Sweet Julia is Free Now

Our beautiful girl left her body this morning. She was so happy at the end, cradled in her mom's arms with daddy by her side and so much love surrounding her. We sang and talked with her, and at the very end we took her outside to a beautiful garden where birds were singing and a sweet cat came to sit on our laps. So many tears, but also joy that she is free from the struggles she has endured with such grace and strength. She left so peacefully, and as Grammie Jen says, "My angel is now truly an angel her spirit is in us all! Her spirit will live on in us all in purple butterflies and flying high in hot air balloons! We are the sad ones but know she is at peace and enfolded in all love."
Love to everyone,
Francesca

Julia update

Grammie Jen Reports:

My dear one, today was another day of roller coasters. We were very happy to hear that her stats were better and her heart was getting stronger. She was using a less toxic amount of oxygen and of course she got approved for therapy and help from the Regional Center, accepted for social security, and Carrie was accepted back into the family house. All good things. The first EEG [measuring brain activity] was good but the 2nd one was very bad. They will do another one but odds are 70% not hopeful. I personally am going for the 30% group of it being OK. [She is getting a medication that can cause the type of results that she got, so they will take her off the medication and repeat the test.] We shall see. It is so hard to see her little body going through this so I choose for the small 30%. Thanks and I love you all and all that you continue to do to for us all!

Love,
Grammie Jen

And a more recent update: 

They have been able to reduce the epinephrin, which is one of the more toxic drugs she is getting, the level of oxygen she is getting is now down to 50%, and her PH is in the normal range. These are all very good signs that her body is starting to recover somewhat from the trauma of the resuscitation.

Miss Julia is making use of just about every support the hospital has to offer. An oscillating  ventilator is breathing for her, she has a PICC line, IVs, arterial lines, lies on a cooling blanket and is being monitored by an incredible team of nurses, doctors and respiratory therapists. She is still completely sedated. She has been relatively stable with all of this support, but must be weaned from each of them before their risks become too great. We know that her heart and lungs have been greatly taxed. Her liver, kidneys and other organs so far seem to be functioning, an impressive feat considering what she has been through. All we can do now is watch and wait and give her tons of love.

And love she is getting. Her family and friends have taken turns by her side today, kissing her feet in their little ruffled socks and stroking any patch of exposed skin that is not hooked up to tubes or wires. Amanda went to school this morning and came this afternoon to visit with Julia. She brought her good friend Oliver with her, and Julia's buddy Finn came in too. Later Julia's cousins Connor and Molly came to see her also. All of the kids did so well, even though it is hard to see their Julia in such a scary setting.

We don't know what the next few days will bring, but we do know that Julia is embraced in the incredible warmth, love and light of her family and her community.

So sad to tell everyone that Julia had a terrible night. She needed to be resuscitated. The team did CPR for more than 8 minutes before she came back. She is now in a medically induced coma. Her heart and lungs have been badly compromised. Carrie and Glen are with her, and Amanda and Oliver are going to come see her after school. All we can do now is send her and her family all our love.

The Fight Continues

Julia continues to be in extremely serious condition. Her pneumonia is severe enough that even with a high level of support from the ventilator, she is struggling to breathe. She is getting medication to help take fluid off her lungs, and she is sedated. She was understandably agitated, which makes it more difficult to breathe, so the sedation is very important.

One bright note is that her two last cultures came back negative. Hopefully that is an indication that the infection is responding to the antibiotics.

Grammie Jen brought Amanda home to Santa Rosa tonight, so hopefully she can go to school in the morning. Nona and Grandpa Don are with Carrie and Glen in Oakland tonight.

I know I don't have to ask you to keep Julia in your minds and hearts; she is already there.

We are with you Julia and family--we are adding our strength to yours.

Strong Julia fights a new battle

Miss Julia is battling a very serious infection. She was transferred to the ICU at CHO in the middle of the night with a fever of 104 and a heart rate over 200. The incredible team there worked hard to get her stable. By morning she was doing a bit better, but continues to be a very sick little girl. She was unresponsive throughout the first part of the morning, but as the day went on we were thrilled to see her start to move her arms and legs again, stick out her tongue when her mom asked her to, and begin to peek out through her half-open eyelids. She was transferred to Kaiser in the late afternoon, where the team who knows her the best was standing at the ready to give her the care she needs. Her 1 mile ambulance ride from CHO to Kaiser went smoothly. She had her mom, a doctor, a respiratory therapist, an RN and two EMTs on the ambulance with her. She tolerated the trip and got settled in to her new bed back in the PICU. The team there went right to work getting more labs drawn for cultures, placing a new IV and getting ready to give her the contrast so she could have both abdominal and head CT scans. Her fever was back up, as was her heart rate, but she was also more wakeful. They are hoping to better understand the source of the infection so they can give it a more targeted treatment, but in the meantime she is getting some pretty intense antibiotics that will hopefully knock out whatever bugs she is dealing with. 

I continue to be amazed at the strength and determination which radiates out from this incredible little girl. She has been through so much in her two and half years, and she continues to work so hard to heal. I know I've used this photo before, but it hangs in her crib at the hospital and I spent a lot of time looking at it today. It is one of my favorites, because it so perfectly captures her radiant, joyful, mischievous self. We love you, Julia. 

Julia needs our love today

Miss Julia had a very rough night and has an infection. She is stable for now and sleeping in the ICU here at CHO, but her condition is pretty serious. Please send all your good thoughts her way.