Day +11 Halloween at UCLA

 

Today the hospital celebrates Halloween by having the kids who can move around go around to the nursing stations to trick or treat. For those who can’t leave their rooms, a reverse trick or treat is done by having volunteers go around to the rooms. Since Elle doesn’t have teeth and can’t eat chocolate, Fernando had to eat on her behalf. He may lose his teeth when he gets older.

Elle used her powers of the force to bring out the little Yoda in herself and charmed the nursing staff in the process. The Force is very strong with her as proven by initial results given to us by the study Doctor that Elle has the highest ADA enzyme activity in cells re-infused back into a patient. Now that means the cells that have been modified with the new ADA gene are working very well. Could that be comparable to Mitaclorians in Jedi? Too soon to say. In about a month there will be a test to see how many of the new cells actually engraft. Long live the Rebellion!

 

Day +10

 

Best quote today from one of the docs was “ You have the healthiest child on the floor!”. Sometimes I think they’re bored with us since there isn’t enough to teach the interns. This is a teaching hospital after all.

Elle is doing well and progressing through the steps needed to leave the hospital. Her blood levels have gone down a bit as expected as she rides the neutropenic see-saw and makes a B-line for the “safe” zone.

Today Thuy flew back to Seattle to get some rest, get out of Groundhog day, and be reminded how Maddie is a handful. Good thing Fernando’s mom is taking care of her and we have a nanny. It’s 3 to 1 right now, so it’s a fair fight. Fernando flew in yesterday to take over duties with Elle.

First thing to do was get Elle into shape with some tummy-time – how cute is this?

 

Day +6

Aunt Emi and Al drove down from the Bay Area to help babysit me. Al (AKA the baby whisper) watched Elle sleep to allow me to go and breathe some non filtered hospital air and drop off the laundry. I would call it fresh air, but I am in the middle of LA, you know. Elle was great for him and only cried 3 times. Each time after Al calmed down from the panic, he just put her pacifier in her mouth and patted her butt (her off switch). She fell back asleep all 3 times. Emi brought me food from the outside world which was wonderful. Elle and I both cried when they left. Elle enjoyed the visit to play with someone who wasn't me.
Elle continues to do well and be quite the trooper. She still has digestive issues and lots of gas which is quite painful for her at times. I hope this is the bottom and we start to come up. She still continues to be super cute and playful. It's amazing to see the transformation out of the "4th trimester." She has mad skills now of grabbing her toys and bringing them to her face. She was sitting on Emi's lap at a 45 degree angle and pulled herstlf to a sitting up position - we were all amazed. They grow up too fast.
I've asked Fernando to post some pics of Maddie. So, if you are wanting to see those, please send him an email to him. I miss her loads and can't wait to see her next week-though I am equally sad to be away from Elle.

Day +4–Almost neutropenic

Elle continues to be very cute and doing well. The key blood indicator that we watch (ANC or absolute neutrophil count) to show her progress on how the chemo is working is starting to drop to the level where she is classified at most risk of getting a bacterial infection. Maddie was neutropenic on day 11, but the doctor says that Elle dropping this early is in the same range as some of the other children in the study. If things continue to go well and if Elle’s levels start coming up, there is a some hope that we can go home earlier. There is some risk that the drop is due to an infection, but we are watching her temperature and demeanor carefully.

Fernando somehow figured out that Elle likes the song Smelly Cat from Friends. Here is Elle smiling, doing her new sucking sound, and finding her hand.

It’s been 4 days, and I have only left the room once.  It actually isn’t that bad since Elle is a good sleeper.  My days are divided by reoccurring activities that last between 15-45 minutes:

1. Feed Elle
2. Put her to sleep
3. Actively play with her
4. Ignore her (other parents may call this allowing her to develop independence by playing alone
5. Actually let her play by herself and sit next to her watching
6. Surf the internet with her sitting on my lap
7. Carrying her around the 10x15 room
8. Talk to anyone who comes through the door and not let them leave

Elle has fashion freedom

This is my current favorite new Elle face. She is growing and developing like a weed and is doing great so far - back to her normal playful self. Elle was disconnected from her IV yesterday, so she is free to move around the room without being connected to a pole holding her IV fluids. This also means that she can wear 2 piece outfits - oh the fashion freedom! She will continue to get blood draws at least 2 times/week which means we may need to handcuff her back to the pole. From a mother's perspective, I feel like I have a new baby again! While she was hooked up to all of the monitors, we had to keep her in her crib a lot. Now that she is wire free, it is great! Just sitting with her on the couch feeding her is a wonderful feeling...and easier on my arms and back.


So, I've been alone with Elle for over 48 hours in her room. I haven't left this space, but I did open the door to look out the hallway. I know - crazy. We do have a view outside which helps though the rainy LA weather has been reminding me of Seattle. Random that Seattle has sunshine right now and LA has rain. Luckily, Elle is a great sleeper which makes this solo schedule much easier. She sleeps through the night from about 8 to 5:30 only waking to eat. She then goes back to sleep in until about 8 then will just play in her crib until I decide to get up to feed her. She is on a pretty regular 1 hour nap schedule 3x/day. Let's hope this continues at least until Fernando gets here next week to swap shifts.


Fernando has reported back on Maddie and that her personality is even stronger than it was before. She has now gone from dropping food on the floor to flinging it across the room. Sweet. I have a baby monitor in the room that I am going to try out. I am going to sneak away to get some food downstairs from the cafeteria. The nurses station will listen and if Elle cries, they will send in reinforcements.

Day +1

Yesterday once again, a PhD carried the stem cells over from the lab.  There was a lot of discussion on guaranteeing that the cells belong to Elle since there was only 1 identification number (standard hospital procedure is to have 2) and her name was not on the syringe containing the cells (to hide her privacy in the clinical trial results).  Finally Dr. Kohn said that Elle’s cells are the only cells that have been in the lab all month, so there is no way there could be a mix-up.  Elle did great during the transfusion.  She was super mellow (a little sleepy from the Benadryl) and just laid there and watched as the slight chaos happened around her.  There were 6 PhDs, 2 RNs, and Fernando and I with the least number of initials behind our names.  Elle was being monitored all night post transfusion which means there was constant beeping.  That combined with this weird banging sound occurring in the water pipes in the wall was the formula for a poor nights sleep for both Elle and I.  Now we just keep Elle infection free and hope her new and improved stem cells graft.  Congrats little one for being such a fighter and making it this far – and looking so cute all along the way.

Fernando flew home to sleep in comfort yesterday.  This morning when Maddie first saw him, she looked at him like she didn’t know him.  Then she pointed at him and said “Pa Pa!”  Her newest skills include climbing up on the dining room chair and removing the vent covers.   I can’t wait to see her again late next week.

Day -1

Today Elle sat up for the first time. Fernando says it is because she is like a bean bag with her pudgy tummy supporting her in the sit up position. She is feeling a lot better and has been quite chatty and more smiley. For the past few days, she has only been smiling at Fernando. She won't even look me in the eye, but today, I was able to get a few great smiles from her.

The weekends are normally quiet here. Yesterday, the pediatrician normally following Elle had the day off, so Dr. Champagne (yes, that really was his name) took over. The attending doctor didn't have his normal entourage of fellows, med students, and interns. We call them the gyno girls even though that is not their specialty. When you spend 24 hours a day in the hospital, you have to find something to entertain you. I really think the doctors here (at least the fellows and med students) are more attractive than the national average - so LA...

So, what was on our agenda today, ie what will we search for online ad nauseum? What new car I will get after the Jeep (or the go cart) goes to car heaven.  I think watching the nice cars getting valet parked is getting to us.

9 AM - Fernando narrows the decision to Audi A4, BMW 3 series, some Lexus sedan, or Jaguar.  (Jaguar is soon nixed as we see the price tag for the entry level model.)
10 AM - I decided I wanted a Mercedes C Class sedan. Fernando tries to convince me otherwise.
1 PM - We now want a car that we get to go to Europe to pick up. Fernando is ok with the Mercedes since we can go to Stuttgart to pick it up.
5 PM – Since we live in Seattle, we decide to wait until an electric car or electric hybrid comes out. Mini E and Audi come back into the picture as potentials.  So, hopefully our backs and the Jeep can last until at least 2013. 

That's a full day for us. I'm tired. Now it's time for us to read by flashlight so Elle will sleep...