So change of plans and whirlwind 24 hours. We came home from the hospital Thursday afternoon and Kiara's oxygen hung out at 85 during her nap. Her oncologist talked with pulmonalogist in Indy and their plan was for us to come in this morning,  Friday, to Indy for tests. Since her oxygen levels were dropping, I needed to bring her in again already Thursday. I haven't had much sleep over the past couple days so I opted not to try to drive up to Indy, which was also advice of oncologist and Brandon. I brought Kiara to Evansville ER and she was transported to Peyton Manning Children's in Indy.

  She did need oxygen overnight and the plan is to rule out any major concerns through testing and we get sent home with oxygen for her overnight as needed.  She had an echocardiagram, swallow study and xray of soft tissue in neck today (looking at tonsils and adenoids) with sleep study to be scheduled later. The xray looked fine, we'll hear about echo results Monday (but no news now is good news) and had rough results from swallow study. Therapist recommends very thick liquids which Kiara has not preferred so far.

     Oxygen supplies were delivered to the hospital. After getting some fluids I requested because she hasn't drunk much past few crazy days and is not wanting to drink the new thickened liquids,Kiara is discharged from the hospital.  A friend will pick us up and Brandon will meet us and drive us home. 

    Our final bump for this stay is that her port is not as it should be. When the very experienced nurse tried to access it, the needle made a strange sound and it was painful for Kiara. There's a concern it's moved again.  I'll call Monday to request xray in Evansville so hopefully it's figured out before her spinal tap on May 7th.

     While this is a new road on our journey,  Kiara is doing well and is healthy overall.  She brought joy to those we met today and it was great to see staff again.  I would like to ask for prayers for a family I met on the playground.  Their son, who also has down syndrome, has been in PICU for 7 weeks and has been in critical condition and has a long road ahead of him.  

 Blessed Chiara Badano; pray for us.

Blessed Fr. Michael McGivney: pray for us.

Blessed Carlos Acutis: pray for us.

Our Lady of Sorrows: pray for us.