Life goes on...

Well I havent posted for a few months now.  So first I will give a little update on Bella.  We did go to California. And it was a blast!   I will post pics here in the next few weeks of Cali.
So as far as Bella, they did 2 surgeries a week every week for a month or so after we got back from California.  I lost count of the surgeries that she had.  Somewhere between 12-15 I think.  Anyways while we were in Cali my sister Tracy (a pediatric nurse *thank goodness) and I were doing the wound vac changes (without sedation).  We did it twice that week.  Once in San Fran and once while we were in the the redwoods.  By the time it was time to change the wound vac for the 2nd time that week (at the cabin in the redwoods) I noticed that she was in more pain (then the time we changed it before.)  She was more tender and sore.  From past experience I had learned usually this meant she had an infection...  Anyways when we got back to Boise they also felt she had an infection and put her on antibiotics. They also developed a new plan.  They were going to take her into the OR and try to stitch it at the deepest point of the wound then gradually moving the stitches up (every week)  until it was healed.   This was when they took her into the OR twice a week for a month or so. Also they had her on some pretty strong IV antibiotics at this point.  (they ended up keeping her on antibiotics for a month or more).  Which I feel was also part of why she finally healed.  Because she was having infection after infection and they were really setting her back.   Anyways I think it was @ the second week of September when we made it home.  WITH NO WOUND VAC...  Woohoo!  We continued doing antibiotic for another week or two. And eventually we went back and they took her picc line out.   Whew...  Alright I think that is enough of an update for now.  I will update more another day.

7-17-13 more thoughts and a mini update

Well I finally made it to the temple last night and did a session with my parents and sister.  It was awesome!!!  Here is a few pics.  I LOVE it when it storms!  The whole evening was just what I needed.  

Well the Doctor decided not to take the stitches out on Monday as he had mentioned he might.  But the good news is so far he seems to think we can make it to California, although I can tell its not something he is entirely comfortable with though.
So the new plan is tomorrow (Thursday) they will take her into the O.R. and take out her stitches (they are teeny tiny stitches that she has had since her surgery) and then they will put new longer stitches in instead.  Just to give some added support for the next week or two.  Then she will get those stitches out a week or two later.
While I am looking forward to moving on, I always dread her going into the operating room.  Its not just the sitting in the waiting room, watching my daughters name on the screen waiting for the little icon that tells me when they "start" and when they "end" and when she is in recovery.   I hate to watch but I cant help it.  I have been there 3 other times before.... this last time I tried listening to head phones, I tried reading my favorite magazine (PEOPLE)  I tried playing games on my phone, but no matter what I dont think I took my eyes off her name on that screen for more than 30 seconds.  Thank goodness my hubby was able to be there last time.  It was nice not to go crazy by myself haha.
We have to be there at 6:00 a.m. tomorrow.  She is scheduled for the O.R. at 8:00.
Thank you for all your thoughts and prayers.

Update Bella

So she still has her stitches in at this point.  She was originally supposed to get them off Friday, then it was decided to do it on Monday (tomorrow) instead, and then on Thursday at her appt.  he mentioned he might wait a few more days.  So we will see.  She still has her PICC line in at this point. I have been doing daily dressing changes on her PICC line because she has had many allergic reactions to the bandaging and adhesives they use.(tagaderm)    I also have been applying ointment on the (6 inch) incision 4 times daily.

So we are still holding out hope that the doctor will give her the go ahead to go to California this next weekend.  We will find out tomorrow.  Here is the situation. We have been planning this trip for almost a year.  My siblings and their families and our parents are all going.  We have the housing all paid for like 6 months ago (we paid @$900 for housing  thats just mine and ricks portion...).  Its something we have had to plan very carefully.  My kids have never been to California.  Its not the kind of thing we get to do often. So it is really important.  The housing has a 45 day cancellation.  So we are out a whole lot of money at this point if we cancel.  We arent going to disneyland...  We are going to San Francisco and the redwoods.  
It keeps going back and forth.  It seems to be about 50/50 if we will be able to go or not.   (Between Bella's health and our Car problems...)   I think though at this point the make it or break it will be Bella's health.  So we will see how tomorrow goes. Keeping my fingers crossed.

I also wanted to take a minute and mention how proud I am of my daughter.  She has been so strong through this whole thing.  She complains minimal.   She has been in bed for weeks!  She really is only supposed to get up to eat or use the restroom.  Drs orders.  And she is in pain constantly.  She rarely depends on her pain meds.  (and she has the good stuff)  She misses her friends...  She misses being a teenager, she misses just being able to sit,   she misses being able to just think about boys :-)  she has missed her entire summer,  Missed girls camp... family backpacking trip....  sleepovers with friends,  missed EFY,  hasnt been to church in over 3 months...  BUT she hasnt complained about any of that stuff really.   Bella you will get through this and you will be even stronger because of it.
Love Mom

Thoughts 7/14/13

Well here is an update from the last time I updated 10 days ago.
So we had high hopes to be able to go home and see family and friends this past week.  We had it all planned and everything. But Bella's Dr. said he didnt want her going anywhere. So we had to stick around Boise.  It has been over a month since I have been home.  And even more than that for Bella.  I have really appreciated my parents letting us stay here.  They have been wonderful!  But I long to be home with my husband by my side.  It is hard to communicate and make decisions long distance (and there have been lots of decisions medical and other wise) Living out of a suitcase is not fun...  But more than that I miss my best friend.  And I also really miss my ward and all my Young Women (I work with the youth in my church).
I want to write down a few thoughts, as I am using this as a journal for the time being.

So I am not going to lie, I have been/am struggling.  There are times when I just want to scream and say I DONT THINK I CAN DO THIS  FOR MUCH LONGER!  or  HOW MUCH MORE CAN I HANDLE???   I have the "feeling sorry for myself" thing down this past week.  Let me just say I have heard the expression when it rains it pours...  But I now know how true that can be.  Besides the stuff going on with Bella, I have had my two youngest wake up with the pukes and they had diarrhea for 4-5 days, car problems galore, BUT I felt I was handling things pretty good until this past Monday when the doctor told us we couldnt go home for the few days we had planned on going home...  And that just opened my whole week up to sulking, and a pity party.  I am ashamed to admit it but, in all seriousness it was the hardest time for me since this whole thing began.   I started questioning my faith in many things out there.  I was angry!  I kept telling my self over and over again.  This has gone on for almost 4 months now!  Why??? Why Bella?  Why us?  Dont we have enough trials?    Anyways... I kept hearing a voice in my head saying to me that I need to go to the temple, I need to ask for a blessing....  But then I would quickly tell that voice to shush.  :-)
(I told you I was angry)
Anyways, last night my mom and I were in the car driving and talking, and she had been preparing for her lesson for Relief society off and on yesterday.  I asked her what her lesson was about and she responded "having faith in times of trial"    I knew that Heavenly Father hadn't forgotten me!!!  I felt a  renewed hope and strength.  And was reminded of a thought that I have had off and on during this trial with Bella.  I dont know "why we are here"  I dont know "what we are supposed to learn" from this experience".  I dont know "who we are supposed to influence or meet"  But I know that HE knows!  He sees the big picture.  And I just need to have faith and trust in him.

Baileys Lake Backpacking trip

I use this somewhat as a journal to document what is going on in our lives.  A week or two ago Rick took some of our kids (Jason, Ashlynn, Lindsay and Cameron) with him and his parents and some of his siblings and nieces and nephews to Baileys Lake (In Wyoming).  It is kinda a family tradition.  Ricks family used to hike into Baileys lake when he was a kid etc...  Rick, Jason, Bella, and Ashlynn went with some of his siblings last year too.  They had a great time and decided to do it again this year.  Here are some pics of it.

Bella update after surgery

Just a quick update on what has been going on with us these last few weeks, since the last update and there have been  a lot of changes.

Well the last time I posted was June 17th and there wasnt a whole lot of changes for the next week or two following that.  But at her normal scheduled wvc (Wound vac change) on June 27th they started to discuss some different options.  Such as her spending time in a Hyperbaric chamber (for more info on what that is see here Hyperbaric chamber), or doing another debriedment, or doing the excision of all the cyst tissue.

Her Dr. decided to go ahead with the "excision surgery" which is where they remove all the cystic tissue, to prevent this from reoccurring again.  

So on Saturday the 29th we had to be there really early, the surgery lasted @3 hours.  She was pretty miserable the first day or so.  But improved so much each day.  She was released from the hospital on Wednesday evening.  And we are back "home" (at my parents in Boise/meridian for now)  she had an appointment to check the wound at the hospital today (looked great so far) and he wants to see her again on Monday.  Then we are hoping to go home for a week before we come back to take the stiches out.  Bella is dying to see some friends and MAYBE even go to a youth dance.  (we will see) 

Cam liked to help his sister push her IV pole around.

The Nelson family (Ricks parents and Siblings)

sent a sweet little package with this "Nurses Bait" and a few other things including some really cute owl pajama pants that you can see in the bottom pic.

This is Bella's special airbed.  This was a lifesaver!  

Beautiful flowers 

Foot rub time.  

I am really hoping that this will be the end of this..
I hope that everything heals nicely and all this can be a distant memory. 

Bella's journey continues

Well Friday we had an appt. for her wound vac change and the surgeon was there, He did a "debridement"  Which is where they scrap out and clean out all the "bad" skin and cells and scar tissue, to make room for the new cells etc.  So anyways it was bad news.  she went from being "2 cm" to being 6 cm.  Because the
2 cm wasn't really 2 cm it was just the bad/ dead skin cells etc. that rests at the bottom of the wound if you don't get it cleaned out.  The Dr. also said that if doesn't start showing improvement in the next week or so then he will need to go back in to the O.R. and do another debridement next week.  Not the best news.  But not the worst either.  Trying to remain positive.  She also had a "pic line" put in.  Because of all the sedation's and IV's she is having they are starting to have a hard time with getting Iv's going on her,  last Friday they took 1 to 1 and 1/2 hours trying to get an IV.  They tried and tried and finally pulled a sonar/ ultra sound machine in to try to help them find a usable vein.    This weekend she started having a reaction to her IV.  They mentioned things like blood clot, infection, mechanical phlebitis.  But luckily it started looking better so far.  And no more fevers the last 2 days.  WOOHOO!  Its funny how those small things become great.   (funny might be the wrong word)
I wish I had eloquent words to express my feelings. And maybe at a later date I will try to express them. I feel like I am kinda in survival mode right now.   I have a lot of feelings on everything that has been going on.  Friday was a pretty hard day for us.  It felt like a big setback, and in someways it was a big setback.  But I can tell you this much that spending so much time in the PICU (pediatric intensive care unit)  my daughters "big setback" is minor to some of the everyday things that some of those other children and parents have to go through.  When I walk by and see a sweet beautiful girl about 12 years old on a ventilator in one room with cords galore, seeing babies (some just weeks old) with dozens of cords and wrapped up like a mummy,   Hearing the sad scream and cries of the little boy (Cams age) next door, not knowing if it is from pain or if he just wants his Mom and Dad.  I will take the "big setback" any day.  And I realize I will have my ups and downs like that everyday, several times a day.  But I am so glad she has such great doctors and nurses that care about her.  And family and even friends most of all!  We were all touched that our Bishop suggested we do a ward fast in July for Bella.  Bella and Rick and I were all very touched by this suggestion.  We are so thankful to our family and friends.  And so blessed.
I will close on a high note.  Yesterday while we were at the Hospital Bella's aunt (who happens to be a nurse at ST. Lukes) did her dressing change on her pic line and she unbeknownst to Bella "tattooed" her bandage on her arm. So here are some pics of her "tat"

For those that cant read it,  It says I (heart) Justin Bieber

And for the record Bella DOES NOT like Justin Bieber.  

Her aunt just wanted her to tease her and get the satisfaction of Bella needing to explain to everyone who sees her arm how she feels about Justin Bieber.  :-)  

Jason Graduation

Well I cant believe it...  But the time has come for our oldest to graduate!
Crazy Crazy!  So here are some photos of Jason and his graduation.                                                                  
                                     

RMH

I have been wanting to do a post about our experience with the RMH (Ronald Mcdonald House) for some time.
What a incredible experience this was..  Words cannot express what a blessing these homes are to people who are going through all kinds of crisis in their lives.  During my first short stay I met a young guy probably 25ish  and he and his wife and young daughter had been staying there since February, Their little preemie was born with multiple health problems.
They have volunteers that come in and cook food.  (Usually businesses)  Lunch and dinner is provided by volunteers.  Breakfast they have tons of options as well.   Anyways I cant imagine the comfort it must bring when you have a crisis, or a little child, or any loved one in the hospital, (some of them not knowing if they will make it out of the hospital) to not have to worry about where to stay or how to pay for a hotel let alone food and gas etc.  How comforting it must be to be right there close by your loved one.  I know it was a comfort to me, and my loved one wasn't even in a life threatening situation.

                                            This was our room the first time we stayed there

                                                              This is the dining area

                                                           This is the huge fish tank

They ask you to pack a bag of snacks and treats for you to have through out the day.

They also will pack and deliver a lunch to you at the hospital if you are unable to come back for lunch.  

One of the times we have been in the PICU with Bella I noticed them delivering lunch to a family with a little baby that was in the PICU.

 This is a play area down in the basement you are welcome to bring your kids down here to play anytime day or night.