Getting Comfortable

This is Jerry, the house Labradoodle -he is very sweet, mellow, and hypoallergenic

Sorry its been so long. Since she had her Hickman placed (yay-no more IV pokes or blood draw pokes!)Elle has had a variety of issues. She was only in the PICU for a day and a half, but later de-satted again (not enough O2), fever 1 night, had leakage from around her Gtube, vomiting, diarrhea (and all the same color, disturbingly - but Tim R. says it is a hospital phenomenon). She also had many days of pain, sometimes four hours of crying, even screaming, and we couldn't find the cause. We were also chasing down the pain medicinally, which is a difficult balance. By the time we finally calmed her, we also snowed her so for several days she was either crying or out. We think it was a combination of things causing her discomfort, and a couple of front teeth are finally popping out! We did get the pain control right also with a fentanyl drip and fentanyl boluses and / or oxycodone for breakthrough or dressings. She is herself again, thankfully. She is smiling, examining her little world and enjoying all of her toys again.

Elle paying with toys

She has CMV in her lungs, they are calling a pneumonitis for which she is getting gancyclovir (antiviral) and IVIG (to boost her immune system); seems better now after many days. She had a GFR also to test kidney function which was basically a contrast injection of sorts with a baseline blood draw and I think 3 other blood draws at intervals. It turns out she does have some decreased kidney function, which is not unusual for EB kids, but when she starts chemo, it will be dose reduced.

She is scheduled Friday to start GCSF (Neupogen) which is a growth factor to stimulate production of white blood cells. She will get this for 5 days then they will pherese out her own cells and store them in case the donor cells do not "take". The autologous platelet pheresis should be Wednesday.

Pops have gone home :( but Dad and Bonita remain until Ma arrives on the 11Th (9/11 -hope airport security won't be bad). Steve is going home probably Friday for about 10 days. It will be hard without him.

Chloe is doing great. We do have a lot of fights as she is very strong willed and three. But in between she throws her arms around us and says she loves us. We in turn try to be patient, spend quality time with her as often as we can and our parenting techniques are evolving. She is very creative, sociable, enthusiastic and a great sense of humor. She is definitely our comic relief. Dad says that one granddaughter makes him cry while the other one makes him laugh -true, true. The other day she went to the play room and when the volunteer asked her name, she replied, "Dr. Pop". They just about fell over with laughter.

Oh, almost forgot! Elle's G tube was nicked by a family member while cutting bandages last night. I won't say who, but he felt really bad and his name starts with an S and ends with a teve. Its holding for now, but changing it out sh9uldn't be too big of a deal. GI has not given the final word. no surprise there, GI has been really slow to respond.

Waiting and Playing

Batting at Chicky

Plan is still for Elle to grow (4.82 kg this AM, a slow, steady increase) and fight off any bugs with her courses of antibiotics and anti fungals. There will be more labs and a CT, then a care team / family conference on Monday regarding her status and plan. If things look good at that time, she will get her Hickman placed and plan for next steps of Xplant. She is undergoing extended workup d/t her fragility.

Daylon is back on the BMT unit -yay! Heard he is smiling, even laughing, and riding around in a wagon. Payton is getting closer to the chemo count down. Still working on getting Bella back here. Chloe and I got to watch a movie with Bella's parents and big sister, Ali at the RMH cinema. It was a fun distraction, especially for Chloe who had a great time chatting it up and playing with Ali, who is four.

Proud of my dad; getting right

in there with a dressing change

Elle's wounds have improved; pink instead of beefy, less drainage and less odor, and a slightly smaller area affected. She is still quite uncomfortable at times though and it is a challenge to figure out where the problem is. It could be a folded ear she is lying on or cramping before a diarrhea (from the antibiotics). Sometimes her bandages shift, or she may be teething (no sign of a tooth yet,however). She is consolable if we find the problem and / or give her narcs. Oh, she is on Oxycodone now instead of Morphine as it seems to be very effective without the itch.

What is new, is that she sometimes is happy and interested in some distraction, but notices me leaving or getting too far away and then yowls...makes going to the restroom difficult but I love that she is so interactive now! She is batting at toys hanging overhead or wiggled in front of her. She watches lights and movement of her new crib toy. She is calmed by lullabies. Last night, she was crying and I jumped out of bed to see what was wrong and as soon as I came near, the crying abated, and when I presented her dolly, she smiled. Heaven,even at 345 AM.

Moving Forward

Another beautiful day in Minnesota. Elle is moving right along and getting stronger it seems everyday. She is still slowly gaining weight, now up to 10.3 pounds. Slowly inching up, and slow is exactly how things are moving right now. She slept quite a bit today. Heal baby girl heal. Dr's say maybe put in central line next week, so it is a waiting game to see her get better. Good news is that Bonita and Gil (Becky's parents have arrived). Such a welcome sight. Please pray for more healing. Elle was playing, smiling and feeling pretty good when awake. She loves the balloons she has over the bed. Reaches for them and plays with them.





Chloe was a character today, well I guess she always is. She is 3.... She is so strong willed now, Dad--- No diaper change, Dad-- Not that outfit (it does not match). Dad-- not those shoes. Dad--- I love you so much.... . Me--- Ok honey (such a softee). I am wrapped around my girls, all my girls fingers.





Going home to California in morning. I miss my girls all ready, but I know my dear wife will handle it all. She is so precious.





Well it is about 1:30am so off to watch some more t.v. , maybe sleep for a couple of hours.

Getting a Little Stronger

Well, Elle hardly needs O2 at all, but we keep it going blow-by just in case and it is great for her skin.

She now has an IV in her little head, but they did a great job placing it and even were able to draw her labs (with me looming over them, ensuring that not to much friction applied or too much blood taken for her size). Chloe spent time with the child-life specialist, Carin today who made a mock up of Elle's IV on a lavender hippo, which worked very well, because when Chloe finally saw her sister, she said, "Oh, she has an IV in her head so she can get medicine". (She said it just like that).

Her wt is 4.6kg (over 10 lbs - yay!), hemoglobin is 9.8 -yay again! What you say? This sounds low to you? Not for Elle, this is high compared to her 6's and 7's. albumin was 1.7 (slowly rising) for which she received some via her new IV. Other labs pretty much within limits, or at least for her. So doing well except for A LOT of diarrhea. No good for her bum. General plan is to keep tuning up, strength and hope for a line end of the week or next week.

Oh, and she is getting so bright-eyed. When Chloe and I came in to relieve S, Elle was playing; batting at her bottle of Pedialyte -and then she saw me and smiled...fabulous.

I finally got to meet Daylon, so sweet -he looks huge compared to Elle! And his skin is looking luminescent -so beautiful.

My dad and stepmom, Bonita are neat here in St Paul, I believe. I am happy; the cavalry is here! Timea has only been gone 2 days! We can do it, but we don't get to see much of each other, and Stefan has to go home soon for a bit anyway so it will be great to see them at 10 AM.

Yesterday - Stefan and I got to enjoy Elle alert and comfortable -such a dolly!

Elle is about the same. She is sleeping a lot, healing. Her lungs are "junky" sometimes, but vary through the day. She has been maintaining her sats, but sometimes it takes a little help, and there are moments where she does not settle well. I left her unsettled tonight

-it is Steve's night with her and I better do my job and go to bed. I slept through rounds this morning (yesterday was my night and I slept 2 1/2 hours). I mean 5 physicians were all around me in Elle's room whilst I snored. They probably think I'm an idiot! Embarrassing- Steve tried to awaken me but I have NO recollection of it.

So the current plan is - No plan. We are waiting to see Elle's response and if she continues to improve, they want to place her Hickman catheter (central IV access to one of her great vessels) middle next week.

Stefan and Chloe went to a Twins game tonight -funny we came all the way to the Midwest so to watch the Oakland A's play! I guess Chloe had a lot of fun, trying to sit in everyone's seat.

Waiting to Exhale (and other respiratory functions)

Her 2 week supplies (no wonder our island is so full!)

Elle is stable, with very good O2 sats; stable and comfortable after a little respiratory episode a couple of nights ago. the staff here have been so great, really working with us and Elle's needs. Actually, nearly every aspect has been this way.

RMH is full of thoughtful staff and volunteers and we have gotten to know several families including Bella's family and Daylon's. The Edlings (Daylon's family) gave Elle a little BMT unit welcome gift with soft blanket wall decals, and lots of other goodies and good bandaging tips.

We are just watching and waiting to see if she improves enough to have her line placed next week.

I was very pleased to be able to hold my girl for awhile after her weight today (4.42 kg)

Big sister is still enjoying good times at RMH and at the hospital.

Here at the natural history museum we visited before Elle was admitted.

(Still lots of lightning storms and Tornado warnings too.)

Admitted today

Elle was admitted today for blood transfusion, albumin, CT to r/o pneumonia, and wound cultures. Dr.s Wagner and Tolar visited today and discussed her condition and continued workup prior to line placement.

She is doing well except that she suffered a very large - well 2 large blisters (the biggest she has ever had) on her little foot from the IV insertion when I was preparing the dressings to pad and secure the IV. I was right in the room and even said not to apply traction! So my lesson is to be more watchful and aggressive.

Stefan (Steve) is spending the night in the hospital and may fly home for a bit tomorrow and I will be with Chloe and Timea. Chloe is having a great time in between petulant moments, bless her.

Not sure if Elle will remain inpatient for long term or just a couple of days. Will know more tomorrow.