Wednesday, November 30, 2011

Blood Stream Infection

Despite the pain of last night, Cassie has been in reasonably good spirits today. She went for a long ride with Mom in the wheel chair and when they came back she wanted to stay in her chair. Pushed up against the table she amazed us by unwrapping a straw requiring two hands, see above. We like to see the progress with her using her left arm. A short time later she was all smiles as she entertained herself and us throwing Gold Fish crackers off the table.


The Infectious Disease Physician just came in to tell us that they have test results to indicate that the PICC line that goes up her arm to deliver the antibiotics to her heart has become infected and needs to be removed. Apparently plastic tubing is attractive to bacteria. Good news if that turns out to be the only problem. Bad news is that she has to receive her antibiotics through a traditional I.V. which will take twice as long to pump in and will likely cause a burning sensation as it goes in. We'll be watching carefully to see if her white blood counts drop, that will tell us if that was the only problem.


I had a request to provide some more specifics on the type of Staph infection and the antibiotics being used to treat it, most of you can tune out now. The Staph infection in her neck and in her blood is "most likely" Staphaureus and they are treating her with Nafcillin if that burns too much in the traditional I.V. they will switch to Cefuroxime.

Our Sweet Medical Mystery

What a roller coaster! We had a great day yesterday and then last night she had inconsolable pain. We had to start back on the heavy narcotics that we had been trying to get her off.

They are running all kinds of tests to try and figure out what is wrong, bottom line they don't know. Blood tests, Cultures, Urine analysis, watching the incision like a hawk... What we do know if that her white blood cells are spiking and so her body is fighting something.

Momma Bear is sure that she needs to have another wash out surgery, mother's intuition. All the "professionals" are unsure and don't want to got there yet. We should know who's right tonight.

Tuesday, November 29, 2011

"I love technology" -Kip Dynamite

We have started to see our sweet girl again. She really has been in better spirits since being on antibiotics. It is sad to think about how much pain she has been dealing with, but also amazing that she was still able to power through it all. What a champ!

We have been using FaceTime to allow the kids to see their sister in the hospital. She is all smiles as you can see above.

We continue to be blessed by the many kind acts of service that are being performed on our behalf. I can't begin to list them all because I would hate to leave one out, I'll just say Dang! :-)

Monday, November 28, 2011

Monday, Monday

Results of the infection came back as a type of Staph. Luckily it is not the kind that is resistant to antibiotics, and she has started 4-6 weeks of I.V. antibiotics. The good news is that we shouldn't have to stay in the hospital that long, as she can go home with the PICC line and continue the meds. So we are giving her a couple days to rest up and then we will start physical therapy again. She actually was talkative and ate and drank better today then she has been the whole time. It is believed that she has had this infection from day one after surgery and that is to blame for her irritability. It has been difficult to deal with a toddler who can't tell you exactly how she feels. It's upsetting that it took so long for us to catch on. She never manifested any real symptoms like fever or strange vitals so again she is a rare case. We are tired of being unique.

Sunday, November 27, 2011

Infection

This mornings surgery went well, we are back in the room, having bypassed the PICU. The infection was down into the bone and required that the bone pieces that were removed from the first surgery be permanently removed. Doctors say that will not be a problem and that she might even grow it back naturally. In other words, instead of having vertebrae rings she now has horse shoes. Cassie received a PICC line I.V. and has begun receiving 3 antibiotics through it. She will have to be on those for a few weeks.

Our hopes of coming home this week have been dashed. We will need some help this week with the kids after school and into the evenings. If you can help please contact Sister Cook. Thank you for your prayers.

Two Steps Forward, One Step Back

Our little insomniac, asked to go on a wheelchair ride this morning at 1:30am so being the great Dad that I am we took a stroll. I noticed that her incision was pink and there was some fluid coming out. We quickly went back to our unit and had the nurse check it out. She quickly got on her communication device and called the Nuero-Surgeon.

It turns out she has an infection, as a result she has been rushed back to the O.R. for exploratory irrigation surgery. She is back there now and it should only be 1-2 hours. Please keep her in your prayers this morning.

Saturday, November 26, 2011

Deepest Thanks

Although it seems impossible to let you all know how much we have appreciated your prayers, fasting, love, and support these last several days we want you to know how much it really means! We've been able to lean on and draw from the strength we feel flooding in from you. I think we knew before hand that we had a support system, we just had now idea how huge it was! We are blessed. We know Heavenly Father has listened, has answered, and is still answering our prayers. Thank you from the bottom of our hearts.

Friday, November 25, 2011

Four Monkey's on the Bed

Ali decided that the kids needed to get together, so after therapy Momma bear snuck all the cubs in for a visit. It is really amazing how much better Cassie does with her Bro and Sissy's near by. They got her to eat a school of gold fish (she hadn't been eating well today).

The child life specialist was able to give them each a faceless doll that they got to color. She had a good chat with them about why their sister has been in the hospital and what they can do to help her get better.

Sibling Therapy

It was Griffin's turn to spend time with Cassie in therapy this afternoon. She isn't very happy about any of it, but she is going through the motions and making great progress. Today she walked from the gym back to her room by herself both times (not without a lot of whimpering).

In fact, Dr. Niedzwecki said that he could see her going home as early as mid next week. That's our miracle girl, getting the job done!

Thursday, November 24, 2011

Thanksgiving

For therapy this afternoon Cassie was given a ride pass to be able to spend a couple hours outside the hospital. When she saw her siblings (first time since surgery for Brin and Griff) she reached out and gave them hugs and said "miss you" through her pacifier. Cassie showed the kids around the hospital and then we drove over to Temple Square.

We are so thankful on this day for the blessings and miracles we have experienced over the last week.

The Power of a Sister


video

As we posted yesterday, Josie got to come up and work with her sister during physical therapy. The idea is that Cassie might respond better to a sibling showing her what to do. Therapy went okay, but what happened after in her room was a really special moment. Thank you Grandpa for catching this moment on video. Watch closely...

Wednesday, November 23, 2011

Breathing Easier After Pathology Results



Our doctor just came in with the pathology results from Johns Hopkins. The tumor was a ganglioglioma brain tumor, which is considered a very low-grade tumor. UCLA's Neurosurgical Department's website says this about ganglioglioma:

More than 95 percent of gangliogliomas are low grade and usually do not recur after removal.

We are feeling extremely blessed to have received this news as it closes the doors to some scary paths we did not want to have to go down.

One other piece of good news we got today: The team feels like it will help Cassie to have some time with her siblings, so JoJo got to come up this afternoon to go to physical therapy with her.

Tuesday, November 22, 2011

"Get on your feet" -Gloria Estefan

This is our super girl standing up by herself for the first time, she's not happy about it. Cassie is making baby steps towards being able to come home. It appears that those steps will take about 2 weeks of in-patient rehab, so we are having our mail forwarded :-)

Pathology results were inconclusive from PCMC, so we were informed today that some samples were sent to Johns Hopkins University for analysis. We are on pins and kneedles waiting for those results.

Monday, November 21, 2011

Physical Therapy

We started some Physical Therapy today (play therapy). We are so proud of the progress that Cassie made dispite the pain she is in. The therapist is so nice, she wrapped her left hand to the handle bars of a tricycle and got her scooting around. Grandma Allen turned out to be her favorite target. After that they got her connected to a miniature walker and with a little support she pushed around the room on her feet.

video

Special thanks to nurse Susy who helped Cassie get a much needed bubble bath and did her hair into cute little piggys.  

She moved her left finger!!!!

Late last night with Grandparents & Aunts watching, we saw Cassie move her left index finger in her sleep. This is me calling Steve (who had taken the kids home to be in their own beds) to share the good news. We've been cautiously optimistic awaiting a professional assessment. This morning Dr. Riva-Cambrin came in and while holding Cassie's right arm down, he asked her to punch him in the nose. She slightly lifted her left shoulder and wiggled her finger. He turned to me and said "that makes me want to cry... best news of the week." Tears of joy ever since! We know that the fasts and prayers of yesterday have been answered. We started physical therapy this morning.

Sunday, November 20, 2011

Sunday

This is our rock star neurosurgeon Dr. Riva-Cambrin. We think the world of him and his team. We know we are blessed to live so close to such an amazing children's hospital, and know that we are in good hands.
This hospital is holy ground. We were able to take a break and attend a short church service at the hospital, the spirit was stronger there then words can express. It was good for us to have that experience. One of the speakers said that there are angels assigned to this place.
We certainly agree and feel that- as we know so many precious spirits are close to the other side and also that there are thousands of prayers pouring in here on their behalf. We feel your love. We really do. We have our moments-that's for sure- and that's when we pull from the reserve of your strength and love.
We are still waiting to see more progress, but we have been blessed thus far. She is cranky and in pain and still quite weak- obviously all to be expected. She has bursts of spunk and makes us laugh every now and again. She has watched Finding Nemo like 150 times already. We have really enjoyed seeing and talking with our family via FaceTime. (Now I'm really glad Steve got that crazy phone). Please know how much we appreciate your prayers. Keep them coming!

A good nights sleep

The nurses got Cassie a full size bed so that we could lay with her. Since yesterday we have been able to hold her in our arms, which she has enjoyed. Her selfless Mother held her for 3 hours, afraid to move and cause Cassie discomfort, Ali's arm is still sore. Ali has been in bed with her this morning, a few moments ago I heard the now familiar sound of Cassie calling out "Mommy?" With her Mom beside her she was quickly comforted.

We have felt the same comfort and proximity of our Heavenly Father as we've called out for help with this trial. We know it is an answer to the many prayers and fasts that He has been there and comforted us.

For the record, this couch bed I'm on tonight... not so comfortable :-)

Still no movement of her left arm.

Saturday, November 19, 2011

2nd MRI Better Results





Cassidy had a Post-Op MRI this morning and the Doctors just came by to tell us that things look even better then they thought. They think they got 80-85% of the Tumor. The #1 target area they were after was completely removed. Still no moving of the left arm.

Moved out of PICU



Great news! We have been released from the PICU. Healing going well. Still no movement of her left arm. Sorry but we are not ready for visitors that are not family, Thanks.

Cassidy Saturday Mid-Day Update



Cassidy underwent a complicated surgery for 7 hours yesterday as we discovered after an MRI on Thursday that she had a tumor on her Brain stem and spine. The doctors went in at 10:00am Friday morning, first removing the back of vertebrae 1-6, and then worked under microscope to remove the tumor. They believe they were able to remove 70% of the tumor but could not remove anymore as it was very deep and intertwined with the spinal cord. Going after more might compromise her breathing among other things.



Initial results are that the tumor is low grade (good sign that it might be benign). We should have full pathology results on Wednesday. The only complication from the surgery was that her left side is weak. She has not moved her left arm since surgery. We need her to move her arm!!!



Of the thousand ways this could have gone, there are only a half dozen ways it could have gone better. We are extremely grateful to our Heavenly Father and have felt the overwhelming support from Family, Friends, Ward, Work, Hospital staff, etc. THANK YOU for your prayers and Fasts!



Please continue to pray for her recovery. We will try and add some of the history as we have time. If this gets wordy sorry, we are trying to use this to document this experience.


We are at Primary Children's hospital in PICU...

Thursday, November 17, 2011

The Tumor

After arriving at Primary Children's Hospital we met with Dr.Riva-Cambrin a Neuro-surgeon who showed us the images from the MRI. This picture I took on my phone shows the Tumor in the center of the spine going up to the brain stem. It is just to the right and up from the arrow on the screen. YES, that whole big thing!

He said the tumor was large and could not be in a worse location. Also that the surgery "is about as complicated as they get." He recommended removal as soon as possible, but he said he wanted to pull together his "A team". At that point they had been working to get every one's schedules worked out for more than 2 hours, but were shooting for first thing the next day. There would be 10+ people including 3 surgeons, the anesthesiologist, nurses, and a team that would be monitoring the signals down the spinal cord to alert the surgeon if they got close to nerves. About an hour later we were told that they had opened an O.R. and would be able to operate the next morning.

MRI Results

For the past 11 months Cassie has had a skin condition (rash or severe eczema??) on her left shoulder, back, and arm. We have seen over 7 doctors and specialists to try and get some answers. Thursday morning we went to the Riverton Primary Children's extension for an MRI, to try and rule out vascular or nerve damage as the cause.

Before the procedure was over I sent this note to our family and Bishop, "We are finally getting some answers about Cassie's rash that we have been struggling with for the last year. Not good answers, the MRI this morning shows a tumor on her spine. Looks like we will be going up to Primaries for surgery right away. Just want to let you know, we would appreciate prayers."