July 23rd, 2013 | Written by Jo
Clara is back on the puke train, although not as bad yet as before. She went 48 hours without eating anything, just was getting IV fluids, and then we put her on the lowest fat formula there is to try and stop the chylous effusions. If this doesn’t work for her, we don’t have any other formula options.
Thankfully, her lungs are making slow improvements and the effusion (puddle on her lung) is getting smaller each day. This is a slow slow process as you can imagine, they don’t even check the progress every day.
We haven’t identified the reason for the vomiting though, so a GI team got involved today and we will have a bunch of tests done tomorrow. This means we are definitely here a few more days minimum.
I got an answered prayer this morning when the Hospital housing office called and a room opened up for us beginning tomorrow through next Wednesday!! So I called my Mom and she is coming up to be with Clara and I!!!! (Joe is in DC working and finishing up a couple classes he is in.)
I’m so excited to see my Mom and have some company and be able to go to the grocery store!
Clara is so fun and cute. Her nurses kiss her and even tell her they love her sometimes. hahahaha. It’s awesome how grown doctors here make silly faces at all these kids - this is such a wonderful hospital.
They brought me one of those toys that sings and talks when you push buttons, Clara was just so shocked by the magic and stared at me playing, totally frozen. We might need to stick to the car. She LOVES the car.
We are praying that we are able to identify the source of the puking and that we can find a solution. Also for continued progress on her lungs. We are just super thankful for how happy she is and how fun she makes the hospital.Leave a Comment
July 19th, 2013 | Written by Jo
I thought I saw the light, but it turned out to be Clara’s reverse lights! This is our THIRD admission, in a row, to Children’s Hospital.
We are in the hospital again for wet lungs (from chylous Effusion) and for living in barf city, USA. Clara says, “We love it here! Can’t get enough… wait, they want to take my temperature and blood pressure?!?! GET ME OUT!!!!!!”
Clara did more than her fair share of puking yesterday (which is the #1 sign of distress for her), I thought our issue was all GI and food related. I was really surprised to hear her x-ray revealed a big chylous effusion on her lung - AGAIN.
Sigh, so much for trying that pigtail drain.
There is no obvious solution to having Chylous Effusions, her lymphatic system can’t tolerate fats and dumps this mucus looking fluid on her lungs. We tried a drain, we did the meds that dry her out and we put her on a fat free formula. I think we just still try those same things.
Meanwhile she is having another issue with her tummy. She can’t seem to pass her digested food past her stomach… and up it comes.
Clara has figured out that IVs and hurty things, hurt. Now she cries with the power of a thousand babies. And that made today feel like a thousand days.
Please pray -
That Clara’s IV stays forever! Seriously, make it a miraculous IV that never fails
That they can find a way to fully treat the chylous effusions and her lungs dry up for good!
That a solution is found for the vomiting
That Clara is not afraid of any of the nurses or doctors and even as she is aware of procedures, that she is strong and courageous!
That housing at the Yawkey house opens up so we can stay close together!!
For encouragement and joy for our family
And here are some photos of Clara from more fun days!Leave a Comment
July 15th, 2013 | Written by Jo
We are still in the hospital but made a big step forward today, Clara had her drainage tube pulled! She immediately started feeling awesome.
The puking was explained as a result from the surgery, something about her stomach not contracting correctly. Details aren’t important, here is what I heard - it will pass with time and it is a result of being in surgery.
Now that the tube is out, we might be able to get discharged again in the next couple days. However, they still don’t want us to leave DC, we will have to hang around, go in for a last check up and if we get the clear we can finally head home.
Clara’s favorite thing starting about 8 or 9pm is to sing and yell. She is acting like a total night owl! This is a gift from me. She and I will have years of dance parties all night.
Somehow she has Joe convinced she needs to be sitting up instead of laying down. Clara, it’s 11pm.
Pray we can get out of the hospital and that Clara stays stable enough to go home! Love you our lovies!Leave a Comment
July 11th, 2013 | Written by Jo
Good news, Joe is back in town! He is staying with some friends just outside of the city while I sleep with Clara. I got my giggles back and we started debating if I’m funny or just self entertaining. Joe thinks I enjoy my jokes maybe more than they deserve. Example:
We are about to cross the street at a very busy intersection in front of the hospital, there are lots of cars and lots of people.
Joe: Ugh, I have a new pet peeve!
Me: People walking like a noodle?
Me: giggling (and pretending my limbs are made of noodles)
Joe: No. Bad drivers. (looks at me like I should probably stop)
Me: giggleing (continues on with occasional “noodle walk”)
Let’s be honest, I’m giggling about it right now and tomorrow when I am caught up on some sleep, I’ll probable be all, “ah whaaaaaa?”
I’m going to embarrass Clara a lot when she grows up. fact. can’t help it.
This is supposed to be about Clara right? So, after no improvement on Clara’s lungs she had a chest tube placed to drain the fluid. yuk. She is finally acting like things are not going well, lots of grunting, ocassionally grunting out farts. Still super cute but definetly not feeling very well. It’s sad. I don’t like it so I ask for the drugs and the sweet nurses bring them.
When they placed the drainage tube, about 40ccs came out right away, which sounds like a lot to me, but they said there looked like there was a lot more than that in there. I’m praying it just flows out and that she stops hurting. It is chylos effusions, that bad stuff caused by eating fats. Clara is on a low fat formula now.
We will know more about her progress in the morning.Leave a Comment
July 10th, 2013 | Written by Jo
Today was supposed to be a final check up for Clara, then we were going to catch an early flight home, to DC, Thursday morning. I was so happy with how well she was doing when we were discharged, that I told the family housing we were leaving and our room would be free.
The first thing we did for our checkup was to get an x-ray, and right away the doctors knew we were not leaving. There is a LOT of fluid in her lungs, new fluid, and it is causing her to desat. She isn’t even responding to oxygen. We were re-admitted.
I could feel the tears of disappointment well up, but they were held back because Clara was in rare form. Giggling, talking, singing and trying her best to play with everyone who came in. She wanted to touch everything and called out to anyone not looking at her and burst into random giggles, it was hilarious.
So in a flurry I got Clara settled and checked out of the housing we had and moved into the hospital with Clara. She is back on the vomit bandwagon, and has a pretty amazing foot IV that is wrapped in a diaper, I promise a photo will appear on instagram tomorrow.
We will see what IV meds do, for drying her lungs out tonight, but she is being prepared to tap her lungs for drainage. That means they may be putting in a drainage tube again - which are uncomfortable. We think she probably has chylous effusions again (bad bad), so she is on a low fat diet. I don’t know if any little car rides are in her near future if that is the case, which probably bums me out more than her.
Good news though, we have LOTS of friends here.
I’m pretty excited to see one family. Baby girl just got her new heart. We shared a room with her and I prayed for her every night as I’d hear her little cries. It’s amazing how much love can grow by praying for someone. My prayer was that we would be here to see her get her heart. And here we are.
Thank you for praying for Clara and us. Thank you. I was sustained by Clara’s perfectly timed joy today. Please pray for:
Quick drying out of Clara’s lungs
That if she gets a new drainage tube put in, it’s not painful and she can still ride in cars
That local housing opens up for us again
Thankfulness for our friends the Macres, who will again take us (Joe) in and thankfulness that Joe can come back to Boston to be with us
Thanks for getting placed in a single room where Clara can sing as loud as she wants!
Thanks that we have so many wonderful people surrounding us in BCH, nurses, doctors and other families
Good night homies.Leave a Comment