The Life of Lydia already in progress:

This has been a CRAZY week.  Right now David, Lydia, and I are sitting in the ER waiting on platelets.  She will receive them and we will go home!  I am exhausted.  Lydia is sleeping.  David is amazing.  The boys and Sally are snug at home.

Previously from The Life of Lydia:

So Monday Lydia was discharged from the hospital.  Her fever dropped into the 99 degree mark for several days. 

Then Wednesday Lydia started flirting with a fever.  Thankfully her white blood counts were good.  She was supposed to be readmitted for chemo Wednesday, but because her platelet level was too low they decided to postpone until next Monday.  Her platelet level had not dropped low enough to warrant a transfusion at that point.  She needed red blood that day, but it was too late in the afternoon to receive it.  It takes four hours.

So Thursday we went back to clinic for blood.  Two hours after the transfusion Lydia got a fever of 102.4.  Off we went to the ER, because clinic had just closed.  They tested her for the flu and cultured her blood for infection.  Everything looked great so we went back home.

I fell asleep in my own bed and woke up in my own bed this morning…without the assistance of a baby calling my name.  It was awesome to get a nights sleep and would be great if Miss Lydia would start sleeping through the night again.  She used to sleep through before diagnosis.  Hospital stays, medications, and sickness all have messed with her system.  So I went and checked on her and she was not interested in waking up.  I finally got her awake, but she wouldn’t take her bottle like she had been.  Then she fell asleep again.  She got up on her own two hours later.  All of this with any other baby I would think would be great, but in our world this can be a sign of her shunt failing or a brain hemorrhage.  So back to clinic.  While we were there she took another nap.  The doctor tried to wake her up and had a hard time, like I did earlier.  Once she finally got up she was all smiles and giggles.  Not what a baby with brain trauma should look like, but the doctor thought she should get a CT scan and a shunt x-ray.  They came back fine.  I spoke with both our neurosurgeon and oncologist who felt good about her going home.  Her platelets had continued to drop, but not as low as they could let them go comfortably.  They don’t want her to build up a resistance to platelets, and with the shortage of platelets, they only transfuse when her counts look desperate or with any bleeding.

We get home and two hours later there is blood in her diaper.  So back to the ER, because once again clinic just closed.  Thankfully there were direct donor platelets waiting for her, thanks to our donor and our nurse Jill who got on the phone with the blood bank and had them ready for us.  Our night in shining armor donor gets to save two lives tonight.  The platelets were enough for Lydia and another baby. 


If she gets another fever this weekend we will come back to the ER, but I am praying that we will get a restful weekend at home.  Please pray for Lydia’s tummy.  It has been bothering her since her last round of High Dose Methotrexate.

Thanks again for all of your prayers and amazing support.