Friday, December 30, 2011

More Good News


I think we've had our share of bad news in this journey so I'm happy to report when things really go our way. Cassie has been prescribed to do Physical and Occupational Therapies. We were able to get her in for both the PT and OT evaluations this week in Taylorsville and were given the news that she would need approximately 70 sessions of rehab total, attending 3 times a week. We were totally willing to take her, but we were nervous about how demanding that would be, the potential for infection, and of course costly, as we would have to pay a portion of every visit- plus only 60 sessions are covered by our insurance per year!

Yesterday, out of the blue, our insurance case manager called and asked how things were going. I explained our concern about the rehab, she asked why we were doing outpatient therapy and not in-home rehab. I told her our discharge coordinator at the hospital had told us Cassie didn't qualify for in-home rehab because she wasn't considered "immuno-compromised." We had taken that for the truth and not questioned it. The case manager about had a fit and said a 2- year -old with a Staph Infection, a PICC line, during RSV season, should not be dragged around town and that she most certainly does qualify!

One call to the doc to get the right order sent and we are in business! Within a couple hours, in-home rehab was ordered and we are thrilled about it. The PT came today and Cassie responded beautifully. It was a fantastic experience and such a relief to us in a million ways! The plan for now is the same, 3 visits a week and they will come to us. (And btw we have 180 visits of in-home care per year, covered at 100%!) I'm crying even typing that out, because it means such good things for us! Cassie is doing awesome and the therapist was impressed with our playroom and "rehab" toys. Cassie was so playful and brave the therapist said Cassie will rehabilitate herself. She doesn't want to get left out of anything!

Tuesday, December 27, 2011

Home for the Holidays





It was the perfect weekend. I don't think we've ever felt more content or happy. We stayed home and honestly just loved being here- and being together! Cassie is doing really well. We have seen her get a little stronger every day. She is getting her antibiotic through the PICC every 6 hours- so 11am/pm and 5am/pm. Not super fun, but so worth it! She is sleeping great through the night- turns out if you don't have a nurse messing with you every few minutes you can sleep! We will know more about her rehab needs and frequency in the coming weeks. All the therapists seem to be home for the holidays :) Cassie is so glad to be home. Thank you for praying her here! We are blessed.

Friday, December 23, 2011

I'll be Home for Christmas!

In case you were wondering, 36 days of "stuff" will all fit in a little red wagon, well almost. We have made it home and it is wonderful to be here. We've set-up our best imitation of a hospital bed in the family room and she seems pleased as a lark.

We still have to give 3-5 weeks of antibiotics through her PICC line which she receives every 6 hours. An hour before the first home dose was due we still hadn't heard from In-home Health. When I called they didn't have her in the system, Classic! After speaking to the pharmacist the only way she would get her dose on time would be to drive her to 21st South, pick it up and infuse on our way back. Of course that is what we did, what a ride this has been.

Our dream to be together for Christmas seems to be becoming a reality, and it's almost hard to believe. Thank you for your prayers and love. Thank you for all of you who haven't given up on us, who have been praying round the clock for us. To those angels who are leaving gifts on our porch, secretly cleaning our house, tending our children, keeping our dog alive, bringing us food, and sending words of encouragement and love, you are amazing. We are simply overwhelmed with the goodness of you all. Merry Christmas!




A Great Day!

Thursday morning's CRP was 1.9 and our Doctor said.....Pack your bags!!! Cross your fingers, knock on wood, we are coming home today. Just waiting for one more exam and lab results, we already peeked, CRP this AM is 1.3. We can't believe it, so excited.

Yesterday was a very busy, fun day.








The real All-Stars!








Wednesday, December 21, 2011

Quick Update

Cassie has had a great day and looks to be feeling well. CRP is down to 3.3 as of this morning. We are off 2 of the "big gun" antibiotics and things are promising. The next couple days will tell if we are out of the woods. Not much to report more than that. We are so hopeful, thanks for all your continued love and prayers.

Tuesday, December 20, 2011

Tuesday News

Cassie seems to be doing well. Her fevers don't seem to be an issue anymore and her CRP is still dropping-we are at 5 today. These are good things. Her swelling is coming down quite well and she is looking a little more like our baby. She is generally happy and drinking well. Pretty amazing that she isn't angry or feeling sorry for herself. (A lot of times I take that position for her :) Dr. Riva-Cambrin says that is why he loves working with kids and that she is "tough as nails."

Her iv fluids have been increased to help her flush the toxins out of her body. She is "splotchy' but not nearly as red as she was. We didn't have a very restful night because her heart rate was dipping low several times. The increased fluids should help with that issue. I don't remember low heart rate ever being a problem with her- usually it's the opposite. All the doctors seem to be really pleased with how she is doing- and we are cautiously optimistic.

She has really been enjoying stickers today, her play doh, and watching Wall E. We slept with Wall E playing all night long. Teresa and Nate have been here making play doh "snakes" with her today and getting her to use leftie every now and again. Her surgeon said it is possible that some of the reluctance to use her left arm may have had to do with that infection and pressure on her right frontal lobe. She is moving it better and is not nearly as sensitive about us touching it. We had her walk down the hall for a little while, assisted, but she is very wobbly. We will have to be patient for the rehab part too.

The doctors have decided that tomorrow they will take her off of two of the three antibiotics and see how things go. She will then be observed for a couple days see if we are on the right path with the Nafcillin. We think this journey at the hospital may be coming to a close, God willing. Thank you for your continued love.

Monday, December 19, 2011

A New Day

Cassie seems to be coming out of the fight. She just opened her eyes for us, first time in 2 days, and I about cried. The swelling has gone down so much. She ate a pancake, is talking, and watching Bug's Life. This morning's CRP is at 11.5, down from 17.7 yesterday, and 28.2 (highest it has ever been) from Saturday. It is dropping like a rock, and we are so glad. She seems to do so well on Sundays, and I think it has to do with all the prayers that are given for her that day. They expect they can move her back to the floor today and out of PICU.

The central PICC line procedure went well yesterday and the stitches from the spinal cord incision were removed during the sedation. That area looks "great" according to the Nuero-surgeon.

Sunday, December 18, 2011

Fighter



Cassie has been restful since yesterday as we try to keep her comfortable. She appears to be hunkered down and fighting as she lays in bed. The Seizure has added another dimension to our experience as she is now being followed by a team of Neurologists. The teams following us include: Neuro-Surgery, Rehabilitation, Infectious Disease, PICU Pediatricians, and Neurology. We continue to be impressed with the depth of professionals and facilities that are in play to help our girl beat this.

This afternoon they will try to place a central PICC line again. We really hope this one works. With the various antibiotics, pain medicine, and blood tests that will make it easier on her. They will also be removing her sutures from the back of her neck while she is sedated. Her left eye is now swollen closed along with her right eye, that should start going away today or tomorrow.

Saturday, December 17, 2011

Seizures

This morning around 3:00am Cassie had two seizures. Rapid response was called and 10 people came in to take care of her. She was stabilized and taken downstairs for a CT scan which looked good. We are being told this is a know risk from the procedure she under went, however small. Leave it to Cassie to take the road less traveled.

We are back in PICU and will like be here for a couple days. Her face is very puffy now and she can't open her right eye. Her head incision is not for the weak of stomach so you may have noticed that we are not posting pictures at this time.

Friday, December 16, 2011

Nemo, Anyone?

Forgive us for getting personal... The night before Cassie's tumor removal surgery (the first one) we didn't want to let go of her. She slept in our bed, and we kissed and snuggled her tight thinking it could be our last chance. She wasn't sleepy at all because of the MRI sedation that morning, so we put Finding Nemo on for her to watch. Throughout this whole experience the movie she chooses to watch 9 times out of 10 is Finding Nemo. We would not be surprised if she has watched that movie literally over 100 times.

Interestingly enough, Nemo the fish, has a weak fin on one side. His over protective father thinks he "can't do" but learns that despite his challenge he "can do." We have talked with each other several times about that ironic correlation with her arm. We know she will come away from this experience strong and not let anything get in her way.

Last night we kept Nemo playing on a loop, it's become white noise that gives her comfort. Our brave little Champ is struggling through the pain, but all things considered, doing well. The swelling on her face hasn't gotten very bad yet, but we can see it coming. It is swelling and bruising before our eyes. She is feverish and sleepy and not eating or drinking well but we expect that to come in time. We made it out of PICU around 3:00pm today and are back in our room. Kinda feels like home here. We are enjoying our Christmas tree and music and what we really enjoy is the fact that we have had the Spirit to guide and comfort us on this journey while we make decisions and ask for peace. We are also thankful for Priesthood blessings that have provided insight and guidance. Thank you for praying for us and channeling so much good energy our direction. Now we need to heal and "just keep swimming!"

Thursday, December 15, 2011

Another Miracle

The surgeons just came back and told us that everything went perfectly. There was a lot of puss that was removed, and he said he was glad they did this. A membrane was between the brain protecting it and he said her brain tissue looked "pristine". They feel strongly that they got it this time.

She will be in PICU over night and have a CT scan in the morning. The right side of her face will swell up and she will look like she's been "through 12 rounds with the champ". Scared to see that... Thank you for your thoughts and prayers.

Brain Surgery

As you all know, we have been hunting for an explaination as to why her CRP levels have not gone down faster, and why we are still dealing with fevers. Last night she spiked a fever of 102 and this morning her labs showed the CRP level actually went up. The CRP level is her body's way of telling us there is still a problem. Ali asked them to do an MRI this morning and they thought that may be a good idea just to rule out any lingering questions. The MRI found the problem... Subdural Abscess/ Fluid Collection. Basically the infection is trapped near her brain and needs to be removed.

The "Cockroach" infection has run and found a place to wall it's self off and hide, typical of this type of Staph. The place it chose is a scary one, above the right frontal lob of her brain. At this point we would expect nothing less than scary or unusal. We think they were surprised to see this surface but that it also answers a lot of questions as to why she just can't seem to get better. They keep telling us her case is really very rare and this infection- and the complications resulting are also rare, but they are confident in the need for the surgery and tell us the outcome should make a huge difference in her recovery. The solution is a 2-3 hr. surgery that Dr. Riva-Cambrin and team will perform this afternoon around 5:00pm.

Sorry to keep asking, but we know it works - Please Pray for Cassie this afternoon.


If you compare the two sides of the images above, looking above the arrows on the screen, you can see the abscess.

4 weeks ago...


video
Where do we start... Cassie has been in really good spirits and we are seeing her fun personality more and more. She will finally let Dad tickle her and is more friendly with the nurses. They have started to let her scan her own ankle band when she is receiving meds., which she loves. (Video above)

Yesterday the Infectious Disease team came in and said that they thought that Cassie had been on the heavy I.V. antibiotics long enough that perhaps we could switch to an Oral antibiotic. This prospect would allow her not to have to come home with a PICC line. We were very excited about the possibility and switched her over around noon on Wednesday. Unfortunately, that was a bad move as here fevers returned last night and this mornings CRP level had increased to 5. Ahhh!

That reaction was so unexpected that the doctors have decided to move forward with the MRI they'd been holding off on, she is down stairs right now being scanned.

We have been in denial that Christmas is getting so close. Admittedly, we haven't gotten into the spirit yet this year. The sweet Activity Days girls & their leaders from the ward sent over this tree and some cards. THANK YOU! What a fun distraction, we've even started playing some Christmas music in the room. We sure hope we are home for Christmas...

Tuesday, December 13, 2011

PT / OT







This mornings CRP level was 3.2, getting closer. No fevers since Sunday, knock on wood. Today Cassie did some in-room Occupational Therapy "OT", we are hoping to get some Physical Therapy "PT" in tomorrow. Pictured above are our favorite Therapists, Lisa and Kristen. Below that is Nurse Dave, most of our improvements have come since Dave started working with us (he would have us point out). Doesn't he look like the actor from House? Dave is Hilarious and fun, after 26 days you just need to laugh. Looks like we are finally on the right road and we are hoping for continued progress.

Sunday, December 11, 2011

4th Sunday



Well it looks like the Primary Children's Hospital Branch will be requesting that we transfer our membership records after attending 4 Sundays. The upside is we might get out of our callings... :-) And Josie says she likes it because "it's a lot faster then our other church"- it's 30 minutes. The weekends are a bit more fun with the kids getting a chance to hang out with their sister. We love the peer pressure that causes Cassie to eat better when they are around.


The lumbar drain was removed this morning due to leakage from being clamped. We are taking that as a good sign that it did its job and wasn't leaking out of the incision site. Also, her CRP level dropped another point to 4.1, just need it to get to 2 or less. She is still fevering and isn't really happy. More testing scheduled for tomorrow morning, first an ultrasound and then x-rays of her left shoulder. We are wondering if there is another reason why she is have so much trouble moving that arm. That is the only place she is consistently fussy about, and they tell us staph moves- maybe it has moved there. Today we agreed to have them take her off 2 of the 3 antibiotics, which over the next couple days will show if they've got it. If her levels go back up, they'll know to switch tracks.

Saturday, December 10, 2011

Testing, Testing, 1 - 2 - 3




Since our last update we've had a Bone Scan, Chest X-Rays, Blood Cultures, and Urine testing that have all come back negative. Yesterday afternoon they took her for a CT scan of her abdomen and finally found evidence of a kidney infection. The resident explained that the antibiotic must have been killing the bacteria in the urine so it wasn't showing up in the analysis. To paraphrase their words, this is an explanation for the fever and CRP levels but not a conclusive explanation.

This afternoon marked 48 hours without a high grade fever, but our joy was dashed 2 hours ago with a fever of 101.5 temperature which is just over the threshold they set for her. Since then we've had to endure more Blood and Urine Cultures which have gotten to be very difficult to collect.

We still have a very sick girl and we aren't 100% sure why. This is getting old. She is supposedly getting her lumbar drain clamped tomorrow and removed Monday, so that may make her happier. This is certainly a day by day adventure. We were so happy this morning but going to bed again with worry. Thank you for not forgetting us.

The question was asked, how many times has she been sedated for different procedures? With the original MRI Nov. 17 our total count is 9 times in a 23 day period. (3 general anest. for 3 surgeries, and 6 conscious sedations). Oh the irony! I had cancelled the original MRI several weeks ago worrying about having her sedated unnecessarily.

Thursday, December 8, 2011

Witch Hunt

Cassie is still fevering and her CRP is still high. Everyone is concerned and not able to tell us why this is. She is still on 4 heavy antibiotics, and we are basically on a witch hunt now to see if the infection has moved to another part of her body. She is in good spirits and eating so that is great though. They are running more blood and urine samples and we're waiting on those. Today she will have a bone scan, and then an x-ray of her lungs. Tomorrow she may need a full body MRI. We will beat this *#%^ bacteria if it's the last thing we do. She is a fighter and really she is tougher then the rest of us. We appreciate your continuing thoughts and prayers.

Things seem to be going well with her lumber drain although it is super stressful to watch her drain spinal fluid. She has 10 cc taken every single hour day and night. We are in the care of charge nurses now as our case continues to be complicated. They drain it, then clamp it and we are hoping the draining is giving her incision a better chance to heal without the additional fluid pressure. She doesn't seem to be bothered about laying flat, because she doesn't feel good enough to move. Oh how I miss the two-year-old who wrote on our master bedroom walls with a sharpie 4 weeks ago! We'll get that girl back though, she will pull through this.

Tuesday, December 6, 2011

3rd Times a Charm

This afternoons procedure went well and Cassie is back in her room. For all of you keeping track at home, this was her 3rd surgery. As it turns out the liquid that was building up under her incision was spinal fluid, that's the good news because it wasn't nasty infected fluid... The bad news is spinal fluid isn't supposed to be there, the fix is a bit more complicated.

First, they sutured the Dura closed (http://en.wikipedia.org/wiki/Dura_mater), which they've done before. This time they will try to reduce the spinal fluid pressure so that it isn't constantly flowing out the ruptured area. A drain at the base of her spine was placed so that over the next 5 days, as she lies on her back, they can drain out 5-10 cc's of fluid per hour. YES, I said 5 days on her back in bed, crappy! The amount they'll drain is the same amount that her body is producing. The plan is that the compromised area will then have a chance to heal without being constantly forced open from the pressure of the escaping fluid.

Momma Knows Best

If you'll recall, last Wednesday (30-Nov) Ali was sure that they needed to take Cassie in for another wash out surgery. They have tried everything possible to avoid that procedure, but it has come down to needing to go in again. We are scheduled to go to the O.R. at 3:00pm and it shouldn't take much more than an hour. Our original surgeon, Dr. Riva-Cambrin is here to do the procedure so we are very pleased with that.

Her incision has began draining as of this morning and you can see fluid bulging under her skin. This might sound strange, but we are relieved to have her going back in. Please keep her in your thoughts and prayers over the next few hours. THANKS!

BTW, the Echocardiograph that she had this morning came back perfect. Yeah!

Monday, December 5, 2011

Editorial Retraction

And we're back, after unexplained high fever and some concerning lab results, our Doctors felt that it would be best for us to return to the hospital. We've been re-admitted and have some tests scheduled for tomorrow morning. We'll keep you posted as we learn more.

Sunday, December 4, 2011

Home Sweet Home!

A picture is worth a thousand words...



















Fingers Crossed, We're Coming Home

Cassie had her new PICC line placed this morning, it went well. She will be receiving antibiotics for another 2-5 weeks through that line. Our nurse just came in to tell us that if we would like, they could probably send us home tonight. We are all for that plan! 16 days at PCMC is enough for us.

We really appreciate the love and support of everybody, you have truly buoyed is up though this experience. We are not out of the woods yet, and even though we are excited to show off our little trooper, she needs a few more weeks of recuperation time.

Friday, December 2, 2011

Hello Elliot



We dodged a bullet this morning (surgery) because Cassie's CRP-or inflammatory number has come down. Her white blood cell count is still high, but because we saw the one number come down they are fine to keep watching her today and see how things look tomorrow. We would like them to tell us we are in the clear with this infection, but not yet. One day at a time. Her mood is good and she still loves to go for frequent rides. She met Elliot the Labradoodle this afternoon and quite enjoyed him. It's good to see her happy- we are taking that as a good sign.



Thursday, December 1, 2011

No News is Good News

Last night Cassie began receiving her antibiotic through the traditional I.V., we are pleased to report that she did NOT experience the burning sensation they thought she would. In fact, she slept right through both rounds last night and has been her fun loving self all day.

All good signs in anticipation of test results that we are waiting for tomorrow morning. If her inflammation levels come down we'll know that the PICC line was the only problem. If they go up the Surgeons will have to decide whether to take her back to the O.R. for another irrigation procedure. We are also waiting on blood cultures, if they don't grow, we will know the blood infection has cleared up. It just takes time so we are playing the waiting game.