Monday, June 17, 2013

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.  :-)  

Wednesday, June 12, 2013

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.                                                                  


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.

Bella's Journey

Well let see here where to begin.
I guess I will start at the beginning.  
Clear back in March, Bella started to notice a "pain in her Butt"  I thought I maybe she bruised her tailbone or something.  ( I had done this a time or two when I attempted to learn to roller skate) And it HURTS!
Anyways.  It was getting worse everyday.  And finally the last Sunday of spring break I decided to rake her to the Dr.  (a friend of mine told me her sister had the same symptoms when they were kids and it ended up being a cyst)  So I debated (you know the usual debate... when you decide if it is the kinda thing that the symptoms will be gone by tomorrow or if its the kinda thing that will get worse...  Ya that debate.)
Anyways so yes I took her into the Dr. and they did an ultra sound and sure enough she had a Cyst that was abscess.  So they gave her prescription and sent us home.  A few days later (and Bella not improving)  after talking to my sister who is a nurse and sees these sort of things often.  She called her Dr/surgeon friend and verified that this sort of Abscess Cyst of this size wont go away with antibiotic.  So they scheduled her for surgery that night (April 4th)  in Boise.
Ok from here I will sum it all up.
After the surgery we were doing dressing changes. Can I just say this must be extremely painful.  It is open wound healing so...  You have to take a corner of gauze and push it down in the wound.  Not fun for her and not fun for me.  Poor thing.
So that lasted a week or so... then she got an infection fever spiked etc.  So they decided for her sake to put her on a  wound vac .
Long story short she was on the wound vac for a few weeks (the wound heals a lot faster when on a wound vac.   After 2 weeks or so of having the wound vac off, she was doing a fundraiser for Girls camp and they rode in a trailer being pulled by a four wheeler and needless to say it was not a good move.  It reopened the wound.  (which she had noticed it was still really sore anyways)   So all I can figure is it must not have healed correctly.
Anyways they decided because she was so tender still there must be more infection/ cyst tissue.  So they redid the surgery on Wednesday May 22.
She has had a wound vac on since then, Which needs to be change at least twice weekly.  This surgery site was a lot deeper (4 centimeters)  they sedate her each time.
Bella has stayed in Boise the last few weeks.  And she will continue to stay there until she is off the wound vac.
                                                                Bella after first Surgery

                                                Bella after one of the wound vac changes

Bella with her new wound vac