Saturday, March 31, 2012

Our First day home..

Boy is it great to be home..there’s no place like home..there’s no place like home..and especially to sleep in your own bed..awwww!!!  When we got home last night..the older girls were ecstatic to see us..the babies not so much..well they walked right by me and wouldn’t come to me but they did go to Jared right away…I guess they were mad at me..:( and they really didn’t warm up to me the rest of the night either.
After supper they had everyone over to celebrate Kevin’s birthday { he drove Greg’s car down here for him} and also a chance for everyone to say goodbye to Wesley and Joyce { my in laws..Jared's parents} they have been staying here since Brielle’s surgery..they bought a camper here and have been staying in that..but while we were gone they just stayed in the house with the kids….Such a blessing that they were able to that..but they left today to go back home to SD. Now that all of there grandkids are here except one we might see them more frequently though. One more brother and his family have decided to move down here from SD.
So today we were left with finding our new norm and getting back in to the routine of everything..It didn’t go so well…well there were good parts and there were bad parts too..I thought I would try to see how Avery would do without pain medicine or muscle spasm medicine…well it didn’t last very long and she was screaming owie…so then I felt bad for even trying..I guess just be on top of it until at least Tuesday..they told me two weeks after surgery for sure there would be pain….She just gets so giggly and loopy when she is on the one pain medicine..even my girls think its funny..they say..Is Avery on her laughing gas right now???  lol! She will just start laughing for no reason..u look at her she will laugh…you come near her..she will laugh..u talk to her..she will laugh…and almost everytime she will get me to laugh too..
My main goal was to get her cleaned up..she needed a really good hair washing and sponge to do that of course it is no easy task…{ I might go into some details about taking care of her in general in a spica cast..bc it might help someone else that is bout ready to go through a similar situation..and I seen that people were coming to my blog by searching spica cast..I know that is what I was doing before..doing all the research that I could..} we layed her down on the counter under towels and using the kitchen sink gave her a sponge bath..her hair…oh how her hair needed a really good washing..and conditioner was soo tangly..I would def make sure her hair was done in the middle with a pony on each side next time before surgery it would of eliminated a lot of the snarly bed head I think…
So Avery’s cast is removable where you can take the top off and give her a sponge bath under it too..
I have a sprayer on my sink that worked awesome to wash her hair….
DSC_0566 much better..all cleaned up..
Note to self..find lots of cute hairstyles that use pigtails..its easier to have it parted in the middle bc of the way she has to be on her head the whole time..reduces bed head..and snarls.
When I was giving her a bath I seen that she got pee on the cast..and I could smell it too..this is not a good thing..we have way to long to go with this cast..we cant have it getting smelly already..and I think it creeped up the back at night when she was sleeping. So I tried to blow dry it using a cool setting and we aired it out all day..kind of..and by tonight it wasn’t as I pulled out the duck tape..and taped all the way around the cast on the back around her bum..hoping that if its duck tape it cant absorb it..and also I had bought some big overnight poise pads so I put one of them in the diaper to help absorb some of the pee also at night..{we are using womens diapers..not sure if u can buy them at the store yet or not..the hospital gave me plenty to get by with..} At night is the only time we have a problem..bc she actually goes to the bathroom on the regular toilet very well..she just sits on the very back of it and then goes..and I just hold a wipe up in front of her to shield it back into the toilet..I tried my funnel again that I bought but she still wouldn’t go in it..stinker!! so this way works too..I also stuck a long maxi pad inside the cast along her back bum too..I wonder how everything will look in the morning..So do you want to hear what kind of conversations this opened up with my older girls..Destiny and her curiosity..its going to get the best of day..well lets just say that both my older girls now know about periods..and as Destiny puts it..not just a period at the end of a sentence or a period in math..a period…lol!
One other I was giving her a bath…I noticed a small bubble on her is filled with puss I believe…is this something I should be alarmed with??? what would cause it??? its about the size of a pea..I just put a bandaid over it for now..I also made sure I examined all of her skin for other sores coming from the cast and I didn’t see any..
So when I went to get the babies out of there cribs..Jianna threw a fit..she didn’t want me..she wanted Grandma..and they had already left..Jianna apparently doesn’t like change bc she had a lot of problems today..they kept walking around looking for grandpa and grandma in the beginning. Jianna threw a fit when she went to bed for a nap..she threw a fit when she woke up..she threw a fit when I took a shower..My babies did a switch one me..Jayla used to be the one that stuck right by mom and Jianna was the happy go lucky one..but they switched..Jayla is just fine going off to play..while Jianna likes to stay in your eye sight. Jianna likes to be covered up exactly a certain way. and if u mess it out. jayla always loved hanging out in the bathtub also..nope she wanted to be the first one usually dragging her out..I wonder what else we will notice about them that has changed..
The girls are having fun with all of her new stuff and did a good job keeping her entertained today…BUT I wonder how long that will last???? This next week they are off from school all week bc it is spring im not sure if that is a good thing yet or a bad thing…im thinking it is going to be a good thing for the most part..but today..I don’t know..Brielle wanted me to keep coming up with arts or crafts projects to do with her…she kept getting bored..I told her finally if she came to me one more time saying she was bored..I would put her to work..I felt a little overwhelmed..I had the babies needing me…Avery needing me and then Brielle wanted me to help her set up an activity..  I just got to keep telling myself one day at a time!  It was def a jammie day for the most part..and I don’t even want to share what we had for dogs…yummy.huh?? I need to go grocery shopping tomorrow..
I had gotten her this lap pillow thing a long time works great..she can use it as a hard table..and colored with Brielle today using it..and also uses it to prop stuff up on it..glad I picked it up..
But in the midst of it all..we did manage to squeeze in some fun time…My girls love picnics..they don’t care where ever..and I figured it would be a great thing to we had a picnic in our front yard..and it was great….it was exactly where I was suppose to be..just spending time with them..and everything else could wait..I didn’t even care..I did run around like a mad woman when my three babies where sleeping.{yes it feels like I have three babies..}.trying to get everything done..but managed to go on a short bike ride with the older girls too while they were all sleeping..When you don’t see your kids for almost two weeks..nothing else matters when you get home..just want to soak up everything you missed..and listen to all there stories..and just let go and have fun..did I have a million other things to do.???? Sure but it could all wait…or be put off… {btw..a bean bag works great for her to sit in too..} our is just a little flat..I bet I can buy more beads or something and fluff it back up..
I think I need to be on the lookout for a wide bum umbrella stroller..maybe a foreign one..bc that wheelchair is HUGE!!!! I hit to many things pushing it around..just sayin. and the one that we used at the house worked ok..but I didn’t recognize the brand..and I already forgot the name..
I have myself a reminder I can remember when she gets everything..gets kind of confusing..
Well that wraps up our day..

Friday- our flights home..

Like I said in the previous post we didn’t end up flying home on Thursday..we flew home on Friday..flying home with a post op patient is not my idle situation..especially one that uses a bed pan to go to the bathroom…and we fly into small airports so there is no changing table or anything to take the big diaper was very interesting..Jared made his way into the girls  bathroom to help one time..{don’t worry there wasn’t anyone in there..very small airport..everyone knew we were in there..} one of them didn’t have a wheelchair so we had to carry her..very interesting..something I would not want to repeat anytime soon..and to top it off I was very nausea on EVERY plane ride..I did not feel very good..
I told her that it was time to get her medicine and she wasn’t very happy about it..obviously…
Good-bye Boston….
Such a great morning…it was so beautiful..the way the sun was hitting the water…
Hello New York can vaguely see the statue out in the water…look really close..or put on your glasses…
Is that some place you would want to live…hmmmm nope!!!
All of us with Steve the first pilot..who was also our last pilot when we flew to Boston..
All of us with our second pilot bob..who flew us from Philadelphia, PA  to Lynchburg, VA..he was our pilot in the middle of our flights last time too..
Do you remember from my post of us flying there..I showed you a picture of smoke up in the clouds???? well this is what produces it…
Our third pilot…that flew us from Lynchburg, VA to Greenville..he is from Ashville..
and our third plane..I didn’t take a picture of the other planes bc they were the same ones that we rode in before..but this one was a new plane and new pilot…
Woohoo!! Jared actually let me sit in the front for one plane ride out of six..not bad..huh???  it was pretty great..he said he would let me fly if I wanted to..but I chose not stomach wasn’t feeling very great on this one..and he assured me he had a puke bag if I needed!
But we made it with everything still in tact and nope didn’t loose my that always a plus!!;) Its so good to be home..when we were flying home over Greenville it was so neat to see all the azaleas blossoming and the pear trees, and the pink cherry trees…and also everything is SOOOOO GREEN here…we both picked up on that right away..and of course the weather is more my kind of weather..oh yes there is no place like home..home in the Carolinas!!!


We survived our first day home..I know I probably have some of you confused….Well we were suppose to fly home on Thursday…that was the original plan..but apparently the weather didn’t want to cooperate and it there was ice in New York where our first pilot was flying from so he had to that canceled our whole we moved it to we didn’t get home until around 5pm on Friday. Which made for a very long day of flying bc we left Boston around 7-715am.
So that left us at the house all day on was not really fun…and I was so disappointed about not getting to leave..and so where my girls. We just hang out all day at the house..I did our laundry..we found a bigger foreign umbrella stroller that fit Avery so we did venture out to the grocery store to get a few things for the next day of flying..Can you believe that a pound of ground beef…not even the lean kind costs..wait you are not going to believe this…$7.50 a POUND!!!!! Isnt that INSANE!!!!  I thought so.and Jared got a pack of smokes and guess how much they were….$9.00 we both about fell over..nine dollars for ONE  pack…and taxes are so high in that state..its one of the highest rate states in United States. We were talking to one of our nurses about house values and she said that they were looking to buy a house that was outside of Boston a little bit.a basic 3br/2ba and they couldn’t find anything cheaper then 250,000-300,000  and that isn't even a new house…that is one that needs a lot of work done to it. Wowzers!!  Pretty sure I really like SC!!!;) and lets see we want to elect Mitt Romney for president whose home state is MA…hmmm…Im not a Mitt Romney fan…I'm a Rick Santorum fan…just in case you were wondering..but Im not going to get into politics on lets change subject..k
Anyways here are a few pictures from the day..
Right before we left our room..Traffic Jam over some geese that would not move out of the middle of an was crazy..and people were getting so mad..people have NO patience there..especially when it comes to driving..
It was so cold out during our walk…and Avery thought so to..she covered her whole self up while we were walking..this girls cracks me up!!  she would stick her hand out the top and wave a little wave..then stick it back in and say…brrr….lol!
Does anyone know what this is????? This is THE Harvard Medical School!!
I took this picture bc I wanted to show you all the houses I was talking about..well I might not of told you all about them..but check out there houses..they are like townhomes I guess…just lined up down the street..
Our home for the last week…Children's Hospital of Boston..
This is what happens when you are at an intersection and it says walk…Pure craziness..all traffic stops from all directions..and the intersection just gets slammed with people..
Well that sums up our was really hard taking care of her there bc of the whole bathroom issue..but we did survive!!;)

Wednesday, March 28, 2012

Day 8

We are FREE!!!!  Woohooo!! I cant believe it…We got released around 5 tonight. Ya’ll should of seen us trying into our was a HOOT. Jared and I kept giggling about it. We couldn’t get a wheelchair bc it wouldn’t fit in the airplanes so we just said that we would just carry her. The sidewalk was lined up when the taxi driver drove away..and here Jared was carrying he wasn’t much help..but did take one I went in an got a stroller and loaded it up..well I loaded it so up that it fell over..and I have like three bags on each side of me did we get so much crap at the hospital is beyond me!! Well anyways we get us all in the elevator and Jared drops his bag and it goes everywhere..and I get the stroller out of the elevator and once again it tips I  lean over to get it and about fall over myself bc I'm kind of top heavy with all the bags I'm Jared just stands in the middle of the elevator to keep the door from closing and keep Avery from falling then I go in the elevator to pick everything up..and come out to try to get us down the hallway into our room and I hear the door shut on our room..Putts..he went in our room and let the door shut with Avery..big Putts..don’t worry about me..I got it all under control.Winking smile {but on his defense Avery is very heavy and hard to hold..} Once I got in the room and threw everything legs KILLED!!!  the top of my thighs. So I hope you all had a good visual of us…if me it was pretty hilarious. its going to be even more funnier on our way to the airport with even more luggage and no wheelchair. It will be interesting to say the least. 
Her hip x-rays looked great the dr said. Her hip is still in place which gives me relief bc I swear I heard the same popping noise right after her surgery and she was only moving that one leg that was in the cast..Dr. Kim said that there was no way but he would do an x-ray before we leaved anyways so we would be able to tell.. He said he moved it around many different ways during surgery and it never came out. So here is where I have to and just know that she isn't going to be able to pop that one out anymore..but the other one..well its almost like she is going through withdrawals on not being able to pop it out so she pops the other one out a lot more.
I got a chair massage last night..boy was that nice..they have it up on the ICU floor and asked if I wanted to go for one and I was thinking at first it was just a chair that you go and sit in and it massages you for awhile but no it was an actual massage lady but instead of laying on a sit and your face is in the chair and the rest of you just curve around the the ones that you see at the mall or something..but the lady was really relaxing. and it was short lived..very short lived like only 20 minutes but hey its free and it was just what I needed!
We are to follow up with her orthopedic doctor in Greenville in 3-4 weeks. Where they will get another hip x-ray. And then I don’t know what we will do..if we have to come back up here in anther 4 weeks or if they will take care of it there. we will see I guess.
She is more gunky like I said but the drs said that she just needs to clear it out and right now its nothing bc her lungs sound clear. Just watch her and if she gets a fever over 101.. But she is very more prone to get respiratory issues.and sicknesses.and she said to stay away from extra places where germs live..and have people wash there hands more around her. so she doesn’t get any sickness bc with the cast on restricts her breathing some and she already is more prone to get pneumonia bc she gets it alot . So what do you do??  SHe must not realize that I have two kids in school who bring home everything and two two year olds that are full of snot and colds all the this recovery could be pretty interesting we def are not out of the woods yet.
While we were eating our supper there were two other moms there with there boys who also happen to share that same extra chromosome that Avery has. So we chatted for was there for there neck and one was there for there cardiologist appointment.
I also meet another couple in the hospital family room one night on the heart ICU unit when we were up there such a neat family..we actually kept running into each other and after her husband went back to MN {where they are from} we met up for lunch yesterday and then we had breakfast and lunch together today.We hit it off right we were long lost friends..really it was was go good to just talk to someone that really really understands.and just laugh and take our minds off of everything else...but they could use lots of prayers for there little girl..she had heart surgery actually this isn't the first one..and today she was telling me that she has developed an infection. and they still have a long road of recovery ahead of them.
Also one more prayer you remember that sweet girl that came to see us wearing the here if you dont remember..but she is having surgery tomorrow here at Boston Childrens Hospital..she could use lots of prayers tonight as I am sure her nerves are getting the best of her..and tomorrow morning and also for a smooth recovery.
We leave to go home tomorrow.I can not wait too see my other kids...Prayers would be greatly appreciated! It is going to be a long and rough day. on everyone especially Avery. and im not sure how everything is going to work out…especially the bathroom situation bc she is peeing in a bedpan and well as you can imagine it isn't going to be easy at all..
Some pictures of course…
Avery got a sponge bath last night…im not looking forward to them at all..
This is how I found her when I came back from lunch…she had slid down in her bed..silly girl..
Our ride out of here!!

Well I suppose that wraps it up…I need to be getting to bed..I don’t have nurses anymore so I have to set my alarm clock to get up with give her her medicines and also to reposition her.
Thank you again for all the love, support, and prayers for us during this time.and in the coming days. We really appreciate them and all of you!

Tuesday, March 27, 2012

Day 7

Today has been another good day. I think we have turned the corner...and are heading up.. Cant belive its only been a seems like we have been in the hospital way longer then that.
She is starting to eat a lot more and be back to herself more. and more each day. She sat in the chair for quite awhile today..
Im still not getting hardly any sleep..I need to teach Avery the night nurses name before I go to bed…she will yell Ma….Ma…Ma…Ma.. and on and on until I respond..then I will say what..and she says I start to get up and then the nurse sees me so then she comes in to help..and then the alarms from her sleep machine of course keep going off..THEY ARE SOOO SENSITIVE!!!!  I forgot her chin strap at home and air escapes out her mouth when she sleeps and apparently it is to much air and they don’t have a chin strap here of 
Fever has gone away..and hopefully will stay away.
We are staying on top of her pain medicine so she isn't in any pain…although more movement seems to bring on more she don’t move to much
We had to do a hip x-ray this morning but haven't heard or seen it so I don’t know if everything still looks good..I sure hope so…it better anyways..
We are trying to work everything out to come home on Thursday. They are still talking about letting her out on Wednesday or Thursday really early..if the let her out on Wednesday it wont be until later and then we will take a cab to the house we are staying at and then just stay there for the night..and then get a cab to the airport. Getting home is going to be really tricky bc we wont have a wheelchair..also it is going to be really tricky staying in that house too..but we will manage I'm sure.
Nothing is growing in her cultures that they took yet so that is good. but we have to give it 72 hours for sure..
They decided not to give her a chest x-ray for the time being..not sure if I like this or not..bc she has been more gunky sounding and coughing more..and so I am a little worried/ paranoid that she might have pneumonia and may be aspirating on her liquids or something. bc once upon a time she did do that..and used to get  pneumonia bc of it. and she will cough sometimes after she drinks..{which is a sign}
We had a false alarm today..her white sticker must of slowly been coming off of her..bc I was watching it and the numbers slowly started to go down…and then all of a sudden an alarm goes off and it is blank on the screen and I look at Avery and she looks at me so I know she is ok but then you should of seen it..EVERYONE was outside of our room..all crowded around..and then I reassured them that she was fine..
The medicines are making her a little loopy I think..bc in her sleep she will let out a giggle..and she is little bit more giggly when awake too
Heres some pictures from the day…
The music lady came by again today..but I really don’t think she likes this always looks the other way and never wanted to make eye contact with
See that leg up…so flexible..and the other picture is going for a ride in the wheelchair to go get an xray

Thanks for all the prayers for my uncle..he seems to be doing better..they let him out of the hospital the next day…

Monday, March 26, 2012

Day 6

She has made a complete turn around from last night..which is good news…She had a rough night..and was up a lot but today she seems to be WAY better..We might of found the happy medium dose of 1.4 mg  .4 mg less then what there were giving her{ putting this in my notes so I will know next time} of oxycodone that doesn’t knock her completely out..but still seems to be controlling her is giving around the clock every four hours along with her valium every 6 hours. and Tylenol every four hours to control her fever. which seems to have dropped some but hasn’t gone away..has been staying at 99.4 with Tylenol in her.
They also came today and cut away the cast that was digging into her incision on her right leg. and she seems to be way happier with that too..they made a few other cuts to fit her properly also. and to accommodate the swelling for now.
They are going to do a chest x-ray later on today/tonight to see if maybe pneumonia has set in her lungs.
Her heart rate is still higher then normal..they are still thinking it might be bc she may be dehydrated..they took her off of her IV fluids during the day and might put her back on them tonight..but the girl has been peeing like crazy today and everything has been going good with that..she pees really well in a bed pan which is great…
She is starting to eat more again today.
She is really starting to be herself…and talking more so that is good to see..
We are looking at getting out of her on Wednesday or Thursday morning and flying home on Thursday..talked to the pilot today..Steve is actually going to be our pilot again for the first flight and I think Bob is going to be our pilot again for the second flight so that is great..bc we already know the pilots..but we cant get Benton the other pilot bc he only flies on the weekend..
Can not wait to get out of here…its been too long since I have been outside..apparently it has gotten cold again here..and of course I miss my other girls like crazy…
And here are some pictures girls…my girls were wondering how come I haven't put any pictures up lately..
Avery decided she didn’t want to see anybody anymore..she had had enough!  Her sitting in a chair for the first time
This girl loves George!!!!  Has been a huge quieter down…she starts watching George and will start quieting down..gotta love George!!
There's that smile..I love!!!
Daddy coloring with Avery…Jared found George with an invisible marker…I used to love them…anyone else..I have not seen them in forever..Jared claims he never has did one before…I think he has been! Avery had fun doing it anyways..
Avery had some visitors today..Yay!!!  It was so great to actually see some people and talk to them other then medical people and the computer.  Thanks for the visit and food…{it was very yummy..:)}
and the gift..Avery loves these magnetic dolls..Another thing that I loved to play with when I was a kid but don’t find ever..I actually had to make my girls some bc you cant find them anywhere..I think I need to scope out hospital gift shops more often…