Archive for September, 2013

Our very sick girl.

Our very sick girl.


Our very healthy girl.

Did you miss us?  We have had a hell of a summer. A new house, a huge renovation to make the home accessible for Ella, travel, a new school for Ella and a long fucking hospital stay for a very, very sick Ella. Here’s how it went down…We put our condo on the market thinking it might be a good idea to find a one story house to make things easier as Ella gets older. It sold in three days. Our fabulous real estate agent found us an adorable ranch on a sweet and very special street. The street however is outside of Ella’s school district.  Ella had to change schools this fall. A big deal? Yes, but with the help of Ella’s current school and the fabulous team at her new school it has been an easy and pleasant transition for us all.  So we moved in April to our new home. A 1950’s Mad Men style ranch that needed a lot of TLC. No worries we were up for and excited by the challenge and potential of the home. We lived in the house for three weeks, then left for Maryland the first week construction began. Our plan was to stay at my sister’s for three weeks and then the beach in Maryland for three weeks and come home to a brand new accessible home. Nope, not how it happened. As soon as we got to my sister’s, Ella started crying and didn’t stop crying all week. Something was very wrong, 5 days later something was very, very wrong. Dave and I decided at 1 am that we needed to get her back to Vermont and back to the docs that know her so well. It was the longest drive of our lives. I still have flashbacks of the drive that I will need to process and let go of soon. We got her to the doctors and they admitted us in the hospital right away. Ella had pneumonia, an aspiration pneumonia. We spent 5 days in the children’s hospital with Ella on heavy iv antibiotics, breathing treatments, deep lung suction and chest pt. Ella got better, or so it appeared. We were discharged and came home to a house that was well under construction. We were confined to one room in the back of the house and no bathroom. We spent three days there and then it became very clear that something was not right with Ella. She was still crying when she was awake and very hard to feed. By the third day she was not waking up. We took her back to the hospital and were admitted once more. Her electrolytes were off and sodium level was off the chart. She was put on an iv to correct her levels.  After two days on an iv, Ella became very edematous gaining 12 lbs in one day. Then, shit went down, her blood levels dropped. They dropped so low that Ella had to have a blood transfusion. The palliative care team came in to begin end of life planning with us. Yeah, it was that bad.  However, Ella, being Ella the great, started to improve. Her electrolytes levels started to normalize and blood levels stabilized. The only thing that was not improving was her sodium level, it remained high. After two weeks we were sent home to the construction site that was our home. Still confined to one room, this time we had a toilet. We stayed a week then decided to go to the beach in Maryland for a week. It was stressful, Ella was still sleeping a lot, very hard to feed and just not herself. After the week at the beach we came home, had Ella’s blood tested and her sodium level was still high. We decided to go back into the hospital and have her put on an IV to see if the level would come down. She was given fluids very slowly over three days. When she started to look swollen again we stopped the fluid. Her sodium level didn’t change, in fact, it went even higher. We were sent home to manage it on our own. This time we didn’t go home to a construction site. A very sweet friend had a friend who offered us their beautiful lakehouse for a week.  It was a wonderful retreat. Ella started to improve, but was still very hard to feed. We started to think about having a feeding tube placed in Ella’s belly. We met with the gastro doc and they put her on reflux meds until the feeding tube surgery could be scheduled. Ella immediately got better. We were able to feed her, get her properly hydrated and her sodium level began to normalize. We moved back into our house, still under construction, but we had a beautiful, accessible bathroom and our bedrooms. We spent the rest of the summer getting Ella well. She is better! Better then EVER! We had several follow up appointments this week and the doctors are all so thrilled with Ella’s recovery. Telling us to “Keep up what you are doing Mom and Dad.”

That was our summer. Now we are in our beautiful, mostly finished home, with a healthy, happy Ella and are ready for a quiet, lovely Vermont fall. My next post will be very soon and I will give you a tour of the house.


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