I am getting behind!

I am sorry! This week has flown by. Sorry no pictures tonight, I will see what I can do tomorrow. Ariel is doing awesome. She is starting to wean off of one of her pain meds, having some set backs but getting there. She was up in her chair twice today for about an hour each time. She is bright, smiling and if her attitude is any indication as to how she is doing, we are well on the road to recovery. Our pre-teen attitude has returned with a vengeance. I don't think we are going to start school on time though:( Hopefully she will just be a couple of weeks late in starting. Her incision looks ridiculously awesome. It is humongous but clean, dry and intact as I would note at the hospital. Gotta love no infections of any kind! Bringing her home early, while hard on us, was the perfect decision for her. We saw her surgeon this week and he is very impressed. I got to see the side by side comparison of her before and after x-rays. Very impressive indeed. I think that is it for now. She still isn't making it out at all. Hopefully she will be up to some short outings in the next couple of weeks. She is asking for purple vans for school. I told her she was going to have to go with me to try them on so we are looking forward to feel well enough to do that:) She is up to visitors so anyone that wants to come is welcome:) I will update again soon. Tam

AND we are out of our room:)

We have made it to our comfy recliner! Pain is getting better. She totally fought me to go out in the family room but once she got there she was happy:) As you can see we have her set up with a ton of pillows and a floor fan (because she is still getting really hot and sweaty every time she gets up) but once she got situated she was pretty happy to be where she was at. Things are getting a little easier around here. Still on pain meds every three hours (mom was late by 1 hour this morning at 4am and boy did she let me know about it) and it still hurts to move but she is doing better. Everyday is a little better than the last. I still have no idea how to thank everyone for all the prayers, food and kindness. Love to you all. Tam

First walk around the house.

So we took a walk last night, very slowly and with Michaela helping the whole way. Not really up to our happy self yet but getting a little better every day. Pain is still an issue but getting better. Ariel doesn't like getting out of bed but her mom is making her:) We are so happy to have her home even if she is a lot of work and pretty grumpy. Her incision looks great and the swelling is going down in her face too. We will update again later. Love to all. Tam

Hospital Pictures!

She would not be happy with me for posting these but because I am mom I get to post! I know she looks like crud but they are what they are. Next you get to see a couple better pictures.

And we have a smile!

Sorry, I didn't get anything posted yesterday. I have to admit that I have traded that long drive for a lot of work. BUT it is all worth it. Pulled out the tape measure before putting Ariel in the shower this morning and she is officially 4 feet 11 inches. That is exactly 4 inches shorter than her mother. I have to admit that I didn't do this before she went into surgery so I can't give you the exact amount of growth but I agree with the doctor on somewhere around 12 inches. We are settling into a bit of a routine, getting a shower everyday and staying on top of the pain meds. You know how that goes when you come out of surgery and it's all you can do to take a shower and then you feel like you are exhausted. That is where we are at. She is far more comfortable than she was even 24 hours ago and yes we have even gotten a couple of smiles out of her. Today after dinner I am going to put her in her wheelchair and we may even go for a small walk around the house. She is still getting nauseous when she goes to a sitting position, so we are taking things very slow. Nights are sort of like having a newborn baby in the house. She is now getting meds every three hours and needs to be moved at the same time so not too bad. The 3 younger kiddos went to church with their Auntie T this morning and I took a nap while Ariel was doing the same. So that is even better today than yesterday. It's all uphill from here right? I continue to be amazed by how well she is doing:) I am going to throw a huge thank you out there for all of the meals. It isn't like we are hurting for food or anything but not to have to even think about what I am going to make for dinner every night is such a huge blessing. Natalie, Tracy, Maureen, all of the young women, my neighbors, all of my "organizers" you all are such a blessing in my life. I am sure we would muddle through this on our own but what a peace of mind you all bring to me. My three younger children are being so well shuttled, entertained, taught, fed! I don't know how I am going to live up to all of this when we get things back to normal. I love you all. I will update soon. Tam

New Record SET!

Ariel is HOME! Now I doubt the doctor would have not let her go home in some cases but I LOVE being a pediatric RN. We won't tell Dr. White that there technically is a difference between NICU and Peds:) I do float to peds right? Anyways I literally walked through the doors of the hospital with him this morning and my first words were, "we are sprung right?" We took her drain out, lost the IV and out came the catheter. I had her packed up and we were home by 12. She is currently asleep. I can assure you the most sound sleep she has had. I am so proud of her. Her room is sort of a hospital room right now. Even though she got to come home I had to promise I would be doing all of the things that they would be doing for her in the hospital. She is on quite a few meds around the clock, needs to be turned and up in her chair and all of the wound care, but I will happily set my alarm to give meds through the night and do her care versus driving up to PCH to be in the way and uncomfortable. Don't get me wrong there certainly is a need for the hospital, I just know we can take things from here and she will heal faster and with less risk to infection than being in the hospital. Everyone's next question is probably, when can we visit? I am going to make a request. She is still in pain and groggy from all of the pain meds, so give us the weekend. On Monday you can come visit but give us a call first so that we can plan things out. She still needs to be resting a lot next week and won't be out of the house at all. If you have any symptoms of anything please hold off in coming. She still has the respiratory risks involved with surgery and her compromised condition. Thank you too all of you and will update soon. Hopefully with a picture.

No smiles- YET.

No, she doesn't have any smiles yet, hence the reason for no pictures yet. I got a couple of them today but they really aren't that good and she really looks kind of sickly, so I am going to hold off one more day before posting any pictures. Her uncle Tim came in today and Michaela and him tried really hard to get some smiles by telling her jokes and acting like goofballs but the closest thing we got was a sort of 1/4 smile but only the hint of it was there! So hopefully when the doctor tells us we are sprung for real she will break out with them. The surgeon says he is trying not to take it too personally that she won't flash him one of her killer smiles BUT he definitely isn't liking the scowl that she gives him every time he walks into the room either:) It's actually kind of comical. I told him she doesn't really hold grudges but he may need to wait until she sees the positive side to all of this.

Ariel, Do you want to go HOME?

So a cute little story. Ariel is still very uncomfortable, but I wouldn't say in excruciating pain anymore. She gets a dose of some sort of pain med every two hours so we are getting on top of it. She gets turned side to side and sometimes right on her back every two hours as well but she really likes some positions better than others and really likes one side most of all. The doctor came in this afternoon just to talk to me and find out how I am feeling about taking her home tomorrow (Friday). I tell him to sign us up, I would take her home tonight if he would let me. I really hate being in the hospital taking care of her. I would much rather be at home with my own stuff and not have to constantly ask and then wait for things. She came off of oxygen early this morning, they took her central line out this morning and she is completely off of the IV meds as of this afternoon. So he says, "I can't let you go home tonight because her wound drain is still putting out too much but if it will slow down tonight I will take that out in the morning and remove her Foley catheter and you can go home tomorrow." YES! Ariel is complaining about everything. No she doesn't want to move off of her favorite side, no she doesn't want her medicine, no the nurse can't take her blood pressure, no she really doesn't want to get in her chair, no she doesn't want to do her respiratory therapy you get the picture. At one point she is protesting fairly loudly that she doesn't want to be on the side she is on for one more min even though she has only been there for approximately 15 min and I am trying to have this conversation with her that goes something like. "I am very sorry Ariel but you have to stay on this side for at least another 45 min you have to move around. I promise to move you then." The WHOLE time she is shaking her head no, no, no and she will not look at me. So I say to her, "Ariel, look at me." To which she is still shaking her head no, no, no. So I say to her, "Ariel do you want to go home tomorrow?" Her eyes popped open and she is looking at me like "really?" to which I explain to her that she has got to do this stuff so that they know we will do them if they let us go tomorrow and I really want to go tomorrow so she has got to quit complaining. And what do you know? She quit complaining. The nurse in the room says something along the lines that she was told that Ariel couldn't communicate. But from what she just witnessed Ariel understands everything that I just said to her and communicates very effectively. Well- no duh! So our hope and prayer tonight is that she gets to come home tomorrow. I don't care if I have to drive her to the doctors every day next week! Oh and by the way the surgeon says this is a world record for a kid like Ariel:) So thank you all for the prayers, fasting, priesthood blessing, all of the individuals that took it upon yourselves to put her name in the temple and just in general good thoughts being sent her way. Prayers are answered and I know she is one of our Heavenly Father's choice spirits and it is such an honor to not only have her in my life but to be her mother. Our family would be so different without her in it and the lessons that she teaches us everyday:) I will let you know how things go tomorrow. Tam

The sun is shining!

We are making awesome headway! Ariel had a really good night last night. Kind of a rough day but late in the day we made some changes to her pain meds and it really worked for her. She drifted off to sleep at about 4pm and slept until 7pm which was the most she had slept since surgery. YEAH! Then last night I wrote everything out for Joe and told him to stay on top of the meds and it worked. (I came home to sleep) She had several stretched where she slept straight through to when she needed to be turned (she has to be turned every two hours). Only bad news was she has a UTI. But that is taken care of fairly easily with antibiotics. So I am really scared to actually write this for fear of jinxing myself but they are talking about keeping her in ICU for one more night and then sending her home. Yes, I said home. The surgeon doesn't really want to send her to the main floor just because of the risk of infection. So in his words, "because of the family history", he would rather just send her home! I can do everything they are going to do for her as far as the wound care and meds and such and just take her into the office for him to check! That would be sooooooooo awesome. We switched her to oral meds yesterday and the only other thing would be she needs to come off of the O2 today and get rid of her urinary catheter. She will be so much more comfortable here, will sleep better here, just about everything will be better here. So there are major benefits to being an nurse. I love it. So I will keep you all posted:) I am off the the hospital and will check in tonight. We have been so blessed through all of this. Oh and I forgot to tell you all. Physical Therapy came at 2pm yesterday and wanted to put her in her wheelchair. I was dreading it thinking she was going to let her opinion be known in a big way. She did awesome! And we are adjusting her chair today. Her head sat a full head above her headrest. Her neck was actually on the headrest. It is crazy. She is so straight she looks awesome. And yes I am going to lay bets she is almost as tall as I am. Long and lanky. Those that want to visit can just come to the house if all goes well. Wish us luck. NAH, no luck involved where the lord is concerned. We are being looked after. Love to you all.

Rough night.

We had a rough night but the sun is up and it is a new day. Pain is still a major issue and I think some overwhelming anxiety as well. I think we MIGHT be making some headway though in trying to get Ariel comfortable. She had to have blood over the night:( But if it is needed it is needed. Surgeon said things are ok this morning. When you have kiddos like Ariel they don't always respond to things like the rest of us would so our job today is to stay on top of things and make notes to what seems to work. She remains on oxygen and in the ICU. Keep those prayers a coming. While I know she hurts she is still coming through this like a trooper. She came through surgery in half the time, came off the vent right away, no injury to her spine cord or worse. We have been so blessed and I know she is being looked after here and above. Thank you for all that you are doing for us. I still can't put into words how much we feel loved and taken care of. I will update tonight. Tam

What a day!

The shots were taken right before she went into the OR. I decided to hold off on the current shots because she looks not so happy right now:) I will post some when she can at the very least give us a half smile. She was so nervous and scared but trying really hard to hold it all together. So surgery went well. Our primary surgeon actually had his partner assist on the case so it went a lot quicker than expected. 5 hours and she was done. Since we had been told 6 to 10 hours I was really surprised when out walked her doctor. When he got in things looked a little different than he had expected. Sadly, Ariel's spine was not only curved but twisted as well. So makes things a little difficult for him but the final product looks good. He is estimating about 12 inches in growth which just blows my mind. She looks so tall in the bed. I bet when we finally are able to get her up she is just about as tall as me. There was minimal blood loss in the OR but things have changed a bit since they came out so it looks like she will be getting a blood transfusion tonight:( Pain is the major issue right now. She is in extreme pain. It hurts my heart to see her like this. She is on morphine, toradol, valium, and another pain drip and still hurting. Anyone of us would be knocked out for a week on all this. So finding what works for her is being a little allusive right now. Michaela went with me to the hospital this evening and was so good with her. She was so incredibly cute trying to talk Ariel into going to her "happy place". So patient and kind. I am so proud of that little one. So dad is staying with her tonight. She is such a daddy's girl he wouldn't leave. Mom is holding in there. It is very difficult being mom and not nurse. I didn't really realize how picky I am about the care of Ariel. I know no one will do things like we do them around here but I am having a really hard time letting someone else be the lead. I can only image what shift change sounds like when they are handing off. OK- "so mom is an RN and grandma is a retired nurse they are a bit of a handful so be prepared". I am going to work on that tomorrow. Can't make any promises though:) So that's the update for tonight. Thank you to all of my friends, prayers, helpers, cooks, and cleaners out there. I didn't worry about a thing here at the house, I just knew everything was taken care of. Love you all. Tam

Ariel heads into surgery tomorrow.

This is Ariel now. Notice how she is literally sideways:( That hump you see on her back is actually her spine. Yes, I said spine. It is that curved. Looks kinda yucky huh? Well she heads off to surgery tomorrow at 7:30am at Phoenix Children's Hospital. 6 to 10 hour surgery (although her surgeon assures us he has never taken 10 hours) with an incision that goes from her shoulders to her tailbone, 7 to 14 days in the hospital and about a 12 week recovery. But when it is all done we have been told to expect about 6 to 9 inches growth in length before we leave the hospital and she will be out of pain once she heals. She is really scared but is looking forward to never having to wear a hot, yucky backbrace again and mom has promised really good pain drugs to help. So wish us luck tomorrow and we will keep you posted.

I got a swimmer!

After all that we go through with Ariel it is soooooooooo cool to get to go do something easy. LIKE take in a swimming meet with Michaela. She is getting so good it is kinda scary. She swam with the 9 and 10 year olds this meet to challenge her and she came away with 3 first places. Her favorite stroke is the breast stroke (just like her mom). I love it! She also swims the 200 IM just about every meet by choice then they usually throw her into one other race. This particular meet it was the 100 freestyle. I love to be able to share something that I love with one of the kids. It just makes up for all of the other stuff that goes along with being a parent sometimes.