Wednesday evening

Emma Kate had a busy night with lots of agitation, sounds like they had a hard time staying on top of her drug needs. She did well today, her drugs were managed well, and she just had several times where she opened her eyes and looked around, but didn't get terribly agitated. She likes to play with the wires and blankets, and can't stand the little O2 sensor on her toe, so she always tries to get at it. Her numbers are still stable, and her peak pressures have been in the mid-teens to mid-20s today which is great. Had some productive suctioning from her ET as well, so that was good. She had a nice bath this afternoon, after which she promptly had a huge pee and it leaked up the back of the diaper and soaked her blanket. She was started on a fentanyl patch and a clonodine patch today, and they tried a dose of benedryl to help keep her sleepy, and all the mix seems to be working well. She's down to about a quarter of her highest dose of fentanyl and less than that for her versed, and she seems to be tolerating it well. We're holding the course for now and are hoping for a more quiet night tonight for her.

As for Gretta, she's still quite the pterydactyl during the day (man, can she screech!!) and has gotten a reputation throughout the hospital apparently... and she's gone quite bald on top of her head but has decided to keep the long hair everywhere else! She's almost a month old!!!

Tuesday evening

Emma Kate did well overnight, and has continued to have lots of good diapers. She has been weaning off her drugs through the day and seems to be tolerating it well, as long as her replacement drugs are current. She had a long period this evening where she was very awake and very wiggly, trying to play with her wires and things, and kicking her blankets off. We were concerned earlier in the day about her belly getting distended again, and didn't get much output when we had another NG tube placed, but sure enough, a couple hours later she had a ginormous diaper and lost 3cm from her girth! She had another attempt made for a PICC line in her leg this time, and unfortunately it was unsuccessful. We'll probably have to revisit the option of a surgically placed catheter soon, especially if she takes longer than expected to wean off her drugs. We had a couple nervous episodes this morning where she got to coughing so hard that she gaged and spit up mucous, so now we're just paranoid about aspiration... she seems to be doing ok with it though, and has had some productive coughing and suctioning from her ET. Sounds like the plan right now is to look at extubating possibly Friday, but as we have learned well, that is subject to change. Our primary ENT doc has gone out of town for the holiday and won't be back till Monday, so hopefully nothing terribly thrilling happens before then.

Monday evening

ENT doc checked Emma Kate with the scope this afternoon and says the trachea is about the same as the last time, and he was able to get her to cough while looking since she was more awake- when she coughs, it does collapse- not completely, but significantly. So we're still planning on working towards extubation and seeing how she tolerates it. Depending on how she does, we may have to do a tracheostomy not only to potentially help with breathing but also to allow access for suctioning her airway. This may buy us a few months of healing for reassessing as well as being a safer candidate for a revision surgery in the future. Only time will tell how well this is going to be tolerated. If she does have to get another surgery, we'll likely go to Cincinnatti Children's Hospital for it, where there is a surgeon there with a good deal of experience with complicated airways like hers.

She's had a good day otherwise, doing well on the drug decreases- she down to half of the versed she was on, and nearly half of the fentanyl. She's staying calm when awake and is opening her eyes and looking around a little. She just seems ultra mellow which is really good. We'll see what tomorrow brings. We're very anxious about extubation and just want to know what the future holds.

Monday morning

The rest of Sunday was relatively uneventful- her ventilator settings stayed the same, since she is relatively close to extubatable settings. She's weaning down off her fentanyl and versed well and seems to tolerate little episodes of being slightly more awake, then she settles back down nicely. We're not seeing much of the agitation that we saw the first day, thank goodness. Her urine output continues to be in a good range, and we've not seen any edema returning. She has had a few little wheezes off and on, and Greg's gotten really good about getting the RT to lavage and suction the tube before jumping to an albuterol treatment- most times the lavage resolves the wheeze and she gets back to sounding really good without the medication. (The albuterol really makes her heart race for a long time afterwards.) Emma Kate has had a couple of alert periods today and even opened her eyes a little bit! Just recently she actually tracked Greg back and forth, which we're glad to see her doing- it's a good sign neurologically speaking.

For today, (it's day 22, can you believe it??) we're doing much of the same, continuing to wean down her massive drips, and we're expecting another consult with ENT to decide when to scope again and when they think it's going to be appropriate to attempt extubating her. Once we know that, we'll know when to try her on the support mode on the ventilator, where she is essentially breathing on her own (the vent doesn't do any mandatory breaths), but the machine gives her pressure/volume support to eliminate the sensation that she's breathing through a straw. They're considering another attempt at placing a PICC line so they can pull the IJ catheter, rather than doing the surgically placed catheter, since she won't necessarily need really long term access at home. Hopefully we'll have better luck this time since she's not swollen any more. Once we have her scoped and we have a better idea of her stability, they'll decide an approximate time to extubate her and that will also determine whether or not we go for the PICC line. We're anxious to see what they find, as it will likely give us a better idea of what road we're going to be heading down next.

Gretta is doing well, growing like crazy. She's fitting into 3mo clothes even though she's not quite a month old yet. We had to do a little shopping trip for her yesterday since she's outgrown nearly all the clothes we had down here for her! She's still a little fussy through the day but doing great at night (thank goodness!!!!). She is loving some nakey time right now and is staring down a little Elmo toy.

Sunday morning

The night went alright. She kept her sedation level where they wanted it: able to be stirred up but able to settle back down again. She had some great poopy diapers and what is even better is that we are getting urine without trouble now! That is a big relief for all of us. She is getting some meds reduced to drop the number of her drips going in so we have to be really quiet around her today. Robyn will write more later I'm sure.

Saturday evening

We had a relatively quiet day today, mostly still working on finding a good sedation plan for Emma Kate. She's done well overall and is mostly initiating her own breaths with the ventilator. At one point there was some worry about her prolonged expiratory phase, so they increased the PEEP on her ventilator to see if it would help. Later in the day she suddenly desaturated and the peak pressures on her vent went up. They also were hearing some wheezes in her lungs. They lavaged and suctioned her ET and gave her an albuterol treatment. They think it may have been a mucous plug, as it seems to have responded to the treatments and hasn't happened again since then. They also decided to reduce the PEEP back to where it was this morning. We were concerned about the right side of her lungs looking a little more dense on the xray they took, compared to the one they took this morning, but they don't seem to be concerned by it and are comfortable with where she is now.

She got another good bath today and had her hair cleaned nicely. She's still getting her PT and wearing her foot splints off and on through the day. She had a few nice quiet awake periods through the day, and seems to be very responsive to the sedatives, which is reassuring. Her urinary catheter was pulled late this morning, and we're going to be watching for her to pass urine on her own... it's likely to take a few days for her bladder sphincter to relax from having that catheter in there so long. Just another thing to agonize over!

We're likely to have a similar day tomorrow, at some point they'll start weaning her off the fentanyl and versed, and over the next few days they'll work to getting her to "extubatable settings" on her ventilator- sounds like we're not too far from that already.

Friday evening

Today was a good day with better results on the sedation issue- every time I was able to be in with Emma Kate, she was either sleeping with heavy sedation or just giving little wiggles and chewing her ET a little bit. I didn't see any of the really awake episodes like yesterday when she was moving a lot and looked like she was trying to cry. At least once she did come-to enough to try to reach for her ET but they got her calmed back down and rearranged her arm restraints so she should be safe. Her arterial line in her right wrist had started to leak blood a little bit around the entry site, and it had been in for a long time, so they elected to go ahead and pull it- now the only catheter she has is in her neck, and it's a double-lumen catheter. We're a bit in limbo on the catheter situation too, since her IJ (internal jugular) catheter has been in for about 1 1/2 weeks and they were talking earlier in the week about wanting to get that changed out. The thought was to take her to the OR again and have a longer-term catheter surgically placed so that we could pull the IJ and not have to worry about constantly moving catheters from site to site any more. We were supposed to get that done today, but they realized that if this plan is working, we might be able to manage with the IJ for several more days then get rid of it. If it looks like we're running into complications or if her trachea isn't holding open like we need it to, and it looks like we're in for another few weeks of treatment or surgery, then we'll get the surgical catheter placed.

They're weaning down the ventilator slowly, to allow her to build up her breathing muscles again, and they're starting with the ventilator respiratory rate going down so that she's having more frequent independent breaths. When I left the hospital for the night, she was breathing pretty much independent of the machine (the machine still supports her each time she takes a breath though) with only an occasional breath initiated by the vent. She's still looking good and hasn't yet started with the forced-abdominal exhalation like she has done in the past. She's been off the paralytic for about 30 hours now, and previously she was having issues develop by about 18-24 hours off the paralytic, so hopefully this means progress. Weaning from the vent will be a several-day event, and we're not sure yet when to expect she might be extubated if all goes well- we've heard as late as next Wednesday or Friday.

Little Gretta is still doing well although she's hit that phase at a few weeks old where tummy issues start to show up- she's had some gassiness that has made her daytimes a little more difficult- she's frequently fussy throughout the times when she should be sleeping, and often only gets short cat naps between little belly aches. She finally had a good long nap yesterday on top of me, and luckily she's still doing well at night. She's very strong and is holding her head up pretty well at this point although there's not a lot of control there yet. She's smiling and focusing on us more and more each day, and she's losing the hair on top of her head! She's going to look like she's got a serious receeding hairline soon- the hair on the sides and back isn't letting go, and it's so long... it looks so silly with barely any hair on top! She's growing like a weed too, she's fitting snug in clothes that Emma Kate couldn't fit into until she was a few months old! :) And man, this little girl has some big feet- we've had to buy 6-12 month size socks for her since all the others are too short in the foot! She's going to have big canoes like her big sister does! We haven't been taking many pictures because of the circumstances, but Mimi did manage to capture Gretta doing her first thumb-sucking practice: