Monday morning, March 25, 2013

"I just can't believe the surgery is over." This are words we hear Lana repeat.

Sometimes it doesn't seem real. It has been a 5 year process. And now she is on the other end.

We have gotten things down to a routine with her meds and sleep.

 We know how long she can stay up before she start to get nauseated and worn out.

We know how cold she needs the room so she doesn't get sick.

(Let me just say, it is COLD!)

She still really has not ingested any food yet but 2 sips of broth.

Hoping today she will want one of her protein drinks or a breakfast essential.

The highlight of her day yesterday was a shower.

It took both Tyson and I to accomplish it.

Her dad bought a hose with a shower nozzle head. We attached it to the sink since it didn't work on the shower. But it didn't attach well enough by itself so Tyson held it in place. The hose was just long enough to reach into the shower. Thank goodness for a tiny bathroom.

You just know that feeling of a nice shower after so many days of being sick.

We feel the strength of your prayers.

I woke up this morning with that thought in my head, that the prayers of others are blessing our lives at this time. There is a great power in pray. So often we want to help and do something for others in a difficult time, but we can't. It is their trial and only they can go through it. As much as we would like to take a piece of their trial away, it isn't possible.

So we pray! We pray in their behalf.

And isn't that the most important thing we CAN do. 

Petition the Lord with our faith for another.

Because, He can do what we can not.

So, thank you!

Much love,

Heidi

PS. I think I forgot to mention that the morning of surgery Lana woke up with the hymn in her head,

"Be Still My Soul"

Perfect!

Yo-Yo

Note: Somehow or another, this post here and then, it wasn't.

So I will just do a recap.

Right after her good time Saturday when she got up and wanted to watch a movie and drink some broth, she took a turn for the worse. She was up for about an hour and started feeling nauseated again. No reason, she didn't just have meds, it just came. We think it was possibly the movement from watching tv. We changed her ear patch and gave her Zofran. My worry was dehydration. Being nauseated, of course, is one sign of dehydration. However, she did not have any other signs of dehydration. Chad and Tyson helped ground me. I was ready to take her in to the hospital for a bag of fluids. Poor girl. She just can't get all that liquid in. But we watched her closely through the night and was ok. She has tried even harder to get those liquids in since then.

Therefore, the title for the post, Yo-Yo. It's up. It's down. That quick!

Day 3 - 4:00pm

Don't you just love pleasant surprises! Today certainly has been one.

Lana's little fighting spirit emerged more today. 

She is drinking more (oh, that sounds scary! Liquids not alcohol!)

She is able to handle her pain meds better without upsetting her stomach.

      She even skipped a dose this afternoon (opted to sleep!).

She has been up walking, even outside. She did put her robe on for that!

She sat outside in the beautiful California weather and chatted for a bit (as best as she could).    

      Sometimes we have to have her say things a few times before we can understand.

She has another blessing before her dad went back home to Vegas for the weekend. I am so grateful she seeks that power and the peace it brings her (and the rest of us).

I think we will try to give her some broth tonight. Yippee!

Oh, Yay! As I type this, Lana just walked out of her room from taking a nap. She says she wants to stay up, watch a movie and have some broth! HOORAY,  YAY! Oh, I just want to do a little happy dance!!!! I want to squeeze her until she pops! (That wouldn't be good.)

And look what her dad brought home for her... her favorite drink, Cherry Dr. Pepper.

Lana wants to thank Christina & her family for sending the beautiful flower bouquet.

They truly were a bright spot in her day. Kisses to you!

Love pleasant surprises!

March 23, 2013

Day 3
7:30 am

Day 3. Oh boy!

This is usually the hardest day after surgery, babies, etc. On our charts from the doctors office, it looks no different. Swelling and congestion peaks today. Oh, boy! And that congestion is a bugger! She is really struggling with that and not being able to breathe out of her nose and then trying to swallow anything is certainly a challenge.

We did see some help from Sudafed yesterday with the congestion. Liquid Benadryl was gagging to her so she doesn't want that one.

She was up and walking a bit yesterday wearing just her under clothing. Just normal for Lana. Good thing her dad is use to it.

In order for her to take anything orally, she watches herself in a mirror. Since she has no feelings in her lips, the mirror helps her place the cup at the right spot.

We are most concerned with her hydration. She is not drinking as much as she needs. Its difficult. But we do not want her to have to go into the hospital for an IV. So we keep pushing. I think her natural mechanism for sickness is to sleep. It always has been. So she wants to sleep. Hard to drink little sips all day when she sleeps. Wake up, Lana love!

Her ears have been so sensitive to noise. Interesting. We talk in our quiet voices in her room.

She still does not want anything type of food - broth or soup. I think we might just have to give her some today anyway. All that has been in her tummy since Wednesday is milk with protein powder (this coats the stomach prior to meds) and medications. That makes me hungry just thinking of going that long without food!

Oh, time for more medication. Better run. Thanks again for your prayers and concerns.

Hugs,
Heidi

March 22, 2013

Just an update:

Lana checked out of the hospital yesterday feeling nauseated. As soon as we got home she asked for a blessing. This has been a battle for her since then. Even with a patch behind the ear and Zofran (immediately devolves on the tongue) she is dealing with being nauseated. I think its from the oral pain meds, so we are just trying to get it under control for her. Also,  we are using some DoTerra oils to help with that. Today we are in the stage of 'trial & error' to see what works and what doesn't.

There is a strict regiment of things she must do daily.

• Meds - antibiotics, pain, decongestant 
• Stomach must be coated with milk and protein powder prior to all meds
• Certain doses are split in half with a time lapse in between
• Mouth rinses
• Nose sprays and suctioning
• creams put on lips and stitches
• walking
• coughing and deep breathing
• sleep upright

Some things she has to do is every hour or a certain amount of times per day. So this means someone is always waking her up at have her do something. And, if you know Lana well enough, she doesn't like her sleep interrupted! Tyson is so tender and encourages her along (as long as he doesn't touch her!)

The morning routine took us three hours! Just trying to learn everything we need to do. We will get quicker at this as time goes on.

Swallowing is very difficult. The nurse at the hospital told us to pull our bottom jaw forward and then try to swallow. Much harder. And then the fact that it is swollen and sore for the tubes, etc. So trying to get med or liquids down is quiet a process, not real simple at this point. It will get better though.

She really cant breathe out of her nose much. That can be such a bother. We have to be careful because blood clots need to form. She is a 'nose-blower' so going for 10 weeks without blowing, YIKES. I hope she doesn't have to use her suction in front of any of you! 

The nurse at her doctors office has been so helpful with our concerns and questions. They stay in close contact with us. That is a comfort.

The rental house is set up just perfect for this situation. We are in the cute town of Carpenteria. Tyson has a room that is perfect for him to work from. Different from where Lana is resting. We can walk to the beach and to the main street. And the weather - wonderful!

I think she has pulled out of all the anesthesia today. She is much more coherent. Swelling will continue until Sunday. Our biggest concern today is that she gets enough fluids to keep her hydrated.

Hugs to all!

Heidi

The day after!

Thursday, March 21, 2013
7:00 am
Goleta Hospital
Santa Barbara, CA

It is shift change for the nurses at the hospital. The halls are quiet. Tyson was asleep on the pull out bed (until we got here). Lana is sleeping in a sitting up position. Her head is bandaged. She has a strip of tape across her upper lip for pressure and a bib that is attached to her chin. She is holding on to a suction wand that she uses to vacuum out blood in her mouth. She is, well, very swollen! We have been told by many nurses that her swelling looks good for a jaw surgery patients.

The night nurse said Lana did very well. She used the morphine during the night. Only had one episode of upset tummy. She did not throw up. I know she will be happy over that. She continues to cough and deep breath to ward off pneumonia.

Tyson and I found out last night that even in her groggy state, she does not like to be rubbed or touched. She would try to push out hands away if we did. We would gently wake her to have her take deep breathes and to cough. Towards the end of the night, before we left, she would shake her head 'no' and push us away! She does not like her sleep to be interrupted and gets a little grumpy! Hmmm, I wonder where that comes from (not her dad!)

The doctor just came in. Said she looks really great on the swelling part (and we think it is awful!) It will get worse today, until about Sunday, and then the swelling subsides. She has a challenging day ahead. They will push her today to move, get up and walk, drink, etc before she can be released. Oh boy!

As for surgery...all went well. It was the best outcome they had hoped for. Dr Arnett said it was difficult though because her lips and tissue were so tight. The normal screwdriver he uses to tighten the plates on her bottom jaw, he was unable to even get in with it. Instead he went through the outside of her face. She has a small stitch but it won't leave a mark.

Surgery did last as long as he suspected. 6 hours. And the best part was that there was no nerve damage! Dr. Arnett stabilized the joints and bathed them in medications. Now we are going to continue to hope and pray they stay in place and heal. He commented what the assisting nurse said... "she will need a new passport" (because she looks so different.) She now has a jaw!

During surgery, Tyson went back to the rental to work which was helpful to distract his mind. He also found a heath food store and bough some "True Calm". He shared. I was happy. Good stuff. As the time got closer for her to be done, my neck was so tight. I don't think I have ever felt that before. Just stress. It's hard on parents to see their children go through pain, challenges, trials. We like living in a bubble!

With the good news of the surgery and feeling so happy, things turned quiet quickly when she came out of recovery and we first saw her. Oh my, we were not ready to see what we saw. It took us all by surprise how swollen she was. HARD! Just plain hard.

Tyson and her dad gave her a blessing the night prior to surgery. He said there would be divine guidance to help the doctor. He said unseen spirits would be there, those who are ancestors and those who have not yet come. I believe her babies were there with her. We are so grateful for the priesthood and the great comfort, strength and power it brings into our lives. Heavenly Father is there, He is aware and we know it!

Thank you all for you prayers, your concern, your friendships and your love to our girl! We adore her so very much. You are a great part of her life and we appreciate you for that.

Hugs!
Heidi, Lana's mom

All Systems a Go!

So here we are! The day before surgery. The day we thought would NEVER arrive. After 5 long years of waiting and disappointment, my heart is starting to race just thinking that finally, finally I will be getting surgery over with tomorrow! Yikes. Am I nervous? Not in the slightest... 

HAH! Total lie! I've been nervous since we got the 'go ahead'. Calm, but silently freaking out. I lost my appetite and couldn't enjoy my last meal.. so I fed it to the birds.

I am not really nervous for the surgery. I have full confidence in Dr Arnett. Yes, I am worried about him cutting the nerve or it tearing on it's own because it sits right on top of the bottom jaw bone on both sides and has no room for error. Dr Arnett is confident he will not cut it, but I am still a high risk patient for it tearing in half on it's own due to the stretching when my lower jaw is brought forward. If so, that will cause permanent loss of feeling in my chin and lower lip. That's just a thought in the back of my head. I am nervous about first waking up after surgery..

#1- I'll have a catheter for 2 days- YUCK!!

#2- I could be nauseous from the anesthetic and my worst fear is throwing up (I know call me crazy.. I am actually terrified of throwing up and have only done so 2-3 times in my life. I will do everything in my will power NOT to throw up) Plus being wired shut puts a whole different spin on things!

#3- Blood could get into my stomach and make me throw up. So the nurses have me cough several times to cough up blood and mucus in my chest so it doesn't go to my stomach

#4- I've got this weird straw suction thing permanently attached to my hip (not really) to suck away all the nastiness coming out of my mouth

#5- I'll have some weird compression wraps on my legs

#6- I'll have some other sort of machine thing attached to my calves to rub them (this is to avoid a clot)

#7- I'll be swelling and sore and uncomfortable

#8- I'll have a sore throat from the tube the put down my nose into my lungs

#8- Along with the IVs, I'll have another catheter in my wrist to keep my blood pressure low and monitor me while asleep

I'll be all sorts of "machined-up"!!

If I could just skip tomorrow and flash forward to being back at our rental, or thursday morning even while still in the hospital, that would be great! I just hate the whole surgery crap! I can deal with the healing. 

As for details of the surgery.. there was sooo much we were told I'll tell you what I remember:

• 14 bone grafts
• 22 ("something") punches- this is where the doc takes little hole punches out of my bone in places where the bone isn't needed (like the floor of my nose, etc.) and add it to the places where the bone grafts will be, along with synthetic bone and my own cells -> this promotes my own bone to grow back in those areas
• about 8-10 titanium plates
• 32-40 screws.. yikes that sounds like a lot, is that right? I guess we'll see..
• lower jaw is brought forward
• chin is extended forward
• upper jaw is brought forward
• "horse shoe" shape of my teeth is cut into thirds to be repositions and aligned with the bottom
• upper lip is..fixed?? don't know how to explain it. right now my top lip is thin and bottom lip is full, this will be fixed to match my bottom lip. the red colored part that is hiding will be brought out more :)
• top middle teeth will be aligned with the rest of the top side teeth.. thus making my vampire fangs look less vampirish- curse those things! I hate them!!
• tiny screw placed in gums above middle top teeth (for bands)
• little hook placed in gums below middle bottom teeth (for bands)
• the rest of the bands are placed on braces hooks
• my teeny tiny airway will be opened up back to normal size!
• a screw goes into my forehead dead smack in the middle of the eyes, like where my unibrow would be had I have one- but I prefer to be a hygienic female, so I don't! this is how the Dr measures everything to make it symmetrical. don't fret though! I will not look like frankenstein! this hook will come out after surgery!
• surgery is about 6 hours long
• after math in healing isn't too painful because when the nerves goes through this type of stress they just go to sleep. the nerves asleep creates no feeling. once the feeling starts to come back (a couple of weeks) most of the hard healing is done! voila! 

That's all I can recall! Now I need to go file off my nails (the gel) :( and eat a whole batch of cookies!! Good night err'body!

last suck threw a straw

lunch on the pier

burger the size of my head