Adapting To Life In Hospital

Hospital life is rolling along. We begin to realise what the new normal is. Paul and I have accepted it head on and continually adapt to what we need to do to benefit Ellie in the best way. We are utilizing the play therapist, the music therapist, the social worker, the clinical nurse consultant, the child psychologist, an educator from a not for profit organization, and Hospital School, which is a NSW state school explicitly for children in hospital. We continually liaise with her physical therapist, the occupational therapist and of course the amazing team of pediatric oncologists and nurses who are all managing her care.
 
We have changed from a schedule of alternate days with Ellie to 3 consecutive days each (with Aunty Jen there on a Saturday). We journal Ellie’s blood results every day, watching her white blood cells, platelets, hemoglobin and neutrophils, and any procedures that she had or has upcoming. We communicate on a white board to record her wees, poos, vomits, what she eats and what she drinks. We are being the best advocates we can for every nuance in behavior or mood change and every variation in physical status. We are doing all this while attempting to work from the hospital and maintain our jobs. 
 
We are very cognizant of Annabelle’s needs and are doing all that we can to nurture her in this time. She has become very…not needy, not clingy, but just cuddlier and wanting to be close to me. I love it! Jen has really assisted in keeping Annabelle on her normal schedule, doing school pick-ups and drops offs regularly when Paul and I are at work or at the hospital. Annabelle is being very well supported by her teachers, the principal and the other families at school.
 
And, lastly, you are eagerly wondering how our dear Ellie is doing. Our sweet girl is in the greatest struggle she has ever faced. She is down most days due to the continued nausea and high temperatures peaking at 40.9 C (105.6 F). She does her best to perk up and have a few sips of water and a few nibbles of food when the temperatures go down, but it drains her so much. I truly don’t know how her little body is handling it. She is on 3 anti-emetics around the clock, an anti-fungal, paracetamol (Tylenol) every 6 hours, now an anti-hypertensive because her blood pressure is going up, and she receives blood products almost every day. She has also been started on a morhpine PCA (patient controlled analgesia) due to abdominal pain which is likely due to mucositis in the gut. All the mucosa in her body (mouth, gut and bowel) that has rapid turnover of cells gets damaged by the chemo and can become ulcerated, and thus extremely painful. So far, we don’t think it’s too bad but we are aware that it can get worse.
 
You have all showered Ellie with well wishes, gifts and cards and each one does brighten her day and usually elicits a smile. Paul and I choose our moments to present her with a gift/package so that she can best enjoy it. Sometimes it takes days before we can find the right time to give her something that has arrived in the mail.
 
There is so much to tell but this is the update I have for now. Love to all of you and thank you for your prayers, love and support xx

KC