Tuesday Morning
Thursday Morning
Proof in living color that our God answers prayer!Thursday, October 15, 2009
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!
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!
Wednesday, October 14, 2009
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.
Tuesday, October 13, 2009
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.
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.
Monday, October 12, 2009
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.
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.
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