Laundry Time!

I went to the hospital this morning, planning to stay all day.   I went and saw Josiah who was sleeping and then I went to pump milk.  I managed to get milk all over my pants so now I'm back at RMH and my clothes are in the washing machine.  We are able to do laundry for free here - what a blessing!  Right after pumping, I was able to hear the doctors rounds.  Twice a day (Monday to Friday), the doctor, fellows, residents, and perhaps others walk around and discuss each patient.  It sounded like there may have been growth of something in the culture of his urine but I'll get the details on that later.  This morning they are taking another sample of fluid from his lungs as something happened to the sample taken yesterday.  They are going to start feeding him now so the nurse will meet with the dietitian but he'll be able to have the milk I've pumped.

The nurse said that Josiah slept last night and did not need to be sedated.  He is still on a low dose of morphine mainly due to the discomfort of the tubes down his nose and throat but the amount will be further reduced today.  He has been waking up and looking around without getting agitated and his oxygen saturation levels have remained stable.  The only times they are going down is when he is being suctioned but that's to be expected.  She did say that he is tolerating the suctioning better and she was able to get him to cough up some fluid himself.

I was reading Psalm 33 this morning (while I should have been making sure my pump wasn't overflowing!) and I was struck by verse 15 which says, "He fashions their hearts individually" (NKJV).  God knows what's happening in Josiah's heart.  Verses 20-22 say, "Our soul waits for the Lord; He is our help and our shield.  For our heart shall rejoice in Him, because we have trusted in His holy name.  Let Your mercy, O Lord, be upon us, just as we hope in You."       

Isaac was happy to see his Daddy this morning.  We were able to do Facetime so I was able to see him too!  Isaac gave me a kiss on the screen and also had his teddy kiss me.  He was enjoying sending cars down the ramp his Grandpa set up from the couch to the floor.  He hasn't been eating very well so please pray that his appetite improves.  Have a great day!  It's a beautiful sunny day in Toronto.  Thanks so much for your prayers!

Blessings,

Elizabeth

Josiah News

Hi Everyone,

Graham just left to drive back to Kitchener after saying goodnight to Josiah and dropping me off at Ronald McDonald House (RMH).  He worked remotely today from RMH and I mainly watched Josiah and pumped milk every three hours or so.  The view from our room at RMH is great at night.  The moon looks beautiful - almost full - and I can see the elevators going up and down the CN Tower.

We spoke with the doctor today.  At this point it's not looking like Josiah has an infection, though it is still possible.  If all of the tests come back negative for an infection, then it's assumed that the problem is with the heart, even though the echocardiogram didn't show differences.  The way he explained it is that Josiah has in a sense always had two obstructions:  1) The blood in the pulmonary veins goes from the lungs, down beneath the diaphragm and through the liver before going back to the heart so this in itself has been an obstruction since before birth, and 2) the pulmonary stenosis (narrowing of the pulmonary artery that goes from the heart to the lungs) has also been an obstruction.  Until now, these obstructions have balanced each other but it may be that he has become unbalanced and thus may be experiencing some heart failure.

Josiah was quite restless this morning; whenever the sedatives started to wear off he would thrash about.  They experimented with amounts and different sedatives and then he calmed down.  When he wasn't calm, his oxygen saturation would decrease and his heart rate would increase.  The night nurse just told us that they are giving him a little more support with his breathing and he seems more comfortable and he's sleeping on his own without a sedative.  They are keeping the lungs open a little so that he doesn't have to work as hard at breathing (he's still getting oxygen from a ventilator).  She explained that it's like blowing up a balloon - it's easier to blow it up when there's already some air in the balloon.  Josiah has fluid in his lungs so she thinks they may start him on a diuretic tomorrow.  They suctioned him a few times today.  The nurse will just let him sleep tonight and only give him a sedative if necessary.  It sounds like they'll start weaning him off the sedatives and the breathing support once the fluid is under control and see if he's able to breath on his own, etc.  They haven't started feeding him yet - they've just kept him hydrated.  If they don't start feeding him tomorrow then the dietitian will give him something that has all the vitamins and minerals he needs through the IV.  Some of his blood work this afternoon came back with better numbers so that's encouraging.
       
The doctor said that a team of doctors will discuss next steps in a meeting next Tuesday.  I think he was referring to next surgical options.  It sounds like we might still be here then.  Apart from missing Isaac, I wouldn't say it's too stressful right now.  I know Josiah is in good hands so that's a relief and I've been able to get some rest.  I also know Isaac is in great hands with his grandparents.  He wanted to look at a photo of Daddy and Mommy today and he wanted to take his stuffed animals with him to his grandparents.  I'm sure he'll be happy to see his Daddy in the morning and then tomorrow night after work.  Graham will bring him to Toronto on Friday night and then we'll be together for the long weekend, taking turns with Josiah and Isaac as Isaac will not be allowed in the CCCU.  I'm looking forward to giving him hugs and kisses and hoping he'll sleep at night.

I will try to write regular updates but oftentimes today I couldn't get on a computer or the Internet connection wasn't working.  It's always great to get emails from people just letting us know that you're praying for us.  It's encouraging to read.  Please understand if you do not receive a response.  Have a great night!  I'll pump once more and then head to bed.

Blessings,

Elizabeth (and Graham)

SickKids Update

Hi Everyone,

We just spoke with the doctor on call.  She looked at the results of Josiah's echocardiogram and it doesn't seem like there have been any changes to the heart.  We're taking this as good news.  It's great to know that his pulmonary veins haven't become obstructed. 

He is now off the muscle relaxant but he is still getting morphine.  They are just letting him wake up by himself.  They took a culture from his blood today so that will take 48 hours to get the results.  So we assume we'll be here for at least a couple of days.   

We were once again able to get into Ronald McDonald House right away.  We are looking forward to having a restful night's sleep.  We found some tasty leftovers in their common fridge for dinner.  We can't say enough great things about Ronald McDonald House!  

Thank you everyone for your prayers!  God is good!  We'll let you know as we hear more news.

Blessings,

Elizabeth and Graham

Please Pray

Hi Everyone,

I'm writing this from the waiting room of the Cardiac Critical Care Unit (CCCU) at SickKids Hospital.  This morning Josiah awoke around 6:30 and wouldn't feed and wouldn't stop crying.  We took him to Grand River Hospital in Kitchener where he was intubated.  The SickKids transfer team came and took him (and Elizabeth) back to SickKids by ambulance.  He has been sedated since we left Kitchener.  They were just changing his tube so they asked me to wait in the waiting room.  He may have developed a cold but we don't know more than that at this point.  We'll keep you updated.  Thanks so much for your prayers!

Blessings,

Elizabeth and Graham

The last two weeks

I'm not sure where the last two weeks have gone but it's time to let you know what's been happening.  On the 15th, Josiah was dedicated to the Lord at Waterloo Pentecostal Assembly.  It was so wonderful to have all of our family present.  That weekend Josiah met for the first time his other aunt and uncle from British Columbia as well as his aunt, uncle, and four cousins from Stittsville.  After the church service we gathered at my brother and sister-in-law's home for the rest of the afternoon.  Following lunch, we read some blessings over Josiah in the presence of our family.  We send a huge thank-you to my brother and sister-in-law for inviting us to use their home for this and for being such amazing hosts. 

Faulkner family on Josiah's dedication day, July 15, 2012

This past Tuesday we left at 5:15 AM to go to SickKids for what we thought would be a sedate echocardiogram for Josiah.  I stopped feeding Josiah around 3:30 AM because he was going to be sedated.  He was doing quite well until shortly before the test was to begin and then he was crying because he was hungry.  This meant that when his oxygen saturation level was checked, it was quite low.  Anyway, to make a long story short, Josiah wasn't sedated and I was told to feed him.  He was happy to be fed but he certainly wasn't about to let someone probe his chest without crying.  They were only able to get a few pictures and those pictures weren't very helpful.  They tried a long time.  It was quite a frustrating morning.  However, the cardiologist was optimistic that Josiah will make it past four months before he needs to have surgery.  The ideal age is six months.  He also said that he'd looked at images from Josiah's previous echocardiograms and he thinks there is only moderate leakage in Josiah's main valve, as opposed to severe leakage, so that's great news!

The next steps are for Josiah to have a cardiac catheterization in August (date not finalized) at SickKids.  There will be appointments the day before the catheterization but after the procedure we will either be released or stay one night.  He will have a general anaesthetic for this procedure in which a catheter will be put into a vein near his groin and then it will go up to his heart.  The information they learn will help with the future surgery.   

Yesterday we said goodbye to Graham's brother and sister-in-law and their wonderful children as they flew back to B.C.  We're missing them already and Isaac has been talking about them.  He had a lot of fun with his cousins.

Prayer Requests

• That Josiah would continue to do well and that his surgery would occur at the ideal time
• That the cardiac catheterization would go well (we'll let you know when we find out the date)
• That Josiah's reflux would improve.  The medication seems to be helping but he's been quite fussy of late.

Thanks for your prayers!

Blessings,

Elizabeth and Graham

Three Months and Counting!

Josiah turned 3 months old yesterday and he's doing great!  We're thanking Jesus for great reports this week.  On Tuesday he had an ultrasound of his kidneys at SickKids.  He screamed for the entire procedure which took about 15 minutes (it seemed a lot longer).  The ultrasound he had when he was a newborn showed that his kidneys are slightly different than normal (his difference is quite common).  Fortunately his kidneys are working well.  We met another wonderful doctor who said that Josiah doesn't "match his paperwork" as he was expecting a small baby.  Our big baby weighed 6 kg (13.2 pounds) on Thursday at his appointment with our fantastic nurse practitioner and cardiologist at McMaster.  They were both very happy with Josiah.

Josiah is feeding much better (as long as we get the antacid into him on time).  He fed quite poorly two weeks ago but this past week he has done very well.  He was in fine form to meet his aunts, uncles, and cousins from British Columbia.  He's also been sleeping well.  He's discovered the joy of sucking his fingers and hitting the chimes on his car seat.  He even enjoyed his first ride on a hammock yesterday while his big brother Isaac was pleased to be introduced to his first freezie.

Josiah's next appointment is on July 24th at SickKids when he'll have his first sedate echocardiogram.  After this appointment, the cardiologist will start presenting his case to the surgeons.

Prayer Requests:

• That Josiah would continue to feed well and be less fussy
• That Josiah would be able to wait until he is at least four months old before surgery (and hopefully longer)
• That Josiah's dedication would go well tomorrow (i.e. not spitting up on the Pastor!)

Thanks so much for your prayers!

Blessings,

Elizabeth and Graham            

Weekend Adventures

We arrived at McMaster's Emergency Department at 9:30 on Friday night.  Josiah had refused to eat for almost eight hours and only one of his feeds was a good length.  We assumed the problem was his reflux and we were correct.  Thankfully his amazing cardiologist was on-call and at the hospital.  The doctor changed his medications and we saw immediate improvement.  We were taken to the ward around 1:30 AM and were discharged mid-afternoon.  Josiah fed so well on Saturday - he had normal length feeds and didn't cry once.  It was so encouraging to watch him eat without pain and to have a content baby.  We thought the feeding problems had been solved!

Starting on Sunday he began crying again during feeds and since then his feeds have been shorter (usually around 5-7 minutes) but more often.  He's on two medications - one to reduce the acid in his stomach and the other to increase the speed at which the contents of his stomach move to his small intestine.  We give him medicine from a syringe 8 times a day.  Today he was quite fussy.  The reflux is clearly still causing him pain.  At least Isaac didn't have to endure all of the crying today.  He was visiting with his aunt, uncle, and cousins and is currently having his first sleep-over there.  We are so blessed that Isaac just seems to go with the flow.  He often waves and blows kisses to "baby".  This is certainly an answer to prayer. 

Prayer Requests:

• That Josiah would be able to eat without pain and eat enough so that he will continue to grow and not lose weight 
• That Josiah would not need surgery until at least 4 months of age

It's time for bed.  We appreciate your prayers!

Blessings,

Elizabeth and Graham