The New "Normal" - May 19

We are slowly but surely working our way into a routine that allows for enough time to get everything taken care of!

Mondays will be our "fresh start" day - we change out equipment parts, tubing, sensors, filters, canisters, etc. Today was our first trach change at home and everyone survived! Got all of the supplies restocked for the week and made sure we were ready to go!

We've set aside some time for you to come downstairs and be with the family so every day when sisters and Daddy come home you are ready and waiting for some attention! You got some one on one (plus nurse) time with each of your sisters today so that was neat to see. Little Big actually (politely) kicked me out of your room because she "needed to talk to you about important stuff".

We didn't make it out for a walk today, but we'll make up for it by going on an outing tomorrow and Wednesday - we've got a pediatrician appointment tomorrow and an appointment at the High Risk Infant Clinic in San Antonio on Wednesday. Busy, busy week! 

Tonight they weren't able to schedule anyone to work (still working out the kinks in scheduling) so Mama is on her own! Sleep good and don't give me any trouble please :)

Video Fun

We move you downstairs this morning to hang out for a little while so that Grandpa and I could put a dimmer switch on the lights in your room. You still love being downstairs, but you got sleepy pretty quickly since you had been awake since about 7! You refused to go to sleep though, and were fighting it SO hard!

Then you started talking to Nanny again...trying to get out of sleeping still...

A little while later, Nanny got some of your conversation recorded:

Technically, you should not be able to get any sound out at all because the trach is positioned below the vocal chords so the air goes in and out without passing over the chords. You've got such a large "leak" from your mouth being open most of the time that they have to accommodate that with some extra pressure from the vent so if you are positioned just right or holding your mouth more closed than usual some of that extra pressure will go up over your vocal chords allowing you to "talk". It's pretty neat to hear after so much time without hearing anything from you!

When sisters got home this evening we went for another walk and stopped by to see Aunt C and the boys (and the dogs). Then they got to help with bath time and getting ready for bed. It's so good to finally have our whole family under one roof!

Adventures at home... May 17

Adventures at the hospital always included words like "inconclusive" or "confusing" test results, trips to the 2nd floor (surgical floor) or tests that include IVs and needle pokes. Adventures at home include hanging out downstairs and going for walks! We went around the block today, stopped by Papa and Mimi's house, enjoyed some sunshine and you loved it! Constantly scanning and taking everything in!

Other than that you had a pretty relaxed day hanging out with Daddy, Mama and Nanny. You took a good morning nap and a couple of short afternoon naps. We've had four different nurses while the agency is working to get schedules figured out and get us a regular rotation going and it doesn't take long before each one of them comments on how happy and content and sweet you are - I'm not the only one who thinks you are just the best baby there is!

My favorite part of the day is quickly becoming bath time - you were a little sleepy tonight during bath time but you still smiled and tried to talk to us through the whole thing :)

Love you Baby Girl!

Settling In - May 16

Whew - what a roller coaster the last couple of days have been! It's been nice to not have to drive to and from San Antonio every day. We're definitely still adjusting to having an extra person in our house all the time, but it has been helpful - I got to go to the grocery store in the middle of the day (which felt really weird!) and I've been able to keep up with stuff around the house...but it's weird. We're working on getting a schedule of sorts worked out so our days can become a little more regular and routine.

You have absolutely loved being at home - there are so many new things to look at, lots of people to talk to, your sisters get to say good morning and good night to you every day and Daddy gets to hold you and love on you too! Our family is all together now and we are all loving it!!!

You got to come downstairs today for a little bit and hang out with Sisters and Nanny and Grandpa. I'm not sure if you knew what to think of all the noise and excitement but you were intent on not missing any of it - you had your head going back and forth to every new sound you heard! 

Keep being strong and keep smiling!

HOME! May 14

Yay!!!! YOU ARE HOME!!!!

When I got to the hospital this morning the nurse had everything packed up and ready to go so I just had to sign final papers and watch a parade of people come by the room to say goodbye to you. You have such a fan club at the hospital but they all agree - don't come back! You knew something was different about the way we were all acting today and just kept smiling and kicking.

We had a special outfit for you today:

I had to add the hair bow in so there would be no confusion... All the pink and purple superman outfits didn't have capes so we had to get the "boy" outfit. Either way, you are such a super baby and you are my hero. You have been through more in your short life than most people have to go through in an entire lifetime and you just keep smiling and making friends and being happy!

The transport nurse said you fell asleep about 15 minutes into the ambulance ride and then woke up as soon as they started slowing down to make exits and turns. I'm glad you're still ok with being in the car! We got you all settled in and the trach nurse helped get everything situated and rearranged and figured out before they left.

Two of your home nurses were there today to get everything figured out from their end and start making notes and learning how awesome you are. One of them has already said about 26 times that you are just the cutest, happiest baby! Hopefully over the next couple of days things will settle down and we'll get our new "normal" figured out, just in time for sisters to get out of school and start it all over again!

I love you Superbaby! Dr G was sad to see you go but doesn't want to see you for more than 5 minute visits at a time now :)

Check, Check and Check! May 12

Started the morning off with the family conference and got everything on the list reviewed, confirmed and checked off - we are good to go! There were a couple of last minute things (Daddy had to do one more trach change, they wanted ENT to come look one more time) but everything is ready!

The home health company providing all of our equipment came by and did a (very) modified version of their home training (i.e.: this is the same feeding pump you had last time, do you remember how it works? Great. This is the same oxygen concentrator you had....) We spent a little more time on the vent and then we loaded most of it up for Daddy to take home. I've got to get one more small table for your room but then I'll be able to make sure everything is all set for Wednesday! Our home nurses were all trained last Friday - one night shift, one day shift and one backup. To everyone's surprise - our insurance is actually going to pay for 24/7 nursing through August so we don't have to worry about it until then!

It looks like you'll be going home by ambulance Wednesday - this allows for two things: 1) to make sure you have the attention you need for the trip and 2) the trach training nurse can come in the ambulance with you and help get everything settled at the house. Yay! 

You had such a busy day (with only one very short nap) and so much excitement in your room that by the time it all calmed down you still did NOT want to go to sleep... You fought it so hard!

You did that for almost 30 minutes before you finally crashed! Right now, Daddy is on his way home, sisters are with Mimi and Mama is going to get a nap too. I'll be here allllll night with you and am so excited that everything is going so well. Two more days and we'll all be home together!

Happy Mother's Day (Weekend) - May 10-11

So I didn't get to come see you Friday because Big Big had an orthodontist appointment and it was family picnic day at school so I got to have lunch with both sisters and then spent the rest of the afternoon doing laundry and working in getting your room ready for you and your new equipment. Your nurse said you had a great day, spent some time in your swing and some time of the floor for PT and slept REALLY good from about 4 until shift change at 7, then went back to sleep after your bath at about 9 and slept all night.

Saturday, Daddy had to work the last of the graduation ceremonies (so glad that's over!) so you and I had some fun at the hospital! You sat in your chair and watched people for about an hour. It wasn't as exciting as days before though because there weren't as many people here. We spent some time playing and you took a really good nap. They put you in your swing around 5 and you sat and watched people until shift change and then went to sleep for the night. At some point the nurses worked on these:

Sunday was the day to put Daddy through the paces - he got to help with a mobility exercise, learned (and did) trach care, and helped with the trach change - he pulled it out, I put it back in. And he did GREAT!! We had a little bit slower afternoon, we went over the vent settings and Daddy learned about the set up and tubing and connectors. To add to the list of great gifts I've gotten for Mother's Day (I got an angel and chocolates from Big Big, a portrait from Little Big, flowers from Daddy and a card from you and Daddy) they signed off on all of my trach training today!!! Later this evening they'll do the car seat study (standard for all releases) - hopefully you remember how much you started to like the car seat!

I love you Baby Girl!

Finally Got the Smile!

We took another trip today around the unit and went to watch the fish. When we got back to our room the PT suggested we let her keep sitting in the stroller to build up her tolerance and strength. So as people walked by she had a prime seat in her doorway and we FINALLY got a smile in the seat...even though it's obstructed by the tongue :)

It was an exciting day for Mama too - I did my first solo trach change! It was a little more nerve wracking than having help because you were really tired and wanted your hands to be in your mouth and since I wouldn't let you do that, you decided to try and help me instead. Then when I pulled out the first tube you heard a noise outside and turned your head making it a liiiiiittle difficult to get the new on in - but we survived!

Dr. G increased your feed to 100mL per hour during the daytime - you've lost a few grams over the last couples of days from all the excitement and exercise so she just wants to make sure you're getting all the calories you need for your new level of activity.

When I left you were still snoozing from your lunch time nap - one good thing about the room is that you aren't easily distracted from sleeping as before. The last two days you didn't take a nap after all the excitement because there was still too much excitement around you and people coming to talk to you about your trip.

I won't be there tomorrow - Big Big has an orthodontist appointment and then it's Family Picnic day at the school. 

What a Day! May 6

Baby Girl you were WIDE awake and smiling when I got there this morning. I had two nurses stop me on my way to your bed to let me know they had already been to visit you and you were in the best mood! You took a lite bit of a nap between 9:00 and 10:00 which was good because the trach nurse had big plans for us today!

Yesterday, we reviewed the process for mobility (unplug that, unhook this, battery operated this, emergency bag that) and today: we took a walk! We went around the unit twice and you LOVED it! The PT went with us and she said that might be the best exercise for your neck because you were moving your head back and forth, up and down trying to see everything and everyone and not miss anything! 

We put your tumble form chair in the wagon so you were sitting up pretty good and could see - tomorrow we'll use the stroller (there was a delay in delivering it). The best part was watching you watch the fish - Dr. G let us go out in the lobby - you were absolutely entranced by the fish!

There are ao many people here who love you - it took us almost 20 minutes to walk around the unit twice because the first time around we had to stop at every other bed spot so the nurses could talk to you - and you just smiled and kicked and loved every bit of the attention!

After that adventure, we did a trach change that I got to direct - the trach nurse only did what I asked for assistance with and didn't say anything. I figured after all that you would be worn out and ready for a nap...and your eyes said you were... But when I got back from lunch you were still awake! You looked a little more rested so maybe you got a short nap in but definitely not as long as we thought you would sleep. I guess you were just too excited :)

They put you back on the trach collar this afternoon. Yesterday you were on it for 45 minutes with absolutely no issues! The trach nurse also wanted to try the speaking valve again since you did so well with it the first time. You're actually going through periods where you keep your mouth closed now, which is good, but it makes the vent go haywire because it's set to accommodate the leak from your mouth always being open. (The way this vent works is purely supportive - if the patient wants to breath it senses it and allows them a breath on their own, or gives them the pressure to make up the difference they can't provide for a full breath {if the breath is supposed to be a 10, but patient can only supply 6, it gives the other 4} so when your mouth is open, the extra pressure the vent is supposed to give to make up for the escaping air gets pushed back and makes the alarm go off like you're coughing or choking.)

It was a fun, exhausting day. Here's a fun video of you playing with Sophie before our morning adventure began!

Catching Up! May 4

All right folks - sorry for the radio silence! It's been a crazy busy weekend. Here's a brief re-cap:

Friday: I didn't go in because I was chaperoning Big Big's field trip - we had a blast but came home exhausted!! When I called in that morning, around 9, they said she was still asleep - she's been waking up between four and five, hanging out and enjoying the visitors during shift change, and then crashing again around 7:00 until 9:30 or so. Crazy girl! She did mention they got her bed turned back around facing out Thursday afternoon (don't remember if I mentioned it but they put her in a bigger crib and the nurse forgot and faces her toward the wall Wednesday night!) and she spent some time in the swing.

Saturday: we got a new neighbor so Baby Girl had plenty to pay attention to! When we got there, Daddy went for basic trach training so we got our girl time in. We spent some time in the rocking chair, had some swing fun and played with the toys. When Daddy got back he watched us change the trach out, clean the site and he got to suction during all that - he did great :) After lunch we did trach CPR training which just adds a few steps in and went over the basics of setting up the vent. We'll do much more on that next week!

Sunday: we didn't make it over today because it took us longer to get home from services than we planned and we wouldn't have gotten to stay long before needing to be back to get sisters so I spent the day cleaning and re-re-rearranging the nursery and trying to figure out what all still needs to be done in there. It took me quite a while to get used to having everything in our room, but now it just seems so empty... I'm not looking forward to Baby Girl being all the way upstairs, but it is what it is! I called around 7:00 and they said she had a great day - was very smiley and happy and took good naps.

Please continue praying that everything stays on track for the 14th! So far, so good!

Throw Back Thursday - May 1

Remember that one day when Lexi didn't throw 73 curveballs at her medical team to keep them on their toes? Yeah - me neither.

Started out the day finding out they had to put her on oxygen last night - more than likely it was more of a ventilator issue that the nurse didn't know how to fix, but still.

Then I was told she wouldn't be able to go home until the week of Memorial Day because it would take about two weeks to get everything figured out and then the pulminologist would be on vacation and wasn't comfortable sending you home while she was gone. Dr. G laughed and said then we better get her out of here before your vacation then and she fast tracked the timeline... VERY TENTATIVE  discharge date is May 14. 

Why so tentative? Well one, because it's you and you don't like doing things by other people's plans. And two, all this HAS to happen before then:
-- switch home health providers (insurance nightmare)
-- select home health nurses
-- train home health nurses on your case and vent care
-- Dad has to get caught up on trach care training (in the middle of graduation insanity they want him to come in as much as possible. HA)
-- we both have to take a ventilator care class
-- get new equipment
-- room in with new equipment
-- home inspection to make sure it's a safe environment and we have sufficient electrical support 
-- relocate all of your stuff back up to your room (no I don't like the idea of you being upstairs, but it's better than the alternative...)

And in the middle of all that, ENT wasn't thrilled with the placement of the new trach after it's had a couple days to settle in so she switched it again - initially to one that we would have to custom order, but then said let's try another option first. So now instead of a neonatal size trach you're in a pediatric size; she's guessing that your skin webbing around the neck makes the trach path longer than a neonatal size will work with, which is causing it to not go into your airway enough, making it look shorter. So we're on a pediatric, longer trach now to see how that does. ENT also laughed when she heard end of the month so everyone is on board with getting you out of here in the next two weeks. Go team go!

So they made the call to the new company to come get started with all of the intake information so that we can get the ball moving on home health (supplies, equipment, nursing and training) and they came by right before the trach change issue.

And you didn't get a morning nap because of all of the excitement
And Mama didn't get lunch until she was driving home.
So between 10:00 am and 1:00 pm you went through two trach changes, three X-rays, one bronchoscopy, two new faces being introduced, vent settings being adjusted, and you got new boots because your feet got to fat for your old ones!

At least you got a good nights sleep last night... Oh wait, no you didn't. You stayed up late again, woke up early and barely got a nap before all the insanity started.
{Follow up from above} the alternative to you moving to your room upstairs is having a nurse on duty watching you sleep with me and Daddy trying to sleep in the same room - not happening. Since we're coming home with a ventilator we have to have 24/7 care, which means our family is fixing to do a LOT of adjusting! It might drop to just at night after everything gets settled in if you do well enough during the day to just be on the trach collar - we'll see!

So you get some rest while the rest of us try to move mountains and make stars align so you can come home!

Exciting Day! April 30

Today was a pretty exciting day! We got switched over to the home ventilator AND they came and measured for the Kid Kart AND you got to use your new swing!

When I got there this morning the nurse said you woke up at about 4:00 this morning and wouldn't go back to sleep, so they put you in your swing and you finally fell back asleep around 7:00...after all the excitement of the shift change of course! She also said that they put you in it yesterday at about 3:00 pm and that you just sat and watched everyone walking by (and stopping to talk to you) and smiled and kicked away until about 6:00 when you finally started getting sleepy eyes. But every time someone would walk by you'd perk back up in case you were going to miss something!

You're tolerating the big bows much better also :)

The goal with switching over to the home ventilator is that you wouldn't notice a difference in the support...but since they have different settings and parameters, and are not really meant for people as small as you are, it's not quite that simple. But after about 30 minutes of adjusting and testing and switching around and number crunching, we think it's finally about equivalent to what you were getting before - and it's much lower settings than they were anticipating. This is day three with NO OXYGEN and both Dr. G and the Pulminologist are thrilled with how well you're handling it. They didn't want to push too much today so you will stay on the vent only for 24 hours, then we'll go back to trach collar when you're wide awake and vent when you're asleep and see how that goes.

Watching your new toy after we made the vent switch - it moves, has lights AND sound! PERFECT!

I'm super excited about the Kid Kart!!! Here's the one that we're getting - they came and measured how long your torso is, your legs from the knee up and then from the knee down. The seat will be built to fit you now, but also to adjust for the next year or so before we might have to get a new one. These strollers are made by a wheelchair company, but designed to have the conveniences of modern strollers. It will have brackets on the back that fit with the vent we're going home with, it has a solid tray on the bottom for anything else we'll need, it will have an oxygen tank holder (just in case) and an IV pole for feeding bags. It will take a few weeks for it to come in, but they are bringing the loaner stroller early next week for us to work with mobility training and to bring home until your's comes in. Ignore the price on the page - I had a heart attack when I saw it first too, but that's something that SSI covers! BLESSING!

We spent some more time playing with your toys - you are much more interactive with them (when no one is around) and the PTs were thrilled when I showed them the video of you playing with the spinner the other day. Sophie continues to be the one you tolerate the most... when I sat her on your chest this afternoon you put both hands on top of her and looked up at me like you were saying "MINE!" Then you started trying to chew her face off until she fell down too far and you couldn't get her back to your mouth.

Play away Baby Girl!

Baby Steps forward - April 29

So I couldn't take pictures of the old trach...because it's gone (duh Mama!) but here are the product pics from their website:

Flextend - extends beyond the wings that hold the trach ties so that it's easier to access for suctioning and easier to clean around the wings:

Standard - sits more flush against the neck (no extra length beyond the wings):

The standard is a little more difficult to take care of and keep clean since your neck is already so small, but when has anything been easy with you?? The other problem with the standard is that when you're attached to the vent, the tubes pull the trach off center (look at the picture below) which pulls at the edge of your stoma and irritates it. With the flextend it gives us more room to situate the tubing and make it more comfortable. We talked Friday about ordering you a custom trach that's the right length on the inside, the right diameter and has the flextend - because right now (surprise, surprise) they don't make one with your specifications. Sigh.

Then this morning Dr. G said if it was ok with trach nurse and ENT she wanted the flextend back, and we'll just see how the length that we have does - so we switched it out again. Three trach changes in two days! Tomorrow the pulminologist wants to do a bronchoscopy again just to make sure everything is ok and (hopefully) put you on the smaller ventilator that we'll be going home with to start doing some trial runs. The trach care nurse wants to start doing some mobility training (aka getting you in a stroller with all of your stuff and walking around the unit) to figure out how everything will work best when we're out and about. ALSO - tomorrow the medical stroller company rep is going to come bring us a loaner stroller and measure you for yours so we can get that ball rolling! Depending on when you get to come home again, we might go home with the loaner while they finish up yours but at least that's moving forward! There are two different styles that I'll get to choose from - I got to see one yesterday and it was pretty snazzy! 

We turned your bed around so that the ventilator tubing is coming up from the bottom instead of over the top so that 1) it's not pulling as much on your trach and 2) you can get your right hand up to your mouth because you have not liked not having access to it! It's amazing how much one little change can completely turn your world around! You went crazy with the happy kicking - constant for about 15 minutes! 

So things are slowly starting to move forward again - you're doing great on room air (21% oxygen) so everyone is fairly confident that we'll be going home without oxygen; we're talking again about equipment testing for home care; the next step is just waiting for it to all come together and we can bust out of here!!! 

Patience, Mama - patience!

MRI Results - April 28

SURPRISE! The MRI didn't tell us anything useful. Well, not related to the sleep study anyway. Sigh.

What it did show was:

1) her brain stem is clean and clear from top to bottom;

2) her brain matter is equal and functioning fine on both sides;

3) there is a large subdural hygroma (fluid build up) on the left frontal cortex (approximately the front half of the brain) but it isn't causing any pressure or causing any other problems. It adds one more outpatient visit with a neurologist to keep an eye on it as she grows - but it doesn't give us any information.

We had a fun morning getting ready for the MRI - it included two trach changes (I took one out and put the other in). We also switched the type of trach we put back in - before she had what's called a "flextend" trach that added about 2-2.5" outside so that her chin wasn't rubbing against the trach. The ENT thinks that extra weight might have contributed to the issues on Friday by causing it to hang down more on the outside and causing the inside piece to not sit properly. So the trach we put back in is a "standard" trach so we can see if that makes a difference. I will post pictures of the two trachs tomorrow see you can see the difference.

They gave her one dose of a sedative before they took her to the MRI so that she would be calm and still - it didn't phase her at all. They gave her another dose when they got down there....nothing. She did lay nice and (mostly) still though so there were no issues with the images.

Play Time - April 27

The nurse was putting you in your tumble form chair when I got there this morning and you were pretty excited with all the people that you could see and watch from the floor! We played with the toy giraffe from Uncle B and Aunt K...you tolerate that one the most. The ST would really like to see you start putting something other than your hands in your mouth for a variety of textures and to get you used to moving your tongue around different shapes and sizes but you're not as interested in that as she is. You can almost get your hands all the way around Sophie's leg though so you don't immediately drop it when we let go like with other toys.

You were pretty sneezy this morning - but it made for some cute pictures :)

You got a good nap in over lunch and then we played a little bit more - you figured out how to work your spinning toy - and then you were falling back asleep when it was time for me to leave.

Tomorrow should be an interesting day - you've got your MRI in the morning so we have to do a trach change (your regular trach doesn't work with MRI machines); we have to explain what happened on Friday to Dr. G and figure out what we're going to do about it; and get a new plan going to get out of here!

Easter Pictures!

Here are a few of our favorites from the Easter picture session with Nanny:

One of the few of you actually looking at the camera...but definitely not smiling!

Eh...a little bit of a smile, you still weren't sure about this whole photo session thing!

You were more interested in showing Nanny how both fists really CAN fit in there at once!

This one is my favorite!

Back to chewing on those hands!

This was close to the end when you started being a little stinker...

Annnnnnd we're done!

Not bad for using the PT support chair and really bad hospital lighting :)

Hey look, another parade! - April 26

Dr. P and the nurse both said you had a great night as soon as we came in today. They kept a close eye on you last night and said there were a couple of times you would start coughing / gagging again but it wasn't nearly as intense or as often as yesterday - it didn't even wake you up! There did seen to be something still bothering you today though so not sure if that's just left over irritation or if the trach is still rubbing... We'll find out Monday!

Other than not liking the ventilator tubes being in the way of your hands, you were super happy and energetic today - kicking your feet all over the place and waving your arms. You were really happy to see Daddy and just kept staring at him for about five minutes when we first got there.

We had to leave a little earlier than usual for a Saturday because tonight in another parade and we didn't want to get stuck in the parking lot! Sleep well Baby Girl - we love you!

You had a pretty rough time waking up this morning...it took you about 10 minutes of stretching and kicking before you decided to finally wake up :)

Fiesta Friday - April 25

Let me just start off by saying that I love parades - really I do. But whoever planned the Fiesta Parade route needs to be shot in the foot. Whatever made you think it was a good idea to cut off a hospital entrance for a parade??? And whoever decided to allow the school buses to park on the other side of the hospital needs to shot too. Now that that's out of the way...

We've had an eventful Friday! When I got to the hospital, Baby Girl was awake and off the ventilator - YAY! Dr. G decided instead of being on the ventilator continuously this weekend, she wanted it only when you were sleeping. That was the initial plan / proposal anyway: ventilator when sleeping to help give your lungs support and minimal assistance during the day. So yesterday's plan was out the window by this morning: trach collar when awake on the lowest possible oxygen level and ventilator when asleep with the lowest settings needed to still give you a good break. She also changed the breathing treatments to be as needed - you were getting them every 12 hours but weren't having any issues so she changed that up too. 

Then at about 8:30 you started coughing a little - you were sounding wheezy so we called the RT and we went ahead and gave you your breathing treatment. You kept coughing, but it turned into more of a gagging cough. I suctioned you a few times but nothing was coming out and you had this look in your eyes like "something is wrong". I wish you could use words, but am SO glad you speak so clearly with your eyes!

We called RT back and she wasn't sure what to do so she called the trach nurse who suggested we do the normal trach care so she could see if it looked like anything trach related. We couldn't see anything out of the ordinary, but she said your breathing sounded a little diminished on the left side so they ordered a chest x-ray to look at your lungs. Nothing there. They called ENT but she was off today and didn't answer; the ENT on call said: keep an eye on her until Monday. Thanks. Then your ENT called back, we gave her the run down and she said she'd be in as soon as possible!

This is where the whole parade thing comes in to play. DOCTORS NEED TO BE ABLE TO GET TO HOSPITALS!!!! You were extremely irritated at this point and couldn't stop coughing / gagging. The trach nurse and RT put you back on the ventilator and that seemed to help some but not completely. When ENT got here (sorry to the police man directing traffic she almost ran over - you really shouldn't stand in the middle of a hospital entrance) she did a bronchoscopy (small camera into her airway to see everything) but didn't notice anything out of the ordinary. She looked at the x-ray and noticed that the trach tube looked a little off.

For whatever reason (surprise, surprise - you're doing something no one can explain) the size of the trach tube is all of a sudden too small and instead of curving down like it's supposed to, was just sticking on the back of your airway. So when you breathed too deeply, or moved your head, or when we were doing the trach care and shifting it around it was just rubbing and rubbing and rubbing on your airway :(

So after several attempts, they got a larger trach tube (bigger diameter and longer) in, got an x-ray and seem happier with how it looks. And you were back to your happy, smiling, cheerful self within five minutes. You loved all the attention around your bed, but when I was finally able to come back over there I took your hand and you would not let go. You kept looking at me until you finally fell asleep - exhausted from all the craziness and not getting a morning nap because you kept waking yourself up coughing.

That was all between 8:30 and 2:30. And I'm drained. You certainly like to keep everyone around here on their toes!

In other news, Dr. G wants to do an MRI on Monday of your brain and brain stem. We've never done one of those and she wants to see if maybe they were getting some false positives on the sleep study, or if anything else is going on with your brain that could cause the sleep study to read so differently than your normal sleep habits. You didn't have any problem adjusting to quiet and dark when you were home for two weeks so they don't think that's as big of a factor; you slept, just had a lot of episodes. So more investigating is being done as to why it was such an "off" night. 

Hopefully we'll have a much more quiet, restful weekend and we'll see what Monday brings!

Confusing?? - April 24

"So the sleep study results are...confusing." That's almost as fun to hear as "inconclusive".

Here's what they gathered from the study:

During the sleep study you had "significant apnic events and desaturations" with just the trach collar. But you've not had them in the NICU since the tracheotomy. They tried putting you on CPAP and on BiPAP (read about the difference here) and there were still several concerning episodes. Which hasn't happened in the NICU. So why are they happening in one place and not the other? They don't know.

The more important question is why you're having the events to start with: are you not able to take a deep enough breath because of lung capacity issues or because you aren't able to fully expel the last breath, causing your breaths to get more and more shallow. To (hopefully) figure out which it is, they've put you back on the ventilator for the weekend. You're on the lowest settings you can be for both pressure and oxygen and they're going to play with the levels of both over the weekend to see which you respond to best with adjustments. Worst case scenario: they don't figure anything out and you go home with oxygen and either the ventilator/CPAP/BiPAP for support while you're sleeping and/or 24/7 (I vote no for that option). Best case scenario: they're able to completely wean you off of the oxygen and any needed pressure support because you perform fabulously while you're in the NICU. 

We shall see.

You weren't too thrilled with going back on the ventilator. The RT said when she came and started messing with the set up and hooking everything back up you got a real nervous look in your eyes and started moving your hands around and then tucked them in close under your neck. When I got back after they had you all set up you were holding your hands like you had been nervously wringing them and looked at me like "what's going on? Why is that thing back???"

Sorry Baby Girl. Let's have a good weekend and get rid of it, ok?

In other news: I put a tube in your throat today and didn't freak out (externally) about it! The trach change went well - and we plan to do one next week on Monday and Wednesday for practicing purposes. And next Saturday, Daddy will be at the hospital to get some basic training on suctioning, trach CPR and to watch us change the trach out so that he at least knows how the process goes.

PT and ST came and played with you and you loved the attention...as usual! You smiled and wiggled around and started kicking your legs when they were talking to you and working with you. Tomorrow we'll work with the speaking valve again - I'm excited to get to hear you!

That's all for now. Still no real results and still no plan or timeline for discharge. Tomorrow is a new day and we've got big plans, as long as I can get through the Fiesta Parade traffic!

Shots and Smiles - April 23

Not much to report on today. You had your sleep study last night but we won't get any results until tomorrow at the earliest, probably Friday realistically.

You got your four month shots today and took it like a champ! You cried when they stuck you, but this was you about 30 seconds later:

You're such a good natured, happy baby! 

I worked with the trach nurse and the practice doll to prepare for the trach change tomorrow - I'll actually be inserting the trach this time and am a little anxious about it. Hopefully I'll get a smile when I'm done :)