What's missing from this picture? Ventilator, heli-ox setup, nitric oxide setup, you get the picture...

Sunday evening

Last night turned out to be a little on the rough side, Mimi and Daddy split the night hours again, and it sounds like about half the time she was sleeping and the other half she was a bit agitated. When I came in this morning, she was awake but not really herself, doing some sort of aimless movements and such, different from what we saw before that we thought was withdrawal. We removed her nasal O2 cannulas and her NG tube, not only whittling down the hardware, but also to see if it would help her settle to have less "junk" in her nose. They think she may be going through "ICU delirium" and have started her on risperdal to try to treat it. She showed this behavior for about 2 or 3 hours before she had finally worn herself out and fell asleep. Plus, along the way they gave her benadryl, and the risperdal should help with sleeping too. After she finally gave in, she slept for about 5 hours or so, and when she woke up it was like Emma Kate was back again! She was acting like herself, although weak and very hoarse, but she answered a few questions for me, which was wonderful. She got a new clonidine patch, her pacer wires were removed, and her central catheter was pulled. She's been doing great even without the oxygen, her O2 saturation is really good. Only a couple times today has she desaturated, and each time she comes right back up again. One time when I came back into the room, she was pushing herself up weakly from her stomach, I asked her if she wanted me to pick her up, and in her tiny little voice she said "yehsa" so I picked her up and we were able to sit in a big chair together. All her remaining lines and wires had to be rearranged, but she fell asleep very comfortably with her head on my shoulder- it was absolutely wonderful to cuddle my girl again! She went through one more awake period this evening and was fidgeting with her blankets and stuffed animals in her bed. She was starting to look a little bit shaky or agitated again, but she actually ended up settling back down after a bit and is sleeping peacefully right now.

The plan for now is to continue weaning her off her precedex- once that is stopped, she'll be off all IV drips, and will just have an occasional IV treatment, everything else will be orally administered. At some point they will decide when to start allowing her to eat some, and there has been some mention of doing a swallow study on her, but no one has discussed it with us yet. Her ENT doctor will be back tomorrow and I'm eager to see what he thinks of her- so far we're really quite surprised at how well she seems to be doing. She is still making noise when she breathes, and she does have the expiratory effort, but she's managed really well even when she has been agitated.

The sad part is that I'm now wearing a mask in her room- my nose has been feeling dry all day, and just tonight the feeling started to extend into the back of my throat... It could very well be all the dry indoor air we've been exposed to for a month now, but I'm worried it could be the beginning of a cold. Seeing how that's all it took to send her spiraling downward to begin with, I'm trying to be overly cautious about protecting her from any possible respiratory illness. That's exactly what she does *not* need right now.

Gretta continues to do well and have her fussy times too, she's a funny little one. It's amazing to me how different she can be from how Emma Kate was as a baby. We'll be calling in tomorrow to get an appointment for her one-month check up, and can't wait to see what her weight is. She has good times and bad with nursing for the last 2 weeks or so, but she certainly doesn't seem to be showing any signs of lacking nutrition, for sure!

Saturday evening

Today has been relatively quiet! Emma Kate was taken off the heli-ox and just put on oxygen through a nasal cannula, which she is tolerating so much better than the mask! She's doing great with her oxygenation still. She's making less noise when she breathes, but when she's awake she still has a significant expiratory effort. She looks really good (still not 100% "normal" though) when she's asleep. They attempted to get a peripheral catheter again today, in an effort to be able to remove the central line that is getting old. They had a hard time getting one- she was a bit of a pin cushion for a while there, again. They did get one in her left arm, but were concerned that it wasn't the greatest or most "secure" access, since they had some trouble with it. It seems to be flushing fine, so hopefully it will be ok. The hard part is that she has to wear a board brace on that arm so she won't damage anything, and it's really heavy for her to move it around now. They started her feeds back slowly through the TP line, and so far she is tolerating it well. They may possibly pull her NG drain and her pacer wires tomorrow if she's still doing well. They're starting to decrease her Precedex again, and should be off it completely by morning if she tolerates the decrease without getting agitated again. We're hoping to get her in a bigger bed tomorrow so that we can cuddle with her in the bed instead of having to try to get her out of it. There's some talk of her being moved out of the ICU sometime early in the week if she continues to do well.

She's been very quiet and sleeping through most of the day, and just this evening has started being a little more awake, she tried and tried to turn onto her belly to sleep, and with the OK of the attending doctor, we let her. She slept comfortably for a little while, but then couldn't get her braced arm in the position she wanted, and she got upset about it. She's got a tiny little squeaky voice tonight, and I still can't tell what she's saying, but it is so sweet to hear her voice!

One other note Greg reminded me about- for any blog readers with kids- if you have children's videos or movies that your kids have outgrown, consider donating them to a hospital- it's so nice to have a bit of a library to select from to help occupy the long hours spent sitting in the bed! Some of the rooms here even still have a VHS player with a DVD player, so consider getting rid of all those old video tapes or DVDs for a good cause!

Saturday morning

First off, I apologize for not updating the last two evenings- things have been a bit hectic! Here's the recap-

Thursday was a pretty good day overall, Emma Kate was doing great with her drug decreases and was pretty mellow all day- she was opening her eyes more and looked more alert, but just kind of laying there quietly. By mid-day, she was off the fentanyl drip, and down considerably on the versed. I can't remember if I already posted this, but she's got a clonidine patch and a fentanyl patch to help stretch things out and work on helping to prevent withdrawal signs. She's had her methadone and adavan doses increased because she had been showing signs suspicious of withdrawal, mostly lots of somewhat random herky-jerky movements with her arms and legs, and the shakes. She's been sweating and yawning too, which can be signs of withdrawal as well. Into the evening, we had another bit of a scare where she started coughing really hard and ended up gagging and spitting up some thick mucous and bile- luckily the nurses were right there over her at the time, so they were able to suction her pretty fast. The cuff on her ET had been deflated a couple days prior in anticipation of extubation, so we were just really scared about aspiration. Despite everyone's efforts to ease our fears, we weren't comfortable leaving her overnight since the nurses can't be in the room looking at her every minute (why not I ask?!?!) So Mimi and Daddy split the night so they could be awake with Emma Kate and also get a little sleep. They replaced her NG tube, which didn't seem to be working well, and apparently there was a bit of a plug in the end of it. They put in a larger diameter tube, and have been running the suction regularly to help keep her stomach empty, but she's just becoming more and more awake and getting a little more agitated, and with 3 tubes sitting in the back of her throat, I am amazed she hasn't been doing more gagging. Overnight she was weaned completely off of her versed and down to minimal amounts of Precedex. She's been getting Zofran for possible nausea, and regular doses of Benedryl to help keep her a little sleepy without depressing her breathing.

Friday morning she was doing well, pretty awake and alert but not agitated. They went ahead and extubated her while she was in a good state for it, and they immediately started treatments with inhaled epinephrine to help reduce the severe laryngeal edema from the ET being in there so long. They also put her on a helium-oxygen mask which provides more laminar air flow than plain oxygen. She made all sorts of coarse noise from her throat, and was having a lot of abdominal push to exhale, which was very reminiscent of the night we brought her to the ER. The doctors were very happy with how she was doing- they feel confident that the majority of the noise she makes (it was a LOT of noise!) is from her laryngeal area, and that should improve significantly within a few days. They are happy with her air movement and don't think her patch is completely collapsing because she's not air trapping and her blood gases have been good, and she sounds like she has good air exchange in her lungs. She's definitely got some collapse though, as she does have a pretty big abdominal push to exhale, but the doctors are comfortable with the extent of it for now.

After a couple hours, they actually let me get her out of the bed and sit with her on my lap in a chair- it was wonderful, and I honestly had forgotten how big she is, and how much she weighs! It's crazy what you seem to forget when you're used to it all the time and then you miss it. She got really agitated in my lap, really wiggly and antsy, and we had to put her back in the bed and start her back on her Precedex drip. It took 3 of us to try to control her hand movements so she wouldn't accidently pull any of her monitoring equipment off or remove her pacer wires, definitely looking like withdrawal signs. She also got a little bolus of fentanyl and that seemed to do the trick. The rest of the day was pretty quiet for her, a couple of times she did wake up a little more and she seemed a little better controlled and less agitated. She has tried to speak a few times, and nearly nothing comes out- what we can hear is just a teeny tiny high-pitched little squeal. It's so hard to have her trying so hard to communicate and we have no clue what she's saying. A couple of times she's also gotten to pointing with her finger, but we can't tell what she's pointing at since she's so shaky with it.

Friday night I got to sit with her for a while, she was awake but very calm, much better with the drug arrangement like they adjusted it. She got a rub-down with lotion, which she desperately needed. She started to cry for a little bit, which was really hard to see- she would inhale deeply and then it was like she was just holding her breath for a long time, then she would push all the air out forcibly. I couldn't tell what she was crying about, and tried to comfort her with cuddling and kisses and talking about all the things she likes back home, the kitties, baby Gretta, baby clothes, movies, etc. Finally she did settle down, and it sounds like she had a pretty good relatively quiet night. Mimi and Daddy split the night again, so that she wouldn't wake up alone, and also to make sure she kept her heli-ox mask on well and didn't pull anything off. They have arm restraints on her, but sometimes it's hard to judge how far she can reach with them.

This morning (Saturday) she is sleeping quietly and is actually breathing much easier- if only she could breath like this when she is awake. How do you get a 2-year old to relax and breathe easily?!?! Her attending doctor was joking with me last night (actually probably talking more seriously than I care to believe) about how toddlers will throw a fit and scream and turn blue and pass out, then they just start breathing easily again, and that's was Emma Kate would likely do if she gets too worked up- just have too hard a time breathing that she would pass out, her body would relax, and she would allow the air to more passively leave her lungs rather than fighting against the partial collapse of the patch. How terrifying is that? Anyhow, she sounds better today- less noise means less edema in her larynx most likely. They've not done rounds this morning, but it sounds like we'll probably take her off the heli-ox today and put her on regular oxygen in it's place, and mostly just giving her time to recuperate and rest. One of her cardiothoracic doctors came to see her this morning and was very pleased with the way she looked. He thinks she'll probably have a few more days here in the PICU then be moved to another ward if it looks unlikely that she'll have to be re-intubated. They'll probably pull her pacer wires tomorrow (I can't wait for those to be out, they're a pain!). So for today we're just trying to keep her comfortable and calm, she'll have several breathing treatments in addition to more IV steroids, and hopefully it will be quiet!

I wanted to mention how grateful we are for all the support our friends and family have given us. It has been wonderful to know how many people we have out there that care about our little family. We can't express enough how thankful we are to everyone. The people here have been so great as well- so many are supportive of families here and really work to reduce the stress and issues families have to deal with in a situation like this. The Ronald McDonald folks have been incredible as well, not only giving us a nice, very inexpensive place to sleep, but they have dinners donated to them every single night. A lot of donations have come from individuals and churches, college sororities, and restaurants. The local McDonald's donates dinner every Monday night, and a few nights ago, a great steak dinner was donated by TGIFridays. They even had people cooking a serious Thanksgiving meal all afternoon on Thursday. There have been several gifts given to Emma Kate, and I know she will love and appreciate each one when she is stronger. This experience has made us so thankful for the generosity of family, friends, and strangers, and has made me realize how important it is to give and support others! We hope to be able to give back in the future, and to help others who are in difficult situations.

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:

Thursday evening

Well, today was a big day. This morning the decision was made to stop Emma Kate's paralytic drug and let her start initiating some breaths for her afternoon scoping. Her numbers are looking awesome- we've seen peak pressures in the teens and low 20s today, and I swear I even saw a 9 a few times. Everyone is really pleased with her numbers on the ventilator. The scoping went well- she tolerated it with sedation, and her airway is open but smooshed a little bit. They say it is significantly better than it was 2 weeks ago when it was just collapsing flat and closing off altogether. It's not as wide open in the repair area as it is in the normal part of her trachea, but it's not moving much if at all, and she even tolerated having the larger scope passed in there and was taking breaths in and out around it with no trouble and no additional flattening or collapse. So, the results are not as black and white as wether or not this fix is going to last or if we need to reoperate- it's more of a gray zone of her airway being open and improved, but is it *enough* and will it hold up to more breathing, and what will happen when she coughs or breaths hard. While she was still sedated for the scoping, the nurses gave her a bath and washed her curls, and I gave her a good rub-down with lotion afterwards. She also got her abdominal drain removed.

Right now we're playing a game of how much sedation does this little girl need- her doses of sedatives and pain killers have been so astronomical, no one has any idea of how she's going to come out of this over the next few days. We're transitioning her to methodone and adavan to help prevent withdrawal issues from the narcotics but we have to adjust doses regularly to establish what seems to be enough but not too much or too little to keep her in a good place. This afternoon was really hard to watch because she was so incredibly awake. She actually opened her eyes a few times. Most of the time she was just wiggling around a little bit, which is good, but occasionally she'd really fuss over the tube, and her facial expressions were just gut wrenching- it so looked like she was screaming crying but no noise was coming out. It was excruciating waiting for the sedatives to kick in after they had been given. I know she's probably still pretty out of it and I know she won't remember any of this, but it's just traumatic to see things like that. Luckily the sedatives took effect and she's quiet now.

The plan for now is to let her rest through the evening and overnight, more sedated than awake, and to let the ventilator continue to work her breathing for the most part. Starting tomorrow they're going to let her be a little bit awake more often and also start reducing her narcotics as her new drugs start taking better effect. She'll start being weaned off the ventilator support as well. We'll see over the next few days wether or not the patch is going to stand up for her or if it will start collapsing under regular use.

We've noticed a few times that her stomach suction tube seems to be pulling feeds out (her feeding tube is actually past her pylorus and in her small intestine), and we expressed our concerns today- the xray still shows that the TP (transpyloric) tube is properly placed, but we wonder if it is just stenting the pylorus open and allowing feeds to slip back into the stomach. We were just worried that it was causing her to not get the nutrition and fluids she needs because they're all getting sucked out. We went ahead and shut off the suction but left the stomach tube in place and will watch for her belly size to indicate whether or not there is anything building up. I have a feeling it will be fine, especially since her intestinal motility is improving and now she'll be off the paralytic. We'll keep an eye on it.

Emma Kate is looking great overall- a little more like herself. The swelling is nearly completely gone and her color looks good. We're getting lots of positive comments from a lot of the staff here, and they're especially thrilled with her numbers on the ventilator.

Gretta is doing well and growing like a weed- I jokingly call her my fat baby- her cheeks and neck are so rolly-polly! She's going through a little phase of fussiness and gassiness, but is still doing great at night (knock on wood!).

Wednesday evening

Emma Kate has had a decent day today, stable for the most part. A few times she dropped her O2 concentration for unknown reasons... each time she recovered with a few breaths of higher O2. She is being turned regularly and seems to have a small area of irritation developing on the back of her head- we're watching it carefully and hope it doesn't turn into anything significant. She's sometimes not tolerating being turned to the right although most times she tolerates the left just fine. For some unknown reason her right hand seems to be slightly puffy again... another thing we can't quite figure out! She got her abdomen examined with the ultrasound today and she didn't have any significant fluid there, so they're thinking of pulling the abdominal drain if she continues to have no output from it. We just don't want to jump the gun on it again. Her ENT doctor came to scope her again this afternoon and felt like things looked as good as they did yesterday and he did another steroid treatment on her. She did one more weird thing today, (we seem to have a lot of those weird things with this girl) where she got sweaty just on her head for a little while. Nothing else was sweaty, and she wasn't running a fever when it was noted, so we don't know for sure what it means. She's done it twice now- once today and once last night. If she does it again, they'll pull cultures to run for infection. She's still getting some pretty powerful antibiotics though, so hopefully there's nothing serious going on.

The plan for now is to check her at some point tomorrow while she is breathing on her own with ventilator assistance, and see how her repair area works with dynamic pressures. How she does with that will largely determine our course for the future. I'm sure it will be a restless night for all of us, anxious to know what is going to happen.

Tuesday evening

We've had a good day today- This morning it was decided to take Emma Kate off her IV fluids since she is tolerating the feedings so well and is up to decent amounts of food through the NG tube. Her numbers have been good all day- the only times we had any worries were when he BP elevated a few times, each one was soon after associated with us seeing her eyebrows move, indicating she was getting light on her sedation or paralytic, since she is getting tolerant to them. She's actually starting to get higher doses than the people in the pharmacy have experienced... she's one tough little cookie. Her vent numbers have been awesome all day- her peak pressure has been it's lowest ever, in the mid 20's, and she's getting rid of CO2 really well too. She was scoped again today, and both her ENT and the pulmonologist were very pleased with how everything looked!! It's staying open (granted, she's still getting positive pressure from the vent, so we don't know how she'll do breathing on her own yet), and inflammation has improved. We got a double thumbs-up from her ENT, and got more of the "magic drops" in there (steroids). Her peak pressure went up to about 28 (which is still really good for Emma Kate) after the procedure and the drops, and after a little while, it's back down to about 24. We're so happy to see progress in a good direction! She's gotten some physical therapy from the hospital today in addition to Mommy's attempts through the day, and is wearing her splints off and on as well. She got a good rub-down with lotion this morning and looks really good- the nurse last night gave her a little bath and cleaned her hair a bit- it's curled up all cute again. For now the plan is to stay the course unless we have indications to do otherwise, and to go a few more days monitoring and scoping at least daily. Then we'll have to decide when to start taking her off the paralytic and initiate some breaths on her own...

Monday evening

Emma Kate got scoped in the OR again this afternoon, and we got some positive news- they pulled out the ET that was acting as a stent, and for a while after that, her trachea stayed nice and open before starting to collapse again. They cleaned out some secretions and a little bit of granulation tissue, but didn't have a whole lot to do. She recovered well- within a couple hours her BP and HR were back to normal, and she's doing awesome with her ventilator. She was acidotic after the work was done, and she returned to a normal pH pretty quickly with minimal intervention. Her numbers all look great right now. They replaced her tube with a normal cuffed ET in a normal position, so now we can shift her position and avoid pressure sores... I feel so much better about that! She's doing well even in a side-lying position right now. We got some splints made for her feet since she's going to be paralyzed for now, in order to help prevent foot drop. For now, the plan is to maintain her where she is for at least several days, and to have her scoped at least daily to monitor what's happening inside and to treat locally with steroids. She's also getting started on IV steroids and inhaled steroids to help reduce inflammation from the tube being in there irritating things, as well as to help reduce granulation tissue buildup. As long as there is progress we'll keep going, but if things start looking like it isn't going anywhere, it sounds like we might have to consider reoperation. We're hoping things will continue going well for our little butterbean!!! She's looking so good with reduced edema- her arms and legs look great, and her abdominal drain hasn't had any significant production all throughout the day, which is encouraging!

Monday morning

Well, scoping is planned for today. They'll also be able to move her around a bit and assess if anything is going on on the back of her head or back since we've not been able to move her at all for days now since that ET was so delicately placed. We're anxious to hear how things look inside and whether we're making progress. Sounds like there could be a possibility of transferring her to Cincinnatti where a doctor there has actually dealt with anatomy exactly like Emma Kate's about a dozen times and might have the option of another surgery if necessary. That might be jumping the gun for now, but it's a possible avenue if her airway isn't coming around for us. Hoping for great news after the scoping... keep your fingers crossed for her!!!

Sunday evening

Well, Emma Kate has done great for over 48 hours now- all her numbers have been perfect and she's only needed her ET suctioned a few times. She's had to be on increasing doses of sedatives and paralytic meds due to developing tolerance, but as long as it works we're good. She's only required boluses of meds a couple times through today, otherwise it has been very smooth. She's got her intestines working again- she had a big poop yesterday evening and a few smaller ones through the day- this is excellent progress, but honestly the process of changing her diaper freaks me out- it moves her just enough to shift her on the bed and the ET always looks just slightly different each time- it's IMPOSSIBLE not to move her at all. It's agonizing. She's looking great, the distal edema really has reduced significantly, and her face is looking better and better.

Right now the plan is to *possibly* repeat the bronchoscopy tomorrow morning around 10am, and assess healing as well as look for that little flap of tissue. If it ends up being a little granuloma, hopefully they can remove it and laser it so it won't bleed. We're really anxious to know where we stand and what the game plan is for the future. It's possible that the scoping might be put off until mid week, depending on how the surgeons feel about her current situation. We're loving the fact that she's been so stable, but we're also just biting our fingernails worrying about how long this stability is going to last.

Saturday evening

We have reached over 24 hours without any sort of drama!! Emma Kate has done so well through the day, all her numbers are perfect, with the exception of the peak pressure on her vent, it has risen 3 times today and each time it resolves itself after her ET is suctioned. They seem to be getting some good secretions out of there, and we're relieved to see that the numbers are responsive to the treatment for once! She is looking good too, today is the first day we've seen her lower arms and legs actually be their normal size! It's good to see those little things coming back again!

Saturday morning

Emma Kate was stable through the night with great numbers again. They skipped the evening chest xray, not wanting to risk moving the ET, but they did get one this morning and it looks good. Her peak pressure was rising to the upper 30s so they went ahead and suctioned her ET and got some good gunk out. Pressures dropped into the upper 20s/low 30s, so that was good. Having to step up her sedatives to keep her out now- she's really building up quite an amazing tolerance to the drugs and is on really high amounts. We're having to be extremely careful doing any physical therapy so we don't cause her to shift at all, and we're having to let go of concerns over potential bed sores on her back and head in favor of keeping her airway secure. It is really scary but hopefully won't become an issue anyhow. Luckily she's still so small and lightweight, so hopefully her skin is staying strong and healthy. We've got the same attending doctor through the weekend and I'm a little reassured that they've been through this crisis and were able to deal with it quickly, in case it happens again over the weekend. As far as I know they're still planning to reassess on Monday, and when they have her off the vent prior to getting things set up the way they want them to be again, they'll roll her a little and assess how her back is doing. I can just barely run a finger under the edge of her sides and what I can feel is still ok, but I can't safely reach any real concerning areas anyhow. We're happy to have one of our favorite nurses in with Emma Kate today- let's hope for a smooth weekend.

Friday evening

Well, lo and behold, there was excessive fluid in her belly. Thank goodness they finally gave in and did the US exam like we had begged them to do last night. We had been told they were going to do it last night (would be done after we had left for the night), but they didn't end up doing it- this morning, her belly girth was larger, and they finally arranged for the evaluation. Got another drain in and so far they've gotten off about 300-350ml though the day. Thank god. They've restarted her feeds at a reduced rate, since there has only been one major poop since her surgery date 12 days ago. She was doing well through the day, and we were watching her peek pressure slowly rising on her ventilator. Seemed somewhat harmless and somewhat responsive to sedation or stress. The tube placement has been an ongoing issue as well, and we've been very concerned about it being in a different place than when they came out of the OR on Wednesday. It's near impossible for it to not be moved at all, even though we've stopped intentionally repositioning her in the bed. Around 3:15pm, the doctor and the respiratory therapist were looking at it to try to fix it back to optimum, and when they moved her head, all of a sudden there was air leaking around the tube and coming out her nose and mouth instead of down into her lungs. It was terrifying- they were trying to bag her and her chest wasn't rising at all. I couldn't watch, so I don't know exactly what was done. They managed to get her back to stable and her O2 saturation was responding well despite the apparent lack of ventilation. They had several doctors in with her and got the scope to the room to allow repositioning of the ET. In checking her out inside, they thought they saw a flap of tissue like granulation tissue that was acting as a ball valve at the end of the ET. They were going to let the ENT doctor take a look and use the rigid scope to be able to use forceps to explore it and possibly remove it, and they have a laser that could cauterize it to stop bleeding. When they were looking with him though, they didn't see the same tissue. So they just replaced the ET in the ideal spot and actually sutured it to her gums and around two of her teeth in addition to significant taping to secure it. They think we only have 1-2mm of leeway before the tube will no longer be in an ideal location, so we have to be extreeeeeemely careful- even just a bump into her bed makes her jiggle enough to be worrisome. For now she looks great and all her numbers are pretty much ideal, and we just need to ride it out for a few days before reevaluating her airway again. I have a feeling there will be some sleepless nights ahead.

For Gretta's sake- we'll update on her too- she was evaluated by the wife of Emma Kate's attending doctor, who also happens to be a pediatrician. She's doing perfectly well and setting records for weight gain- she's up to 8lbs 5.5oz, before we know it she will outweigh Emma Kate!

Friday morning

Emma Kate did well overnight with stable numbers, and her ET was confirmed to be down at the carina like we need it to be. Her belly was distended some, and they monitored it overnight. This morning her belly is slightly bigger but they don't think it's tight. They still feel like it is the liquid diet sitting in slow intestines. They are confident it's not something more serious because it's not firm and her chemistries are all normal. They've ordered an U/S exam for today just to be sure her intestines and kidneys are still normal. She's developed a little sore spot near her subclavian catheter, probably from the dressing pulling the skin funny, so they're going to pull that one out and keep using the internal jugular catheter on the other side. So glad they didn't pull that one yet... I hate for her to be stuck for another catheter!! Other than that things are going well for the time being, and we're just hoping to ride through the weekend.

Thursday morning

Well, the procedure was successful- they were in there a while, but they didn't have to use the ECMO machine for bypass, and they were able to get a 3.5mm ET inserted down to her carina to act as a stent in the repair. The very top part of the repair was still tight, as if maybe there was one more cartilage ring that was still snug, but they were able to gently push through and dilate it a little bit. They really feel like there has been progress made, possibly by passing the scope through a few times to help dilate things ever so slightly. So for now she is paralyzed for the forseeable future until she is reassessed- we don't want to risk any movement of that ET tube. It's agonizing watching anyone mess with her tube at all... even when they are very careful. She had a good quiet night with stable numbers, and her HR and BP are down in much more reasonable rates. This morning she looks better too- the puffiness in her eyes has gone down, although her hands and feet are still pretty big. Her belly is still a little big but doesn't seem to have gotten any bigger overnight. She's putting out great amounts of urine and her blood gases and chemistries are looking good. She was low on albumin and hemoglobin so they're dosing her with albumin and giving another blood transfusion to be on the safe side. So for now we're hoping for a few days of quiet while she just lays easy and heals that patch in a nice open formation. Sounds like unless things change, Monday will be the earliest we'll be looking at checking again with the scope- we've heard that before and had things drastically change just a couple hours later, so we're keeping our fingers crossed.

Wednesday evening

This has been one heck of a day. After the scary morning, we actually got a very reassuring report from the scoping- they were able to get in all the way, which they weren't able to do before. They suctioned some secretions, and observed the patch in action. It is still collapsing but with enough positive pressure from the vent it will stay open. They also suspect there could possibly be some granulation tissue or debris on the patch that could be narrowing the airway but the optics on this scope are not as good as on the rigid scope they use in the OR. They elected to put her back on the paralytic and keep the PEEP up on the vent to keep things open for a few days and reassess on Monday. So I thought we were just going to be riding it out... so wrong. After a really encouraging talk with the cardiac doc, we were feeling so good about everything. Then shortly after, her numbers starting declining. Her HR and BP are higher than they ever have been, and her vent stats are getting worse. She's getting more and more acidotic, and her belly has started to get enlarged again, with no good explanation. They pulled the abdominal drain since it wasn't draining much, and it was getting fibrin in it. Xrays and US didn't really show why her belly is so big. She's gotten so puffy overall through the day too. Then her cardiac doc had the idea that she's "air trapping" and the CO2 is building up in her lungs, she's unable to get it all out with so much pressure and it's leading to airway collapse (I'm having a hard time understanding the concept...). He suggested that we try to pass the ET down to her carina and let it act as a stent from the inside to allow things to stay wide open. He felt like the first part of the repair is the part that is most floppy and the airway past the carina is open and stable. The pig bronchus will be above the ET but will possibly still get some ventilation. He's not worried about it becoming atalectic for even a couple of weeks and has methods of getting around it anyway. So, they just placed another internal jugular catheter in case they need to hook her up to the bypass machine in an emergency, and they took her down to the OR just now. They're going to go ahead and assess with the rigid bronchoscope that has the better optics to allow evaluation of the patch and any granulation/debris to be removed, and then slide the ET down over the scope to the point where they want it. It sounds like a great idea but this is completely uncharted territory, and it's all speculation. We're so grateful to have such a great team of doctors working together on this and are hoping and praying this is the fix that will give us several good days to allow optimum healing to occur with the airway in the best position for scarring in place. It will be a little while before they're out of the OR, and until then we're waiting.

Gretta update

With so much going on with Emma Kate, little Gretta keeps getting overlooked in our updates. She's doing incredibly well, especially given the circumstances. Nana and Mimi have been taking awesome care of her, lots of love and spoiling. They call when she gets hungry and I go out to nurse her. She nurses like a champ, half the time it sounds like she's just drowning herself with so much milk, and we had a friend of the family who happens to be a resident in the NICU here come by and check her out on Monday. She was all the way up to 8lbs 1oz, which is an incredible gain! Friday a week ago she was 6lbs 2oz at her last exam. I can't believe she already weighs that much! She's incredibly strong, looks around and studies things in the room, and sleeps well at night. We're so preoccupied that we haven't had a chance to take many pictures, but hopefully when things settle down a bit we'll get back in the groove.

Wednesday morning

Yesterday was a long and stressful day. Emma Kate held her own through a lot. They removed her last chest drain, attempted to place a PICC line (unable to get it), placed a subclavian line, pulled her jugular line, and removed her urinary catheter. They were tied up with her so much of the day that it seemed we were only in with her a short time until evening. She has been breathing spontaneously much of the day but still has a considerably drawn out exhalation, so they expect the repair area is still collapsing. By late evening she had not produced any urine (having the catheter in for so long can often times lead to a delay in the ability to urinate on your own again), so they did an in-and-out catheter to relieve her bladder. Overnight she did finally have a bowel movement (thank goodness, she's been on all sorts of laxatives...) and it was quite messy, so they elected to put her foley catheter back in to reduce the risk of a bladder infection if they had to keep doing the in-and-out catheter repeatedly. She also started to swell up again last night, her hands, feet, and eyelids are so puffy. They started her back on IV lasix instead of the oral form she had been on. Her attending Dr is hoping that it might ease her breathing a bit too.

This morning we've been stressed out watching her heart rate and blood pressure go up, and occasionally her O2 saturation drops. She's moving around a bit, and even after giving a bolus of her sedation her HR and BP don't change too much. There's talk of possibly scoping her again this afternoon (we were supposed to be waiting until Monday...) with the hopes of possibly being able to dilate her airway a little bit to allow better breathing. It makes me nervous because this whole time they've talked about delaying dilation attempts until several weeks out from surgery.

Tuesday morning update

Yesterday was a big day for Emma Kate- they took her off her paralytic drug again to assess how she breathes spontaneously in order to work anesthesia for her bronchoscopy. We were hoping they would be able to get deep into her bronchi to suction out some mucous and clear plugs if any, as well as assess the repair site. We didn't get quite the news we wanted- they were unable to get the scope with the suction past the repair site, but they did get a little bit of mucous suctioned out above it. They got in deeper with a smaller scope and feel that the repair is secure but not firm enough to be functional. The lower area is mostly collapsing on exhalation, which is why we see such an effort from her when she's breathing on her own. Her numbers are still pretty good, and she is actually able to clear her lungs of CO2, which is great. Unfortunately though, we're going to be sitting tight until another week goes by, then she'll be reassessed by bronchoscopy.

So for now, she's just sedated with the ventilator, and she moves quite a bit. She's squeezing fingers, moving legs, shifting her body and head, and chewing/working on the ET. She is able to try to cough, which is good to help mobilize debris and mucous hopefully up high enough to get it with the ET suction catheter, but it's so hard to watch. She has to be very carefully watched to make sure she doesn't move so much that she could shift the ET and dislodge it or cause damage to her airway with it. So far she's doing well with it, and we're encouraged that the body movement is going to help prevent a lot of other potential complications, and it does seem to be reducing some of her "puffiness." We have to be extra cautious at this point to watch for any secondary infection- being in the PICU as long as she will be is a big risk for infection. We're hoping to be able to remove her urinary catheter and the abdominal drain, and there has been some talk of putting in a pic line so that we can remove her external catheters and reduce risk of them getting infected as well. It's going to be a long hard week just sitting where we are without much change.

Monday morning update

Last night felt pretty stable until we found an area of phlebitis on the inside of her left leg. The doctor wasn't overly concerned about it since it was a very superficial vein, and treated it with warm compresses overnight. It looks better but not yet resolved this morning. She was mostly stable overnight with a few drops in her O2 saturation that respond relatively quickly to a few breaths on 100% oxygen. Her blood pressure has been good and I think they're still weaning her off the dopamine and milrinone. We had a visit from her cardiac surgeon this morning, he's a non-alarmist, reassuring type. It was good. Got a visit from the ped pulmonologist just now, and they're scheduled to do a bronchoscopy on her at 1:30. This will allow them to assess the healing and functionality of the patch as well as suction out any mucous or debris deeper in her lungs than the suction catheter in her ET can reach. Her main ICU doctor thinks this is going to make a big difference in her pulmonary function. Her cardiac surgeon says her heart is great and no longer any concern. She's waking up through the paralytic (testing 4/4 on the stim test) but not doing much moving. Just waiting waiting...

Sunday has been mostly uneventful so far, but of course there has to be something new to worry about every day. I was massaging her left arm to help reduce some swelling in her hand, and as I massaged up past her elbow, I mentioned to the nurse that she was getting some dry skin between her arm and her side. As I went up a little more, I felt something a little wet. I started to pull her arm out to see what I was feeling, and from the angle she was at, the nurse could identify a big moist sore in her armpit. No one has really seen anything like it before (great.) and no one has any idea why it happened there. The nurse cleaned it up and applied some bacitracin ointment, and I am just hoping and praying that it heals fast and doesn't have any consequences. Hopefully it is still superficial enough not to become infected, but it just looks awful.

So far haven't been able to wean down her dopamine, she's back up to where she was this morning. We checked her out really well over her hips and back for any other sores and we didn't see anything. We also took off a few monitors with big sticky transducers to allow her skin in those areas to breathe for a while. It's been a long week, and I don't want any more new issues!!!

Friday-Sat update

Friday night was mostly uneventful until about 3am when Emma Kate's O2 sat dropped. From there it was an ongoing roller coaster through Saturday afternoon. She also suddenly had a large amount of red blood accumulate in the remaining chest drain. The source of the blood is undetermined. Chest films showed no fluid accumulation and the lungs looked good. Many meds were bolused to try to help, and the ventilator was adjusted several times. We ended up paralyzing her again to keep the ventilator breathing for her entirely and keeping positive pressure in her lungs. Then we got word from the radiologist that he thought her ET tube was down at her carina and needed to be adjusted. This made sense because Greg kept suggesting that she had better numbers on her ventilation when her neck was extended back, which would slightly shift the tube up her trachea. They pulled the tube back about 1.5cm and retaped it. Dr. Kirse (the ENT) came in (he was off duty!) and scoped her through the ET tube and said that the very tip of the tube was toward the pig bronchus, which might explain some of the difficulties we had while she was not paralyzed. They again repositioned the tube, retaped it, and checked it again with the scope. After that, she was fairly stable through the rest of the evening, and we decided that we would just keep her at the same place (paralyzed and sedated) and let her go through Sunday like that. Monday we plan to have the bronchoscope done and will have much more information after that. So for now (Sunday morning) we're just holding steady.

The big scare

As many people know, we've had a very traumatic last few days. Here's a recap for everyone, including all the details.

Sunday afternoon, Mimi and PopPop were leaving to go back home after staying to help with Gretta. We had noticed that Emma Kate had a very slight runny nose- we had to wipe it maybe 2 or 3 times, and she seemed to be breathing louder than normal. Only a few hours after they left, Greg and I were starting to get really concerned. The previous ER visit left us with some steroids and an albuterol inhaler, so we gave her the steroid and some ibuprofen but she would NOT let us do the inhaler. She got really worked up about it. I tried putting her down for a nap while Greg went out to seek out a nebulizer for albuterol (we had just gotten a prescription for it but hadn't been able to get it yet). He came home and we attempted to use the nebulizer but there was no significant change, even a couple hours after giving all the meds. By about 5pm we were pretty freaked out by how hard she was having to work to breathe, and we headed for the ER again. We decided to head to Radford since it was 10 or 15 minutes closer. They got her in and monitored her O2 saturation (which tended to be surprisingly good). They gave her another albuterol treatment, but things were just not really changing. I was able to cuddle her and nurse her to sleep thank goodness, she breathed a lot easier asleep, but still significantly worse than normal, very noisy and lots of effort. I could feel her lungs rattle on every breath. The ER doc discussed the situation with us several times, and didn't have a real good explanation for what was going on. He reviewed the Xrays from the previous ER visit about 10 days prior in Roanoke, (that had been reported to us as NORMAL) and said that they had made notes about a "possible left aorta?" Remember this for later... Anyhow, we discussed transferring to Wake Forest by ambulance and since it was going to take a while to get the pediatric abmulance from Roanoke we decided to get on the road and take her ourselves. She hadn't gotten any worse in the last several hours, so they gave her a big steroid dose and an inhaled epinephrine treatment and saw us off. That was by far the most terrifying car ride I've ever had.

When we got in the car, Emma Kate was in good spirits and wanted to eat some O's and have her juice. I was amazed that she was inclined to eat and drink when her breathing was so bad, but she really didn't seem too overly stressed out by it. Shortly after we got on the road, she started getting upset because she wanted to go home. She worked herself up into a fit and was wanting up and out of the car, calling for mama, and struggling in her car seat. She was so worked up that she vomited all the food and juice she had taken in. We were able to settle her down soon after that and we kept on down the road. She slept for most of the rest of the trip (I think it was after 10:30 or 11pm by then, and the poor girl hadn't had a nap or dinner or anything.) She woke up once along the way and had another little fit and thank goodness she went back to sleep.

We got to Wake Forest around 1am and got right into the ER. They immediately did another epinephrine treatment on her and were monitoring her vitals. They took a series of Xrays and consulted with Dr. Kirse's associate who was on call that night. They went ahead and admitted her and decided that the plan was to scope her the following day. They put an IV in her hand so she could have IV fluids for the rest of the night since she couldn't eat or drink prior to the anesthesia. They got us into a regular room and hooked up all the monitors and machines and wires. Luckily she was EXHAUSTED and I got her off to sleep. She woke frequently over the next several hours and a couple times was upset by all the wires she was getting tangled in. By about 5:30 or so, she woke up and was extremely agitated, breathing worse than before, and was freaking out about all the wires on her. She was asking to nurse, but of course I couldn't let her. It was so hard. Finally the ENT doctors were coming through and they elected to get her in the OR first thing because of the worsening signs. We had to wait a little while for the OR to be ready, and we requested another epinephrine treatment to hold her over since she was having so much trouble. She settled down a little bit and we were rolled into the prep area. They gave her a sedative to make it easier for us to part ways, and she did really well. Can't say so much for Mommy and Daddy.

We went into the waiting area to hear news of what they were finding. It was a relatively fast procedure, and Dr. Kirse came out to show us his scoping images. Her larynx was completely normal and beautiful. Her trachea started out perfect. As he went down the trachea, he got to the point where he thought he was at the carina where the two mainstem bronchi branch off, and he could see that the trachea was compressed. He got to the point where he was unable to go any further becuase things were so very narrowed. He recommended we proceed with a cardiac ultrasound and possibly an angiogram. They concluded after these tests that she has an extremely rare congenital defect called a "pulmonary artery sling," as well as two more common and less worrisome defects called a bronchus suis (pig bronchus) and a bicuspid aortic valve (instead of tricuspid). Her pulmonary artery was grown in the wrong place and it was wrapped around the base of her trachea, causing a constriction down to about 1mm! What Dr. Kirse figured out was that his images of her trachea were misleading- what he thought was the carina was really where the pig bronchus branched off, and the severe narrowing was still in her trachea. The decision was made to take her to surgery and after a preliminary decision to do it on Tuesday, the cardiac surgeon decided he was not comfortable waiting another day on her, and decided to do it Monday afternoon.

The surgery took about 4 hours and she had to be on a bypass machine during the work. They cut her pulmonary artery and re-attached it where it should have been. The narrowing of the trachea was not quite as they thought it was, so they weren't able to repair it the way they initially intended. They had to cut open the trachea at the base and into the mainstem bronchi, and used a patch of pericardium to create a membranous protion of the trachea. They used suture material to keep the tracheal rings pried open. She came through surgery and was put in the PICU for management and monitoring. She got there around 9 or 10pm Monday night.

She has all sorts of drains, IV lines, tubes, and tape all over her. She is surrounded by monitors and machines. It's amazing, every time something is a concern, another drug or treatment is started to treat it. It's so hard to see our little girl lying there motionless with all this around her. We know it's what has to be, but it's traumatic for sure.

Monday night was tough, she had a lot of issues with her respiratory status and blood pressure being too low. She also spiked a fever in the high 104 range and was started on aggressive antibiotics. Chest X-rays were taken and showed some possible fluid or pneumonia developing in the right lung. Luckily by Tuesday morning the fever had started to respond and eventually got down to normal. She had to have ice packs under her and just felt so cold, even with a fever since her peripheral circulation was compromised. Several Xrays were ordered over a period of time to monitor her lungs.

Tuesday was a rough day with a lot of ups and downs on her parameters. She was taken off the paralytic because she was physiologically not tolerating it well, and it was hard to watch her breathing- it was very jerky compared to the smooth, easy breathing she had done right after surgery under the paralytic. She started to have some trouble with her pulmonary perfusion and they started her on inhaled nitrous oxide to dilate the pulmonary vessels to allow easier perfusion.

Wednesday morning she started to elevate her temperature again. It climbed to 103.3, with no indication of the source of an infection. They started her on tylenol and motrin to help bring it down. They also started allowing a little bit of expressed breast milk to be fed through a tube going into her small intestine. Unfortunately soon after this was started, they noted some abdominal distention and got worried that the milk was causing problems. They gave some laxatives to help move things through faster, but the distention was increasing enough to be very worrisome. The concern was that as the pressure built up it was putting more pressure on her chest cavity and was restricting her heart and lung function, since she had been having increased problems with her parameters. They took an xray to evaluate it and didn't see any free air. One of the surgeons made the call to evaluate her belly with U/S and it showed free fluid- they immediately put in a drain and over the course of about 36 hours they got over a liter of serum from her belly, and just after the drain was placed, her parameters were much improved. Also, her temperature reduced within the day. They had submitted several blood cultures and cultured the urine and belly fluid, but everything came back normal with no growth. It was a really tough day, and for a few hours before the belly issue came up, we were all in really good spirits and feeling good about everything. It was a real scare when the belly distention started and really knocked us all off our feet.

Wednesday night she was fairly stable, and her lungs were examined again with xrays (she's had so many xrays at this point I've totally lost track and can't remember how many or when they happened. The girl will glow when we leave the hospital I'm sure...). Things are pretty consistent on her xrays.

Thursday was a pretty good day, with good values on most all the monitors and no big scares. They started to decrease her NO inhalant which they have to do extremely slowly, and planned to decrease her dopamine as well. The night nurse worked hard overnight weaning these down and unfortunately around 3am her O2 saturation dropped and they ended up bringing her back up to where she was at the beginning of the night. Otherwise she did well.

Friday she has done well again and her blood values as well as monitor values were great. The only concerning reading was off of a machine that is very new technology and reflects the oxygen consumption by her brain and kidneys. The cerebral reading went to the low end for several stretches during the day. The significance of this reading is not well understood, and the doctor was doing some research with the manufacturer of the machine. The decision was also made to take her off the Nimbex (paralytic) and let her start moving a little bit, which should help with her GI motility and the swelling in her body, which is very notable... They took her off it and she actually was moving her arms and legs quite a bit and at one point she opened her eyes as well. They decided she was coming out a little too much and gave her some more sedation to keep her calm. They did have to paralyze her for a short time while they re-taped the endotracheal tube, to make sure she wouldn't move her head while it was un-taped. They were able to pull the drains in her right chest and her mediastinum this afternoon, and she is continuing to produce a significant amount of fluid from the drain in her abdomen. It had a little more fibrin in it today, so they decided to U/S her belly to make sure there wasn't anything there to be concerned about, and everything looked good. The plan overnight is to start some minimal volume enteral feedings again with some breast milk or possibly a complete nutrition drink, to keep the bacteria in her gut happy and prevent them from translocating across the gut, and to work to determine the best "cocktail" of sedation that keeps her sedate but not too sedate.

The nurses and doctors have been amazing so far, the amount of knowledge floating around in that hospital is just incredible. Everyone has gone out of their way to make us comfortable and answer any questions we might have. At this point we've got Mimi and Nana still here and we're staying at the Ronald McDonald House (which by the way is incredible) while Greg stays the night in Emma's room. During the day we've been in a tiny little room near the PICU that has a twin bed in it, which allows us to have a place to keep Gretta sort of isolated, as well as a private place to nurse and pump milk for storage.

So.... that's it so far. We're optimistic that things will continue to be stable and she can come off of more and more meds and have less tubes in her over the next few days, and it sounds like the game plan at this point is likely to be waiting until the middle or end of next week to extubate her, so we'll see what happens.

Thanks to everyone for their thoughts, prayers, and support. This has been by far the most difficult and traumatic thing we've had to go through. We'll keep updating the blog and facebook on a daily basis now that we're all caught up.