Flashbacks - May 28

Today was kind of a surreal day for me. When you came home in March, two weeks later we had an appointment at 12:30 with the pulminologist. You didn't get to come home with me that day. You were really sick and, from what I've gathered listening and talking to everyone who treated you that day, we were really close to losing you that day. Your lungs just couldn't keep up anymore and you were re-admitted to the NICU.

Yesterday marked two weeks that you have been home. And we had an appointment with the pulminologist. At 12:30. They even put us in the same exam room as last time. The entire time all I could think was: You're coming back home with me. Things are night and day from what they were that day. You are healthy. You are thriving. You are growing. You are chunky. Everyone at the office who saw you that day commented on what a different baby you are today.

We got to see a few familiar faces - the trach training nurse who was so patient in helping me and Daddy learn everything we needed to know has had your appointment marked on her calendar since we were released because she couldn't wait to see you again. And she was instructed to take a full report back to the NICU when she returned...so many of the nurses there wanted to know how you're doing. When we were in the room waiting I said "I hear Dr. M. Are you ready to see her?" and you started shaking your head no...your latest trick :) A couple of the Respiratory Therapists who have worked with you over the last two months were there also and you smiled and played and talked to them all.

The dietician checked in with us and said you had lost a little weight, but not enough to be concerned about...it could be an difference in scale, you could have had on heavier clothes last week - that's how small of a difference it was - so they're going to keep you on milk only and keep an eye on things over the next few appointments we have at the clinic before anything gets changed again.

You didn't take a very long morning nap, didn't sleep long in the car, and were so tired by the time we got home that you actually cried. It kind of scared the nurse because you never get fussy like that and she said you were just laying in your rocker and just started crying, tears and everything, and just looked so sad! I came up and rocked you for a little bit and you crashed pretty quickly and got a two hour nap in before it was time for bath and bed. You've been sound asleep ever since then!

It was so good to see familiar faces today, but mostly it was so good to see that they were all in agreement with how amazingly well you're doing since you've been home. You still have such a fan club cheering for you and checking in on you - you've touched so many people in such a short amount of time!

Love you Baby Girl!

What a Weekend! May 24/25

We had a super busy weekend!

Saturday was Little Big's birthday and we brought you downstairs for part of it. You loved seeing sooo many people but it completely wore you out! You took a long afternoon nap and after dinner spent some time with Uncle B and Aunt K (the ones who gave you Sophie!) It was absolutely precious to watch them play with you before bath time!

Sunday was a little more calm. You spent some more time with Nanny and Grandpa before they went home and got some recliner time with both sisters.

You must have gotten some really good sleep last night because you were FULL of energy and smiles from morning until bed time today! Nanny got each of you an Oragami Owl piece of jewelry and the little bracelet was so tiny!!!  You liked it because it rattled when you moved your hand :)

Friday Fun - May 23

I didn't get around to posting yesterday because I was WAY more interested in getting to sleep in my bed instead of the chair in your room last night...but we did have an exciting day!

A really good friend of mine that I used to work with FINALLY got to come meet you! She has been waiting OH so patiently for the last five months; we've had to cancel our visits with her two or three times!

We're working our way through your 3 month outfits before you can't wear any of them...some of them are starting to get tight and some of them you haven't worn at all! Here's one that your great aunt got you:

And here's some video fun to cover the rest of Thursday and Friday:

We were doing some modified tummy time up on the hoppy since your legs don't straighten out, and you've got vent tubes and feeding tubes in the way and you started rocking forward on your knees like you were trying to take off!

The first time we did tummy time yesterday you did not like it at all - you did better the second time (which was the video above.) We also tried the speaking valve again when you were off of the vent for your "vent sprint" and you weren't too happy about that either. You did better today, but it's going to take awhile to get used to that. Anyway, yesterday you spent about 15 minutes telling us all about how unhappy you were!

So about a month ago you started trying to hold your mouth shut more, but yesterday you were actually sucking on your bottom lip and then you started doing this:

Today I finally found your second rattle so we strapped one to each arm and you were going to town with your left arm. I moved the other rattle to your foot after a bit because you had them going pretty good too, but then it started making a new noise and you weren't sure what to think about it. You kept watching your foot when you moved it trying to figure out why it sounded like that!

You are doing so well being home - you are growing and getting stronger every day. You love playing with your toys and talking to your sisters. We're getting in some more floor time to play and you really enjoy that change in scenery. We take you off the vent every day for your vent sprints to help build your lung strength and you are doing fantastic - I can't wait for the pulminologist to see our records next week! Keep up the good work and you won't need the vent at all much longer!

Appointments and Updates - May 21(ish)

Yes, this post is being written at 3:00 am... They have not been able to find a night nurse that can work during the week so you get Nurse Mommy on Monday - Wednesday until they do. (And everyone else gets Zombie Mommy during the day...we're all still alive though!) The weekend night nurse has graciously agreed to work Thursdays (on overtime pay I'm sure) as well as the usual Friday-Sunday nights. This week, I am especially grateful for night nurses!

Anyway, your appointments this week went really well! The pediatrician was pleased with your progress and that you seem to be so much more relaxed. We went to the Developmental Clinic yesterday and saw the developmental specialist, speech therapist, physical therapist and dietician - it was good to see some familiar faces (the clinic is part of the hospital) but also really weird to be back! The developmental specialist said everything looked like it was going well. There was a hiccup in the paperwork for your stroller but they are getting that taken care of. It was submitted with a bunch of other approval requests that all have to be repeated atter six months and Medicaid denied the chair if it was only going to be used for six months. Sigh. Yay for paperwork misunderstandings. 

The speech therapist wants us to start trying the speaking valve again when you are doing your one hour "sprints" off of the ventilator support. It will help you start working your vocal chords more but will also help with the pressure needed to swallow properly. You're scheduled to go in for a swallow study June 30 so between now and then we really need to be working on your oral motor skills and swallow ability. You do fairly well with controlling your saliva (not counting the excess drool that comes with any testing baby) but they don't know if you will be able to handle much more than that so time to get to work! The swallow study will help us decide when / if we can start introducing any purée foods into your diet or even attempting bottle feeds.

We didn't get to see our regular PT because she was out today so I was kind of disappointed about that, but we will hopefully get to see her next week when we go in for the pulminology visit because you need some new feet splints. Your legs are too chubby at the top of them now...and they stink. The PT we did see showed us how to do a modified tummy time exercise to start working in that muscle group again and wants us to start doing that five times a day for as long as you will tolerate it (hopefully 5-10 minutes each round...) as well as continue your stretches. Overall, you are doing a lot better than before with your reaching, stretching, strength stuff.

Lastly, the dietician said you have gained an average of 80 grams a day since about a week before discharge. Normal weight gain for a 5 month old is 10-15. WOW. They kept you on the excess calories to go home just to make sure you had enough energy to make the transition and get settled in but now they want to back off of that and see how you do on just breast milk. Up to this point I've been having to fortify your milk with formula so that it was 24 calories an ounce, regular breast milk averages about 20 calories so it's a pretty big cut but I'm glad to not have to use formula anymore! They'll check your weight again next week to make sure that progress doesn't nosedive. You went from the 35th percentile in weight to the 50th!

Keep up the good work! Hopefully next week's pulminology appointment goes just as well as the developmental appointment!

Happy 5 Months- May 20

How is it possible that I'm already writing 5 months?? HOW?

You have been such a joyful baby - you absolutely love everyone you meet. You love attention and smile pretty much every time a new face appears.

This month you have truly blossomed - you've started interacting more with your toys; Sophie is still your favorite but you have also taken a liking to the lion / blanket thing with all the ribbon tags around the edges because you can 1) chew on them and 2) grasp hold of it really easily. You've started kicking and waving your arms around like crazy when you get excited...I tried to video it tonight but the room was too dark - right after you fell asleep you must have been dreaming about running or swimming or something because your legs were still going 90 miles an hour! The pediatrician today even made a comment about how much more limber you are since the last time she saw you. You've also started trying to talk! Even just in the last couple of days it's gotten much more clear when you are trying to get something out using your voice. Of course, you also have a million and a half facial expressions that you are still making use of.

Although the tracheotomy has made our lives so much more complex, it was definitely the right decision for you. You have grown so much in the last month because your body isn't having to use all of those extra calories just trying to breath. At the doctor's office today you weighed in at 15 pounds 1 ounce! It is also very evident just in watching you that you are much more comfortable and relaxed, you don't struggle nearly as much just to keep up with little things like staying awake for more than an hour at a time :)

I love you so much and am so glad to finally have you home with the rest of our family. I can't wait to see you continue to progress and catch up as you get stronger each day.

Sleep well Baby Girl!

Annnnnd.....she's out!

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. 

Trip #2 - May 7

We took another trip today - this time in our loaner stroller! It's AMAZING! The company rep was there to get more measurements and tweak the seating and take notes for our set-up. This model of stroller is a little different than the one we'll get but it's still awesome. 

She loved being out of bed (again) and sitting up so straight; refused to smile (again) until the nurse put the phone down; and still wasn't quite sure what to think of the fish.

I have three more things on my trach training checklist to learn tomorrow...and Daddy's going to have a fun Sunday =/ We're still on track for our family conference (with all the doctors, home health company, nursing agency and the nurses we'll have, specialists, etc) on Monday morning. The (tentative) plan is for me to stay Monday all night, all day Tuesday and then go home and get a good night's sleep before Wednesday.

Everything with the ventilator has stabilized but she's having trouble being on the trach collar without oxygen so they are trying to figure that out so we won't be tethered to the vent because it is a pain for mobility purposes.

The last bit of fun news is that we got moved into one of the private rooms! It's mostly because her corner is looking a little junky with all of her toys, the swing, the tumble form chair, the vent, the trach collar and now the stroller so they're giving us more room... But it also means we're on the right path to getting OUT!

Yeah, that's all us. From the swing on the left to the blue and red chair up top on the right.

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!

Oh Monday... - May 5

Quick update before I crash for the night:

1) got back on the trach collar today...with oxygen. They started you out at 28% and got you down to 25% by the time I had to leave. Goal is to increase length of time on collar and off vent while weaning off the oxygen. We're still going home with oxygen but don't want it to be a mandatory thing.

2) Mama got more vent training...which will continue every day this week... I just love new machines with lots of flashing lights and numbers and important settings =/

3) tomorrow we're going for a ride! Hopefully the loaner stroller was delivered this afternoon because we have a big trip tomorrow...all the way around the unit! 

4) everything is flowing smoothly so far to get out on the 14th; we've got everyone (dr, PT, OT, ST, RT, home nurses, NICU nurses, pulminology staff, medical supply company) on board for our Monday meeting. The case manager is trucking along with approvals and requests (the latest being the decision that she needs a hospital style crib at home for easier access and ability to position better). 

5) Dr. C (new face!) who is a PT (head of therapy department??? Don't remember...) came and did an evaluation. We'll continue to see him as an outpatient as well.

6) you got some play time on the floor with PT and ST and loved it! Then you got to sit up in your tumble form chair and make sure the trach nurse was teaching me correctly... You were listening pretty closely!

7) you still love Sophie best :)

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!