Good News!!!!

We went to visit with Arianne yesterday and she looked GREAT!! She has now been off the vent for 2 days, she is just on a little bit of oxygen.  The tracheostomy tube remains and a little pneumonia has her coughing up a lot of secretions. It seems the doctors have found a medicine that seems to keep her comfortable but not too sleepy.  Physical therapy and occupational therapy have started working with her, today they stood her up on the side of the bed and started working with shapes, textures and colors.  My lip reading skills are not so good and I think she may have gotten a little frustrated trying to communicate. We tried writing but that didn't work, however she was able to hold the marker in her right hand! They have given us some other communication tools but those didn't seem to help yet either. I read her cards that had been sent, and she cried when I read one from cousin Catherine. So we cried together and I kissed her and told her how much you all love her. She still needs to have a permanent VP shunt placed and that will happen early this week, so I pray we don't have any set backs after the surgery and I pray that the shunt works properly this time. Also benefit promo's have been airing on KSTAR 99.7 FM! Many thanks to Christine Amato for making that happen. Please feel free to comment or offer words of encouragement and I will print them and share them with Arianne.

Benefit Info

 Healing Hands for Arianne

“Healing Hands for Arianne" has been set up by friends and family of Arianne Jones, a young woman who suffered a ruptured brain aneurysm which resulted in subarachnoid hemorrhage on the evening of May 19, 2013.

Arianne is an Aesthetic nurse at Vintage Wellness Center in Vintage Park.  She is a very caring and compassionate person who always put the wellbeing and happiness of other people first.  With her outgoing personality and sweet gentle way it is hard not to love her the minute you meet her.  Ari never meets a stranger and loves and gives at fault sometimes with everything she has.  She is the kind of person that would give her last dime to help a stranger.  She is single and does not have health insurance, so as you can imagine we need to raise as much money as possible not only to help her with her medical bills, but to also help with her monthly bills (house, car, utilities, etc).    We are planning a benefit for Sunday 8/4/13 at 1:00 PM at Cypress Saloon on Telge (12710 Telge Road Cypress, Texas 77429)  and are looking for donation items and/or services to be raffled and auctioned off on this date to help with her expenses while she is out of work. 

For more information and to stay up to date on Arianne’s progress please visit:  Healinghandsforarianne.blogspot.com

Monetary donations can be made at Amegy Bank under - Arianne Jones Benefit Fund.

Please continue to pray for Arianne’s complete and full recovery.  Therefore I say to you, whatever things you ask when you pray, BELIEVE you receive them, and you will have them.  Mark 11:24

We thank you in advance for helping us help her!

Shunt not working

Arianne's VP shunt is not working so they replaced the EVD or ventriculostomy which is the external brain drain to relieve the pressure in her brain. I visited with her last night and she definitely seemed more alert than she had in the past. However her pneumonia is back and causing her to cough a lot which seems to wear her out. I came across this video which was really great at explaining what has been going on with Arianne.

And the Roller Coaster Continues....

I am not as talented at this as Kasey but I am finding it therapeutic and now know why people blog..  In the last week Arianne has had a permanent VP Shunt placed because her body was not reabsorbing the cerebrospinal fluid which can cause pressure on the brain. Her neurosurgeon gave us good news and said that she "should" make a full recovery in 4-5 months.. So I am remaining cautiously optimistic. She is off isolation, her pneumonia is improving and although she is still on the ventilator, she is starting to breathe over it more. She is moving both arms and both legs but her grip is definitely weaker on the right. Her mother and I asked that the remainder of her hair be shaved since she will most likely be in the bed for a few more months. So she is officially Rocking the Sinead O'Connor look! Although I think that it makes her pretty eyelashes stand out even more. She was really alert Thursday and Friday and it was very encouraging to us all. Then today, not so alert because her shunt is not functioning properly. So she is going to surgery in the morning to have it repaired.  This entire journey feels like one step forward and two steps back. Another nurse today commented that Arianne had had a "rough" course.

On a more positive note, I worked at VBS this week and the theme was
"Stand Strong!!" How appropriate, we learned that God's love, Friends and Family, Prayer, Trust and the Bible all help us Stand Strong. So I am working to remember this daily...

On another positive note, there is a benefit planned for Arianne if you haven't heard yet! I will post the flyer here when I get it. It is going to be amazing! Her friends are putting together a great time, that will be a great help to Arianne. Along those same lines, I am so grateful and in awe of the generosity that has been poured out for Arianne. Thank you so very much everyone for your monetary donations, your words of encouragement for her and for us and your prayers.  When I see her, I always tell her about how much she is loved and how many prayers are being said for her.

Warmest Regards,
Amy

Update for June 17th

I know a lot of you want to know what is going on with Arianne. Truthfully I am trying to get a better picture myself. Please rest assured that I will let you all know when "major" things happen or when you all can talk to her or see her. This is going to be a VERY long road. In fact as I was crying to the nurse tonight she said Ari's path has taken the hard road, but they see her as turning a corner for the better, so I guess I need to just rest in that. What I can tell you now is that her lung infections are clearing up, the tracheostomy, although better than the "mouth tube" is still very irritating to her and it makes her cough a lot so she is on the strong pain medicine still, which makes her sleepy and out of it. But she needs this because the coughing fits increase the pressure in the brain. Her last angio showed no more Vasospasms and that the blood is still being diverted from the aneurysm by the coil. It was a rough visit today, seeing her so sleepy frustrates me, I just want her to wake up and be whole again.

Thank you all again for your love and support.

Amy

June 12 Update: A few changes, but visitation is still not advised.

Ari is still very tired, and we have been advised to expect periods of brief alertness, but then her brain will shut down because it needs rest.  Amy and Mick visited and she seemed to be looking through them at first... but then smiled at Mick with recognition in her eyes.

She is/was on a drug called Dilaudid, which is a powerful narcotic pain reliever.  They are slowly weaning her from that so that she can be more aware, and will be giving her codeine through her feeding tube to keep her comfortable.  They will resume the Dilaudid if her pain is not controlled with the codeine.  You may be wondering what is causing her pain... that would be the different conditions/devices I'll describe in the next few paragraphs.

She cannot talk due to the tracheostomy  (instead of being "intubated" via mouth, she has had a surgical procedure to place the tube directly in her throat) .  She is still on the ventilator to assist with breathing.  Her pneumonia has improved, and she seems to be breathing better (and looks better) than she has.

Ari is getting a permanent groin catheter with an IVC filter that will help catch any blood clots that may form, since she never got to a therapeutic dosage of the blood thinner that her care team had tried when the pulmonary embolus was first detected.

She had a new EVD placed (this is the drain that is helping relieve fluid pressure on her brain, known as hydrocephalus).  The old one had gotten clogged, and she still has some swelling in the ventricles of her brain since her body is not regulating the absorption of cerebrospinal fluid well right now.

Ari is still in isolation, and visitation is NOT advised at this point.  If she can get the rest she needs to allow her body to heal, we can see her sooner.  She is in ICU, so she cannot receive flowers, gifts, etc.

The conditions keeping Ari in ICU right now are the hydrocephalus/brain drain (EVD) and her need for the very strong pain medicine.  Once she can graduate from the Dilaudid and the EVD, we hope to have more regular updates of progress for you.

Thanks so much to everyone who is concerned and praying for Arianne.  We are trying our best to keep updates posted for you... we understand very much that you look forward to news of progress.

--Kasey

June 7 Update: Things are looking up a little.

Yesterday Ari had her trach (breathing tube surgically placed directly into her windpipe, not via her mouth) and PEG tube (feeding tube) placed.  Both procedures were successful and she tolerated them well.

She was stable enough to undergo the CT Scan, which revealed pulmonary embolus (blood clot in lungs), so they are starting her on a blood thinner called Heaprin to try and make the clots dissipate.  There are some risks involved with drugs like this, but in Ari's case her caregivers feel the possible benefits outweigh the risks.

Her care team has been able to lower the amount of oxygen they're giving her, and keep her at 97-98% saturation, which they're happy with.

This morning, Ari's respiratory status is STABLE and the nurses feel as though things are looking up. She's being weaned off the paralytic medication(s), but they do not plan to remove it completely just yet.  She will be in her "medical coma"-- where she is purposefully kept under sedation-- until maybe Sunday.

Visitation is still discouraged for the time being.

--Kasey

My BFF-SIL

Sister in Law just doesn’t quite capture my relationship with Arianne. I like to think BFF-SIL is my new title. Arianne and I met in the 10^th grade through a mutual friend, I thought she was pretty, sweet and popular and was excited that she wanted to be friends because I was new to the school.  The details are a little fuzzy but one night in a Jack-in-the –box bathroom we shared a moment and from that night on we were BFF’s. Our dads were both rockers and we both grew up listening to live loud music coming from our living rooms. We would reminisce about album covers we remembered. We both wanted to go into the medical/nursing field. We had much in common, and her bright smile, and witty one liners won me over! Needless to say we shared road trips, first boyfriends, first heartaches as well as all the other great things best friends do together. On one of the road trips, we went to Austin and met her brother Mick, whom she absolutely idolized and loved. Well 5 years later I am now Arianne’s sister in law and she has a nephew, then three years after that another nephew. Our boys love their Aunt very much. One Christmas when we couldn’t get together until a few days after Christmas, my boys were very concerned and ask “When are we going to see Aunt Ari?” Yeah, they know where all the good stuff came from and who spoils them.  Life has gotten so busy for the both of us and I miss her. So keep fighting my BFF so we can make some more memories… I Love you.

June 5 Update: Some new information, visitation is discouraged.

Amy spoke with Ari's care team today, she is not doing very well right now.

Arianne's body is having trouble keeping her blood saturated with oxygen, even though she is on the ventilator which is breathing for her and giving as much oxygen as possible.  Her oxygen saturation is getting as high as 92, but anything below 96% is cause for concern.  Normal people's oxygen reading will be very close to 100.

The doctors would like to do a CT Scan and check for pulmonary embolus, but Ari is not stable enough for a CT Scan right now.  If there is a blood clot somewhere in her lungs, it could be the culprit for her not having the ability to get that oxygen exchanged and circulated.

She is now in isolation because she has an infection in her blood and sputum (the mucus coming from her lower airways).  In order to even touch her, you must follow strict infection control guidelines including gowning up.  VISITATION IS DISCOURAGED AT THIS TIME.  Ari is very sick with an infection, so we need to give her time to fight this off.  Her immune system is not healthy enough to fight off even the inconsequential "bugs" that would be no problem for a healthy person.

On a more positive note, her last two ultrasound tests have indicated that there is NO vasospasm.  The arteries in her brain have stopped spasming.

She isn't sedated as heavily as she was, but she is on medications to keep her from moving too much, because when she is awake she goes into respiratory distress.

Her brain is continuously monitored so that her care team can understand if she needs more pain control medicines.  They are trying to stimulate her as little as possible right now.

Please continue to pray for Arianne.  She is very, very sick.

--Kasey

No real change to report.

Hello all, I know many of you are looking for a "new update", I just wanted to let you know that we simply don't have a lot to report.

Because Ari still has a breathing tube, her care team is thinking about a tracheostomy, which would make the intubation apparatus inside her mouth unnecessary, and make the assisted breathing a little easier to handle over a longer period of time.

Hopefully we'll have more news soon.  Thank you all for your continued prayers and support.

--Kasey