Day +8 September 30

Elles WBC is 0.2 today; on the way up.  Her bilirubinis better and her tears are clear again, peeing a little and POOPING- yes.  Her weight is 5.8kg. She is on feeds again and off of TPN.  Kidney function pretty poor-they are worried and took her off of the antirejection drug, cyclosporin or CSA to give her kidneys a break.  She continues to receive blood and / or platelets daily.   Timmy did the head gear with RT (respiratory therapy).  See, he did a nice job.  He loves his niece.



Her nurse setting up tube feeds by gravity

Nurse Rachel and Timmy





right hand airing out

left hand

Bald Eagle visiting RMH



Thursday night BINGO



Chloe sharing the joy of her bingo winnings with Caleb















Day +7 September 29

Elle has her first counts in.  She has a white blood cell count is 0.1!  This is nothing but it is a beginning!  This may mean her new donor cells are starting to engraft and it usually goes very slowly.  Her liver and kidneys still not great, but not unexpected at this stage of transplant.  She has a lot of thick, thick secretions in her mouth and airway and is requiring very frequent suctioning through the ventilator (doesn't touch tissue).  She is still swollen; I am jokingly calling her "Puff Baby".  Just more of the same except she is leaking orange tears occasionally (because of her high billirubin).  Others say their kids did this at one point during this stage so I am trying to be patient.  Her dad gave her a beautiful card with an Emily Dickinson quote, "Not knowing when the dawn will come, I open every door".

Stefan relieved me today and I went to the Minnesota Zoo this time with Timmy and Chloe.  It was a sunny, perfect, beautiful day in the 70's. (We heard about the California heat wave-Sacramento 103 today, yes?) Chloe kept saying that the trees were purple or red and so pretty and I agreed.  We had fun but walked and walked and we wore ourselves out. 

RMH (Ronald McDonald House) had a very special dinner tonight from Cooks for Kids.  It was a very nice spread with ribs, roasted chicken, prime rib, slider cheeseburgers, and lots of yummy sides and decadent desserts.  They spoil us sometimes. 

Photo from maybe May?

This used to be her constant position before she started aspirating

Chloe pushing Daddy around on a little wheeled toy at RMH

Craft time sitting next to her favorite volunteer

Making what turned out to be a gorgeous mask

Timmy wanted to photograph me after an all-nighter with the baby

Little bear Chloe's cousin Maggie sent in the mail

Look at the size of this shark at the Minnesota Zoo

A Leafy Sea Dragon is related to a Sea Horse



Bactrian camels as seen from the Monorail -one is taking a bath in solitude



Big cats and little cats act just alike - this could be my Phoebe

The blank look amused Timmy and me

Lady Moose

The Family Farm, a display of common products produced from Midwest crops

A collection of odd, zoo animal scarecrows



Looks like he's wearing an Eastern European Hat



Looking at fish from an unusual vantage point

Tropics portion of the zoo

Day +6 September 28

This is her Amish girl head gear.  Her eyes are pretty swollen, but we're working on it

This is the red blood cell from Uncle Timmy

Today, went fine.  Elle remains stable, no new issues.  She is still fluid positive but is starting to pee a little -the fluid is slowly releasing; keep it flowing.  She is getting Bumex twice a day and a new diuretic Metolazone via her G tube now.  Her kidney's still stressed, but her liver and lungs seem to be holding. 

The weird thing, is that when we were doing her body dressing today, we were expecting and fearing that her skin would be so bad, but her wounds actually looked relatively good.  There was some healing and the tissues look pink instead of bleeding.  Have to do her limbs yet, and hoping they also look good.  Don't know if it is the mesenchymal cells or that I started using medical honey again and increased the amount of aquaphor, or that she isn't moving to damage herself?  Maybe a combination.  I'll take it. 

Stefan made us laugh though. Four of us were turning her during dessings and I wanted to get her off of the wet bedding and so rolled one side of the bedding under her then we had to roll her over the "hump" to the other side and take the old bedding out.  When she was all positioned, he said, "OK, are you ready to do the dry hump?"  We all tittered, Stefan blinked a couple of times and said, "Becky, will you explain to me later?"  Then the light went on and he said "Ohhh" sheepishly (More tittering). 

Stefan is exhausted, only slept an hour last night from anxiety I guess.  He went to bed finally at 900 PM and Chloe right after.  I went in to check on them a bit ago and found Chloe had snuck into bed with him.

Day +5 September 27

Thank you to all of the sweet children who have made cards, prayers and well wishes for Elle!      

Elle is doing well, no significant changes.  Still trying to pull fluid off of her and she is getting puffier.  Respiratory therapy fashioned head gear for her that has 4 straps and covers the back of her head in order to protect her skin and still hold her breathing tube in place.  She looks like an Amish baby- it's cute, but more importantly, it holds well without hurting her -we hope.

All  of the nurses so far have been great.  Everyone takes very good care of her and she continues to hold a power over people, even asleep.  She still manages to capture their hearts. 

Stefan is with her for the third night in a row!  He said he wanted to because he got a lot of sleep and so he could work, but I think in part, he wanted to give me time with my brother,who just flew in; what a sweet guy my husband can be.

It is great to have Timmy here.  Chloe is delighted because her uncle is a lot like a playmate!  She adores the princess tea set Timmy brought from he and Laura. 

Chloe has AM Blessing Place through church, I call "practice" preschool.  She will be going to actual preschool before long.

Day +4 September 26

Elle is doing fine, no big changes.  Her Bili levels are slightly better, a little less jaundiced.  She is puffier in her eyes.  Her weight is up at 4.9kg.  Her sodium and BUN are high (kidney fxn).  So it seems that she is 3rd spacing fluids -retaining fluid in her tissues instead of in her vessels.  The diuretics aren't working so well, but a little.  I have never prayed for pee before now, but I am.

 Her respiratory status is stable, but I am worried about ventilator associated pneumonia (VAP).  She had a lung infection, has EB affecting her respiratory tract, now she can't cough or sit up to move fluid around and out of her lungs, she is retaining fluid and some of it is definitely in her lungs.   I'm making it sound bad, but the docs, RTs, and nurses are not too worried about her respiratory status. 

Right now, I am just going to let her rest, pad her pressure points, protect her from infection, watch everything, and keep loving her.

Chloe has a full blown cold, but she was so good today.  She wore her little white face mask with happy faces without complaint - and left it  on.  She let me wash her hands repeatedly and is learning to use a Kleenex.  She even agreed to wear her hat to keep warm. I told Stefan to let her sleep as long as she wanted (sometimes she won't take a nap at all).  Napped from 1130 AM to 5 PM!  She hasn't napped that long since she was one years old.  So we are all wearing masks around the baby, but I am going to keep Chloe away from Elle now for a while, it's way too risky.

I had a nice visit with Pastor Dale and his wife tonight.  While they were visiting me and Elle, the Edlings came by with fresh chocolate chip cookies and a beautiful card made by all of the kids and visited with Stefan and Chloe...A great way to end the day.  I am off to relieve Stefan, do central line dressings, and spend time at baby's side again

It is really starting to look like fall around here now.  The leaves are turning golden, orange, rust...beautiful. 

Day +3 September 25

Elle is holding in the ICU.  She is not struggling in pain and she is breathing easily enough on the ventilator.  She is starting to have some changes that we are watching, however.  Her sodium was high this AM at 155, and she was showing other signs of being "dry", surprisingly since we were expecting fluid overload. fluid and electrolyte balance becomes tricky.  She got a fluid bolus and she isn't peeing.  When she does, it is dark orange.  Her Bili is increased, her skin is yellow so her liver may be taking a hit.  Not sure why; could be because of the TPN (her IV nutrition) or because of the chemo (I never trusted that Busulfan!) She likely will get an ultrasound tomorrow to check her liver. 

We did her dressings earlier.  In some ways so much easier and in another, so much harder.  Being asleep and not crying or struggling made it easier both because dressings weren't being wiggled off and because she wasn't in terrible pain.  The hard thing was protecting her ETT (breathing tube) which takes a respiratory therapist to hold and guide the whole time during any movement.  So it took four of us an hour plus instead of three of us 2 hours.  Her vitals, PEEP, Sats hardly changed which told us that  she was doing fine during the process.  And she didn't bleed as I expected, although she did get platelets earlier. Her Hemoglobin was 11.4 surprisingly, so she did not need blood.  the Vecuronium used to paralyze her also makes her secretions thick so I am going to ask the Docs what they think of Dexatomadine (not sure how to spell either of these) which acts similarly without the excess secretions.  Her lungs are a little more "junky" and white on the left via chest xray but at least her venous blood gases are good.  Sorry if getting medical here.  Basically worried about liver, kidneys, and lungs a little and watching them. 

I miss her sitting up, looking, playing, smiling...  I love this baby so much.  My heart is aching through this time, and Stefan and I so appreciate everyone's support, love, and positive thoughts/prayers.  Thank you for your cards, emails, and blog comments too as they encourage and comfort us.  We read them all.

Ma and Gil have been such great helpers and Ma, being a former ICU nurse, has been a great advocate for the baby and a resource for me.  Sadly, they are leaving tomorrow, and I will miss my mother.  My brother will be visiting for a week though so we are all looking forward to that.

Ma's last night here with Chloe waving her magic wand and wearing her newly made ladybug crown

Day +2 September 24

After early AM blogging, Elle started to have a little more difficulty.  She had some bleeding in her mouth which is expected from mucositis and low platelets.  But then at 5AM we had trouble getting her O2 Sats up again and the resident conferred with the ICU on-call MD and thought best to contact anesthesia.  Everything moved quickly from there and by 730 she was on her way to the OR to be intubated in a semi-controlled manner.  We did not know the Anesthesiologist, the Attending, the respiratory therapist, or the AM nurse.  The anesthesiologist seemed to know what he he was doing, but had not intubatied a Junctional. Talk about nerve racking -a semi emergent intubation with no one we had total confidence in. 

I called Daylon's mom, crying at 645 AM to ask her for some OR and tube-securing tips since her baby is Junctional like Elle.  She was helpful as was Bella's dad.

Elle did well, no real complications from the ET tube placement.  Everyone involved did a great job and we even got the OR team to allow BMT/ICU RN in the OR with her to make sure she was handled correctly. She is in the PICU now and will likely stay on the ventilator and in ICU for at least 18 more days (day +20).  Right now, she has a lot of bleeding in her mouth and all the way down.  A little in her G-tube, and also from the ET tube placement -there is always some trauma  from this and especially with a JEB kid post myeloablative chemo! 

The good news is that she is resting, not moving and struggling, her body wounds are not getting trauma, and she will not remember any of it because the Versed (a sedative that erases memory).  This portion of transplant (day 3 through 20 ish) is really hard; kids feel sick, have pain, nausea.  So she will sleep through this part and hopefully be taken off of the vent as she is starting to improve.  Also in the ICU, she will have a very competent nurse looking after her 1 on 1 and a respiratory therapist that will be frequently checking her airway and vent.

She seems very peaceful right now, I read her two baby bedtime stories and lullabies are playing in the background. 

Warning:  Photo below is our baby with her tube, may look a little scary for those Softies reading.

Resting quietly after having endotracheal tube placed

Her vent readings stable

Her vital signs stable as well

Day +1 September 23

Day +1 was not super easy for Elle.  She had several periods of discomfort, her wounds are a little worse, and after her dressing change she was desatting again.  I did have to suction her ( which is a last resort right now and only I do it), reposition, place her O2 right in her face, and she got a R Epi nebulizer treatment to decrease tissue swelling in her upper airway.  She did finally normalize and was placed in an O2 tent to increase oxygenation and decrease work of breathing. She finally fell asleep for 15 minutes then awoke crying and writhing.  Could not figure out what but after 45 minutes of trying different things, she finally settled.  She must be exhausted.

She may be electively intubated soon to avoid complications from an emrgency intubation.  We will discuss in rounds.  Her BPs are controlled for now and weights and wet diapers stable/good, but she keeps spiking fevers low grade to 101 intermittently.

Oh and Happy Birthday Bonita!

In her glass box of emotion

Day Zero -Transplant Day!

Elle received her transplant of donor stem cells today.  Prior to the infusion, the BMT chaplain, LaDonna came to lead a Blessing Ceremony for Elle and Elle's cells.  The ceremony was beautiful.  The chaplain prepared programs.  We each played a role and read some passages, everyone was moved to tears, it seemed.  Love spilled out of each prayer and Psalm. 




Pastor Dale from Normandale Lutheran, along with Karin and Marlyce came to be a part of the Blessing Ceremony and transplant



All of the family present annointed and blessed Elle, even Chloe

The chaplain gave Chloe this beautiful prayer shawl to pray for her sister



Grandma and GG gave it a try too

The stem cells came and the insusion started at noon and finished at just after 1 PM.  Elle's nurse, Natalie, TOLD Elle that the infusion would be uneventful, and so Elle complied.  She did "urp" a little before and after, but not a lot and didn't seem to bother her much.  She is starting to retain fluid though, so they are weighing her, her diapers, and checking blood pressures frequently. 


Her stem cells: A+  and appropriate because it is a PERFECT unrelated DONOR match, 8 of 8

Stefan, releasing the roller clamp, starting her cell infusion and the beginning of a new life for Elle

Cells going into our baby to take over and make her skin better and stronger than it was before

A protective angel holding a butterfly from Mama, Daddy, and Chloe to help carry her until she can fly on her own!



Elle, Mama, Chloe, Daddy, Pastor Dale, Grandma, and GG

Nurses came in with ballons, presents, and a signed card

Elle, surrounded with gifts, love, and prayers

Even Chloe got gifts and baloons!

Once the cells were flowing, all the Docs came in to assess and peek at her

Smiles easily at baloons and Mama and Daddy



Mary (orienting) and Natalie were her nurses today





Letting every last cell flow in via gravity



Marlyce from church hugs stefan in congratulations


 

 

Now we just await the MSC (Mesenchymal cells)* which will be infused very soon now as the other part of the protocol.  The MSC help the tissues that are already affected and rush to their aid to help them heal. FYI, neither the stem or mesenchymal cells are embryonic

Too boring for Elle, she had to snooze, little angel. Grow cells, grow!

*Mesenchymal stem cell - An undifferentiated cell found in mesenchyme and capable of differentiating into various specialized connective tissues.

From Wikipedia, the free encyclopedia
Mesenchymal stem cells, or MSCs, are multipotent stem cells that can differentiate into a variety of cell types[1], including: osteoblasts (bone cells), chondrocytes (cartilage cells) and adipocytes (fat cells). This has been shown in ex vivo cultures and in vitro or in vivo.

Stromal cells are connective tissue cells that form the supportive structure in which the functional cells of the tissue reside. While this is an accurate description for one function of MSCs, the term fails to convey the relatively recently-discovered roles of MSCs in the repair of tissue

Mesenchymal Cell

She did very well, but just developed a fever of 99.2 axillary (armpit) after the Mesenchymal Cells -her dad cools her with a wet cloth while the PM nurse tries her blood pressure

Great news! Baby Daylon, who we followed daily way back early in his transplant process is going home right now well to RMH anyway, but his hospital stay is over -yay!