Good News

Today Isaac had a thorough examination by our ENT at Children's Hospital, Dr. Kozak. He declared that Isaac looked and sounded so good that he didn't even need to do a scope! Hooray! He said that even if he did find scar tissue, it's obviously not impairing his airway very much so he wouldn't need to do surgery. He figured it wasn't worth putting Isaac through the trauma of the scope, which I agreed with! Dr. Kozak has given us the "all clear", and we don't need to return unless Isaac gets sick again. We have instructions to watch him carefully, and to get him straight to his pediatrician if he even gets just a regular cold. If he shows the slightest signs of difficulty in breathing, then it's straight to Emergency.

Now we face the continued battle of keeping Isaac healthy. It's hard to not be overly protective of him, and yet we know we have the right to be a little paraniod :). We have kept Isaac fairly isolated during this past month, but we did reintroduce him to the church nursery last Sunday. He also returned to daycare this past week, and I am returning to my classroom next week (both of which expose him to a lot more germs). So, we will continue to be vigilant with hand washing and sanitizing, and we will continue to pray for Isaac's protection.

And now, a final word:

...for praying for our son! Thank you for all of your support - for your phone calls, visits, meals, Starbucks cards :), gifts and words of encouragement. We have been very blessed!

This Boy....

This boy.... ....is doing great! He's running, playing, talking, sleeping through most nights, and learning new signs faster than we can keep up with! To look at him now, you would never know he was so sick just a month ago. Tomorrow we are taking Isaac to Children's Hospital to have another scope done. They will be looking to see if he has developed any scar tissue, which would require surgery. We are praying that we will be given the "all clear", and that we won't have to walk into that building again any time soon!

This boy... ...even managed to stay healthy while Kaitlin and Russell had colds. They both wore face masks around the house for about 10 days.

This boy... ...still loves to "read" any book he comes across :).

This boy... ...is learning how to feed himself with a spoon. Many messes abound!

This boy... ...still calls Grandma "Mommy" (we're working on that one!), but insists on calling Grandpa "Papa", despite Grandpa's many attempts to teach him otherwise!
Grandpa: "No, not Papa -that sounds too old! It's Grandpa!"
Isaac: "Papa?"
Grandpa: "No... G-r-a-n-d-p-a!"
Isaac: "Papa?"

This boy....
...was Superman for Halloween...of course! Russell actually bought this cape from the thrift store at Children's Hospital when Isaac was in the ICU there.

This boy...
....had a great time at the Apple Barn on Halloween afternoon. He tried valiantly to pick up every pumpkin we came across, calling them all "balls" :).

This boy... ...loves his sister! He has taken to calling her "Kay-tee", complete with the sign for "sister". Very cute!

This boy...
...will be sorely missed by his Mommy when she returns to work next week.

This boy...
... is the light of our lives! Isaac means "laughter", and never has a name been more fitting. He brings a smile to people's faces wherever he goes! We will never stop thanking God for healing our boy, and for allowing us the privilege of being his parents.

Adjustments

It is so good to be home. And even better to be in our new home! When we walked in the door late Tuesday evening, I was thrilled to see how much my parents and friends had unpacked for us. There are still some boxes remaining, but all the important stuff is where it should be. We are so grateful for all their hard work... it made for a much more pleasant homecoming!

Isaac is doing very well, all things considered! He is still breathing well (although we have noticed a runny nose and nasal congestion today, which makes us nervous), and has more and more energy each day. He has started trying to walk, which is quite funny to watch! He's a little unsteady, and sort of hunched over... kind of like a drunken old man! We're just thrilled that he's already trying to use his legs. He is happy and giggly most of the time, and has been saying all kinds of new words. We are so relieved that there doesn't seem to be any neurological effects yet of all the drugs he was given. However, he is definitely struggling at night. He wakes up crying and moaning almost every 1/2 hour....making for exhaustion all around! We think that it's still the "morphine nightmares" that we were told about, and him getting used to not being woken up regularly by nurses. He goes back to sleep after some singing or cuddling from us, and then we repeat the whole process 1/2 an hour later. He is also in his own room for the first time, so I'm sure that's part of his adjustment as well.

Russell will be going back to work on Monday, but I still have a few weeks on leave. Isaac isn't ready to go back to daycare, and we're keeping him away from large groups of people and kids for a while yet. It's hard to find the line between being over-protective and keeping him safe.

And now... here's something to give you a good chuckle :).

"All Done!"

That's right, (borrowing from Isaac's favorite phrase) we're "all done"! After 25 days in the hospital, we are actually being discharged this afternoon! Isaac receives his last dose of morphine at noon, then they just want to make sure he doesn't react negatively at 4:00, when he would normally receive another dose. If he's OK (which they think he will be), then we get to go home! Well, "home" is a relative term at this point :). Many of you know that we moved the day after Isaac and I came into the hospital, and neither of us have actually been to our new house yet. It feels strange to say I'm going home, but it's not to the place that I associate with "home"! My mom, dad and friends have been working long hours the past few days to unpack our boxes for us and make our new house feel organized. Russell had also been working hard at unpacking on his own (while working full-time) a few weeks ago while we were in the Abbotsford hospital, but I'm so glad he hasn't had to worry about that while we've been here at Children's. I am so grateful to amazing friends and family who have dropped everything to help us, and have prayed fervently on Isaac's behalf. There's still a lot of healing and adjustment to come, so I will continue to update you on how our Superboy is doing.

Wow

Isaac and his "Doggy"... these two are never far apart!

Tube free and reading books... what a beautiful and familiar sight :)

Yesterday morning, one of the residents of Dr. Kozak (the ENT who did Isaac's bronchoscopies, intubation and extubation) came to check on Isaac. He was very happy with how Isaac's breathing is sounding, and told me something that I think I had missed earlier. He said "When we went in and did the second bronchoscopy last Tuesday, we couldn't believe our eyes at what we saw. We stood in stunned amazement at how much healing had taken place in just a week. The granulars (beginning scar tissue) were gone, bleeding was gone, and hardly any swelling remained. We all had seen what bad shape Isaac was in when we intubated him, and we were shocked at how much healing happened so quickly. I've never seen anything like it. You have a very lucky boy." I responded with "Well.. that's because this boy has hundreds of people from here to India praying for him!" He said, "Yep - I guess that would do it!" Wow.

Last night, Isaac began his oral feeds (drinking Pediasure from a bottle, instead of through his feeding tube), and it's going very well. Today we will start to gradually introduce solids. This morning, the doctor took out his feeding tube and his IV. It's so nice to give our boy a hug without him hooked up to any machine, and with no cords or tubes in the way!

This morning, we also got some big news. We may be going home tomorrow! Wow. Not sure if we're ready for that yet! Isaac is doing very well overall - he is sitting up for longer periods of time on his own, he is talking and signing, laughing lots, drinking well, and his bowel issues have almost been resolved. The remaining issue is that he is still weaning off of morphine. The doctors are reluctant to send us home while Isaac is still on morphine (and we agree). Since he is doing well, they are planning to speed up the weaning process and give him his last dose tomorrow afternoon. If he responds well, they will then send us home! They will be watching him carefully between now and then, as he did not react well when they tried to lower his doses too quickly last week. It's not that he actually still needs morphine, it's that after being on such high doses for even just a week, he has already developed a dependence on it and has to be taken off slowly.

So.... wow. Lots to be thankful and grateful for!

What a Beautiful Sound...

My Mom and Dad came this afternoon for their daily visit, so Russell and I went out for a few hours together. It was nice to be out of the hospital, but also felt very strange. As of today, I've been living in a hospital for 3 weeks. I almost forget that the rest of life has gone on as usual outside of these walls.

Isaac had a long nap this afternoon, and then seemed quite chipper once he woke up. He was sitting on Grandma's lap for a while, and suddenly a big flock of birds flew by the window. Wow, did he get excited! He loves birds, and can hear a bird call from miles away. He started saying "Bird! Bird!" over and over, and signing it too! We were pretty thrilled! Then, he and Grandpa got into a game together, and this is what we heard....

Baby Steps

I'm having to remind myself that progress with Isaac will come in baby steps. After the big leap in communication he took on Thursday (smiling, talking and signing), I think we all expected an equally big leap yesterday. However, Isaac has been very quiet - not signing and only speaking once or twice. He is still responsive to us though, and smiles a lot with his new, post-sedation, quirky grin. It's quite cute, but very different than the smile he used to have!

Isaac is still not able to sit up on his own, but is doing much better at holding his head up, and moves his arms around quite a lot. There are less and less tremors, and he didn't roll his eyes back in his head once yesterday (thank goodness... that was pretty creepy!). He hasn't needed oxygen in over 24 hours, and has also moved on to bolus feeding. He still gets fed through a nasalgastric tube, but instead of there being a continuous flow of food into his stomach, they have started doing a larger amount over a short period of time, every three hours. This is to get his stomach ready for regular meal times. This morning he received his last weaning dose of Ativan, and morphine will be finished sometime tomorrow. It will be interesting to see how he changes once those drugs are finally out of his system!

Yesterday a physiotherapist came to visit, and gave us some bubbles to use as therapy. The goal is to get him reaching for the bubbles... I think he did quite well!

I love how he seems to be imitating Russell!

We got in some good cuddle time too... also officially part of his therapy :).

What a Difference Two Days Can Make...

Tuesday Morning

Thursday Morning

Proof in living color that our God answers prayer!

Smiles and First Words

It felt like we were in a time warp back to baby days, as today we were rejoicing over some first real smiles from Isaac, and some first words! We had been talking about what word he would say first once he woke up - we were figuring something meaningful like "Mama", "Daddy", or "All Done!". Imagine our surprise when this afternoon, he suddenly said "spoon"! Yep. Spoon. He was watching a show on Treehouse, and the little cartoon character was using a spoon to bang on a drum, and Isaac recognized it. The nurse was there taking his vitals when it happened, and we were all quite excited! This means good things neurologically - he recognized the item, knew the word for it, and was able to articulate it. He gave me a big grin afterwards, as if he knew what an accomplishment this was! We put on Isaac's favorite DVD after that (Baby Signing Time), and he then proceeded to say "bird" and "baby", and sign "more", "milk" and "baby" along with the video. Exciting stuff!

Isaac's temperature was lower today, which is good news. They are still watching his distended abdomen carefully, and he may have an ultrasound tomorrow to check for an obstruction in the bowel. The doctors are fairly certain that his tremors and eyes-rolling-back-in-his-head are related to withdrawal symptoms. They have increased the amounts of morphine and Ativan he is on, and are weaning him more slowly from those drugs. That seems to have helped today. We are still a few days from starting oral feeding, but we did get rid of the oxygen tube today, and the probes on his chest. It's nice to not have him hooked up to so many things!

Overall, an encouraging day! Check back later tonight for some new pictures!

We've Moved...

...out of the ICU! At about 2 am (thankfully Russell was staying overnight with Isaac), we were moved up into the regular ward. We have a fairly spacious, private room (one of the benefits of being in isolation) that has a window! There are no windows in ICU, so it's thrilling to see daylight streaming in our room now.

Isaac is still being weaned from his sedation meds, so he is awake, but not really "there". I'm finding it hard to watch - his eyes are open, but he's not really seeing us, and he's not responding to our attempts to talk to him. He's twitching and shaking a lot (reminds me of someone with Parkinson's), and makes strange noises every once in a while. He only moves his left arm, and not really deliberately. He's quite weak, as well - not even able to hold his head up. It's a lot like having a 24 pound newborn! I know it will take time, but I miss my smiling, chattering, active little boy.

So far, Isaac's breathing sounds good, so we are so thankful for that! One of the concerns the doctor had this morning is that he doesn't seem to respond to pain stimuli. They aren't certain if it's because he's still partially sedated, or if something is going on neurologically. He is also still battling a fever, so they are doing more cultures to see if there is an infection somewhere. His bowels are also still backed up and his stomach is very swollen. This can cause a host of other problems if it isn't remedied soon. I can hardly believe I'm actually asking people to pray that my son will be able to have a bowel movement... but that's where we're at right now! :)

Since we arrived at Children's Hospital last Wednesday, Russell and I have been staying at the Easter Seals house. It is just 2 blocks away, and only costs $36 a night. It's old and dirty, but we're just thankful to have somewhere affordable to stay! Now that Isaac is in the regular ward, one of us will be staying in his room each night, and one will be getting a better sleep at Easter Seals :).

Oh... I nearly forgot to mention....we got to actually hold our boy yesterday! My mom, Russell and I all took turns, and it was so nice to feel Isaac in our arms again. I know some of you were praying for that specifically, so thank you! We have been so blessed by the prayers, meals and visitors we have received. Right now, some of our friends are helping us out in another very practical way - they're at our house unpacking boxes for us! We are very grateful for the love being showered on us by family and friends.

Big Change Today!

Wow - how things can change in a few hours! Last night at about 11:00, we discovered that there was a significant leak around Isaac's breathing tube. That means that there is now space between his airway and the tube, indicating that swelling has gone down. We were told that the ENT was going to look at him in the morning, and then decide on a new plan of action.

By this morning, the leak had increased, and the ENT decided to do another bronchoscopy to take a look. He found that there was a LOT less swelling than he saw last week! He attempted to extubate Isaac (remove the breathing tube) and it was successful! As I type, Isaac is laying in his bed, breathing on his own :). What an answer to prayer! It is too early to know yet whether scar tissue will be an issue - this is something the ENT will keep watching. Right now, the doctors are trying to wean Isaac off of the heavy doses of sedation meds. He is moving around a bit, but not actually awake. He also has a lot of secretions built up in his lungs from being on the ventilator for 6 days. He has been developing a fever, so there is concern that an infection is growing somewhere. The goal for today is to help him get rid of the secretions (suction, forcing him to cough, chest physiotherapy, etc.) and keep an eye on his fever. I am just looking forward to the moment when my little boy can smile again. We're a long way from that yet, but it's wonderful to see him without the big tube coming out of his mouth! This also means that he doesn't have to have a tracheostomy, which is another answer to prayer.

We are blown away by the huge numbers of people all over the world who are praying for Isaac. There are even pastors in India (friends of my dad's) who were fasting and praying for our son for two days. Wow. We are holding fast to the promise that God is not finished with our Isaac yet, and that He has wonderful plans for him.

Background Story

On Friday, September 25th, Isaac started to show signs of labored breathing. He had been developing a cold all week, but we weren't too concerned. We knew it was likely croup, and figured it was just his turn with this common childhood illness. By Saturday noon, we were getting a bit more worried, and decided to take Isaac to a walk-in clinic "just to be safe". The doctor there immediately gave Isaac an epinephran mask to open up his airway, and sent us straight to the hospital. In the ER, they gave Isaac the typical dose of prednisone (a steroid to reduce the inflamation in his airway), and several more masks. We were actually told to go home - they was sure Isaac would be fine. We weren't so confident, so we stayed put. Isaac didn't show much improvement, so they ended up admitting him overnight. Little did we know at that time where this all would end up! Over the next several days, Isaac just did not respond to the increased amount of steroids he was given. The doctors wondered if something other than croup was going on, so they did x-rays, and tested him for every type of virus and bacterial infection they could think of, but nothing came back positive.

By Wednesday, September 30th, Isaac had gotten significantly worse. He and I were taken by helicoptor that afternoon to Children's Hospital. The ENT (ear, nose, throat specialist) at Children's did a laryngoscopy - put a camera down his throat, only to his vocal chords. He didn't see anything unusual, and confirmed the diagnosis of croup. At the time, he didn't feel it was worth the risk to put the camera down past Isaac's vocal chords. We stayed in the ICU at Children's for 3 days.

On Friday, October 2nd, we were taken back to Abbotsford Regional Hospital by transfer ambulance, as Children's didn't feel there was anything more they could do for him. Over the next several days, Isaac showed no improvement, and actually began to need the epinephran mask more and more often to allow him to breathe. Our pediatrican there consulted with the ENT at Children's that Isaac had seen, and he decided he wanted him to come back so he could take a more extensive look at him.

On Wednesday, October 7th, Isaac and I came back to Children's by transfer ambulance. We waited in emergency for 7 hours, until the OR was finally free. Isaac was having great difficulty breathing - it took every effort he had just to get a breath in, despite regular epinephran masks. Finally, at 5:30, the ENT was able to do a bronchoscopy on Isaac. He put a rigid instrument with a camera all the way down his airway, past the vocal chords. When the ENT finally came out of the OR to talk to us, he didn't have good news. He had discovered that only 10% of Isaac's airway was open. His trachea was extremely swollen and bleeding. The ENT said this was the worst case of croup he had ever seen. He said he had to intubate him right away (put a breathing tube down his throat), or his airway would have closed within a few hours, and we likely would have lost him. We were shocked and scared - no parent wants to hear news like that.

So, since that night, Isaac has been hooked up to a ventilator in the ICU at Children's. He has to stay sedated so that he can't pull the tube out. He has been quite resistant to the sedation drugs, so he is on very high doses, and also has to be paralyzed every few hours to keep him still. Our boy is a fighter! We are now waiting to see if Isaac's airway will heal on it's own. If it doesn't, then the ENT will take out the tube and give Isaac a tracheostomy to breathe through instead. That would allow Isaac's airway to heal with nothing in it. We are hoping it doesn't come to that, but are willing to do anything to keep our little boy alive. We have felt very confident in all the doctors that are treating Isaac, and we have received superb care from the nurses.