Talked to Chloe this afternoon and she reported the following story:
Chloe had finally fallen asleep around midnight thirty this morning (Thursday) and was in a much needed deep sleep, so deep in fact that when a nurse woke her up around one thirty, she yelped and it took her a while to realize it wasn’t part of her dream. They told her Owen was fine, but they asked her to come into his room. They explained that the monitor on his breathing machine had gone off and they went in there to see what was wrong. The machine was working correctly, but Owen was lying there still strapped down, with the tube out of his mouth, smiling at them, quite proud of his accomplishment. He seemed to be doing fine, so they left it out all day, with no issue. His blood O2 levels were pretty stable all day. He’s still hooked up to fluids in case the tube has to go back in, and hasn’t been able to have any real food again until they’re sure he won’t aspirate it into his lungs, but he’s still happy even with a totally empty stomach.
This evening (20 hours after the self-extubation), they fed him a small batch of formula and breast milk (through the feeding tube) to see if he’d burp it back up, and if all goes well after a couple hours, Chloe gets the green light to try breast feeding again.
The nurses said that since he’s coming off all the meds, his body is a bit out of whack (duh). Not a whole lot of sleep (for Owen or Chloe), but he’s staying happy, flirting with the nurses, and being his adorable self. Because of what happened last time (the scar reopening) they’re trying to be cautious, but if all goes well, tomorrow might be the day to move out of ICU to a normal hospital room, probably for another 24 hours before coming home. So if all goes to plan, they could be home this weekend. Woo hoo!
Hopefully Chloe will regain control of her site soon so you won’t all have to deal with my endless updates anymore. ;) (Although Barney helped type this one, can you tell? Be glad I replaced some of his more colorful phrases with my own.) Keep your good thoughts and prayers headed their way!
So day 10 arrived with much hope for progress (ie. extubating Owen), however that will not be happening today. The doctor finally arrived in Owen’s room about 10 minutes ago (4 HOURS later than he has been here every other day so far!) - you can imagine what my nerves and imagination have been doing to me for those four hours this morning. Not pretty. There are SO many variables that play into whether or not Owen is ready to be extubated that I couldn’t possibly begin to describe them here. Suffice it to say that everyone (nurse, respiratory therapist, intensivist, and doctor) are all simply making their best guess at how and when to proceed. You gotta love people playing a giant high-stakes guessing game with your son’s life - oh, it’s just so much fun I could puke. As you can probably sense, my optimism and strong, steadfast attitude are wearing very thin. I still fully believe that Owen is going to be fine… it’s just the drive down this bumpy road that’s killing me. He’s definitely not in the clear yet. Many thanks to all of you for your comments through the blog, by email and with your phone calls and visits. There shouldn’t be anything new to report until tomorrow AM when hopefully, finally Owen will be extubated again. Successfully. Healing thoughts and prayers please… until tomorrow…
Oy vey. This is a nightmare I just can’t seem to wake from… so here we are, nine days into this ordeal. Nothing significant to report this morning. The plan for the day is the same as the past two… hurry up and wait, keep Owen as comfortable as possible, and hope that everything is healing well. As happens in this situation (after this many days), Owen has built up quite a tolerance to the drugs that are supposed to keep him in “la la land” and the nurses are having to get creative to keep him comfortable and sleeping when necessary. I have visions of his little liver quickly becoming a shriveled black raisin. They’ve been allowing Owen to “surface” a bit more often and for longer durations in the past couple days, since he’s actually been in fairly good spirits and interested in playing and grabbing at everything when he’s awake. But it doesn’t make it any easier to deal with (even though it’s so nice to see “him” and all of his little quirks when he’s awake), since I can just see the confusion and exasperation in his little eyes. Poor thing doesn’t have a clue what’s going on or what he’s done to deserve this?!?! The doc paid a visit this morning, as he has done every morning so far, and determined that today is NOT the day to extubate him (remove the tube) - as before, they would like to see a significant leak develop around the breathing tube, indicating that there isn’t much swelling. I am certainly in no hurry to extubate either, since patience seems to be the “better safe than sorry” approach right now. Plus, I’m really getting to like the staff and the gourmet food at this tropical resort. ;-) So things are status quo for today. They will be looking to do the extubation either tomorrow or Thursday at the latest… it’s all up to the doc during his morning rounds. All things considered, we’re both hanging in there. I totally feel like I’m existing in an alternate reality right now. Everything is a blur (probably a result of severe sleep deprivation!) and I can’t believe it’s already been almost a week and a half. I’ll try to post in the morning once a decision has been made about whether or not to extubate. Many continued thanks to all of you for your well wishes, prayers, healing vibes, visits and phonecalls. All of your support is a welcome comfort and I appreciate it more than you will ever know. So, until tomorrow…
Heather here. Where to start…
Barney and the kiddos and I went for what we thought was going to be a short visit to the hospital on the way to OMSI today. We never quite made it to OMSI.
Everything seemed great when I got there. Owen had been off the breathing tubes all morning and while still drugged up and “drunk”, he was at least looking around and grabbing at things an such. Boy was that great to see! Chloe left to get a coffee and visit with Barney and the kiddos who were waiting outside ICU, while I stayed to keep an eye on Owen. He was doing really well for a while, and then he started struggling a little more for breath and his blood oxygen levels dropped. Chloe came back right about that time, and they brought the specialists in to give him a nebulizer treatment and try to break up some of the gunk blocking his airway. He coughed up a huge amount of stuff, which was exactly what they were hoping for. He looked much more comfortable, but then started really straining to try to have a bowel movement, which he hasn’t done yet! Yikes! Chloe has been pumping and they’ve been mixing it with formula to give to him, so things have been going in, but nothing coming out as of yet. Well, it looked like he was finally trying to get some movement down there, straining for a good minute or two, when Chloe noticed something strange was going on around his neck area. He was swelling up like a little balloon, so she called the nurses and docs in, and they quickly swung into action. They knocked him back out and ended up having to reinsert the breathing/feeding tubes. They called the surgeon back to the hospital (poor guy, he thought they were completely in the clear) and he came and took a look at Owen. Basically, they said that (possibly from the straining), Owen had reopened the scar that had been healing so well the past few days, and air was leaking into his tissues around his neck.
So, long story short, they’re going to be there for an extended stay. Not what we had hoped for by any means, but hopefully he’ll heal even better this time, and the suppositories will kick in, and the next time they take him off of the tubes, he won’t have any troubles. Chloe’s doing ok, but as you can imagine, she’s pretty drained, especially when she thought they were in the home stretch. And Ayden is hanging in there, but getting a little sensitive about Mommy being gone. Luckily he has been able to visit the hospital quite a bit, and he, Patrick, and Grandma Kelly were on their way in as I headed out this evening. Please keep Owen in your thoughts for quick and thorough healing, and the family for patience and some peace of mind during this extended ordeal. As usual, I’ll keep y’all posted!
This is Heather again. I went to visit Chloe and Owen at the hospital today. Have you ever been in the NICU of a Children’s Hospital? If you haven’t, you should, just so that you don’t take anything for granted, especially if you have healthy kids at home. Thank God Owen is in there healing from a successful surgery that will ultimately cure him of that which ailed him. Many of those babies, kids, and parents won’t be so lucky. Quite an eye opener, let me tell you.
Quick update on Owen’s condition…
Apparently the nurses rolled him onto his left side to adjust something this morning, and his blood oxygen levels got a little too low for their comfort, so they upped his oxygen and suctioned his lungs and nose. This seemed to help. He was also running a little fever for a while, but they got it back down with some drugs. So, he is once again resting comfortably, or as comfortably as one can in his situation. Luckily he’s sedated, and so young that he won’t remember any of this. I’m sure it’s a lot harder on us adults, simply to see him laying there motionless, puffy with medication, machines breathing for him; none of the usual yells, grunts, and toothy grins we’re used to. I can’t wait to walk into the room and see his big ol’ grin and those chubby, bouncy little legs going again. I think we’re still on track for him to leave the hospital on Monday. They’ll reduce the paralytic drugs in the next couple of days to see if he starts breathing on his own around the edges of the breathing tube, after which time they’ll remove the tube and see how things go. Poor little guy will still be miserable for about a week after all of this as the drugs leave his system and he gets back into the swing of things, but boy will we be glad to have him back to his old self, minus the croup-y breathing. 
I’ll try to continue to keep y’all posted! Good thoughts, good thoughts, good thoughts….
Hello Whisler Fans! This is Heather, writing for Chloe, as she is in the hospital with Owen for the next week. Yes, it turns out that the constriction in Owen’s throat was bad enough to definitely warrant surgery this morning. Chloe and Patrick asked for the surgeon to please bring them some pictures from the endoscopy, so that they could be informed and see the extent of the problem before consenting to any further treatment. When they saw those, and heard the surgeon explain to them how necessary the surgery was for Owen to be able to have a comfortable future, to be able to run around as a toddler and do sports later in life, they agreed to go ahead and have the procedure done. He is now resting up in ICU, in an induced coma so that he won’t be uncomfortable while he heals. He should be there for about a week. After four days, they will start to wean him off of the anesthesia and see how he does. Chloe is planning on staying at the hospital with him, and Grandma Kelly is being gracious enough to take care of Ayden for the next week while baby brother gets better. In the meantime, we hope that Owen heals quickly, and that Chloe doesn’t stress herself out with worry and get a migraine! ;) Thank you for all of your positive thoughts and energy. Keep it headed Owen’s way while he rests up.
Two items of business to attend to: 1) Owen’s procedure has been scheduled for Monday at 7:45am. We have to check-in at the hospital by 6:15am. If the endoscopy alone is supposed to take 45 minutes or so, we should know by 9am whether or not Owen will need to undergo surgery. We will do our best to keep everyone posted on Monday; 2) Owen turned 8 months old yesterday! The time is just flying by! He is fully able to get up on his hands and knees, sometimes even hands and toes and rocks back and forth while yelling to us all (probably translates into, “Look! Look! Look at me! I’m doing it!!!”). I think he’ll be able to actually travel via crawling within the next two weeks or so. He has lots of motivation with all of Ayden’s tempting toys strewn about every room. He likes to think that he can communicate with everyone in the family by yell-grunting in your general direction, after which he fully expects you to make the same noise back. He will do this vocal volleying with you for minutes at a time… until something better or more interesting happens in the room. It’s very entertaining! He is very much enjoying the discovery of his feet and toes…especially when they’re warm and wet in the bathtub and he can suck on them - which seems to work well until he decides to sink his 7 chompers into his big toe - and then the howling commences! He’s eating veggie puree cereal like a champ and is only nursing two or three times a day at most. He’s just too busy and nosy checking everything out in his world around him. He’s turning out to be an incredibly happy and smiley little boy… in spite of the health issues that have been going on. Please keep your thoughts positive and your fingers crossed for Owen this coming Monday… we’ll keep you posted.
So it looks like the endoscopy is going to be scheduled for Monday, January 21st - the time has yet to be determined. The endoscopy itself should last about 45 minutes, during which the doc will determine the severity of the condition (if indeed the subglottic stenonis is present). There is apparently a grade scale associated with this condition which uses percent obstruction to indicate whether or not surgery is the necessary fix. If the docs determine no surgery is necessary, Owen may be able to go home the same evening. My worry at this point is that Owen falls in the “gray zone” between grades, leaving us with the decision to do or not to do. Best case scenario is that the condition does not exist (which would however leave us trying to figure out another reason why his croup has been so bad and lasted so long???)… second best case scenario would be that they can clearly see the subglottic stenonis, and that it falls clearly within one of the “grade” categories, thereby making the decision for or against surgery a relatively easy one. I have spoken with both our regular pediatrician and the specialist doing the procedure at length and pummeled them both with all the questions Patrick and I could possibly think of. With those questions answered, we feel satisfied that we are making the right choice for Owen… and we’re just keeping our fingers crossed at this point that the surgery can be avoided. If it can’t be avoided, then the surgery to do the repair will take about an hour and half. He would then be transferred to ICU for at least a week (maybe as much as 10 days) depending on how well he heals. He would remain sedated for the duration in ICU, since a baby doesn’t respond well to being awake and intubated (having a tube stuck through his neck). He would be tube fed through his nose. The purpose of the sedated intubation for the week is to allow the trachea to heal in that “enlarged” diameter, thereby remedying the problem. It would be a permanent fix. Possible side effects are mainly those that occur during the week in ICU while intubated - pneumonia, other secondary infections, etc… So please keep your fingers crossed that surgery isn’t the answer. As those of you close to the family well know, we have justifiable reason to be overly paranoid about any procedure that requires going under. Let’s hope that that once-in-a-lifetime event is long behind us now…
…so until next week…
Let me explain… I took Owen to see the Ear Nose and Throat specialist this afternoon. Here’s how I wish the appointment had gone:
Me explaining Owen’s history of croup including being hospitalized… doctor checks him over… says it’s just a minor problem that doesn’t require his special expertise… that Owen will grow out of it… everything will be fine… nice to meet you… have a nice day.
Not so.
Instead, the doc determined that our pediatrician’s guess of subglottic stenonis could likely be correct. There are a couple of other very rare conditions that could cause the same/similar symptoms (which I won’t go into here) though they are not likely. What to do now? Well, Owen has to be scheduled into a surgery room at Emanuel Children’s Hospital sometime in the coming two weeks in order for his throat to be scoped (endoscopy). He has to be put under general anesthetic because the problem occurs below the vocal chords… not something you can reasonably reach while he’s awake. Plus, if the docs determine that the condition mentioned above is in fact the problem, they will take advantage of him already being under and do the procedure right then and there (after discussing it all with us first, of course). And if they do the procedure, it involves making an incision into his throat from the outside and placing a stint (tube) which will then be allowed to heal for approximately a week while he hangs out in intensive care, essentially allowing scar tissue to form in the larger, more desirable size of a trach… then the tube gets removed and he’s allowed to fully heal, hopefully fixing the problem permanently. Oy vey.
I definitely did my share of playing skeptic and devil’s advocate during our appointment, questioning and second guessing everything he said. The doc had reasonable and logical explanations for everything I threw at him, and I actually had a really good gut reaction to the man. At the end of our session, I told him, no offense, but I hope you’re wrong! He understood my concerns and reservations about all this but basically said that there really aren’t any other acceptable alternatives (besides continued cases of severe croup, risking serious secondary infections that would not only hospitalize Owen, but could take him entirely… or keeping him on low-dose steroids for the foreseeable future, potentially stunting his growth and/or all the other known side effects that result from prolonged steroid use). Soooooo… where does that leave us? We’ll be getting a call after the weekend with our choice of surgery slots to schedule… and we’ll go from there. The severity of this problem has really blindsided us… I had no idea that this was escalating to this kind of problem and/or fix. So, here’s hoping the almighty they is wrong… though I fear that they are not.
OK, at long last I have uploaded photos from the holiday season…. enjoy!
Late December 2007
Christmas 2007