah today!  It was wonderful to see him out of his bed.  He did have a fever and he needed extra suctioning but I think he was happy to be in his daddy's arms.  A bonus gift was that the three of us could be together as Graham's parents visited.  They watched Isaac while Graham and I were with Josiah.

Josiah had a good night last night and a good day.  He didn't need any extra sedation.  He settled quickly after being suctioned.  He was cultured again today so we'll find out if anything has grown over the next few days.  I'm assuming he will be back on his amoxicillin tomorrow after being off it for three days.  Josiah seems to like watching his Baby Einstein dvds; it's nice for him to have a positive stimulus.

Our day of rest started off with three loads of laundry after Isaac welcomed the morning by throwing up all over his bedding.  This is our son when he is teething.  Daddy gave him a bath and I went to the laundry room.  Prior to this episode we were on schedule for getting to church on time.  We had high hopes of being able to join in the singing but once again we arrived just as it was ending.  The sermon was about discipleship and the role of the body and baptism.  He said that in the West we have often turned discipleship into gaining knowledge as opposed to really becoming like Christ.    

Isaac's teeth did not keep him from laughing.  I spilled some water at the hospital and he thought it was very funny.  His laugh is contagious. I wouldn't want you to think that he's always laughing.  A few times this weekend he has been inconsolable. 

It's slightly chilly in my room right now which is perfect for wearing Graham's sweatshirt and enjoying some hot chocolate.   I cried a little last night but I was just crying over the story in the book of the family whose first born and second born died eighteen months apart at four months and five months of age due to the same disease.  The parent's declare God's goodness.  My tears for them did not become tears for Josiah.  They will come.

We are so grateful for all the support we are receiving.  The comments and the emails are so encouraging - thank you!  Josiah will have an echocardiogram in the morning to see what's happening with the clot in his heart that is completely blocking his one superior vena cava.  There will be a discussion about next steps in the afternoon.  Please pray for healing and for wisdom for the medical team.

Blessings,

Elizabeth

Fun at the ROM

Isaac had a fun time at the Royal Ontario Museum this morning.  There's a discovery area for young children where he enjoyed playing and he liked the dinosaur skeletons and all the animals he saw.  I love watching him play and learn new things.  The only negative repercussion was that his sleep schedule was thrown out the window so we were paying for it around dinner time.  I hope he will sleep through the night.

Josiah's day was similar to yesterday.  He's had another fever and was cultured.  His sats are currently low 70s and he's on 65% oxygen.  His sats are not very stable as he desats when he gets agitated which happens easily.  The nurse told Graham that he wasn't stable enough to hold today.  More movement also causes Josiah to cough and have more secretions and need more suctioning so there are a few reasons why holding Josiah isn't ideal.  I just can't imagine being in a bed so long.

Isaac is sleeping and Graham is with Josiah so I'm typing in the washroom and listening to music - currently the hymn "I Surrender All".  Now it's "Give me Jesus" and "Never Once".

I love Steven Curtis Chapman's song "Our God is in Control"  The first part reads:

This is not how it should be.
This is not how it could be.
But this is how it is,
And our God is in control.

This is not how it will be,
When we finally will see.
We'll see with our own eyes,
He was always in control.

And we'll sing holy, holy, holy is our God.
We will finally really understand what it means.
So we'll sing holy holy holy is our God
While we're waiting for that day. 


I can't imagine doing this without Jesus.  I'm going to sign off.  I'd like to start rereading One Thousand Gifts by Ann Voskamp.  It starts out with the memory of her toddler sister dying and how the family "snapped shut to grace."  I love the poetry of her words.  I need her reminder that "there's a reason I am not writing the story and God is.  He knows how it all works out, where it all leads, what it all means.  I don't."  I also think it might help me cry.  I'm not losing hope, it would just be nice to have a good cry.

Graham just emailed to say that after a retape and suctioning Josiah's sats are in the high 70s.  Thank You Lord!

Thanks for your prayers and support!

Blessings,

Elizabeth

More sedation

Josiah needed to be given chloral and two doses of ativan today to calm him down in order to get his saturation levels to improve.  He was very sensitive to any disturbance though he apparently had a very good physio session this morning.  He desatted to the 30s once today. 

He felt warmer to me at one point so I asked a nurse to check his temperature and it was 38.7 degrees so they took a blood sample in order to check for a culture.  He has needed extra pokes last night and today because his picc line wouldn't draw back blood but each lumin was TPA'd and thankfully they now both work. 

I was hoping to hold him today.  He hasn't been held in three weeks.  The nurse said I could try holding him when she weighed him but he didn't end up getting weighed and he seemed too sensitive anyway.  There were a number of sterile procedures happening in his room so I couldn't be in his room for a long time.

We received free tickets to the ROM so we are planning to take Isaac there tomorrow morning.  We heard that there is at least one area that is meant for his age group and we expect he'll enjoy it.  He woke up tonight when he arrived but he went back to sleep quite well.

Graham had a nice visit with Josiah tonight -- Josiah even gave some smiles at one point.  When Graham left, Josiah was resting peacefully and his numbers looked pretty good. 

Thanks again for all your prayers.

Blessings,

Elizabeth

Praise God for two superior vena cava!

I left Josiah for his MRI and cardiac catheterization around 8:20 this morning.  After the MRI the doctor called to tell me that they found his left superior vena cava narrowed and his right superior vena cava completely blocked with a clot that originates in the heart.  We knew there was a mass in his right atrium that was a probable clot but it had looked like it wasn't blocking anything during previous echocardiograms.  After the cath, the interventionist cardiologist came and spoke with me.  She was able to dilate Josiah's left SVC with a balloon a number of times.  Sometimes the SVC does not respond well to this treatment but thankfully Josiah's did respond well and it resulted in great haemodynamic improvement.  The narrowing is related to scar tissue from the reversal of the Glenn surgery back in August.  They will continue to watch the left SVC with imaging but it is expected that it won't narrow again.

The original reason for having the MRI and cath was that the echocardiogram last Friday morning showed turbulence (and therefore narrowing) in the lower left pulmonary vein and the confluence area.  From today's cath it looks like the apparent narrowing is due to compression from the heart as opposed to the vein actually being narrower.  So, we praise God for that news as well.  The other veins look okay.

From my understanding, neither procedure showed a reason for his desats but we are assuming that they are related to Josiah getting agitated.  He had desats to the 40s shortly after he came back to his room.  He was bagged and suctioned and sedated and they have been up since then (mainly in the 70s).

It's funny how the first time I heard the word clot in early August, it sounded like a very scary word.  Over time you get used to the word clot and it's not scary any more.  Josiah's first clot is in his right groin and it was from one of his lines.  We also know about a probable clot in his brain and this one in his heart and SVC.  The current treatment is enoxaparin which he is taking.  He has been on anticoagulant since his first clot was discovered.  They are increasing his dose to get to the top end of the therapeutic level.  He was in the middle of the range when his level was checked yesterday.   

They are unsure if the clot in his heart has grown and blocked the SVC or if it was always in the SVC and they just didn't see it.  The plan is to use the MRI images as a baseline and have an echocardiogram on Monday morning to see if the clot has grown.  Then, Josiah will be discussed by a team on Monday afternoon.  If it hasn't grown, they may just continue with anticoagulant.  If it grows, there will be lots of discussion to decide what to do.  Please pray for wisdom for the medical team. 

One additional challenge is that his picc line is directly in the clot so there is a question of what to do when the picc line needs to be removed.  This afternoon the nurse was unable to take blood from either lumin of the picc line or from his new IV.  She had to take it directly from his arm.  It will be sad if they need to start regularly poking him for blood.

Finally, you know that Josiah has basically had constant fevers.  He always has ice on his head and when it comes off for some reason, his temperature starts to climb.  A ton of cultures have been taken but no reason for the fevers has been found.  There is a chance that the clot is infected.  The Infectious Disease doctors want to stop his amoxicillin, an antibiotic that he's had since birth because he does not have a spleen.  They are wondering if the amoxicillin is the reason that his cultures have been negative as perhaps the medication is masking the problem.  The staff physician did not want to stop his amoxicillin but she agreed to do it for the next three days, during which time cultures will be taken every day.  Another potential reason for the fevers would be a faulty temperature regulator in his brain.

A friend is coming to visit later this afternoon so it will be nice to spend some time with her.  Thanks very much for your prayers for the procedures today and your ongoing prayers.  We are in the hands of a good, loving, faithful, and merciful God.  I look forward to seeing Graham and Isaac tomorrow night.  For the last few weeks Isaac has spent the first part of the week with my parents and the last part of the week with Grandma F. at our home.  He still makes us all laugh.

Blessings,

Elizabeth

Early to bed

I need to be at the hospital at 7:15 AM tomorrow so I'll be heading to bed early tonight.  Josiah is scheduled for the first catheterization of the day which will be followed by his MRI.  I heard the risks and signed the consent form this afternoon.

Josiah would not settle last night so he was given extra sedation again.  Today he had two desat episodes.  The first time he seemed to be resting and then his sats went to the 50s.  He came back easily after the nurse bagged him.  I was eating my lunch and not at his side during the second episode.  The nurse told me that she noticed his feet moving and went over to him and realized that he was very blue even though his sats were reading okay and he was working harder at breathing.  She bagged and suctioned him but that wasn't enough.  More nurses and the staff physician came, he was put on full ventilation, and he was given adivan.  He now has NIRS on his flank which he's had for a week or so.  This is new protocol for single ventricle babies.  In this episode his NIRS numbers went very low.  It was suggested that this may have been pulmonary hypertension or his ventilator tube somehow became obstructed. 

There is now a Single Ventricle Team made up of four physicians and two nurse practitioners.  A physician and one nurse practitioner do rounds each day for all of the single ventricle kids.  My understanding is that a group from SickKids toured a hospital in Milwaukee which has an amazing reputation for treating congenital heart defects.  They observed for a week and are now putting some new things in place at SickKids.

I needed new shoes.  My old ones have been around for a few years and are showing their age to say the least.  Last night Graham said I should buy Merrell shoes.  I'm quite frugal but I do want shoes that are good for my feet.  To make a long story short, I just happened to find a pair of Merrell shoes today that were mistakenly ticketed for a price that was over 50% off.  They honoured the ticketed price.  Thank you Lord!  That was a wonderful gift.

Please pray for these procedures tomorrow.  We want Josiah to be safe from harm during these procedures and we want the doctors to find out what's going on with Josiah.  Thank you for your support and prayers!

Blessings,

Elizabeth

Flu shots

Graham and I both received our flu shots today separately.  Mt. Sinai Hospital had a clinic in their main lobby area so that's where I had mine done.

When I called the night nurse this morning she said that Josiah had had the most amazing night.  There were no fevers or desats and he slept for six hours straight.  I assume he probably had ice on his head to keep his temperature down.

When I arrived at the hospital this morning he had two bags of ice on him and his temperature stayed around 38 degrees for most of the day.  His morning x-ray showed that one of his lungs was partially collapsed so he had two chest physio sessions.  Unfortunately he needed his tube tapes changed twice.

I enjoyed visits with two friends today.   I also just happened to be in the lobby at the right time to receive a free small but good-sized sample of a pumpkin spice latte.   

I'm pretty sure that I may have seen a few smiles on Josiah's face close to 7:00 PM.  It is hard to tell with the tape on his face but they seemed like smiles and it was very nice.  A smile is very rare for me.  In fact, often when I arrive at his bedside he looks at me and starts to cry.  The nurse practitioner told me her theory that in the hospital babies like Josiah cry with people whom they are comfortable with and know.  So, I guess I should assume his tears are a sign of his love.     

I'm aiming to go to sleep earlier tonight so I'll bid you goodnight.  Thanks for your prayers and support!

Blessings,

Elizabeth

Immunizations

It was quite disappointing to find out this morning that Josiah would not be having his MRI and catheterization today and he wasn't able to fit into the schedule until Thursday morning.  He missed his 6:00 AM and 9:00 AM feeds as we were waiting to find out if he would be taken today.  The unexpected is always a little hard to take.  It seems funny the way my mind works but desats and arrhythmias are not a surprise but I thought Josiah would be in for his procedures at least by Tuesday.

I went for a walk but I don't think it was too helpful.  However, I was encouraged to hear during rounds that Josiah was stable enough to have his four month vaccines which he missed.  That's one more thing checked off my list.  I left at 7:00 PM but then it hit me around 9:30 PM that I should have stayed in order to be with him when he received his vaccines.  I remember Isaac getting his vaccines and they were painful.  I called his night nurse and it was wonderful to hear that he did very well with his immunizations.  I forget what it's called but they applied a cream on his thighs that provided a numbing effect to help decrease the pain of the needle.  It's great to know that God is always with Josiah.

It also helps to know that God is always with Isaac.  Mondays are a little hard on him as they are the transition day.  He has Mommy all weekend and then he just sees me on a screen twice a day for the rest of the week.  It's working ... it's just that Mondays are harder for him and of course for his loving and patient grandparents.  It also seems like he's teething so perhaps that's the bigger issue.

Thanks for keeping us in your prayers!

Blessings,

Elizabeth



  

Stable day

It was wonderful to be in a worship service this morning.  The challenge at the end of the message was to make my first thought whenever I meet someone to be, "Here is someone who is infinitely valuable and precious to God."  It's called the Luke 15 Challenge because that chapter includes three stories that show God's love for us.  I didn't quite rise to the challenge when an older boy took Isaac's toys.  Isaac did not know what was going on but he did want his zebra back and mommy delivered.  I'll try the challenge again tomorrow.  Actually, the sermon was about our motivation for sharing the good news.  It's all about Jesus.

Josiah was stable today.  I gave him a bath with his nurse and learned some more things about giving him his medications and feeds.  The nurse said I should just go and buy a cheap stethoscope so perhaps I'll do that tomorrow.  I won't know until tomorrow morning if they were able to schedule Josiah for the cath and MRI tomorrow.  It will be done as soon as possible. 

It was great to spend the weekend with Graham and Isaac.  Thanks for your prayers for all of us!

Blessings,

Elizabeth

Reason to celebrate

Josiah is six months old today!  Graham took some photos but I haven't seen them yet.  Graham is with Josiah now, Isaac is sleeping in his bed and I am typing on a chair in the washroom. 

The first part of the plan today was to increase Josiah's propranolol to the correct amount for his weight.  He started on this medication after his tachycardia and arrhythmia the other day but they always start on a small dose first to see his reaction.  He is now at the correct amount.  This means that Josiah's baseline heart rate is now lower.  Today the baseline was in the 120s but the nurse said it could be lower tomorrow.  I actually saw it at 109 yesterday for the first time.  The nurse told me that we can't assume Josiah is not mad just because his heart rate is not as high because this medication should stop it from going too high. 

Next, they decreased his continuous lasix infusion to prepare for the transition to intermittent doses.  Unfortunately Josiah did not have a good afternoon.  At one point it seemed like he needed to be continuously suctioned as they would remove his secretions and then he would cough up more secretions.  This is probably obvious to most people reading this but I asked the nurse yesterday what the worst part of being suctioned is.  Not surprisingly, not being able to breath came out on top.  He has a big tube down his nose to his lungs and in order to be suctioned, he needs to be removed from the ventilator so that a small catheter can go down the tube and get the secretions.  It's sad to think that he has to have this feeling so many times a day.  The nurse thought he was sensitive to the lasix wean so he was given an extra bolus to help him and his ventilator settings were turned back up again as he was desatting.  When I left he was back on 40% oxygen, with a peep of 7 at a rate of 25.  He also needed a dose of ativan to help calm him down.  His temperature was near 39 degrees when I saw him but it was coming down.  

The doctor ordered the morphine wean so that would have started last night or this morning.   

His main nurse today is one of the charge nurses.  She last had him in April when he was in the CCCU for a few days.  She was showing me how to make his bed so that it has the least amount of blankets and rolls in order to try to keep him cooler.  Typically most nurses always give him three or four rolls but she said that one behind his back is enough.  She also said that she wants to teach me lots of things tomorrow so I'll know how to do them myself and/or advocate for them to be done.  She is a lovely nurse from England.   

I was thankful to speak with the staff physician today.  He explained that the turbulence in Josiah's veins and confluence area means that there is narrowing.  The MRI and catheterization (that they are hoping will happen on Monday) will give them a much better idea of what is happening.  Both of these procedures can actually happen one after the other in the same room so he can remain under anaesthesia for both.  The turbulence might explain Josiah's desats.  If more blood goes to his lungs it would start to build up due to the narrowing in his veins and he would desat.  I don't yet know what the options are if this is the case but I will wait to hear the results next week.   


I am in trouble.  My 22 month old is already outmanoeuvring me.  He wanted to take some animals down to the kitchen at lunch time.  Daddy said he could have two and he said he wanted five.  I said I needed to be able to carry them back and he immediately said, "pockets."  Grandma F. told me that on Friday he folded over the pages of a book and made it fly, saying it was a butterfly (a great opportunity to teach him about caring about books).

Graham is back.  He said that Josiah is sleeping peacefully.  It is time for us to sleep peacefully.  Thanks for all your prayers!

Blessings,

Elizabeth

Peppermint Mocha Latte ...

... with whipped cream no less ... AND a raspberry truffle cake pop!

What could I possibly have done to deserve such decadence?

For the first time, I successfully gave Josiah his enoxaparin injection.  It actually took me two tries so perhaps the cake pop wasn't justified but may God bless whoever invented such deliciousness.

I have a lot of favourite nurses and today's nurses were definitely on the list.  They had Josiah when he was at his worst.  It was nice to be able to give Josiah his needle with them supervising.  They talked me through it.  It was probably a little stressful for them waiting for me to finally push the needle.  It's just a small insulin needle that's used.  The first time I barely pricked him and then realized that I needed to use quite a bit more pressure but the second time went well.  I think it's going to take quite a few more times before this becomes comfortable but thankfully Josiah doesn't seem to mind the injections.  I practiced my fingering on an orange a number of times today.  I thank the Lord for helping me!   

Graham and Isaac are on the way so I bid you good-night and thank you for your prayers!

Blessings,

Elizabeth

So close

Josiah's echocardiogram showed that there is turbulence in one of the veins that go from his lungs to his heart.  There is also turbulence in the collector area where these veins meet.  You may recall that these veins were rerouted as they used to go through his liver before they went to his heart.  I'm not sure what turbulence might indicate but they are trying to book Josiah for both a cardiac catheterization and an MRI on Monday.  As he will need to be intubated for these procedures, he's not going to be extubated until they have been completed.  So, the tube down his throat and the retaping on his face, and the suctioning will all continue. 

I'm thankful that I requested that he be NPO after his 6:00 AM feed as the original order was for 5:00 AM.  Thus, he only missed his 9:00 AM feed.

Once again Josiah was agitated earlier this morning and was therefore given chloral.  He slept all morning and was sleeping when I left him to come back to RMH to do some laundry.  I expect he may sleep all day again.  He's also been given two doses of tylenol as his temperature was climbing towards 38 degrees.  The nurse asked if I would like to start giving Josiah his medications.  I will sit down with the pharmacist next week and she'll explain everything to me and give me a chart so I know when to give him his oral medications (via NG tube).

I spoke with the dietitian.  Even though Josiah didn't gain much weight over a period of five days, if we look over a longer time frame, his average is pretty good.  He'll be weighed again today so that will give us more information.

Thanks for all your prayers.  I look forward to seeing Graham and Isaac later this evening.

Blessings,

Elizabeth

   

Extubation Tomorrow

The plan is for Josiah to be extubated tomorrow morning.  Tonight at 12:00 AM he'll have his first dose of a steroid which should help if his trachea is swollen at all due to the tube.  He'll have his 6:00 AM feed and then he'll be NPO (nothing passes orally) until he is extubated around 10:00 or 11:00 AM.  It sounds like the CPAP mask will be close at hand when he's extubated but they may try to start him off in only an oxygen tent.  It would be amazing if he didn't need the mask, a.k.a. a windstorm, on his face.  After he is extubated he'll be NPO for another three or four hours. 

He was quite sleepy today but he did open his eyes to see his grandparents.  I was told that he was agitated around 4:00 AM and he was feverish so he was given ativan.  The nurse said that might have been the reason that he was sleepy all day.  He's still getting a low dose of morphine every 8 hours and clonidine every 6 hours but the morphine wean may start again tomorrow. 

He was weighed last night but he hasn't gained much weight over the last five days.  I'm going to speak with the dietician about this tomorrow to see if there's a way to increase or optimize his feeds.  He is currently receiving 85 millilitres of portagen every three hours.  I gave him a few of his feeds today.  He was getting them by a pump but I asked to try him off the pump, just using gravity and his NG tube and he tolerated it well. 

The team consulted with EP (electrophysiology) regarding Josiah's arrhythmia yesterday afternoon.  I believe they are recommending that Josiah should start taking a new medication but I should find out more tomorrow.

He had ice on his head most of the day but he didn't spike any high temperatures.  He 's going to have an echocardiogram tomorrow morning because the last one didn't get a good view of his pulmonary veins. 

I saw Aleeda's mom today and things took a small turn for the better.  She was encouraged.

Isaac turned 22 months today!  I look forward to giving him a cuddle tomorrow night when he arrives.

Please pray that Josiah's extubation goes well and lasts.  Thank you for reading, praying, and supporting us.  A friend of mine reminded me of one of my favourite verses tonight.  Isaiah 41:13 says, "For I the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee." 

Blessings,

Elizabeth

A better day

It's been a good day.  Josiah was awake at times and he didn't have any big desats.  His ventilator was weaned from a peep of 7 in the morning to 5 by the end of the day.  They are planning to try to extubate him tomorrow or the next day if possible.  There was no evidence of fungal matter in his abdominal ultrasound so he was taken off the antifungal medication.  He had an echocardiogram today but I didn't hear that it found any new information. 

At around 5:00 PM Josiah was suctioned and his heart rate went to 202 bpm.  When I left at 6:30 PM his heart rate was still 190.  He had an ECG but it was hard to confirm if Josiah was having an arrhythmia.  When I called tonight the night nurse told me that the rate was coming down to the 170s and they had decided to give him some amniodarone to help it decrease.

They are testing Josiah off of the cooling blanket to see what his fevers do.  Due to the way the cooling blanket works, it's difficult to know what's happening with his temperatures.  It's set on auto to a certain temperature but Josiah's temperature overshoots the mark which means he goes from being cooled to being heated to being cooled ....

I decided to cancel the family meeting tomorrow as Josiah has taken some strides forward so the potential catheterization will be put off to at least next week.  I regularly ask all my questions and they are answered so at this point I don't see a need to sit down with everyone. 

The nurse asked if I wanted to start getting Josiah's feeds for him and giving him some of his medicines which he gets through his NG tube.  I prepared his enoxparin injection but I didn't give it to him.

I was chatting with another heart mom tonight.  Her daughter Aleeda is around the age of Josiah and she is waiting for a heart transplant.  She has started to deteriorate recently.  If she deteriorates too much, she won't be a viable heart transplant candidate and she'll be taken off of the list.  The stress of waiting and not knowing is starting to get to Aleeda's parents.  She said she just needs something to happen.  I asked for permission to post this information and ask for prayer and she agreed.  In our previous conversations, she's always told me how happy her daughter is but now she's not smiling very much and doesn't want to cuddle much.  To those who pray, thank you.

It's time for bed.  Thanks for your prayers and support.

Blessings,

Elizabeth

A sleepy day

This is the baby whose smile I'm missing.  It was taken in mid-July, a couple of weeks before Josiah was admitted in the CCCU.

Today was a little disappointing.  Before I arrived at the hospital this morning Josiah was agitated and desatting.  The nurse eventually sedated him and his sats increased.  However, Josiah also ended up sleeping most of the day.  On the one hand it's nice to see him calm but it's much nicer to see his eyes open and to be able to interact with him. 

On rounds the doctors asked for an abdominal ultrasound and an echocardiogram.  On the weekend Josiah was started on antifungal medication just in case this could be the reason for his fevers.  The abdominal ultrasound today was searching for evidence of any fungal matter.  If none is found, I believe the medication will be stopped.  I haven't heard the results of the ultrasound.  The echocardiogram will happen tomorrow.

The staff physician also wanted Josiah to start on clontidine.  I asked to speak with the fellow before the medication was given.  The fellow explained that some recent studies show this drug decreases the amount of rise in adrenalin when one is agitated.  It also acts as a sedative.  I believe they hope that Josiah will be less agitated on this medication which would mean he wouldn't clamp down which is currently causing the blood to go to his body and not to his lungs and hence the desats.  However, I'm not thrilled about a new sedative.  We'll see how he does on this drug over the next few days.

The staff physician suggested we have a family meeting this week.  He's aiming for Thursday.  I think this means that the staff physician, surgeon, and cardiologist will sit down with me and tell me the plan.  I think they are still planning a catheterization for Josiah but perhaps I'll hear tomorrow about a date.

This is a photo of my wonderful big boy.  We continually thank God for Isaac's flexibility and how he is weathering this storm.  He loves to play and he loves his grandparents and he knows that God loves him.

My highlights today were lunch with a friend and giving Josiah a sponge bath.  

Thank you for your love and prayers!

Blessings,

Elizabeth

Happy Thanksgiving!

It was nice for Graham and I to be together today for Thanksgiving.  We have much to be thankful for. 

We were able to get a little more rest today, which was a blessing.  Unfortunately Graham's back has been sore for most of the day; hopefully a good night's rest will help.

Josiah was similar to yesterday, with his temperatures relatively stable using the cooling blanket.  He was partly awake when we visited in the afternoon and evening.  It is always nice to see his big blue eyes. 

Graham will leave from here early in the morning and go straight to his job in Waterloo.  The traffic has been fine in the past. 

It will be good to find out tomorrow when Josiah's catheterization will be scheduled.  The staff physician, cardiologist and surgeon will discuss his case in the morning, if they haven't already.

Isaac was on a walk with his grandparents in Kitchener when they stumbled across both a wagon and a bike left for the garbage, both in great condition.  My dad spoke with the owners who were happy to part with them.  A Monday afternoon walk may be a new tradition. 

We are thankful for all of God's provisions, large and small.

Blessings,

Elizabeth and Graham

Our Cool Son

Josiah is now on a cooling blanket.  This has kept his temperature and heart rate down today without the need for ice on his body.  He still seems to desat fairly easily but he seems more comfortable.

Isaac was coughing a lot last night in bed so I stayed in the room with him all morning so we wouldn't pass on his germs.  Grandma and Grandpa F. were dropping by today so they took Isaac and dropped him off with Grandma and Grandpa L.  He had a great time playing with Noah's Ark this morning. 

We had a nice visit with our pastor and his wife tonight and they were able to anoint Josiah with oil and pray for him.  Our pastor's aunt sent us an amazing turkey dinner. 

Graham and I are enjoying the opportunity to get a little more rest and will be together for Thanksgiving tomorrow. 

We are so blessed to have such tremendous support.  Thank you for all the love and prayers.

Blessings,

Elizabeth and Graham

A busy day

After leaving RMH this morning, Graham and I went and found a portable DVD player to buy for Josiah.  Graham was completing the purchase when I arrived at Josiah's room.  The staff physician on call (who happens to be the new chief of staff of the CCCU) was at Josiah's bedside.  Josiah had just desatted to the 50s so they made some changes with his ventilator settings and changed some of his medications.  Later in the day he desatted to the 40s a couple of times but he's been behaving well so far for the evening nurse.  The staff physician put him on anti-fungal medication just in case that could be the source of his fevers.  He said he thinks Josiah should have a cardiac catheterization soon so it will be discussed by everyone on Tuesday morning.

It's harder for me to see him in the crib now.  He arches his head back as far as it can go.  The physiotherapist was explaining to me that babies who need more oxygen do this to try to open up the chest and airway as much as possible.  It's the brain's response.  It looks very uncomfortable and certainly isn't the best position for his neck but he just squirms back to it every time he's moved.  Of course, he also has ice on his head and around his body.  He fights during his many suctionings. 

Graham and I went out for lunch and then he waited at RMH for our family while I went to the hospital.  It was a slow day in the room so we were able to have more than two visitors.  My parents, brother and sister-in-law came.  One adult watched the children at RMH and the rest visited with Josiah.  We then had a delicious turkey dinner at RMH that my mom and sister-in-law had prepared.  After that, my nieces opened some gifts as they turn six tomorrow.  We said good-bye and put Isaac to bed on his own single bed.

Graham told me that yesterday he made a pretend dog with his fingers and walked it over to Isaac.  Isaac picked up the dog (Graham's hand) and said, "hug" and gave it a hug.  He is a sweet boy.  

I called the night nurse who said Josiah was sleeping comfortably and had not desatted.  Thankfully we have the same day nurses and night nurse all weekend.  Consistency is great for everyone.

I've been tempted to stop pumping milk but I think I'll aim for six times a day instead of seven.  That should enable me to get a little more sleep.  It would be great to have a long sleep and it would be good to have a big cry.  I may need to watch a sad movie at some point.  I think I'll nap before my final pump tonight.

Thanks for your prayers.  We need them.  We are tired but blessed.  We want God to touch our little boy.  We want him to breath on his own.  We want him to smile.  We do not want him to fear or be in pain.  We want him to know he is safe and he is loved by his family and the God of all wonders. 

Blessings,

Elizabeth         

Screen time

I haven't read much about child development but I do know that screen time is not the recommended activity for five month olds.  However, I noticed that the baby next to Josiah had a DVD player so I asked our amazing physiotherapist about this.  I may be mixing up some of his answer as I asked him a few questions but he asked if I had heard the phrase ICU delirium.  This phrase is used for both adults and babies.  He said that often in ICU there are so many negative stimuli and very few positive stimuli that one's perception of self can change.  Five month olds are developing their sense of self.  He said that I wouldn't want to show DVDs to a baby in a regular environment as it is very passive but in Josiah's case it is a good idea.  It will add to the positive stimuli he is receiving and he'll be able to see the colours and new things and hopefully hear the music, etc.  So, Josiah will soon be enjoying some Baby Einstein.

Today was a similar day to yesterday.  Last night and this morning his temperature was near 40 degrees.  He was agitated last night and this morning and needed more sedation but he hasn't had extra sedation since around 7 AM.  He always had ice on his head today but not on his body.  They stopped the antibiotics this afternoon as his cultures have been negative.  They still don't know why he's having fevers.  The pharmacist was looking into the possibility of a drug induced fever but she said it was unlikely given his medications.  His bowels are working well which is the reason all his sheets needed to be changed twice today.  He must have wanted a second bath. 

Graham just arrived so we're going to head to the hospital now.  This is a treat to be able to go together.  We're going to have a nice Thanksgiving meal with family tomorrow so Isaac with come with his grandparents.  It will be date morning tomorrow. 

I was very excited to get a bean bag today for Josiah.  Friends of ours have a niece who works in the NICU and she stopped by today with a bean bag that looks a little like a frog.  They are out of the bean bag hands which are heavier but one of their OTs is going to keep her eyes open for one.  It was so kind of her to bring it. 

Thank you all for your support and prayers and comments and emails!  I hope you all have a Happy Thanksgiving weekend!

Blessings,

Elizabeth

More ice

Josiah had ice on his head and body for most of the day but his temperature stayed around 38 degrees.  I just spoke with the night nurse and his temperature is currently 39.7 degrees even with drugs and ice and some sedation.  As always, more cultures are being sent and more will be sent tomorrow morning. 

I met with the thrombosis team today.  The ultrasound that was done yesterday did not find anything new.  The clot in Josiah's right groin is the same size.  They are happy it hasn't grown.  He still needs to have the CT venogram on his head but it looks like there is a clot there.  There's no rush on the CT venogram as he is already on anticoagulant medication.

Tomorrow Josiah will have an abdominal ultrasound and another echocardiogram.  It's nice to be present to hold Josiah's hand and try to keep him calm during these scans. 

Apart from his fever Josiah did quite well today until about mid-afternoon when he started to desat.  He needed a lot of suctioning though he is able to cough up his secretions.  He hates being suctioned.  The doctors do not know why he is having fevers. 

I'm wondering if Josiah can hear.  He was on ECMO once and that can cause hearing loss and one of his current antibiotics can also cause hearing loss.  His hearing will be tested before he leaves the hospital.  It's sad to think that he could be lying in bed all day and night in silence, not hearing his mommy's voice or the songs I sing or the prayers I pray.  I wonder if babies get depressed.

My new neighbour here has a young son who has just been diagnosed with a very aggressive form of cancer.  A new dad was celebrating his son's one-week birthday today.  His son has encephalitis.

It was a beautiful day today and I was blessed to be able to spend it with Josiah while knowing that Isaac was having fun with Grandma F.

My bed with the clean warm sheets is calling me.  Good night and thank you for keeping all of us in your prayers.

Blessings,

Elizabeth 

Spiked fever

Please pray that Josiah's fevers would stop and that God would give the doctors wisdom to know why they are happening.  This morning the night nurse told me that his fever went up to 40 degrees last night and they almost put him on muscle relaxant and the cooling blanket but thankfully the fever broke.  They've sent away more cultures again.  Thanks very much!

Blessings,

Elizabeth 

Two of them

My excitement today was discovering that Josiah has two teeth!  His two bottom middle teeth have come in.  He was also 6.56 kg on the scale so he now exceeds his admittance weight - nine weeks later. 

I found out this morning that both of Josiah's lumens on his Picc line would not pull back so he had to be poked twice today in his feet in order to test his blood.  At least they were able to take blood from a vein in his foot as opposed to pricking his heel which would cause more discomfort.  Both of the lines were treated with TPA so they are currently working again.

I requested to speak with the dietitian today.  There have been a few times recently when Josiah's feeds have had to be changed on the weekends when his dietitian is not available so I wanted to have a better idea of what she would like to see happen so that I can do a better job of advocating.  I now have a much better idea of what to expect.

Josiah had fevers on and off today and his abdomen became quite large.  He had ultrasounds but I won't have the results until tomorrow.  His ventilator settings were changed to 60% oxygen, a peep of 10 at a rate 30.  He also had an echocardiogram which showed that his main valve only had mild regurgitation so we praise the Lord for that!  I'll find out the results of the cultures tomorrow.

The oral care has changed on the floor.  As part of the new protocol Josiah now receives a swab with mouth moisturizer that he really seems to enjoy.  He's licking his lips more.  It's nice to see him enjoy something.

He wasn't able to do much physio today and I wasn't able to hold him but tomorrow is a new day.

Please pray that Josiah's ventilator settings would be able to be decreased.  Thanks so much for all your prayers and support!

Blessings,

Elizabeth

Infection?

I obeyed my doctor and stayed off my feet at RMH until 4:00 this afternoon (in between short walks to eat and pump).  When I saw Josiah the nurses said he didn't look very good and he had a fever.  He had new cultures taken and the fellow said they would wait for some results before starting antibiotics as his other numbers were fine.  About an hour later I came back from pumping and the fellow told me that they had decided to start antibiotics as Josiah looked worse and his breathing was more laboured.  His fever was 39.3 so he was given tylenol and ibuprofen and I wiped him down with ice cold water.  I was hoping to hold him today but that would increase his temperature.  

I learned tonight that the CCCU (Cardiac Critical Care Unit) fellows have switched to the PICU (Pediatric Intensive Care Unit) and vice versa so I'll be getting to know a new set of doctors and they'll need to get to know Josiah. 

Josiah's enoxparin level is checked in his blood work once a week on Tuesday mornings.  It is meant to be between 0.5 and 1.0 (I may be wrong about the upper level).  His was 0.49 this morning so the pharmacist was okay with the number but a thrombosis specialist came by and said his enox needs to be increased so it will go up by 10% at his next dose at 6:00 AM tomorrow.

I just called his night nurse and she said his fever is down to 38 degrees and the staff physician had checked in on him and said he looked better.  He's sleeping peacefully with ice on his head. 

When I'm with Josiah I feel fine.  I thought I lost my sweatshirt today and almost started crying.  Obviously emotion isn't far from the surface.  The day nurse thought Josiah was giving her puppy dog eyes today.

Thanks so much for your prayers and support!  McDonalds hosted a great meal tonight and thankfully there were leftovers when I arrived back from the hospital.  Isaac is no longer impressed with his crib in Kitchener as he is getting used to being in a bed on the weekends.  We may need to say good-bye to the crib earlier than we wanted.

Blessings,

Elizabeth

Off my feet

Josiah's had a pretty good day.  His numbers are good, his peep is down to 6, he's getting his target feeds of 75 millilitres every three hours, he didn't have a fever the last time I asked and his Picc line is working.  Last night they weren't able to draw blood from one of the lumens on his Picc line so they treated it and it was working better this evening.

I haven't seen Josiah much today.  I had a scheduled appointment with my rheumatologist this afternoon at another hospital in downtown Toronto.  He was able to drain a lot of fluid out of my left knee and give me a cortisone shot in my knee and elbow.  He said I should stay off my feet for at least 24 hours so I came back to RMH in a taxi and have been lying on the bed between pumping and eating.  Thankfully Josiah's nurses are always happy to speak with me on the phone to tell me how he's doing.  I'm hoping to have a good sleep tonight and some more rest tomorrow.

There was some sort of catered meeting at RMH today so I was pleasantly surprised to find leftover roasted vegetables in the common fridge.  In addition to other delicious veggies, it included purple potatoes and white asparagus which I haven't tried before.  There was leftover salad that looked good but I wasn't brave enough for the blue cheese.

I chatted with a mother tonight from another province whose one daughter is at a local hospital here with cancer, she's looking after another daughter who's staying with her at RMH and just happens to be deathly allergic to peanut butter and she has a son back in her province receiving home care as he has special needs.  She's been here longer than we have and her husband is missing her.  Everyone has a story.

It's time to pump and have a great sleep.  I said goodbye to Graham and Isaac this morning.  It was a bit of a harder day not being able to spend much time with Josiah.  We are so thankful for the amazing care Josiah is receiving but we also know that it makes a difference to have a parent nearby who can advocate when necessary and notice changes in his condition, let alone trying to play with him when he's awake and keep him stimulated.

Thank you for your prayers and support.

Blessings,

Elizabeth