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!