Day 6-Discharged..and Our flight home

We stayed at the hospital until  2:30pm..which worked out really nice bc I could eat lunch and I tried to get Avery to eat lunch too..but then she was pretty tired around noon so she slept until it was time to leave..discharge was very smoothly. I got all of her medicines filled at CVS on the ground floor of the hospital in the morning so I had all of them.


Sleeping in the taxi ride to the airport..

We flew home with US Airways and it was a very pleasant experience for the most part.. We were dropped off in front of one of the US Airways door and there was suppose to be a person there holding a sign with my last name from Massport. So as I am standing there I see the person way down at the other door…How in the world am I going to get down there..I have two backpacks..two duffel bags..and computer bag..purse..and one little wheeler backpack..so im standing there for about 5 minutes and know I have to get down there..so I try to put as much on the stroller as I can and all of a sudden while I am bending down to pick up another bag..down goes Avery..she tipped over backwards in the stroller…she wasn’t hurt or anything..bc the bags caught her..so then I caught the attention of a lady that was at the desk that was checking people in curbside and asked her if I could get some help…so she sent a guy down to help me and then we put all of our luggage on the cart and went up to the lady.She was the best thing ever..Soo very helpful…When we went to go get our tickets I put my four very small bags down and airline lady says did u know it was $60 per bag???  Ummm what???!!!  So I showed her the letter I got from the organization that bought the tickets for me and explained that it was a medical flight and two of the bags were just medical supplies..and so she said that she couldn’t do anything but she would call a supervisor over for me..so after waiting FOREVER..and talking to them..they waived the bag fee for us…Thanks be to God!  So after we got all tickets and stuff we had to go through security but having that lady with me she got me right up to the front and we didn’t have to wait in the line..and she was also able to stay with my stuff while I dealt with Avery through the security. and since we were carrying narcotics we had show letter from dr…but otherwise it was ok…they just checked my bag over a little bit more..but I was ok with that..as long as I could bring everything through that was in there..bc I had a couple of unopened Gatorades for her and also a package of juice boxes too..and then we just got to the gate and waited…the bathroom was a little tricky in that airport bc they didn’t have a little bathroom that you could just go in an shut the door.. but luckily it wasn’t busy so it worked out.. and then I just carried her onto the airplane and checked the umbrella stroller in curb side..When we got to D.C. we just waited until everyone was completely off of the plane and then I just carried her off..and then a staff member carried my other bags to my next gate. And when we got to the gate he asked the ladies behind the desk if I could just leave my bags there so I could go and get something to eat..he also gave me a punch card that gave me a free combo meal from a place..so we got free supper then too..he gave me two cards but  I gave one back..bc Avery wasn’t eating so I didn’t even need it..but she did manage to eat some pretzels from the plane and a few of my french fries. They were so very helpful to get us on the plane in D.C. too..Our plane was kind of late taking off bc of some maintenance we we didn’t get home until 11..and we were suppose to get in at 9:30. SO Avery was very tired when we got home and went right to sleep…

Leaving Boston..



George had to have a seat too..and he probably got more food then anyone on the plane.. the flight attendants really like him I guess

We flew into D.C. and so you could see the White house..and the Washington Monument.


Will post later about our first day home…

Day 5

Today was a great day!! PTL!!!  We finally turned the corner..we had a very rough night last night…They were going to give her iv fluids during the night bc she was behind but then the IV ended up being no good anymore..so I woke up to her screaming..and there were three people over her with the head lamp..and they were trying to salvage the IV…they worked on it for at least 30 minutes trying to save it..and the whole time she is screaming…and  then when they thought they got it they taped it down really good and started the fluids and NOPE….didn’t work..so they just took it out..and she was happy:) she hates them IV’s. So he had to go check with the nurse to see if they were going to make him put a new iv in or if she would be ok through the night…thankfully they said that she would be ok through the night and to keep encouraging liquids through out the night..

Also today we had to play around with her pain/valium levels again..bc right away when she woke up after we moved her around to go to the potty she was crying in pain..and then we put her back on the chair she was out…so we lowered her valium dose to 1mg..and spaced that out every 6 hours..and then lowered her oxycodone to 2mg every 4 hrs..with Tylenol every 4 hrs. too..and it worked..She stayed away all day..couldn’t believe it..you should of seen her eyes tonight…very red and very tired looking..she played around and did things…and we moved her around to the chair and back and forth to the potty and she seemed ok..every now and again the first initial move she would say owie a little then would be fine..but I think some of that is the cast rubbing on her while moving her..
She had a bath today and really enjoyed that…no crying…she really did have a great day..
She painted..

she colored..

she blew bubbles..

she smiled...

she laughed and  giggled..

She did eat some lunch..spagettios..but it didn’t stay down..she threw that back up with in 5 minutes of eating..but she has kept all of her liquids down since then..at supper she did eat half a yogurt and maybe a couple grapes..we really pushed liquids today…and so far soo good..we didn’t have to redo IV..
We had visitors today..and it was sooo nice…Jared’s mom’s brother…Steve and Nancy came to visit us today..sooo nice..Nancy stayed with Avery for a good awhile so I could get away..so Steve and I went for a walk in the gardens and then went for supper..very nice to just get away and not hurry back…and relax..Avery really enjoyed playing with Nancy too!! 

Avery with her nurse..Callie..we have had her the most..its so nice to have the same nurse over and over again....Avery loves her..we had her fri, sat, and then sun all during the day..Check out her eyes in the picture…this was at the end of the day…tired little girl…haha

Sounds like everything is still good through the night and tomorrow morning we will be released to go home tomorrow..yippie skippee!!!  How exciting is that..

A little nervous about flying commercially with her tomorrow...praying everything goes smoothly..we are also going home to sick kids..a little nervous about that too...we could turn around and be back in the hospital again with her down there..the dr said to keep her away from colds and sickness for awhile..ha! It would not be good for her to get a cold/sick in the cast..the whole breathing thing would be really bad!!  Praying she stays healthy...

Thank you all for all of the prayers, thoughts and love...God is good!! 

**"For I will restore health unto you, and I will heal you of your wounds, saith the Lord." Jeremiah 30:17

**"I am the Lord; who heals you." Exodus 15:26

Day 4

Soooo today I thought was going to be a good day..bc when we woke up the nurse told me that overnight her heart rate was really low so they could tell she was comfortable and not in pain…but then she also comes in and with a dose of one of her medicines and I ask how the night went alternating them..and she says OH well he didn’t give them to her last night bc she was sleeping so good…he didn’t want to wake her…soooo guess what we were doing all morning…playing catch up!! she was very itchy and cranky..and just really crabby..so then she got another dose of tortol via IV too..and then once she got the Benadryl after lunch time..(which no she did not eat lunch yet) she was out and has been since..and its 430…she is way knocked out though.very unresponsive .the dr just came in and said maybe too much..her pupils are really small..she says good thing we are in hospital so they can monitor her..bc she is at a level that would not be safe at home..thanks that makes me feel very uncomfortable…she goes on talking about her very possibly effecting her breathing…and so on..and I am thinking ok..are you serious??  and then not even five minutes later her breathing stats dropped down to 5 many times..so pretty soon you see two doctors and a nurse coming in the room to check her stats manually instead of the machine..freaked me out..but many hours later she finally came to..we just didn’t give her anything until she came too again..and then gave her her valium..and Tylenol and then waited a few hours and gave her her oxycodone.
Also she says that they got off the phone with ortho dr/surgeon and they were not comfortable with giving tortol to her and wanted it stopped right away..bc it slows down bone recovery and new growth..and not to give ibuprofen either..they were talking about stopping the tortol and starting ibuprofen on there rounds this morning.…are you serious?? we are on a roll here!! 
So the plan of action is to stop the tortol and to just give her oxycodone and valium..and Tylenol for pain…and they are decreasing her oxycodone level again back down to 2.5mg bc they think that is knocking her out too..and giving her something else for the itchies besides Benadryl..bc Benadryl can make you sleepy too…and mixed with her narcotics might be just enough to knock her out..Well now I know why her heart rate is soo low.and her breathing too..bc she was knocked out!
She is still not eating..we tried pediasure..no go…she says ewie..we tried ice cream shake..she says ewie..we tried everything you can think of.she has zero interest in food!!  she will drink but not a whole lot..this morning her pee was really dark..and very little..and if she is so knocked out that she isn't even drinking they made a comment about putting her back on IV fluids bc she could be behind..***She did eat a little bit of spaghettio's for supper along with some yogurt…***
Its really hard to see us leaving on Monday right now..but the floor dr said oh yes..she can see it..its all about tweaking it…well the girl hasn’t even been out of bed..we were going to get her up into the chair today…and we got her up once to go to the bathroom and she was screaming/crying…so we put her back in bed..we cant even move her with out her screaming..how can we possibly go home…she was going to get a bath today too but nope she is too out for that too…we need to check her cast for sores…
Her fever is all gone and has been all day today.
They will need to check her incisions before we leave too and make sure that there are no infections there..and they still haven't did that either..
WE did just get her out of bed to go potty and had some more poo action so that is really great news!!!
She has one eye that is pretty pink on the inside of her eye but dr said it doesn’t look like pink eye so that is good..just watching for drainage and if she itches it..
We had some more visitors today..Yay for visitors!!! I met this mom who also has a child with ds on Monday in the ortho clinic while I was there for the pre-op..she was there bc one of her other daughters had broken her arm..but anyways…we connected via fb and was going to be at children’s hospital today so she stopped up and visited us for awhile….Was that ever nice….to actually just talk to someone for awhile.We actually have a lot in common which is awesome too...she is actually the one that turned my name into that organization Heartbeats for Down Syndrome that gave us the goodie bag..I just LOVE her for that!!!
Hopefully tomorrow is a great day for Avery and me

Day 3

She had an ok night..she woke up many times..and they gave her extra bolts of morphine then..she also had her fever through out the night.so they are still giving her Tylenol for that..They stayed on top of her valium and gave that every six hours.
Our plan for the day was to get her pain under control and stay on top of it…to try to get her up and out of bed..and to get her to eat..and to get a little poo action….
She had a lady from child life specialist come by and try to cheer her up by making a necklace with her..she was kind of into it but it was before things started to go sour.

Her new necklace..

So for breakfast she did eat an applesauce. So we are making small steps…But then she wouldn’t eat lunch..but she did eat a little bit of yogurt at around 3:00. She also had a few bites of ck noodle soup for supper and a couple more bites of applesauce at 9:00..
She also got another suppository and we got some poo action!!! Wooohoooo!!! Never thought I would be so happy to see that!! Its all in the little things…right;) Small steps
We had to monkey with the cast again today..there was a spot on the back and a spot right on the inside of her leg that was digging into her leg..so we had to lift her up and remove the back piece and then ace bandage her to the top of the cast. and then the cast guy took the bottom cast and sawed away some of the parts that were digging into her..and added extra padding and then came back and we had to lift her up again and place it under her and then strap her back into it.
She had to have an x-ray to see if after all the moving around from the cast changes the hip is still in the right place…it better be is all I got to say about that;) but we wont know until tomorrow..The neat thing was that they came to our room..we didn’t even have to move Avery..



So know for her pain…did they stay on top of her pain and keep it controlled??? NO!!!! It has been a rough day!!!  Really rough….This morning they switched her morphine IV over to oral oxycodone. Her dose was 2.5 mg. They were thinking that it would control her pain better. But the key is if the oxycodone will stay down since she isn't eating and it can tend to upset the stomach. So for the first dose we left her hooked up to the morphine for 30 minutes after so that way if she needed an extra boost until it kicked in she could get it..or if it came back up..it never came back up so they removed the morphine IV. And was just giving her oxycodone and valium for the pain. But then came the cast change and caused a lot of pain…so we gave her 1mg of morphine via IV again to keep her pain under control…Well it didn’t work..it all just kind of went down hill after that..we were starting to go down hill before that but we just went faster down hill..so to say. she was crying and she was inconsolable..last time watching George usually quieted her down but not this time..nothing worked. She didn’t want anyone to touch her..she cried if we moved her pillow..we cried if we moved her at all..no smiles..very sober..We had got her up to go to the bathroom (bc that is what the dr wanted to get her out of bed earlier) instead of going on the bed pan and she just started screaming bloody murder basically…so we put her back in bed. and gave her dose of oxycodone..and then after awhile she fell asleep and then she would have spouts where she woke up and started crying and her heart rate sky rocketed and looked in so much pain..and kept saying owie..so I asked them about it and then they said she clearly is not content..the dr on the floor seen that..so we put a call into the pain management team..and the nurse was talking to them on the phone while Avery is in the background crying..and she gets off the phone and tells me that they don’t want to change anything..they want to leave everything as is…IT CLEARLY IS NOT WORKING THE WAY THINGS ARE GOING RIGHT NOW!!!!! and so she says let me go talk to the drs on the floor and see what they say..and so the dr comes in and says lets give it 10-15 minutes and see if she calms down bc we just gave her a dose of valium.. (which we didn’t change anything doses or anything so why would it change anything now) and if it still doesn’t take care of her pain we will call into the pain management team again. I kind of lost it!!  I was sooo mad!!!!!!no I was IRATE!!!! and so was the nurse bc she had seen what I had all day too… so she was behind me too. I have been going on no sleep and I have seen her suffer for the last 24 hours since the epidural came out with no relief from pain.I'm pretty sure I got my point across…bc with in 20 minutes they had the pain management team in my room instead of talking to them over the phone! The one thing that ticks me off is Dr. Kim her ortho surgeon dr. was so adamant about taking that stupid epidural out so fast…and then they cant even control her pain.!!!!!!! and is he sitting in the room with her listening to her scream bc she is in pain????? NO!!! IS he even in sight???? NO!!!! Has he checked on her since they have taken it out???? NO!!!!! He isn't even in the same hospital..he took of to MN for a conference!! 
BUT we have a new plan for her pain..so hopefully this one will work…They upped her oxycodone amount to 3 mg. her valium is the same amount. they gave her  1 mg of morphine for instant relief. and it is on standby in case we need it again. and the oxycodone and valium are to be given every two hours rotating between the two..so she would get oxycodone then she would get valium two hours later then oxycodone..and so on…They also started her on tortol. I guess it is suppose to be a great medicine to relive bone pain with out making you sleepy..UMMMM HELLO????? WHY wasn’t this prescribed earlier then this afternoon??? that is given every 6 hours via IV…So we will see I guess..right now she is sleeping but I think she needs a little bit of good sleep with out pain..bc she is sleeping and she isn't waking up with her heart beat sky rocketing and her spurts of crying then falling back to sleep.  She slept for a good long period after starting this..and then she woke up a bit and played on a magna doodle…and ate a few bites..and played on her iPad for a little bit..but then she got the case of the itchies..really bad….so we had to give her some Benadryl….so hopefully that will take care of the them..
Also so we just got everything onto a two hour schedule..and then the night nurse comes in and i get back from supper at 830..and ask if he gave her her valium that was suppose to be given at 730...and he says no bc its every 6 hours..and i say no it s every four hours..so he looks in the computer and i guess there was a write up for one for every six hours (an iv one) and one written for every 4 hrs (an oral one) and so now we are off schedule again..and so we have to push the oxycodone off one hour to get back on schedule..can i just scream now or what??!! AAAAAAHHHHHHHHHH!!!!!!!!!!! 
Occasionally when she was crying today she would put her hand on head to cover her eyes..she fell asleep with it over them so I had to take a picture..

I had been leaving while she was sleeping to get something to eat..but at lunch time I came back to her in her room just crying…that was hard..it made me mad..so I don’t want to leave her now..
We took one IV out of her hand today too..she was not happy about that either..she moved her hand a little too much and the cotton ball slipped off and we had quite the fountain of blood flowing from her.'Bc it hadn't clogged up yet.
We had visitors today..Lexi..a friend I have met via fb and I have also followed her blog for awhile now..she also has a little girl with ds..her name is Abby.. I thought for sure that seeing Abby would make Avery happy but nope it didn’t do the trick..she's sleeping in the picture but she wasn’t before that..she was crying..

Isn't she soo adorable??!!!!! 

It sounds like if everything goes good from her on out we will get out of here on Sunday or Monday morning..so our angel flight isn't scheduled until Thursday so that is a lot of nights here in a motel..so I tried calling them to see if they could move our flight up..and they couldn’t so I called another organization that I dealt with first before angel flight but the reason why I went with angel flight is bc there plane was grounded. so they have been just buying there families commercial tickets instead until they get there plane up and working..the organization is Children’s Flight of Hope…so anyways after talking to the mission organizer there they have agreed to buy us two tickets on Monday top fly back home on..so we will fly on big airplanes..it might be a little bit more harder BUT it will get us home a lot sooner so we will just have to work with it..when we arrive to the airport they are going to have some mass medical team outside helping us to get through security and to the gate and then they will help us in the next airport..we only have one lay over..in Washington D.C. and it isnt very long..so that is good and we will leave 5pm on Monday and get home at 930pm..so I think it will all be ok..they will have the wheelchair delivered at home again..and we will just use the wheelchair at the airport.
Our new room:


The view from our room during the day..

I myself am very very tired..and just really drained emotionally and physically and mentally. I am soo behind on sleep its ridiculous. I am starting to feel a cold coming on…my head feels a little full..I have been taking lots of vitamin c in hopes that it will stay away..I am really missing my husband and my kiddos..

Day 2

Whew!! What.a.day…what.a.day!!!
We didn’t get much sleep last night.or I should say I didn’t...Avery woke up a few times crying and needed an extra bolt from her epidural.(another sign that we should of left the epidural in for one more night) Just from the nurse moving her a little bit to reposition her.
Avery got a sponge bath this morning..and we washed up her hair…

Avery’s attending dr that has been assisting Dr. Kim

Her dr came by this morning and I missed him…but he was very adamant about getting that epidural out today. His thoughts are the quicker the epidural comes out the quicker we can get her up and moving around and sooner to go home..which I get..but come one.day 2 after a major surgery..really???  What would one more day hurt??? I should of fought way harder on that one and the epidural SHOULD NOT of came out today!!!!!!!!!!!!!! I fought to keep it in while we did cast change and the dr I guess wasn’t happy about that at all..so then that’s when pain management came back and said they were going to take the epidural out when we put the back of her cast on…Doing the whole cast thing was VERY traumatic to her..and very painful…moving around her caused a lot of muscle spasms too..so his idea instead of the epidural was to start an IV of morphine. and to have a continuous small dose of morphine and have it set up to give her bolts every ten minutes if we needed too..the problem with that is the nurses are too busy and cant keep coming to give her a bolt of her morphine every ten minutes. So we are now tryin to get it changed but still working on it..but we are trying to get it changed to higher dose of continuous morphine and just having like one bolt an hour if needed..the thinking is if you need a lot of bolts per hour then you probably need to go up on your morphine bc what you are giving is not taking care of the problem. Pretty much all day she has been crying if she is awake..and if she is sleeping waking up crying..
She has been having muscle spasms too and the nurse figured she wouldn’t give her her valium at the time she needed it bc she was sleeping…BAD IDEA!!!!!!!!!!!! Wake her up and give her her medicine..bc it turned into one BIG nightmare!!! Avery woke up just screaming..she was having muscle spasms..her pain medicine wasn’t controlling her pain…and all I could do was cry with her..
We did have a nice nap together during the afternoon..

We tried to skype with the girls but Avery wasn’t really having it…

She keeps telling me bye-bye…home
We have moved twice today..once just into another room on ICU and then tonight in the mist of all her crying/pain they decided to move us to another level…ICP (intermediate care program) Which is a step down from ICU but yet she can still be here with her sleep apnea..bc she cant be on a regular floor bc of her sleep apnea..and having to be a sleep machine at night ..But it has turned out to be better for her bc the doctors seen me just crying with her when we got here so they get that we HAVE to get this pain under control and they are the ones that are being aggressive with it.and her nurse for the night…we also have a bathroom in our room which is nice bc then I don’t have to leave to go to the bathroom..Ill take pictures of it tomorrow but at night we have a great view of the city building.s..but I have a feeling I am also right next to the helicopter landing which = loud noises= no sleep.

After the epidural came out she was/is very irritable..doesn’t want anyone coming near her..not even touching her to listen to her..or take her temp…very odd wasn’t like that yesterday..
Still has her fever..low grade fever..stays below the 38.5 mark
Still has not went number two yet..I think that is where we are going to run into major complications. Bc she has so many issues with constipation already bc of her Hirschsprungs disease and she cant push or sit on a toilet..so we started the colac..and miralax twice a day..before it was just once a day…and the nurse gave her a suppository this afternoon..
We took the catheter out tonight…she was happy to get that out..and has already gone that first initial pee after you take it out..bc as many of you know it is VERY hard to go pee after you take the catheter out..at least it is for me after my c-sections..I have a super hard time going…too much information probably… 
We stopped the IV fluids she is drinking pretty well..she did eat some lunch a little (while she had the epidural in) a little bit of chicken noodle soup…but at supper time she wouldn’t eat nothing..zip.nada..probably in too much pain!!!
I didn’t end up getting lunch until 230 and supper until 1000..and now I'm hopefully going to get some sleep tonight..but I have a feeling its going to be a long night with Avery.
I miss my other kids like crazy! Its really hard being away from them all.but Skype has really helped and I am really glad that I set that up before I left.

Making the Cast Removable

I was soo dreading this!!! They were suppose to do it yesterday but for some reason didn’t do it..so when the drs. made there rounds this morning I mentioned that we needed to get it done before the epidural came out bc I was not taking that epidural out before we did the whole cast thing.and I made sure I told the pain management team when they came by this morning to take the epidural out. I remembered exactly what it was like last time. It was HORRIBLE!!!
So when they put the cast on during surgery they made it removable. It had two slits on each side that they cut then just taped it for the time being.
 

So they had to prepare the cast..basically that means put padding on and a net over it all on the inside bc there was a bunch of cotton before.

So in order to do that it is kind of a process. They have to take the bottom half first then they keep the cotton on her and wrap her up in ace bandage so she doesn’t move and the top of the cast is still there. She doesn’t like to be touched and moved..so of course it’s a big deal.We were giving her a bath right before this so we gave her an extra boost from her epidural bc I knew it was going to be painful and rough for her. We also gave her a dose of valium before we started too just bc of all the extra movement and everything..So for the back piece you are suppose to roll her on her stomach and then take the back piece off and wrap her up again in the ace bandage then she just lays there on her stomach for like an hour while they prepare the other side. Well her nurse wouldn’t give her the clearance to lay on her stomach for the hour bc it puts a lot of pressure on her lungs and you cant have any respiratory problems but since we have been having lots of problems with her breathing and respiratory issues that is why they wouldn’t clear her to do it. So there was three of them that just lifted her straight up and then put her back down while they prepared the back piece.

They did the same to put it back on..just lift her straight up and slide the back piece back under her and then you put the front the front back on and line it all up and strap it together..Then they come back and do the same thing with the front…But while we were putting the back on hey decided it would be a good time to take the epidural out so we don’t have to bug her back only once. And even though she is not taking anything by mouth yet they are going to give her pain medicine through her IV.

Putting the front piece back on that was rough..very rough..whoa…that was an experience..I def had my crying moment..it hurt…it hurt so bad to see that. it was gut wrenching. She was in so much pain..and crying uncontrollable and wasn’t consolable at all. She kept arching her back and wouldn’t let us strap it down…and kept screaming “owie” and so we gave another shot of morphine quickly.. Her stats dropped very quickly, she pretty much stopped breathing…she turned this awful pale color.They had to quickly put a mask on her with oxygen..she kept looking at me to save her...She must of thought she was getting out of it or something crazy like that since she was just a fighter putting it back together. I'm not sure it was a good idea to take the epidural out at the same time or not..but they did give her fast acting morphine at first that seemed to make it better but then it just went down hill…It was a long process that I don’t wish to repeat anytime soon!



In the end I know its a good thing that it is removable..if only we lived closer here too we could bring it back in and they would repad it..that would have been nice last time when she had a little accident in her cast… Dr. Kim doesn’t want us to remove it at all until her first appointment back and after the first set of xrays which is the first 4 weeks