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!

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.

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!

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 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.

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.