The Week Before Transplant. Day -7 to Day -1

Today is titled Bella's Day of Rest, Day -1. It's quite fitting that I won a pretty pillow and blanket for her at bingo last night I suppose. On this restful day I have time to fill you all in on the last 7 days, before Transplant, which is tomorrow. 

This will be a long post.

Day -7: Wednesday, March 18th

This day was not a bad day but was a little harder than the first day of chemo. Bella had an odd episode after they started Ativan today. They may have run the rate too fast because she acted the opposite of what she should do after receiving Ativan. Looking back now we realize this episode was not a reaction to Ativan, it was the first fever episode in her series of Sepsis attacks that were about to get worse and worse. 

Day -6 Thursday

The chemo meds started showing a few effects including what I called "glowing hives." They would change from small to big and fade in and out sometimes covering all of her arms, legs and head.

This was quite a busy day but Bella still had a lot of playful moments where she seemed quite herself and well but was also very moody. 

Bella was put back on Oxygen because they didn't want her to have to work at breathing in any way. Later that night she spiked a fever and got the shakes. They thought this may be a reaction to one of the chemo meds at this time. 

Day -5 Friday

Things take a bad turn and the sepsis attacks begin. 

At midnight last night Bella also needed a blood transfusion. I believe this one was the 8th or 9th blood transfusion she's needed in her life so far. The STEP team (PICU team) got involved with her case so they could be ready for a transfer if it got to the point where her Unit 1 team could not handle all that she needed. It turned out Bella never needed to go to PICU (Thank God) but Unit 1 put Bella on 1-1 nursing. 

This pic is in the afternoon after Bella made it through a rough night and tiresome morning. 

Day -4 Saturday

 Later tonight at midnight the worst attack was yet to come. 

They were still trying to figure out what the main cause was at this point and what to do. They later realized it was Bella's Central IV in her chest (that had bacteria living in it because they love plastic) showering her heart with bugs everytime they used the line. So before they understood this and decided and realized this would stop if they stopped using the line... she came to have another attack because the line was used again. This attack was the worst and we almost lost her. 

We had to wait in agonizing pain and torture as Bella endured the worst Sepsis attack. 

These pics were taken early afternoon after Bella had a bad Sepsis attack at 9am, we were unaware the worst attack would still come at midnight tonight.

What hell looks like:

At the time of her worst attack (and by worst I just mean the longest) we litterally had to hold her, pray, and watch our baby go through pain hoping her heart would not give out at a rate of 230. 

You see, the only iv line in her, needed to give her the bolus of fluid to support her heart and to give her antibiotics to fight the bugs infecting her blood... was still in her for those purposes. So at the same time she needed it out she still needed it in. Causing the doctors to have no other option but to tell us to wait as we watch her go through an agonizing episode of sepsis attack. The battle was all up to her and the strength of her heart at that point.  As long as her heart didn't give out and she didn't DIE, we had to wait for the episode to be over, lock the iv line and prepare her for surgery to take out the iv line.  

Now that her IV line is out she must go through a needle poke in her hands, arms or heel for all blood work. They were able to get a PIV in her arm. Sepsis attacks were enough stress, and on top of that she has to go through multiple pokes daily for blood work, etc. She was poked 20 times in 2 days.

Day - 3 Sunday

This pic was before surgery. You'll see Bella in this type of shirt a lot, it's the hospital shirts. They are big enough to pull over the perf. Iv in her right arm and button up in the front. All of her regular button up pjs have sleeves that are too tight and skinny. Later after her surgery to get her chest iv out, she'll have a lot of "no pants party" pics because they put the second perf. Iv in her left foot. 

She's also feeling a lot better after they stopped using her line last night. She has also been NPO (no food/formula in tummy) for many hours. They do this before surgery. So by the time we are able to feed her again it will be about 12 hours without formula for her.

Surgery: 

Surgery happened at 10:30 am. There was worry that when removing the cuff of the Broviak line it could shower her with bacteria bugs again and she could have another sepsis attack in the OR, but that didn't happen. She needed a breathing tube during surgery, but did very well and came out of it just fine. She went on to have a good Sunday afternoon. There was one bump after surgery when we realized feedig her full feeds (105 mL of formula in 1 hour) was making her feel really crappy so we had to drain her tummy. After morphine and draining her tummy she felt way better. So the docs decided to leave her NPO until they figured what was best for feeding her. 

They later decided to just "bathe" her tummy for now with formula at a rate of 5mL per hour. 

Day -2 Monday

Last Day of Chemo

Today we found out Bella's bone marrow donor had her marrow drawn for Bella and it went very well and is on route to be processed and everything they need to do to it to have it ready to infuse into Bella on Wednesday. 

Bella was feeling very well last night and would of had a good night sleep if lab wouldn't of had to wake her up at 12am to poke her for blood work and then again at 6am to poke her again. 

This all finally brings us to today...

Day -1 Tuesday

A Day of Rest

Bella and her princess pillow that I won for her at bingo last night. Bella woke up happy after a restfull 13hr sleep with no interruptions. 

The iv in her arm and the iv in her foot are still both working very well. However they can't risk using these for BMT transfusion. So now that they know Bella's blood is clear, they are able to send Bella for surgery to put in a Broviak central line iv in her chest. She is in the OR for this right now as I finish this blog post. This is Bella's 4th Broviak line sewn into her chest, her 8th Surgery, 8th time being put under not including her Sepic Shock that had her in the PICU for 3 weeks last April.

Onward 

Now that Bella's chemo conditioning is done the chemo continues to work and do its job for days possibly weeks to come. It mainly continues to lower her counts so that her bone marrow is gone and makes it possible for the donor's marrow to set up shop, grow and give Bella new blood, new cells, a new working immune system and essentially... new life.