Back In The Hospital

Yesterday was Emily’s monthly spinal tap.  It went as usual, no hiccups and she was sent home. Having received Vincristine the day before, she was tired and a little puny, but all was normal. This morning when she woke up, she had the chills and was nauseous. About an hour later, she had developed a fever of 103 and began throwing up. Chrissie called and was told to come to the infusion center where they could draw labs and give her fluids if needed. When they arrived, Emily’s fever was still 103, so she was given a broad-spectrum antibiotic and her Nurse Practitioner came in to examine her. After the labs were drawn, Emily’s temperature was taken again, and was 106 degrees. The nurse retook it, thinking the thermometer was wrong but got the same result. Emily was breathing rapidly and her heart rate was up to 170 beats per minute. Her blood pressure was down to 90/30. The nurses called Emily’s Oncologist, Dr. Ducore. The nurses were swarming all around Emily and Chrissie, and Dr. Ducore, usually one to crack jokes, was very solemn as he watched, clearly contemplating the best course of action. Chrissie states that Dr. Ducore’s demeanor is what shook her more than anything. Even when discussing the realities of Leukemia when Emily was first diagnosed, Dr. Ducore was jovial in spirit. It was decided that Emily needed to be admitted.  Pediatric ICU didn’t have a room to admit Emily directly, so even though the Infusion Center is literally one block from the ER, Emily was rushed over via ambulance to make sure she was seen right away.  The medical staff was concerned that Emily was in septic shock due to a blood infection.

Emily arrived at the ER via ambulance and was rushed straight back. Emily was given four boluses, one pushed directly in, started on two more antibiotics, and x-rays were taken. When her blood pressure still didn’t go up, she was started on a pressor, norepinephrin. By 3pm her blood pressure had gone up to 114/55 and her heart rate reduced to 150.  Around 5pm, she was moved up to the PICU where she will likely stay for a few days.  Blood cultures that were drawn around 1:30pm showed gram-negative bacterial growth by 6pm. Though too early to isolate what the specific bacteria is, it’s clear she has a significant infection and Hematology is placing her on an antibiotic cocktail of Vancomycin, Gentamicin and Ceftazidime. Once they know exactly what bacteria she has, the Doctors will determine the best antibiotic for her, and she will need to be on that drug for ten days. The doctors expressed concern about a possible contamination of her Broviac lines with the gram-negative bacteria. As of 9pm, they believe the bacteria came from an internal source, like her gut, and got into the bloodstream, and therefore into her Broviac lines. She will be on Intravenous antibiotics for a minimum of ten days. There is a chance (we don’t know how big) that her lines may have to be replaced.

As explained in “the broviac trapdoor” post in 2012, a Broviac consists of a long, hollow, silicone tube connected directly to the central venous system. Anchored to the skin by a cuff that also acts as a bacterial seal, is the lumen, or opening, of the Broviac. Emily has a split lumen, making her Broviac essentially two catheters in one. Exiting from her chest, the single tube splits into two, allowing different medicines, fluids, or blood products to be infused at the same time. There is no communication between the two lines as they enter her body through the double lumen. The intent is that the Broviac stay in place for the duration of Emily’s treatment, at least another year. For one or both of the lines to be contaminated by a bacterial source is no small matter, the Broviac would have to be surgically replaced.

There is a chance that Emily will not have to stay in the hospital for the duration of the ten-day antibiotic treatment. Emily has always done better at home, once stabilized, and her Doctors are well aware of this. Should the Doctor’s feel comfortable and Chrissie feel comfortable, the idea of letting Chrissie give the antibiotics at home, is being considered. For now, normal hospitalization protocols are in place. So normal, that Emily informed her PICU nurse that Grammie was coming to stay the night and Sissy and Brothers would be going with Auntie Gaby. Entertained, the nurse asked how Emily could be so sure and Emily, with a shrug of her shoulders, said “because, that’s just what they do!” The protocol is slightly different tonight though, as within minutes of Jason putting the information on Facebook that Emily was in the hospital, family members were calling to see how they could help. Tonight, the kids are having a slumber party (hopefully more slumber than party for Eric and Marni’s sake) and sitters are lined up. No email was sent out for childcare yet all is covered.  We are hopeful that Emily will get to go home this weekend based on the doctors suggestions of antibiotics at home but a lot rides on whether her fever stays down without the help of Tylenol and her blood pressure stays up without the help of norepinephrine. As we learn more, we will be sure to update and should the status of things change over the weekend, it is possible a childcare email be sent out for next week.

Please keep Jason in your prayers as he balances work and his concern for Emily. Please pray for Chrissie that Emily’s lumpy hospital bed is easy on her back and for peace of spirit. Please pray for Grammie, for restful sleep as the uniform of PICU involves stifling gowns and gloves, even when in bed.  Please pray for everyone who is helping with the children as the kids very much understand how serious it is when Emily is hospitalized and all work through the emotions in their own ways, and please keep the Doctors and Nurses in your prayers as they watch over our sweet girl.

Thank you all! – Auntie Gaby

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10 responses to “Back In The Hospital

  1. Thank you so much for the update! I am definitely praying!!!! Love you all.

  2. Whenever I read the little Emily is back in the hospital, my heart skips a beat. 106 degree temp is nothing to mess around with!!! Thank you, God, that Emily was already at the ER and Chrissy didn’t have to go through that at home! As always, emilyannelove has my prayers! I don’t know if it is funny or not (?) that Emily finds the hospital a “normal” part of her life . . . I guess it is good in that it is a comfortable place for her and not a place of fear.
    As always,
    Cyndi Heath

  3. Father God, put your healing touch on this precious little child of Yours! Give the doctors wisdom in her treatment, encourage Jason and Chrissie, comfort Emily’s bros and sister, and bless all those who have reached out in love.
    Thanks for the power of prayer!!

  4. Praying! Also, John has been donating plasma, in Emily’s name, semi regularly. We were wondering how this, if at all, directly helps Emily. While it already is a priority, we can bump it even higher on the list if that would be helpful, especially while she may be needing extra care.

    • When Emily needs transfusions, she typically goes through a lot of blood. Though the bloodsource can’t disclose where plasma is going, you guys are doing an awesome thing! Keeping the bloodsource stocked is so critical. Thank you!!!

    • Maggie, would you tell John thank you for me? Plasma is the blood cell carrier, and this is what provides the immunoglobulins Emily receives each month to keep her healthy!

      • Maggie Gedeon

        Will do Chrissie, he goes monthly. It seems that although is ab blood is not extremely useful, his plasma is and the fact that he’s a male with some weight to him, makes him a prime candidate. He’s happy to do it.

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