Monday, June 30

What do I do- UPDATED

now that Emma has decided that she's going to be mad and although she's leaving the O2 nasal cannula alone, she's also refusing to breathe through her nose? Her sats are under 87 unless she'll keep the bib in her mouth (she'll chew on it) but even then she's still breathing mostly through her mouth... I don't have a mask. Cutting off the prongs didn't work. Hmm.... Any thoughts?
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I wondered whether the cannula was actually RESTRICTING her breathing... so I took out the pediatric nasal cannula and put in the infant one. The ONLY infant one that I have left because she ATE the other. So I didn't want to use it until I knew that I could get her to keep it on. Anyway, I tried switching, hopefully it'll do the trick!

Yellow

I just was looking back at the recent posts to do the Q&A post... and I couldn't help but notice in the pictures with all 4 kids sleeping just how PALE and YELLOW Emma looks compared to the others. The rooms were all dark with just the flash, so it's not different lighting. I can't wait to see what she looks like with pink cheeks!

Q&A (yep, again)

I find it much easier to answer questions here every few days, so just bear with me if you don't like Q&A posts. After all... you don't have to read them :D

Have you tried the sprays that deaden the pain. (May taste so bad she wouldn't like it) BUt my son wants the chloraseptic type sprays when his throat hurts. Good luck -Jan (yes, me again)
I haven't tried these, but she seems to be picking up on eating a bit so I'm hopeful we've passed the roughest part now!

We go to the pulmonologist on Tues so I can send you our extras if we get the go ahead!
-Cammie
Thanks Cammie! I hope all goes well for Addy so you don't have to mess with it anymore!

Perhaps the socks on the feet and hands will help. Those darn pulse/ox straps don't make a good connection half the time anyway. You almost need a new strap every night.Good luck -Jan
I have been putting socks on her hands and foot (the one with the pulse ox) and I do think it is helping! Granted just a few nights and she can now take them off quickly, but who knows! We've already had one strap for the pulse-ox go bad (won't read anymore) and we've only been home for 4 nights... I hope the next one lasts longer! We are leaving it on when we can either for the morning or the afternoon since it bothers her more to take it off/put it on than to just leave it on.

Thinking about you and your sweetheart- hoping Friday night was an easier night for miss Emma. -Cathy
Friday night... that seems so long ago! LOL

Have you tried putting the cannula/tubing on backwards? -Anonymous
No, haven't tried that, but I think we found a solution! The tape left a sticky residue on the tubing and it just sticks to her face :) NO RASH! LOL

Dom wouldn't leave his alone one hospital stay either and we ended up doing 'blow by' o2 for him and keeping his sats ok for him- he typically runs between 96-98 healthy, and when sick, 94-96. it was enough to keep his sats high enough- i can't remember Emma's range of normal right now....do you think that would work? -Cathy
Emma's "normal" when she's awake is around 94-97. Her "normal" when she's asleep, I guess, is in the upper 80's. Weird. Anyway, we're aiming at upper 90's asleep or awake. Hoping this will give her lungs a bit of a rest before her open heart. I think the cannula is working, but blow-by is another idea, thanks!

Ok, what about "No-No's". They're what kids wear after they've had facial surgeries so they don't mess with their wounds. It's a splint that you put on their arms so they can't bend their arms to their face. They're easy to take on-off. They're not the most pleasant thing, but at least she couldn't mess with the tubing! My friend's daughter had many surgeries to repair a cleft lip/palate, and she always had these on for several weeks after surgery, even while awake and running around. -Leah
No, we don't want to go that far. I think with everything she's got going on that that might just be her undoing.

I'd ask - does she absolutely need it? My son would always pull it out, and in retrospect I can see that he DIDN'T need it. -Annie
Unfortunately, until her surgery (at least) yes, she really needs it. Her sats being so low will make the heart and lungs work even harder. Which she likely has been experiencing her entire life- or at least recent years- but doing the O2 will help give her body a bit of a rest before her big operation.

I don't have a whole lot of experience with O2 and kids, but I know a lot of older adults who don't breathe in/out through their nose, and so they put the tube in their mouth so that they're actually getting the Oxygen. Any chance that's what she's doing? Good luck! -Erin & Scott
I'd love if Emma "got it" enough to do that, but unfortunately she just doesn't want it by her nose. And, she likes to chew, so that works to her advantage too :)

If you move Emma's crib to the guest room, can you put the O2 tank in the guest bathroom, then it would out of the way and the heat would be just in the bathroom. I have an extra tower fan if you need to use it in the guest room.(You would have a nicer bed to sleep in also.) -Mom C
Unfortunately, I think the 'nicer bed' would have to go for the crib to fit in there. I think we found our solution for now with the compressor in the family room. I really like having the girls together. Thanks for offering the fan!

How long is the tubing from the compressor? When my father was on oxygen his tubing was so long he could go anywhere in his apartment with the tubing. We left the compressor in the living room and he walked around with the tubing. Ask and try a longer tubing. -Robyn
Thanks, we added the extension and have it in the family room for now. The tubing makes it to the bedroom and the guest room (she naps in a playpen in there) so it seems to work for now.

Also, check to make sure the oxygen is not drying her little nose out too much, that is really uncomfortable. -Anonymous
We have a little device hooked on to the compressor that hydrates the air. It's like a little mini humidifier so her nose won't get raw.

Maybe try to put two O2 tubings on her. One in her nose, and the other, one that she has already ruined, in her mouth to chew on. Maybe it will confuse her enough to allow the nasal one stay. Just a thought.If she keeps dropping, they may want to consider a mask. Or, one thing you may want to consider, short term, is asking for nursing care at night so you can sleep. - Mary
Interesting idea with the two tubes. I think she'd enjoy chewing on both if that's what got it out of her nose though! I don't know about nursing care- As soon as Emma decides that the O2's not such a big deal I think things will be nice and calm again :)

Man, that sounds like such a fun night-NOT! I hope you're sleeping in a bit this morning to make up for your middle of the night adventure. -Cathy
Ah... if only... :)

That just doesn't sound right. She isn't doing it anymore right? That is so scary. I would of been on the phone to 911. -Gayla
Yeah, I guess this happens occasionally. One 45 minute bleed and she was done. Seems much better today too so I guess that's a good thing!

Wow, Micah has made AMAZING progress since he has been home! When you get a chance, you should post a video of Micah crawling. :) - Annie
I'm trying! I posted a quick one, but he just is beginning to use it so it's hard to catch. I'll keep working on that tho :)

I'm sorry we didn't get to meet up this week(though it seems that you were definately a little busy for visitors). -Christina
Yes, unfortunately a crazy week. Can't wait to see you in a few weeks tho!

Does M (or did B) scoot on their bottoms by bouncing? -April
Yes! Brianna scoots on her bottom still to get around. Not exactly bouncing, but she uses her hands (my little gorilla!) She is QUICK too!

Aww, so peaceful! (sleeping pics) How long does that last? :) -Bethany
ALL NIGHT LONG if we're lucky :)

Is Emma sleeping much quieter now? -Anonymous fun! She's not snoring as loud! And I don't know why the formatting changed... weird

Love the glasses! Welcome to the club. :o) They're right when they say consistency at the beginning makes ALL the difference. But I'm not saying it's fun! -RK
Thanks for the tip! I will try!!

That ball was my son Tommy's favorite too! We saw your name on the Multiples with Ds board and glad that you found that group. Our twins are 18 mos old, Tommy has Ds and Liam is typical. We really enjoy your webpage. You are so good with your updates! -Tommy's mommy
I read on that boad but rarely reply. Micah LOVES the ball! I read your blog too ;)

I'm curious: How did they determine the prescriptions for Emma and Micha's glasses? -Sharon
At the opthalmologist they dilated both kids' eyes then looked inside. Whatever is supposed to line up didn't, and the Dr. held up different lenses while looking into the eye until he got the one that corrected the alignment best. Pretty neat, isn't it?

What are their prescriptions? -Bethany
Emma is nearsighted but just a little- weird because she acts like she can't see anything and when we put them on her she was SO interested in looking around! She also has congenital horizontal nystagmus and strabismus. Micah is far sighted and has astigmatism. And if you meant the ACTUAL scripts, Emma's says -1.5 sphere X for OD and OS. Micah's says OD: +1.00 +1.75 x90 and OS: +2.50 +1.75 X 105. NO IDEA what those mean :) LOL

And... Miss Sweetheart, Emma

And her NEW GLASSES TOO!  (yes, she was sleeping earlier!)

 

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Plus, her best friend in the world :)

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Introducing, Mr. Micah

and his NEW GLASSES!

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Let's not leave out this other great new trick (that I finally caught on film :) )

He really does get both knees going, I'll have to try again to get a better video :)

 

Sleeping Beauties

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Lil' Miss Kennedy

Lil Miss Kennedy is a spunky little 4 yr old girl that's had more than her fair share dished out in her lifetime. She is blessed, though, because she has a wonderful Mommy, Daddy, and Grandma that love her very much! She also has three adorable siblings that wouldn't trade her for anything. I first "met" Renee and Kennedy almost 2 years ago through a Down syndrome online support group. Since then I count her as a friend. Renee has a great outlook on life and is so supportive of every one of Kennedy's needs and cares for all four of her children with grace and ease (or so it looks ;) ).

So... what is it that Kennedy has? Well, you guessed Down syndrome, but the other two major things affecting her right now are that she is just now ONE YEAR post-diagnosis with AML (Leukemia). She spent many months undergoing chemotherapy and is now CANCER FREE! That would be 'in the past' now, but we all know that cancer is a scary thing that sometimes raises its nasty head multiple times. The other major issue right now is why I'm writing this to you all. Kennedy has a combination of conditions called AAI and AOI which means that the vertebrae at the base of the head/neck have too much space in between them and they cause her to have instability in that area. Basically, a fall, a minor car accident, or any other jarring of her neck could cause her to be paralyzed.

Her mother, 1 yr old brother, and her older brother and sister along with Grandma and Dad (who by the way just came home from Afghanistan for this surgery) all arrived in Philadelphia so that Kennedy can have her spine fused through a major surgery. Yes, big enough for the Army to fly her dad home.

Kennedy's surgery is THIS WEDNESDAY! Please pray for Kennedy and her family as they go through this scary time and for the upcoming weeks and months that their dynamic will be changed. They will stay in Philly for FOUR WEEKS with 7 people living out of a hotel room and then will return home- and Dad will return to Afghanistan. Kennedy has been in a neck immobilizing brace for several weeks already and will be in a Halo for 6 months after her surgery.

PLEASE PRAY!! Below is a button- it's also on my blog sidebar so you can find it easily later- and if you click it you'll go to Renee's blog where she promises to update frequently :) THANK YOU for praying for this beautiful little girl and her family!

Sunday, June 29

Micah and Brianna

They're together on one video because I'm too lazy to separate them (or is it tired?). But here's Micah's previous way of getting around- taken on Friday- and Brianna with her new wheels on her walker. I'll try to catch some video of Micah's new crawling skills this week!

Catching up, pic's from the week

Emma finally drank!  These are from Thursday morning.  My lovely chair/bed and Emma's hospital crib.

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After coming home, K and Bria had a snack in the playroom while watching a movie

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Hiding from Mommy-- Don't take my picture!

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These envelopes... They were ALL filled with hospital bills from Micah and Emma's congruent hospital stays in April.  What a joy to come home to!

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While I was gone my mom watched the kids one morning and after using the restroom (yes, mommies do that too, and even Grandmothers!) she couldn't get back out!  The doorknob has been giving us trouble the past few weeks and apparently that was its undoing!  She couldn't get out!  Luckily that bathroom also opens to the pool deck and Mike had left the front door unlocked... so she got back in through the front door and the kids were all still asleep this entire time.  So... there's Mike installing a new doorknob :)

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Here's what Emma's hand looked like right after coming home.  Notice that the hospital band now left its own little mark too :(

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Clean and smiling... but only the GIRL... THE ROOM WAS A MESS! LOL

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K playing on his top bunk and Emma all hooked up last night.  Notice the socks on the hands and on one foot to keep the pulse-ox on. 

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I also taped a long piece of it with paper tape to keep it in place.  Unfortunately, this morning we discovered that Emma's face is much more sensitive to tape than her hands are... There's a little area where she has an actual scrape looking thing on her face and then the inevitable red rash from the tape too.  She DID, however, keep in the oxygen all night!!  She slept through everything, actually.  It was Brianna and Kristopher that took their turns waking up.  And it's not Emma's fault that Mommy doesn't know how to turn on a light switch to make the outlet work!

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Tonight I made a no-bake dessert that has a chocolate crust, peanut butter middle, and a chocolate topping.  YUM.  I'd bought it to make for Mike's birthday, but considering the circumstances, didn't make it until today.  We also had a picnic ham and steamed broccoli, and of course applesauce to top it all off :)  YUMMY! 037

Updates all around

Ok, so, the update on Emma has been a running thread, so here's what's up with the rest of the family!!

Michael is doing well, he had an ok birthday although I hope he and I will get an evening away once Emma is ready to be left for a few hours so we can have some time-alone. He's in the middle of another Master's course right now and will finish it in mid-August. At the moment the plan is for him to take off that next 8-week class that will begin the Monday after Emma's open heart so that he can concentrate more on work and home for that 2 months. God's timing is perfect, so we're just praying to be sure that's what he needs to do.

I am doing well. Though I don't talk of it often, I've made it back up to my target-weight and am happy to be here. I have the opposite issue that some have and when I lose weight it's sometimes hard for me to gain it back. Although... if I begin to gain unhealthy weight I can put it on just like everyone else! Being at a healthier weight helps me to feel better and have more energy too, and I'm glad to have gained back a majority of what I lost in Ukraine. Yes, it took me 4 months and a hospitalization for Emma. Next hospital stay I'll likely gain more than I want to :)

Kristopher is awesome, that's all I need to say. This morning he went and got dressed as he was asked and told us calmly where the spots of blood were in both the family room and the kitchen. He'll be well prepared for emergency management if he keeps his cool that well as he gets older. Momma and Daddy are pretty good about it too, so he doesn't usually feel the need to freak out. He's just an awesome kid with a heart of gold. Yesterday we were all sitting at the kitchen table in the afternoon and Mike got up leaving his computer out. K was watching the video he had going and then said "why'd it stop?" Mike said "well, you must have touched something. Did you?" K's response? "well.... I MAY have..." LOL He cracks me up. Then when asked what he touched he pointed it out. "This one, and this one..." "And did you press THIS?" "Oh, yes, that one too." LOL Anyway, he's doing great. Kristopher will start K-4 in early-mid August at Park Avenue and I know he'll LOVE going.

Brianna is getting so good with walking! We got her wheels for her walker (back wheels) and she immediately went over to it, stood up, turned around, and walked across the room! She can almost get to a stand without leaning on anything or holding on. She crouches forward and sticks that bottom up in the air. She's SO CLOSE to doing it without anything! She also is doing great walking with just one finger out to her and she loves her walker. Brianna's getting so independent and confident in her movement that when she gets that extra little bit of confidence she needs to go forward she'll be OFF AND RUNNING! Oh, and a bit of balance wouldn't hurt :) She's using more words, copying more, and signing up a storm too. She's especially amazing at giving hugs and kisses. She loves to hug and kiss all of us- Micah and Emma the most of all!

Micah is getting around well too! He's officially CRAWLING! Not too quick yet, but he's doing it, down in 4-pt and so well! He also is getting up onto his hands and FEET and staying that way for short periods of time. It's amazing to see how much he's changed in not quite 4 months! Micah is just as kissy and huggy as Brianna and when he sees someone he knows he starts blowing kisses across the room :) He's partial to Brianna's hugs and kisses tho! Micah has porked up and we're now making sure he doesn't eat TOO much. An unfortunate side-effect of being hungry for a long time is not being able to know when he's had enough. We broke out the 18 mos clothes yesterday and he's almost 22 months, so he's really catching up!

We're home... again...

Where did we go, you ask? Because just 10 hours ago I was sitting right here telling about my adventures in stupidity with the O2 compressor. Yes, well, we took a road trip. To the ER.

At about 8am we got the kids all up and Emma was not feelin great. Got her pain meds in her and her morning heart meds. With that she started gagging and spitting out marble-sized chunks of coagulated blood. (if that has you queezy stop reading now!). She also had a lot of fresh blood coming up and continued for a few minutes. We called Mike's parents (woke them up- thanks for coming so quickly this morning Peggy!!) and then the ped's office. We already knew we were headed to the ER but wanted to at least call her ped.

After sitting on hold for 7 minutes- which when your child is screaming and spitting up blood seems MUCH longer- I got a nurse and a page in to the dr. Got dressed, grabbed an overnight bag and stuffed it quickly then headed out the door when Mike's mom arrived. She'd continued to spit up coagulated blood another 3 or 4 times and had a constant drip of blood from her mouth. We rinsed it with water from a syringe, tossed her in the car and headed West.

In the car I called the ENT and we quickly got a call back that we could probably go to Orlando and didn't have to go to St. Pete for this. Of course if it does it again, we need to go to St. Pete for another visit to the OR for it to be fixed.

So... went to the ER at Arnold Palmer. Surprisingly they took us in immediately (the poor lady in front of me had to go sit and wait, I got an evil eye LOL), checked her out, her SATS were low but OK. They looked at her throat and said it's really irritated so is likely the cause of all the blood, but no active bleeds, which is good. Then we gave her some anti-nausea medication since she probably swallowed a lot of blood. They said to wait 20 min, feed her, and if she keeps it down we're ok to go. Within 90 minutes we were IN AND OUT of the ER! That's unheard of!

We stopped at Einstein Bagel Bros. for a quick bagel for breakfast... or was it now lunch? and headed back to the house. She's now resting somewhat peacefully with oxygen and a pulse ox and running a bit low sats but ok. Now I'M ready for a nap!

I think Emma just wants to make sure I never run out of writing material, though I'm sure you all would much rather hear about the new tricks the kids have learned than the next medical adventure.

Which reminds me, updates on all the kiddos are coming soon! Promise!

2am.

I got up at 1:15 because Brianna cried. Sat in her room for a minute until I realized she is probably HOT. Moved the O2 compressor into the family room but in the mean time unplugged it while it was running. Alarm. DUMB. Plugged it in only to hear the alarm continue. Waited a while, purged the tank, turned it on. Alarm. Got online to troubleshoot before calling the 24 hr hotline. Well... the O2 compressor is working again thanks to online instructions ie: plug in to outlet. Yes, I plugged it in in the family room but the outlet was on a lightswitch... It was 1:30am, what can I say?? Then at 1:45 K woke up screaming. Not a cry, a scream. He's now been to the bathroom and is tucked back in bed. Brianna's sleeping. Emma's sleeping. Micah slept through everything. NOW CAN I GO TO BED??? (btw, the only reason I'm on the computer is because it was on to troubleshoot and this seemed a good place to complain about my late-night stupidity)

Saturday, June 28

Dilemma: sleep

Brianna loves having Emma in her room. The two of them go to sleep knowing there's someone else nearby and at night we can say to Brianna "it's ok, I'll be right back, let me get Emma" and she'll wait. She LOVES her sister! In light of the oxygen compressor and the monitors with alarms alone, we considered separating the girls so Brianna wouldn't be woke up during the night by beeps and her sister crying that we put the oxygen back on her AGAIN. So far Brianna's slept through it so maybe it's no worry? Also, the compressor is LOUD and HOT. It creates quite a bit of heat, and in an 11'x11' room with three people sleeping in it (well, #3 would be ME and I hope not to sleep in there too often...) it creates quite a bit of heat.

My first solution for that would be to plug it in in the bathroom, set it in the hallway, and use the extension tubing they gave us to get it all the way to her bed. Then it's in the hallway. And it's big. And it's in the way. And it's noisy to the boys' room too. The second thought would be to separate the girls and put Emma's crib in the guest room. She won't wake Brianna with alarms, it's still a small room but at least it would be just her and maybe me, and yet... that's the HOTTEST room of the house (sorry to any future guests, but it does have a fan!!) and when she naps in there without the compressor it's already warm enough that we run the fan for her.

So... what do we do?? I hate to separate the girls. Especially in the next few weeks where they CAN be together-- there's this line in the sand that says "let's keep everything as normal as possible until August 13th." Then things will be crazy for a little while without any need for us to have changed things around. There's also the thing that says "if we're going to make any changes, let's do them NOW so there's 6 weeks to adjust." I think I will call the home health company on Monday and when I request those spare tanks for emergency use, I'll ask whether we can use regular tanks all the time. That at least cuts out on the noise of the compressor and the heat it creates. Then we can deal with the alarms if it's a problem. If we ever figure out how to keep the O2 ON HER then maybe that won't even be a big deal after all?

Now what?

Yesterday turned out to just be a busy day. We got going, finally did get the kids dressed :) They had lunch, went down for naps, then the exciting stuff started happening LOL. The med supplies guy came with an "oxygen compressor". Yep, it's this huge heavy box that is used to continuously produce O2 instead of having to use tanks that need refiling. He brought stickers for her face to keep the nasal cannula in her nose, a few more cannula- including 2 'infant' size ones since that's what we used at the hospital but they'd sent us home with 'pediatric' ones based on her age... He also brought two new leads for the monitor. They're the little sticky things that wrap around your finger or toe and glow. It plugs in and measures the heart rate and the oxygen level. Anyway, all stuff we needed, except no extra tanks. So Monday I'll call and have some more portable tanks delivered. After all, we live in FL and if the power goes out then we end up with no oxygen from this machine. Also, if we have any sort of evacuation I'm not sure that this huge machine would fit in our car, so we'd need tanks to bring with us. So... I'll call Monday for those things. It's nice we live in the US where we can pretty much count on having electricity for the most part, but in FL in thunderstorm season it does go out periodically for an hour here or there, and the fear of a hurricane taking it out for a few days is also a possibility!

Ok, about 20 min after he left I heard Emma beeping! I'd monitored her during nap but at the hospital she'd been OK during naps so I didn't immediately put the O2 on. Well, she was beeping from SATS, not HR. Weird. So I let it go a bit and she started alarming again. Her sats which are usually 93 and up even when sleeping were 87 and kept bouncing back down there. So I hauled the machine into the back room where she naps and I hooked her up, used an infant cannula, yay, and went back out to lay down myself. Then she alarmed again. I went in to check on her and the cannula was IN HER MOUTH and she'd CHEWED THROUGH IT! UGG! Aparently that wasn't working. So I grabbed the pediatric one again- didn't want to ruin both the infant ones in the first 20 minutes we have them! and I grabbed the stickers to keep the O2 on her face. I set her all up (amidst crying, poor thing) and went back to lay down. ALARM. She won't keep it on!

So... WHAT DO I DO??? How do you get a young child that just finds it irritating to keep the oxygen on?? I had it snug to her nose, pulled it farily tight with the stickers, wrapped it around the ears and under the chin and tightened it there. No matter what she pulled it down into her mouth and chewed on it! The pediatric cannula is a thicker material so I'll stick to that for a while until we figure this out, but I did try using the infant one she'd mssed up and cutting the prongs off it completely to just let it blow by her nose- a friend said they do this for their daughter. No luck, she still pulled it into her mouth to chew on. I gave her a bib, she likes to chew those, and another chewy toy and left her with those in her mouth. Ten minutes later I answered the alarm and found the tubing IN HER MOUTH. Any ideas??? There's no disciplining her, really. I told her no, put it back in her nose, tapped her mouth said "NO" firmly, but hey, that's about it! I don't want her feeling like she's in trouble and the O2 is a punnishment... I'm at a loss!

She fell asleep really late yesterday for her nap and even in her sleep would rake it down into her mouth. Covering her hand won't work, she either uncovers it or just does it with it covered. By the time we got her up from nap (it was almost 6pm!) I was going crazy with the O2, and she still was having low SATS which is not something she's had in the past very often. Yes, the pulse ox is working fine- we tried it on Mike and I! And we tried going back to the O2 tank instead of the compressor thingy and it was the same. So her SATS really are lower (maybe because she's more active at home??) and the O2 is NOT staying in her nose.

Any thoughts/suggestions? Does anyone else have a little one on O2 that's old enough to figure out how to get it out at all expense and yet young enough to not understand that they need to leave it alone???

I slept most of the night and kicked Mike out of bed ot answer the alarms. Then I slept on the couch until 10. Then I went back to bed until 11. Have I mentioned that I love my husband dearly and he's the most wonderful Daddy in the world? Ah... now it's 11:30, I really should get the kids dressed LOL.

Friday, June 27

Quick update

Emma had a bit of a rough evening/night. She woke up around 1am and got some pain meds then about 20 min later I gave her a 5 oz bottle. She ate a little and then later on I heard her drinking again. About every hour all night long she pulled off the O2 and her SATs or her HR would go crazy. The HR was set down to 50, so it didn't go off until it was REALLY low. Fixed that this morning! Anyway, she did ok and this morning she drank another 3 oz. Sometime in the next hour or so I expect the home health guy to bring out the rest of her supplies- including those lovely face stickers- so that she might be able to keep it on. She also kept taking off her pulse-ox toe thingy so we put a tight sock on. She likes the glowing light :) ET!

Off to get the girls DRESSED (aah! it's 11 already!) and start on lunch. Thank you EVERYONE that has been praying for little miss! We know God is the one working miracles and bringing our big girl back home.

Q&A

More answers from comments posted the past few days:

Have you tried a pacifier?...Now (my daughter) ate before she would drink. She liked mashed potatoes and mac n cheese. Not sure if Emma is eating foods yet,but it might be worth trying. The 7th through 10th days were her worse days. They said the scabs were coming off... -Robyn
Emma HATES the pacifier. With a passion. Weird, I think, but whatever. Emma's not eating solid foods yet. I've heard these next few will be the worst... Not looking forward to that, but that means that after that will be BETTER!!


Will she not eat the pudding either? wasn't that what she liked at home? If you could manage to get a little on your finger and on her tongue....maybe....-Jan
I think you're thinking of little Ava, Charissa and John's little sweetheart. They adopted her at the same time as we adopted. You can follow their story HERE.


Meredith,Don't you wish you could tell what was going on in Emma's head? -Carolyn
Wow, that would make this so much easier!!! LOL


We put ben on a what they called a "total nutrition IV" for a while when he would not eat. Is that the kind of IV Emma is on until she decides eating would be great to start again. -Mom C.
They didn't want to do this for Emma because they wanted her to feel hungry so she'd eat.

Don't you love hospital rooms? -
Bethany
NO! LOL

So what was the prognosis of the echo? Were here pressures any different? Bout the same? (did I miss that in the write up, sorry if I did) -Jan
Sorry, I guess I never did post this! The echo showed everything they'd expect from her AV canal. Don't know if I've mentioned it before but she also has a PFO and a PDA. Anyway, they got the measurements for the patches for her OHS soon as well as another accurate look at the heart. The Holter monitor also said the same- the rhythm is fine, so she's ok with the HR drops, but let's do O2 to keep them from happening anyway...

Hi Meredith, I hope you got your nap. It's hard when you aren't getting enough sleep. I was wondering, will having the holter on with the leads on her chest irritate the rash? P.S. I received an email from someone on the committee(?) for this years Buddy Walk and I'll definitely be doing face painting and probably glitter tattoos too. I can't wait! -Kelley
The Holter didn't irritate the rash, thankfully. Actually, the rash started clearing up during that time and even receded under the patches. Weird, huh? I'm so glad you'll be a part of the Buddy Walk this year! I'm looking forward to it!

Meredith, is it possible that Emma's rash is a latex (or other)allergy that she is developing from all the band aides, tape, leads, etc? -Natalie
No, her rash on her chest is spreading and not where she's "touched" necessarily (they do listen to her chest but often outside her shirt, and they listen to her back and stomach too where there is no rash). She doesn't have a latex allergy- we're pretty sure of that. The face bandaid is the only reaction related to any tapes, but it was on her FACE, which is generally a more sensitive area anyway...

Mer...I know she has sensory issues when it comes to food, but have you tried jello with her at all? She needs to try and get something to moisten her throat. She's probably in so much pain from a dry throat, and possible scabs coming off as a result. If you could only get it moistened so that maybe she will actually finally WANT to drink. -Me
She chokes too much on any solids and throws up, so we didn't try anything like jello. We did keep her throat moist all the time though by squirting a little milk in regularly and water too.

Just a thought are you sure she isn't allergic to the adhesive? -Anonymous, DoveFamily, Dolores
No, we're not SURE, but those reactions weren't from adhesive :) Just the one on her face but I think it's more just sensitive skin than an allergy since it was just red and not really a "rash".

Is she blistering with the other IV site?- Mom C.
No, her other IV site was fine. When we took it out we realized there was a little 'pinch' so she has a 1" scratch across her hand where the "no no board" (yes, seriously, they called it that!) was taped down. The adhesive didn't hurt anything on that hand and the IV stayed good :)

Oh, Happy Birthday to your husband (my birthday happens to be today also, but I bet I'm a little older). -Danielle
Happy Birthday to you also! I'm sorry to hear of your health struggles and will be praying for you. Thank you for the kind words and encouragement!

Does she just eat bottles? I know applesauce & jello pudding always worked for mine but don't remember if Emma was on anything solid before the surgery. -Stephanie
Nope, not yet! We are hoping the tonsils being gone will help in the long run with being able to swallow though!

when my Josh (also has T21) had his T&A a year go... he could NOT tolerate the Tylenol w/codeine at all! We stopped it after about day 2-3 and started just regular tylenol SUPPOSITORIES!! It was a miracle!! -Susan
Emma seems to do pretty good with the Ty w/ Codine. She hasn't had any type of negative reactions to it other than not wanting to swallow it. If she goes back down-hill I will definitely try the suppositories!

I can't remember if Emma was eating any solids before this or not, but high water fruits are a source of water too as well as baths. I know that sounds strange but the water will soak through the skin and has helped keep Dom hydrated in the past when he just wouldn't eat. -Cathy
Ah... time for a bath anyway :) A good soaking will do! No solids for this chicky though.

Tylenol with codeine is the worst for constipation! It had Payton all stopped up, so then we were dealing with sore tummy and throat together. Try regular tylenol if you can and see what happens. Praying the little miss drinks!!! Can you dropper her some water? What about secretly in the bathtub without her knowing? LOL I'm stretching here, I know. LOL -Bethany
Ah... the culprit :) I don't suppose being dehydrated is helping either. We started her on regular Tylenol but went back to the big guns. She was still hurting with the other. It's enema time, we have this problem (um, we being her and Brianna!) regularly and Momma's a pro at enemas now (ug...)

Thursday, June 26

Well...

Emma ate the 3 oz early this morning, then took 6 oz at 9:30 and we were really thinking that was it! We came home, got here around 4pm then rested and visited with Chris- she was watching Bria and Micah. It's now almost 7:30 and Emma has drank a combination of 4 times totaling.... ONE oz. Since 9:30. Pray she will eat tonight before bed! We've offerred the bottle constantly and she took a sip then CRIED earlier. She's had the Tylenol with Codine, so we can't give it again until 8pm. Anyway, we are glad to be home, glad to be together, but we need her to EAT so we can stay this way!!

ALL CLEAR

We're coming home :) Waiting on O2 but otherwise packing up, cleaning up, moving out. We should be home by mid-afternoon!

EMMA ATE 3 OZ!!!

Waiting for the ENT, but I am SOOOO ready to go home! Best part is that I got a decent night's sleep so as soon as we get the green flag (and the portable O2 tank that's being delivered at 10am) then we will HIT THE ROAD for home. I had a kind offer from my dad and uncle to drive over and drive us home but since I slept good last night I'll be fine driving. Yay, I hope we can go home!

Her BP was 78/38 this morning, so still low, but I'm sure that's because she's still dehydrated. She drank 3 oz then another oz or so and has 5 more sitting in a bottle next to her. The hand is clearing up, the rash is clearing up, so as long as the BP doesn't keep us here then I'm sure that the ENT will let us go HOME :D

Early this morning about 4am Emma woke up hurting. She was grinding, kicking her feet, and her HR was 138 (remember sleeping it's usually been in the 60's ish). We gave her some Tylenol with Codine and rocked for a bit. They took her BP then and it was 106/75 so I know she was hurting pretty good. Now this morning it's back down to what it was last night.

All said, it's been a week and it's TIME! Please pray we are released this morning!

Wednesday, June 25

P.S.

Our roommate is gone!

And I forgot to mention that Emma's blood pressure is really low. 78/37 on two attempts about 2 hrs apart. They're leaving her off fluids all night hoping that tomorrow she'll be thirsty enough to drink.

I'm going to SLEEP :)

Ten updates in one day?

Can you tell I don't have much to do? I have Backyardigans playing on the left side of my computer screen and a limp little noodle on my lap, so it must be time for blogging! A few things today- first the good stuff.

Emma's rash seems to be clearing up some. It started as a 'spotty' rash then became a 'covering' rash and moved onto her back. Now it's going back to a 'spotty' rash and is receding on the edges. YAY! She's no longer on any antibiotics and hasn't had benadryl since last night, so the rash going away is wonderful!

Emma has only lost a little over 5 oz! We were really concerned that she'd lost a lot because she hasn't eaten in a WEEK. Yes, this time last week was her last bottle. The 5 oz difference is not taking into account the extra weight of her IV 'brace' or pulse-ox and cord, but they can't be THAT heavy, so it's roughly accurate. Not too bad.

The Holter monitor came off today and the cardiologist read the results. He said that her rhythm is consistant even with the lows, so that is another good thing! If her rhythm was changing it would be a problem. YaY! So we continue with the plan with oxygen and monitoring at night and monitoring at least for naps. The equipment for that will be delivered tomorrow around 10am.

Ok, so now the not-so-good stuff...

Emma still is not eating. She's been off the IV for 12 hours and is no longer peeing either, so she should be good and thirsty by now. She spent a good little while in her crib with a bottle today and she was quite intentional in making sure that the bottle was nowhere near her. in fact, it was kindof funny because she also didn't want the bottles UPRIGHT. She would go over it to knock it over, toss it further away, then go back to her own business.

Her hand looks gross. From the pictures earlier I'm sure you're no longer doubting my analysis of her little burnt self, but anyway, just one more of the icky part of the day.

She is constipated. You can feel the rocks in her abdomen. Unfortunately the dehydration from a week of not eating is playing a big role in this one. Also, because she was admitted under ENT, they are in charge of her care. So... the ENT is the one that gets the call about constipation. What do you think they'll say? Um... dunno, they aren't pediatricians or GI docs. Hence the EARS NOSE AND THROAT title... silly hospitals!

Emma is really lethargic today. I know it's because she's getting dehydrated, which is "on purpose" so that she'll decide to drink, but it doesn't make seeing her not hold her head up well or be so floppy any easier.

And lastly, my oh-so-kind roommate is still here. Still loud. Still inconsiderate. Still... Anyway, I hope they're going home tonight, and more than that I hope that we don't get another admittal in the middle of the night so we can JUST SLEEP!! :D

Kristopher and Brianna's playdates

Kristopher went to Kerry's house on Monday and Brianna went with him too on Wednesday.  They both had a GREAT time playing with the other kids!  F is just a few months older than Kristopher- he just turned 5.  And M is just a few days difference than Micah, so he and Brianna are just 8 months apart.  It's been such a blessing to know that the kids are well cared-for while we are spread out.  One less worry!  Kerry sent me these pictures, she knows I miss the kiddos.  THANK YOU KERRY!!

k and franklin B and mile2suntitled k and bria bria at shealy  B and miles