Day +39 October 31

Sporting her new head gear -the dressing forms a sort of "bill" and she looks like a jockey!

Happy Halloween!  I wish I could see all of my nieces and nephews all dressed up (and siblings...and Ma and Gil for that matter)! trick or treating is different here.  We only did the one day inside the Ronald McDonald House which is like 3 apartment houses and we only did on of them.  Otherwise, it is cold at night and Trick Or Treaters have to wear warm costumes or cover them up with coats.  It is currently 38 degrees and forcasted to go down to 32.  It has been sunny though and between hot buildings and warm car, I have not been a bit cold yet.  Stefan however, is totally in love with the down vest I bought him.  He wears it in and out and it keeps him warm.  I bought one for Chloe as well.

Elle is still truckin'.  She went back on Prisma with no issues, she did not even get puffy.  She has been weaned down on her Vasopressin and Epi and is still not on norepi -this is good. It means her blood pressures are strong.  Today her arterial line did come back positive for yeast after 2 days growing, as did the red port of her Hickman and brown port of her PICC yesterday.  This is so frustrating; beastly yeast!  A CT will be done this week to determine if she has what they call yeast balls in her organs.  If the scan shows no balls, then they may assume the source is the lines and consider pulling them somehow.  When she is weaned off of pressors, that will be the ideal "window".  I will be waiting like a cat, ready to pounce the second that happens!  Stefan of course, is also looking at every possibility. 

Dad is leaving tomorrow :(  but he and Bonita have never been apart this long and they will have a happy reunion.  He has been so helpful with house chores, maintenance, laundry, car care, Chloe care, errands, bill organizing, and fatherly counselling!  I started calling him Cindergrandpa.  I shouldn't admit this and scare off potential future helpers!  He has enjoyed his granddaughters though, so that is a good thing.

Caleb's pumpkin

Chloe's

Keira's



 

               Our girls dressed for Halloween



Princess Chloe and Pumpkinelle

                                                                               

Day +38 October 30

Day +38 has brings nothing very different.  Elle actually rested very well today and seemed more comfortable than recently.  Her skin is still fragile, her BPs are still lowww, she still wakes up and wiggles.  She still has my heart completely, and her dad's, and her grandpa's, and almost everyone's who has spent any time with her...

The Prisma "crashed" for the first time today; something about a fluid shift issue.  She had to be taken off CRRT early.  Lately it has been 12 hours to lock each of her Hickman ports with the anti fungal but today it is 20 hours.  It actually helped her blood pressures.  She just may get very puffy.

This evening, her temperature probe broke and re-inserting one would damage her throat and mouth so the night nurse figured out how to Jerry rig it. I'm grateful for his skills! 

Pastor Dale came to visit Elle and me.  He put his hand in hers, we prayed, ate, and I felt better. 

Stefan actually got a stretch of sleep during the evening 5-11 PM.  I know our hours have gotten so kooky, but I hope it did him some good.

Chloe and Grandpa Gil have really bonded and I am so appreciative that he has been here through this rough patch.  When family is here, I know Chloe is loved and secure.  I know her grandparents, Aunts, Uncles will always be there for her.  She is happy. 

Family Child Life brought by this little hat for Elle -Keeping warm in style

Fabulous socks of the day in honor of Bella

Chloe's fab socks too

Day +37 October 29

Sadiebug the ladybug, Jellyfish Keira, Cowgirl Violet, Daylon the dinosaur (Caleb was Spiderman but he wasn't feeling good)

I can't add pictures from my phone- these pics I added before are the Edlings and Lammo kids. Keira E. Is s jelly fish ( my favorite costume so far) and the tuckered out Scooby was Elle's next door neighbor when on the BMT unit .

Some of her cultures ( 2 ports) have cone back positive for yeast again her pressures are soft again- heck their mush. She is 54/28 with a MAP of 38 right now and she already had a bump in her epinephrine. Her skin is super fragile right now. Her counts are still fine though. She still has bright eyes and responds to us. She's our dolly.

Keep praying and she'll get through this somehow. Up too late or early depending on your perspective.

I can relate to Scoob right now

Kylie quietly got into her sister's cupcake and went to town!

Kids got to play together for a couple of hours -Heaven for Chloe.  The flash caught her eyes andI couldn't fix it which is why she looks that way

Day +36 October 28

Thank you so much to those of you who responded to the EB challenge! Some other ideas for today are to include pictures of Elle to create an awareness flier/fliers, or using one like exampled below from an EB group as a template with DEBRA website included on the blank pull tabs or another that you like.just some ideas...

Here are some good photos if you wanted to create a flier or email. Thank you.  :)

                                      

                                                   

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Elle has been doing OK today. We finally got the Z Flow specialty mattress/pillow compliments of Jeremy, the wonderful supply guy...he can hook us up with anything, it seems. It felt good except that we placed it under her after doing a back dressing, changing her bedding, doing a weight, and putting her back on the Prisma machine. She was very uncomfortable for awhile; crying tears, shaking, and reaching for her breathing tube. :(  I know, it made me feel crushed too. We checked for wrinkles, trouble spots, repositioned a little, adjusted her tubes, placed Gel E pads here and there for comfort, and of course added A LOT of pain control,but still she cried. After what seemed like an eternity (although in reality, I think it was only ten or fifteen minutes), she finally settled and closed her eyes. When I checked on her a couple of minutes later, I thought she was asleep but was just quiet with her eyes open. I placed my hand on her forehead and soon she really was asleep, Whew! And she didn't have a repeat episode, thankfully. So since we did so many things simultaneously, it was hard to tell just what the problem was, although I suspect she had to get accustomed to her new mattress.

Her white blood cell counts, cultures, BP, Temps, and weight all stable. Have no biopsy results or definitive plan for ze yeast yet, but at least she is stable, no more problems currently.

Chloe is having fun as usual.  She dressed as a butterfly fairy for Blessing Place today and this evening, upgraded to Butterfly PRINCESS for the kids Big RMH Halloween party.  As she was going down the hall with her grandpa to the party downstairs, he asked if she was ready.  In the words of our Guatemalan friend Edgar, she said, "It's party time!".

What do you get when you cross a blood thirsty Transylvanianian with a good witch? A butterfly princess of course.

That's right, she even morphed into Spider man Butterfly Princess -notice a theme?  She is into spiders this Halloween

Chloe loves the Edlings, here she is trying to force Violet to hold her hand!

Even actual Trick or Treating in the RMH rooms

Vlad had to take his fangs out because he was too scary

Day +35 October 27

For EB awareness week, challenge yourselves a little. Think of some ways to help educate others about the disease.  EB families not only battle the obvious pain and heartbreak as a result of the disease, but they do not usually get insurance coverage for wound supplies which can range from 800 - 2000 a month per child for the duration of the child's life. There is so much need and most people have not even heard of the disease -Lets change that! Share Elle's story, website, Facebook page or that of another EB child you know.  There are also useful EB websites with links at the right of this blog too.

Getting Festive for Halloween

Elle is having a better day today.  Many of her central line ports cultured out no growth (of yeast) for Three to FIVE days instead of positive growth in two days.  YES! I would like to give credit to all of the doctors and anti fungals, but I don't know, there have been a lot of prayers for her lately...The increased dose of Caspofungin and Voriconazole, the addition of Simvistatin along with the Amphotericin line locks certainly hasn't hurt.  The yeast war is not over, but we are certainly gaining ground.  The results came in late and we will discuss the next strategy in rounds. The plastic catheters are going to have to come out but when and how??

That is our favorite news of the day.  Other good news is Dad and Stefan actually got out together to watch the World Series at Grumpy's Bar.  However, they did not finish, wanting to get back to Chloe and the baby.  Chloe and I had a girls night and cuddled up, watched The Lion King, and ate popcorn in the BMT room. We checked on Elle a couple of times before the boys returned and Chloe behaved so well.  She colored in Elle's room with a mask on while I worked on a dressing that needed immediate attention with nurse Courtney. Courtney got Chloe to wear the too big mask by drawing a smiley face on it, sharpie style. A good time was had by all.

I also had a nice visit with the Edlings.  Give them your good thoughts too as Baby Daylon is still in a recovering phase with challenges and they are very busy and concerned about him.  One of the twins made pumpkin bread and shared with me -sooo yummy,  good job Sadie!

Now, I had orders to go to bed tonight so even though it is late, it is still an hour to an hour and a half earlier than usual.  Goodnight. 

Stefan took a couple of fabulous photos of Elle today. Here they are:

Oh those eyes...love them so much

Day +34 October 26

This is Epidermolysis Awareness Week- spread the word.
Elle had her biopsy today.  She had 5 not so little holes punched into her left thigh.  The tool used to core the tissue is even called a punch.  Don't worry, she got plenty of local and systemic pain control and did not seem to have ill effects or signs of additional pain.  The information from the biopsy (which we do not have yet, but will in a few days) will help Elle and the doctors in planning her care and in research efforts to help other children. 

Elle slept much of the day today and I am going to see her tonight right after this post.   She has maintained her blood pressures without adjustments to her meds or additional fluids beyond platelets.  Her WBC and ANC counts continue to maintain, and we will not have more culture results until tomorrow.  She has gained quite a bit of weight now; it just took a day.  She is 7.1kg up from 5.9 yesterday. 

Thanks for all of the continued antifungal/yeast ideas.  I didn't know about garlic- I wonder how we can incorportate that.  She isn't tolerating tube feeds yet, but I'll propose it.  I have been putting coconut oil on her here and there, but I didn't know that it caused the membrane to split.  That is interesting.  Yes Ma, I am getting your comments now and they are very sweet, thank you...Oh and she is on Ketaconazole topically. 

The Vikings were visiting the hospital again today at a halloween party in the cafeteria and Chloe got a photo with Freddie Brown who visited Elle before. She ate cupcakes and apple cider and became nuts for a little while but she had fun.



Chloe asked for a rainbow spider...



...and so she got one



Grandpa even wanted manly one

Dad asked, "Does this hospital have a pest problem?"

Chloe jumped at the chance to be goofy in the photo booth

                    

A magic trick

Feeding her dad -looks like he's not as enthusiastic about this

Chloe shy all of the sudden with Viking cutie, Freddie

Day +33 October 25

She was off of dialysis for 12 hours last night and all of her ports have been successfully rotated through with Amphotericin flushed and locked in the lines (instead of saline or heparin). This went OK, except she became fluid up as expected and her potassium level SHOT up, which was unexpected. She sat between 5.8 and 6.4 (normal 3.5-5) for about 7 hours and her heart rhythm was showing a change, but once she was back on the Prisma and her K+ went back down, it went back to normal.  Her weight turned out to be 5.9kg so not too bad.

The results of the cultures have come back in a confusing blur. There are 7 total ports and 2 types of cultures done on each port every other day. The results never quite come back as ordered. For example, the nurse will correctly label and send as: left PICC brown port, left PICC white port but lab may note as left Hickman red port with growth, left femoral no growth or something like that, so it is hard to tell what is what in the end. Everything has pretty much come back positive so it has been a moot point, but it seems that one of the white ports may have not grown out this last time.

Meanwhile, Elle has developed a pretty advanced pressure ulcer under her head gear despite frequent repositioning. It was an area that was covered for days at a time and so was difficult to assess. We all feel TERRIBLE about it though. It has taken me 3 days to even be able to post about it. I am sick about it really. Her skin in general has started to break down so easily lately. Her legs, elbows, wrists, neck, shoulders. I don't know what happened, but she tears if you look at her too hard. She had been significantly improving in that regard so I hope this is a fluke.  Oh and our my search for a gel type pillow, have come across the Z flow though PT/OT/NICU.  One is on order and hopefully will get that soon.  The unit assistant today brought the warming type in for temporary use.  While we await the arrival of the Z flow, we have fashioned  the warming pad under her body and just do not activate the heat .  It's worth a try.

Dr. Tolar visited with us today (now yesterday) and actually suggested the Posaconazole and may want to get Elle to the point of receiving more meds by G-Tube too. He is batting around ideas and is so not giving up. I love him for that! Elle had her eyes open clear and bright when he arrived and soon after, closed them. As soon as he left she popped them open again -I think she was pretending to be asleep because she knew he was talking about her! He is going to do her 4 week biopsy at 8AM.  I'm not looking forward to that, but am looking forward to the results.

Later, she was trying to go to sleep but kind of fought it.  She kept looking at me and when I touched her as I have described before, she would close her eyes.  Then she got pretty sleepy, but would open her eyes, see me, and close them again.  She did this a few times before she finally stayed asleep.  I think she wanted to make sure I was still there.  She has never been alone, ever in her ten months for more than a few minutes.  Someone has always been so close by that she could touch, see, or hear them.  She likely does not want to feel alone and I don't blame her one bit, bless her heart.  I love seeing her bright eyes again.  She just melts us completely. It makes me and her dad never want to leave her although we are both in the family area right now.

Elle had a nice visit from Stacy, a medical student who bonded with Elle during her BMT/Hemoc rotation. I'm sure Elle recognized her voice.We got to meet her husband too and  their new baby is sooo cute! We have seen some really wonderful pictures of him.

Chloe is doing just fine too.  Grandpa kept her active today and they had fun.  She didn't ask about us much today even though we were gone all day so that makes me feel good knowing that she was not missing us.  I did pick out a video with her, yes a VHS video and we watched part of it before bed (Cinderella).  She really keeps us going.  She is so sweet, imaginative, silly, intuitive, bratty, funny, intelligent, and ALIVE.  She is very special.  We're not biased at all of course.

Dancing during Wii

Making spooky cupcakes at RMH with grandpa

Fruit of her culinary efforts



Day +32 October 24

Baby Elle is hanging in.  They stopped the vecuronium (paralytic) and did a trial reducing the vent rate to see if she could handle it and in the words of the ICU Doc, "It failed miserably".  She became acidodic at her her first blood gas, meaning she needed to be on the high rate of the ventilator to maintain her body's safe PH.  That is OK, she just isn't ready for that.  It was decided to keep her off of the veck though.  We thought she moved while on it -wow, she really moves without it; hands, arms, shoulders, legs, head.  And she opens her eyes wide, looks at us with focus and clarity.  She is still so much IN LIFE, very much with us and fighting to be better.  Even the Docs say she has an amazing will and fight considering what she is undergoing. We love that, but still want her sedated for comfort and protection of her breathing tube and her wounds.  She still gets agitated and calms when I (or her dad) hold her hand and when I put my hand on her head.  Today, I just wanted to be next to her, available to hold her hand for most of the day.  I am at RMH now and wishing I was with her.   I may go keep S company after this.

So she is off of dialysis for 12 hours right now to free up a line so that each port can be alternated doing the Ampho lock.  Anti fungal will be flushed and locked into the line in hopes of killing any fungal colonies or bio-film from each catheter.

We are going to continue to rack our brains.  These Docs have big, knowledgeable brains, but they think about Elle for part of a shift and she is on mine and Stefan's mind 24 hours a day - yes even in sleep.  I dreamed that I fell through a water bed that became a deep, gel pool and that I had difficulty reaching the surface and my brother's resin covered painting that he had created 20 years ago fell to the bottom of the bed pool and was nearly ruined.  I felt so guilty about ruining the painting and felt very worried that other people, especially kids would fall in to the gel pool too.  I really am trying to come up with a good gel-type pillow for Elle to keep her skin safe and make her comfortable, and I am afraid of failing her. I think that is what that crazy dream means.  It occured to me today, that if this was the president, there would be even more creative interventions until the president was cured. So in my mind, our baby is "Ellebabma". She is our VIP and we are going to keep pooling ideas until we think of something brilliant together with the care team and those of you who are giving us great suggestions as well.

Stefan and I are doing ok though.  Dad really helps, Chloe helps, and everyone's prayers, love, and warm thoughts help.