Today, Eliana began her third week of life. What a life it has been so far! First she is taken early from her mother's womb because her little heart is deteriorating. The medical team stabilizes her and makes plans for surgery when she is stronger but time runs out. A week ago today, she was rolled into the surgical suite where the medical team swabbed her infant chest with disinfectant and her cardiac surgeon began the first cut. For hours, the doctors labored over the tiny heart, roughly the size of a walnut. They repaired and stitched and gave their all to save this wee little girl.
The past week has been a roller coaster. One step forward and then one backward. Many of you have been receiving a daily update from me containing the messages that I received from the family. But for those of you who are only reading the blog, here is a brief day by day recap:
9/02: Wednesday: Eliana had a difficult day and the team worked hard to stabilize her for surgery.
9/03: Thursday: The surgery began around 9am. and continued thru the day. The surgeon was very pleased although there was some bleeding. Her tiny chest was left open and she went to the Pediatric ICU where she has two full time nurses and so much equipment that two full ICU spaces are dedicated to her. Not long after her arrival, she began have problems breathing and her heart rate was slowing so she was placed on a ECMO machine, which maintained her heart and lung function. There were serious problems involved with using the machine and children who are placed on it usually only have a 40% percent chance of survival.
9/4: Friday: Eliana is stable with some blood loss. Lymphatic gasses are very high but are coming down. The medical team was able to get the camera into her chest and check her replaced valve, it is leaking some and they did a little repair. Her heart rhythm is off so they will change her meds. Family advised of the side effects of the ECMO which include bleeding, blood clots, blood on the brain and organ failure so Eliana will have a brain scan daily. Chromosome tests are back; she does have Digeorges syndrome which means that she is missing part of a chromosome and her heart problem is related to the syndrome.
9/5: Saturday: Color is good today. Brain scan is clear, kidney ultrasound is good, lymphatic gas number is down from 11 to 3.5. She has lost some weight so they will increase her fluid intake and she peed. Eliana has opened her eyes and moved a little today.
9/6: Sunday: Vital signs are good and all repairs look good. Medical team tried to remove her from ECMO but the right side of her heart wasn't strong enough and her lungs are not inflating properly. Team plans to work on her lungs by gently inflating them. They will try again tomorrow to remove her from the ECMO.
9/7: Monday: Eliana had a bad night. Bleeding has increased and she was crying so received some pain medication. If the bleeding doesn't slow or stop the surgeon will go back in and do more repair. No attempt to removed from from ECMO today, maybe tomorrow. Brain scan normal.
9/8: Tuesday: Surgeon went in last night and cleaned up heart so blood loss is way less today. This morning she had a little blip and her heart started racing with an irregular beat so she was medicated and given a little pain medicine. Brain scan is normal. Decision made not to try and take her off ECMO and stress her any. Penny and Don were allowed into the PICU to see and touch her. Penny held her little hand and Eliana clasped her finger and hung on to it. They can't wait for her to be well and snuggled in their arms.
9/9: Wednesday: Her color is good this morning, eyes are open. She has developed a slight kidney problem. The team is working on her lungs. Brain scan was normal. Team hopes to get her off ECMO tomorrow.
9/10: Thursday: Color and blood pressure are good today and her eyes are open. Team started dialysis to support kidneys and keep toxins from building in her blood. Eliana removed from ECMO and breathing on her own. Her condition is still critical but improving.
9/11: Friday: Early morning report: Still breathing on her own but having a little problem with blood pressure so they will give her some blood.
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This post was started on Thursday night and finished today around noon. In each message from Grandmother Penny she sends the family's most heartfelt thanks for all the prayers and support. Strangers who have never met the family are praying for this child of God. Her name has been added to the prayer book for Catholic Mass at the Newman Center at UNLV. An LDS prayer group is praying for her, the family and her medical team, several churches have prayer groups sending petitions upward to heaven. People from all religions are mingling their prayers and thoughts, sending love, blessings and light to this family, the medical team and for the tiny child God is holding in His Hands.
Thank each one of you for opening your hearts. This is going to be a long journey, so please stay with Eliana. If you would like to send any message to the family, either post on the blog or send to me and I will forward to them.
P/S: Eliana is a Hebrew name which translates: God is my answer or God has answered me. It is pronounced: EL - long e - ah- nah.
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Latest update for today: Friday 9/11 from Penny:
I am happy to send the message below from Becky. She is so grateful for all the prayers and may we all be blessed by this miracle. The news is optimistic but guarded so please don't stop praying. I have also included a picture I don't think I sent it before, of Eliana and her Mommy holding hand (finger)!
"Ok the surgeon came by this morning and thought we were looking pretty good. He would remain somewhat guarded but he was quite pleased. Thought lungs and to some extent kidneys are what we need to keep an eye on. The cardiologist did and echo this morning and all the repairs looked good. There some thought there might be some blockage in the pulmonary arteries (things to lungs) but they want to get more views as hard to see. That would be something fairly fixable if it needs to be though they are in no rush to go in. They will look more next week, nothing to panic about but something to keep an eye on. Surgeon just came by again thought the blockage was a possibility but wasn't sure so again just something they will keep an eye on. He's pleased her lactates are going down. If all continues well the plan is to keep as is over the weekend. On Monday the surgeon would go in and clean her up a wee bit and like make the chest opening a bit smaller with the idea to try and close her up end of next week. All goes well we probably have about four more weeks in hospital with dialysis and getting her eating. Oh and I was out pumping when the cardiologist first came and I guess he said Ellie was a strong and stubborn little girl. Apparently Chris took credit for one and laughed about the other...who knew he thought I was so strong ;-) "
You have all been such a blessing to us! May you be blessed as well as we continue this healing journey!
"...and I will bless you, and make your name great; and so you shall be a blessing; and I will bless those who bless you." Genesis:12 2-3
"Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ." Ephesians 1:3
bit of humor - I got to the kitchen this morning and realized I had put my pants on backwards! For those who don't know me I am a large woman and I have no idea how I managed that feat - and without even noticing it! Silly Gramma
Penny
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Light & Love,
Granny B
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