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September 27 Stayin home!She looks fabulous--working hard to breath, but happy to do it and her saturations are much better. We'll keep up with the meds and breathing treatments and she'll keep up with being a superstar.
I will hopefully have NOTHING else to report this week!!
J September 26 I spoke too soon...Just have a minute but need to ask once again to please start the thoughts coming...shortly after AJ woke up this morning, she vomitted. As if that wasn't concerning enough, she immediately seemed to be in respiratory distress (as in both Nate and I were back in forth if EMS needed to be called) and took about 30 minutes to calm her breathing down. I was sure she had aspirated. Of course after the crisis, we went to her doc and sure enough, after dodging a hospital stay again (she didn't sat above 93 but did calm down enough to convince her doc she could go home), an x-ray confirmed aspiration pneumonia. UGH!!!!!!! My poor pumpkin! She gets to stay out of hospital as long as she can stay out of distress and her sats don't drop much more. I have to go back to the ped first thing tomorrow am. Think deep, clear, breathing thoughts. First and foremost I want Audrey to feel better, but secondly, I want her to recover at home, not in the hospital. Hopefully I'll update tomorrow with that exact news! Love, Jenn PS yes, she did vomit all over our bed this morning and no the laundry from that still isn't done; couldn't make this up if I tried!!! September 25 All's Quiet on the Puking Front
Let the laughter continue though... I'm SO over cleaning bodily fluids; coupled with Saturday's puke and (did I mention Audrey's blow out on Saturday on the carpet too?), today's THREE more instances have put me over the top! 1. Audrey had the biggest "blow out" EVER all over me, seriously their was more poopoo on my jeans and sweatshirt than in her diaper; I just never get how that happens! (OK, I know it's the diaper, but how it goes up the back with such force, good grief--incidentally and sadly though I think part of problem is her weight loss has made her #2 diapers a bit big, poor peanut!) Anyway, Her speech therapist was here at the time (who is 8 months prego with her first) and was just acknowledging how the craziness of our house (both Jason and Phoebe were being EVER so helpful with Audrey's therapy) probably doesn't help AJ's feeding when this happened. Then Jason gets a tissue to help clean my jeans cause he's so stressed out that "Audrey poop Mommy, Audrey poop, look, look" we almost peed ourselves at the comedy of it all. I think we've cured her of any need to have more than the child she's carrying! 2. Ethan has the worst nose bleed ever in his bed this evening and drips (blobs is more like it) not only over EVERY bit of his bedding, but all over the carpet leaving a trail to me. 3. The straw that broke the camel's back...Jason steps in a Phoebe bomb and brings it in on the carpet! I swear I'm never getting the carpets cleaned again!! Suz, you're right, it does sound made up!! Now on to better news...Ethan recovered by around 8pm Saturday night. Apparently it wasn't even a 24hr bug. He was weak on Sunday, but better. We decided to get everyone some Vitamin D by escaping the confines of our VERY scary house for the great outdoors. The Dallas Arboretum was gorgeous Sunday morning and everyone did great. With the length of the drive we did have to do a breathing treatment out and about for Audrey but she did fine with it (using the spacer instead of the nebulizer) and it felt good to not be housebound after the nightmare of Saturday. I'm hoping the ourdoors isn't why ended up back at the doc this morning for missy miss though as her wheezing worsened. I really don't think so though and already tonight she is WAY better with the new drugs--we are on another round of oral steriods and stronger inhaled ones for a few days, but I'm confident she'll get over this now. Little pumpkin was retracting (working VERY hard to breath) between treatments last night and this morning yet was not at all distressed (why I wasn't too worried) and when put on the pulse oximeter, she sated (drumroll please) 96! After her treatment, she was 99. VERY impressive for a girl with chronic lung disease. I'll continue round-the-clock treatments tonight but can hopefully back off some by tomorrow night. Her ears looked completely cleared up already too AND she gained 5 oz since Thursday (I wish it was without the tube, but we're going to get her nice and strong and plump before we attack that thing again). She really is a superstar. Now if she'd just figure this eating thing out! Thanks to everyone who wrote with encouragement after my previous post; I appreciate it. I haven't had time to get to email replies but do read them (Audrey being back on the pump puts me back on the pump more too and there's nothing better than reading email and comments while on the breast pump--you're welcome for the visual!! ;-) Off to give AJ a treatment, enjoy the new pics! Love, Jenn PS 2 quick boy stories---Ethan is on the brink of losing his first tooth and as if that wasn't a slap in the your-kid's-getting-too-big face, him telling me today, "oh, my bad" like he's some teenager or something, definately was. And, Jason put his tooth through his chin on Friday (this is the second time in his short life to do this--MO, remember the first?) without much ado at all--that kid is made of metal or something! September 23 You just have to laugh...We can't buy a break. Let me start with the reason I have time to post right now...
Audrey and I are quairantined (sp?) away from Ethan who is finally sleeping after an entire day so far of vomitting. I'm not exaggerating, the kid has been puking since 8:30 this morning; we've finally gotten where he's keeping water in him long enough in between pukes that I'm confident he's not dehydrating, but around noon I was worried he was headed in for IV fluids. We (Audrey, Jason and I) almost fled to the Crowes to keep AJ isolated, but Ethan's pleas for mommy to take care of him and Audrey's well-timed naps have kept us here. Of course I'm changing my shirt and scrubbing my hands between kids too, so cross your fingers we can escape cross contamination!
Now, Miss Audrey's latest...we had her first "well check", NOT! She came home with double ear infections, the threat of "if you need to continue giving her breathing treatments so close together, you're going in the hospital", AND some strong concerns with her neck and leg muscles. Not to mention we still did her FOUR vaccinations since she was already 3 weeks overdue and one covers a type of pneumonia. UGH is all I'm sayin. I knew something was up though as her congestion was so bad, she had lessened her feeds, and she had developed a new cry the day before-- I just never thought of something as normal as ear infections, DUH! Her neck issue may be a torticollis ("twisted neck", basically her neck muscles shortening) but we're hoping therapy will correct it and any plagiocephaly (misshapen head) that is starting as well.
I haven't even addressed her weight/eating issues; I'll just summarized with her tube is back in with little hope of coming back out any time in the near future. Also, finally (missed it due to hospital stays) had our private therapy evaluation yesterday too (we've been using ECI)--they agree about her neck and legs and see little hope of getting her to take a bottle. They recommend therapy 2x/week for both speech and OT (that means 4 more appts for us to make it to). I couldn't make this stuff up if I tried!
I realize this all sounds a bit Debbie Downerish, but life at our house really isn't too fun-filled lately. We do manage to laugh at all though and the rewards of Audrey's smiles, Jason's laughter, and Ethan's sweetisms (insightful sweet things he comes up with) do make it all worth it.
Now, off to keep up with the puke laundry, carpet cleaning, and sanitizing (Ethan has made the bucket or toliet about 2 of his 15 pukes)--did I mention that we had the carpets professionally cleaned on Thursday? Like I said, I couldn't make this stuff up!
Jenn September 20 Aw man...y'all are the best! I've had a tough few days tryin to hang on to my sanity and the only reason I have a little bit left is due to the love and support of the amazing people in my life. I'm getting a meal tomorrow from across the country for pete's sake!! Jessica (Parker's mommy) asked to Marcelle (friend in town) to help her help me out with a meal this week, how nice is that?! My friend Sharon took a snack up to Ethan's school for me today just so I wouldn't have to make another trip. Stacy listened once again as I vented my laundry list of hardships (she was so kind in her last comment to not front me out on just how much I do complain--poor girl hears it daily). You have no idea how much your comments and emails mean to me as well---just about everytime I feel like I'm ready to throw in the towel (although I'm not even sure how I would do such a thing, it's nice to dream sometimes though ;-) I just need to read some comments on the blog or get an email like the one I got yesterday (thanks Kari!) and I can find another drop of energy somewhere.
Quick update on peanut...she's fallen off her growth curves and is now in the 10th percentile for weight and 25th for height (weight was the big drop); but she's working hard to regain. She has a head cold with LOTS of congestion but so far is keeping it out of her lungs (we're doing breathing treatments pretty often). I've had her tube out for 24 hrs to try to help relieve some of her congestion and so far, she's eating like a champ. She lost a little but we decided to give her 36 - 48 hrs to see what she can do before we put it back in. It's SO hard balancing her need for weight gain with stimulating oral feeds on top of therapy to combat her missing developmental milestones and worrying about how many calories she expends just to breath--put all of that with trying to take care of the boys at the same time and you can see where my sanity gets a little lost sometimes. She had a really great day today though and hopefully we'll continue on this path, we just need to get rid of this cold or whatever it is so we can focus on everything else!
I've wanted to share some more about her hospital stay but will probably never find the time so 2 quick highlights--
1. when we were leaving Plano Presby with the transport team, they forgot about the security monitor on AJ's leg and when they took her in the elevator the whole hospital went into lockdown.
2. Jaxtyn Smith (CDH survivor, see links) was a few doors down from us "on the floor" --what are the chances??!
Thanks again for your continued interest in our sweet girl; the therapy this blog gives me has been immeasurable and the support we've been given is priceless!
Love,
Jenn
September 15 Ahhhhhhhhhhh!SO great to be home! Granted a week and a half isn't much compared to the 8 and a half we did earlier this year, but this one was a totally different type of tough and I'm glad it's over. I have lots to share but probably not enough time right now (the littles are asleep but who knows for how long and my dad high-tailed it out of here to miss traffic--why he didn't want to stay through the weekend I'll just never know--it's not crazy around here or anything!!!). I put up some pics although the only real current ones are from last Friday's exciting transport--I'll share that story if I have time. We didnt' take any other pics of Audrey's stay and the only reason we have the transport ones are because Erin and Nicole were with us for that (Erin was one of Audrey's primary nurses in the NICU and Nicole is her roommate; Nicole is a nurse at Children's and checked in on the Crowes when they were there, what a network we have!!).
At the time I couldn't imagine taking pictures as she looked SO awful post op, but now I wish we had the documentation. The images will never leave my head though. It still tightens my stomach to think of her after surgery, it was beyond gut wrenching. I told Stacy when they were going through everything with Allison that I thought their situation was tougher because they had already had a perfect baby whom they had to see sick. I know that's true now. Seeing Audrey look like a larger version of her sickest NICU days was almost harder than the times we were told she may not make it through the night. When we were going through that we didn't know any different, this time we did and the heartbreak of that was overwhelming. This stay also netted me an answer to a question I get asked often, "how do you do all this?". Simply, I just do because I have to and more so, because it's a pleasure that I get to. It sucks a lot and often, but I get to and for that, I'm eternally grateful.
I'll share more later,
Jenn Jiggity JigJenn and Audrey are on the way home. Woohoo!!
Cheers to a wonderful weekend at home with all the family!!
Stacy
September 13 On "the Floor"We were moved late Monday night to general pediatrics. Although she probably had more lines and tubes than most kids on the floor, she's done just fine and is finally pooping. Pooping never comes without pain, however, and that is still hard to stomach. I've just escaped actually to the PICU lounge to write this because they are changing her central line dressing and it's just too much after a long day to witness (I'm letting Nate have the honors).
She's got to relearn to eat in order to get home but I'm optimistic she'll figure it out quick. I'm shooting for Friday but the docs aren't even going there. She had a pretty good first attempt today and is tolerating NG feeds since late last night. Send her positive eating vibes!
I've got to get back but wanted to get a quick update out--55K hits is just around the corner, your interest and support overwhelms me! Thank you from the bottom of my heart.
Jen W, got your package, LOVE it; your work is breath taking! Sharon, Marcelle, Natalie, Caprice, and Stacy-- thanks for the meals; y'all ROCK! Trisa and Sharon-- thanks for all your help with the boys, I SO appreciate it! Kristina, Erin, and Nicole--thanks for the awesome hospital goodies!
I'll write when I can (ie who knows when!)
Love,
Jenn September 10 Keep 'em comingIt's working! None of her medical status has really changed, she even needed more blood last night and a new antibiotic this morning because her incision looks bad, but something about her is different. She just looks a little better. I held her for a long time and she's trying real hard to figure out how to work her paci; both seem to help. I think y'all's power is working its magic too. She's sleeping pretty comfortably right now. I'll try to update again later if anything changes. The surgeon this morning said he wouldn't be surprised if she took until Monday night/Tuesday morning to start to improve (ie bowels moving, breathing less labored). I'll take that as long as she can stay comfortable. We're trying to stop using morphine today as it depresses the bowels, so far so good. Ativan and Tylenol are doing the trick, pray they continue to.
Forever grateful,
Jenn Help PleaseAudrey's having a tough go of it. She needed blood yesterday (thanks to those of you who donate, what a gift you give the world) and extra fluids and still didn't get the boost the docs thought that would give. Her belly is more distended than it was before surgery and while some swelling and gas build up is normal, hers is a little over the top and not resolving. She's VERY uncomfortable, although does have spurts of semi-awakeness that she doesn't seem too bad. Her longest one was yesterday when one of her favorite NICU nurses came and hang out with her. Another is coming this morning so lets hope that helps again. Thanks ladies, we love you!
She's still hanging tough on the canula but if she continues to have to work so hard the docs are afraid she's going to tire out and need to be reintubated.
All I can say right now is this sucks. Sorry if that word is offensive but that is about all that covers it. My girl is miserable and coming home yesterday (Nate and I switched out so I could see the boys and sleep a bit) and not having her here coupled with the toture of seeing her in so much pain all day is just about more than my heart can take.
I'm off now to get back up there. Please start your thoughts coming-- she needs her bowels to start working again, breathing to be less labored, and her pain to subside.
Love,
Jenn September 08 Extubated, still on canulaHi guys,
Took a minute to eat a balance bar and found a computer in the lounge...I think sharing the hardest thing I've ever had to endure made the pain less burdonsome, so I'll try again for this go round. She's hanging tough; it took an hour or so before they could extubate, but she did it. She's having a little bit of a rough time adjusting though so we're keeping her on the canula through the night. She has a central line so can't be held and seeing her like this is a little more overwhelming than I expected, but I keep telling myself one of her NICU doc's quotes "judge me not where I am, but from whence I came"; Sharon's right, this is small potatoes for just a superstar! It's still kicking me in stomach to see though. The optimistic goal is to have her out of the PICU by Sunday and on to the Ped floor.
Thanks for your thoughts, prayers, and energy, she needs 'em and we need 'em to stay strong for her. Sharon, thanks for taking the boys without a second hesitation, you are the best! Erin and Nicole, you ROCK, thanks for helping out and sharing our exciting transport!
Forever grateful,
Jenn She's out of surgeryAudrey was transported to a different hospital and is now out of surgery. The surgery went well!! Resection was not required. The adhesions causing the obstruction were removed and her appendix was taken out. Jenn feels good about how Audrey is doing, but she is on a vent. Not a fun way to see Miss Audrey as that was a part of the distant past. The surgeon hopes for extubation tonight so she shouldn't be on a vent long. They are trying to get her to wake up now to see how she breathes on low vent settings. What do we need...happy breathing thoughts and prayers!! Come on Superstar Audrey, show your stuff!!
Many Blessings and prayers going Audrey's way!
Stacy SurgeryAudrey is having surgery due to a partial bowel obstruction. I'll update when I know more. Bring on the magic, just like last time. Let's get our Superstar back home. Shine Bright Superstar!!
Stacy September 07 Update on AudreyI'm sorry. I thought all along that I had updated after my talk with Jenn this morning and just realized that I never did. From my report this morning, things are about the same. From a respitory perspective, Audrey is doing great. It's the viral infection that has kicked her in the pants. The tests have shown that her bowels are not obstructed. Good news!! She is still having trouble keeping food down, but is getting hydrated through an IV. The biggest problem for Audrey is that she cannot settle. Her longest period of sleep has been 30 minutes since about Tuesday. Ughh!! I haven't heard from Jenn since this morning and am afraid to call just in case they may be sleeping.
Please pray for comfort and sleep!!
Stacy September 06 Audrey is in the HospitalThe problem is viral, not respitory related. Jenn and Audrey and the rest of the Miller family need all the prayers and positive energy you can muster. Let's get Audrey back home!
More later,
Stacy September 02 So far, so good!Ethan has been one super patient and tonight even milked it a bit to stay up later! His doc said (when he called to check on him--just LOVE Dr. Mehendale!) to not be surprised if tomorrow is a bit more rough though. I'm so bummed that we didn't bring the camera or video camera to the hospital. He was hilarious all doped up before they took him back---not that you'd ever want to see a 5 year old drunk, but I think we got a glimpse at what it would look like if you did! He woke up real well too, not crying or freaking out like I expected. He was very impressed that he had a tube like Audrey had had (the IV--I didn't tell him about the breathing one) and showed his hand off to Aunt Stacy where it was when she came to visit. He was showered with the best gifts today, thanks everyone! Suzi, your pkg made it--greatness! Stacy brought a yummy dinner with cookies that almost didn't even make it to dessert--don't ever get Celebrity Bakery chocolate chip cookies if you want to have any semblence of self-control, they are to die for!
Audrey is still sounding rough, but looks amazingly well and is eating/sleeping just fine. Today she coughed more too so I feel like it's getting out. Around the clock breathing treatments continue, let's hope they do the trick.
Thanks again everyone for helping the Miller clan through something else! Nate said today he couldn't believe he was writing his client to say his kiddo was having surgery just one week after writing them that his other kiddo was in the hospital--it has been a ride! We both passed out before ten trying to watch a movie and my mom convinced us to go to bed. We had to set the alarm to get up for E's and AJ's meds which is why I'm here now. Better get back to bed though as the 4am round will be here soon.
Talk soon,
Jenn September 01 Whew!I spoke too soon...Audrey's banner week almost ended in the hospital. She's doing so well though that even her first CHEST cold isn't keeping her down. Nate, Ethan, and I all started sinus infection symptoms AGAIN this week, but both the boys progressed to their chests and this time Audrey hasn't escaped it. She started some small coughs Tuesday but Wed morning it was full on wheezing. I was pretty cool cat about it since she still looked good and wasn't in distress and her xoponex spacer seemed to help but we were at the doctor as early as we could nonetheless. Her doc looked pretty "you're headed to the hospital" when she first heard her, but said she looks so good that lets just see what a nebulizer treatment does (we do the spacer to avoid creating more oral aversion). Well, Superstar was sating (are you ready???) 96!!!!!!!!!!! Seriously, we NEVER (well, hardly ever) sat above 94ish) and here she sat wheezing on the left side and still sat 96 while breastfeeding. After the treatment she sat 95 (she always sats higher while eating) but coughed a ton of stuff out. We got to go home with oral steroids and around-the-clock breathing treatments with strict instructions about when to head to the hospital if she deteriorates at all. So far, so good! She sounds pretty bad when she coughs but really considering her situation, I'm over the moon at how she's handling it. She's still eating pretty well too considering. The treatments aren't so fun for her though and I see now why the pulmonologist put her on a spacer instead of nebulizer but she's doing ok and when she's asleep, they are no problem at all. Please send her healthy thoughts to get through this without a hospital stay. Her GI appt went well too, for the first time Dr. An actually said he thinks we may escape the G-tube afterall! I hope writing that doesn't jinx it and more so that this cold doesn't put her back to far.
All of this(being SO busy with treatments and running around to docs and the pharmacy) has definately helped quell my anxiety about E's adenoid surgery later today, but I'm still a small bundle of nerves about it too. He's such a trooper though, excited about the recovery part (movies, games, soft foods, etc) but a little nervous too. He's going to be intubated (which completely freaks me out) because they are going to scope his sinuses and suction them out as well as remove the adenoids. That means a mask won't be sufficient. They'll pull the tube even before he's awake though so hopefully it won't be a big deal. He's scheduled for 11ish. If all is well and not too crazy around here after, I'll post tonight. Thanks for all the emails on his behalf, I appreciate it.
Think healthy and easy surgery thoughts!
Love,
Jenn
PS Allison's procedure yesterday went swimmingly, everything looks GREAT; she's a true MEGA Baby!! Happy Birthday to her daddy today! |
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