Fireworks for Lulu

Lulu Ysarua Martinez is off ventilator talking to me (mom)and breathing on her own will post later


What a happy bit of news before the 4th of July.  Little does Lulu know but the fireworks are for her.....

Bit More Progress.... Information from Natalie, who is exhausted and headed home for some much deserved and needed sleep.

Lulu is moving all limbs can answer yes.or no questions and was able to tell us she she is in pain working on sedatives and getting her comfortable no change in lungs ventilator down to 50 percent so doctor said going in right direction has blood clot in right arm started blood thinner. .low fever....dad is staying tonight to give me a break. ..get to see my other girls and my bed...Lulu strong from the icu.


No matter how bad it is at the hospital, going home to your own bed is the best medicine...

Hoping Status Quo is a good thing...

Meb is still working on getting better.  I am watching a very difficult recovery, even though it is a cold.  Like last time, it takes extra time for her to get better. 

Considering how much Lulu has been through, high fever, strep, full lungs, collapsed lungs, blown pupils, unhappy kidneys.  It is hard to know how her recover will transpire.   Very very slowly I am sure.  

Hoping today is a day of explosive ANC activity.

Lulu is still the same....pupils are responding but no body movement....her baby sister Rylee  and Payton have been by her side today...they have been talking and joking and crying out to their sister to give them a sign a flicker anything to show them she is there. This was hard to watch and hear...sisters fight...sisters bicker...sisters irritate the crap out of each other...today was humbling...sisters begging for their sister to survive to fight to live another day to go shopping.. fishing...and to braid their hair...they are here lulu waiting for you. ..give them a flicker...

Hoping

 for lots of rest and some stability for Ms. Lulu.  

We all know the Waiting and Not knowing is the worst.

There is so much about the human body we don't understand but lots we do.  We are fragile. We are tough. We have lots of back up systems.  If something is not working right we keep on trying to work it out one way or another.  

Sort of like Meb's weird lung stuff.  They found something in her lungs at her two year follow-up.  25% drop in her lung capacity.  She had not noticed because she was just breathing faster.  She is stable but her body seems to have compensated.  Kind of like her big blood clot in her Jugular Vein when she was first diagnosed.  Her body had established new side vessels to get around the clot.  Who knew ?  The body is a magical thing. 

Who knows how things will turn out for Lulu, her family is there letting her know they are waiting. While unstated, I am sure they are so afraid and worried and anxious.  I do know all of this is a process.  Getting better or not, is not something dramatic or earth shattering.  It is gradual. It sometimes starts with just a twitch or a voluntary movement. 

Lulu's sister is waiting for the sign she is coming back.  Hoping something will let every one know there is healing beginning to happen.   


Lulu is still the same...kidneys now are not working and pupils still blown and unresponsive they did a eeg to check for seizures but she is not having any...they have stopped her sedatives to see if they can get any type of response. ....her sister Payton  has been holding her hand for hours in hopes to feel movement...she misses talking to her sister and this picture says it all....please lulu...give us a sign

Life and Death keeps happening.

I was trying to figure out how to proceed yesterday.  Kid has been sick, cough, really bad cough, ache body, not out of bed.  I had a touch but with some ossillium and some long hours of sleep, I was able to knock it back.  Blessings of having a completely strong, healthy immune system. 

So she is not Emergency worthy. She should not be a Seattle Children's spreading this thing and is NOT that sick.  She has a cold.  So on day 5, I make an appointment with our family practice.  Nice new doctor.  She really is and it takes her a while to realize we aren't kidding when we start to say things. 

Yes, leukemia twice, Double cord blood transplant and menopause.  Port, blood clot history.. she feels the thyroid and says it feels fine.  We mention there is not working thyroid.  I am sure she thought we were (Secret Weird Patient).  So she suggests and X-ray, I think it is over kill but after a call to the SCCA they want one. We ask about going to Children's because it is close but no.  Then they ask if they took a nasal swab.  Of course they didn't.  They don't do that in real doctor world.  

So basically we failed to get the job done. I can see the call is coming today to go back to either Children's or SCCA and get swabbed for Strep and to snot in a cup and there will be cultures and more investigation.  Her heart rate is 122 and that tells them her lungs are working. I don't want to get too close to the hospital because we know what happens there....


So in one world I have a 21 year old with a cold.  Feels miserable, just home from college.  But because she has spent 10 years in Cancer World, I take a kid that clearly has a virus to see the Doctor.  

In Cancer World, it is serious.  It could be, pulmonary embolism, weird pneumonia and let me tell you.  They will culture and swab and image her to death.   So since we have one foot in and one foot out... today we make the calls and figure out what to do.  
She slept last night so I think she will be fine.  But then I am reminded how fragile these kids are and how a cold can take you down and not in a good way. 

So while I am whining about this stupid cold and how inconvenient all of this can be Momcology brings us Lulu.  A month ago she was going to prom, she was graduating she was spending time with her family. 

5 days ago she was sent to the ICU with high fever and poor lung stuff and she is so so sick.  This was her mom's post this morning.  


Lulu Ysarua Martinez Has Collapsed Lungs And crashed at 430..they now have her on stomach and adjusted ventilator to keep lungs open longer and less pounding on the lungs which is causing inflammation. .doctors said next hours critical. ..looks like to save her she will have to go on the ecmo machine. ..they told us she doesn't have the capabilities to heal on her own ...will update later.

I don't know these people, I will probably never ever meet them.  I will however remember that there are two paths on this road of life.  While I feel we have missed out on so much because our life has been stagnate and boring and complicated by this thing called Cancer and life has passed us by.  I will also remember Death has passed us by.....

Prayers/Chants/Rants/ for Lulu.... A lovely lovely young woman who wants to live her life like a normal person.... No on her stomach in a hospital bed surrounded by monitors and other such invasive things.