Wednesday, December 5, 2007

A very expensive Vacation

Averaging just over $3,000 a day, Eden and I stayed at Children's Hospital down in DC. Eden was admitted in the wee hours of the morning 12:26 on Tuesday, November 27th and was discharged on Wednesday, December 5 around 4:00 p.m.. It was an emotionally draining 10 days. If they would have kept us longer I would have gone utterly mad. I had lost it. I needed to go home.

The ER

From the doctor's office we went to the Emergency Room at Children's in DC knowing full well that they were going to admit us. They let us sit in a room by ourselves so that Eden wasn't exposed to the very full waiting room of sick kids, which I thought was very nice of them. By the time we were brought to triage Eden's oxygen level had dropped to the high 80's, and of course normal is 100%. The nurse that got us started on the paper work and assessed us at the beginning got yelled at because she should have put us on a higher priority because of respiratory distress. Eden was immediately brought to a room where she was given oxygen, and a breathing treatment. We had all of the blood work done that they could possibly need as well as her mucus and urine tested. We then had an EKG and more X-rays. The blood work, urine and the EKG came back perfect. The test for RSV came back positive and the x-rays showed that she could possibly have a viral pneumonia.


While we were there, Alan got the kids fed and in bed after a very long wait at Target for prescriptions for the boys ear infections. He was thinking about who to call to come give Eden a Priesthood blessing. Our home teacher called to let us know that he was not going to be able to come this month, and asked if there was anything he could do for us. Instead of pretending that all was well, Alan asked if he would drive down to the Children's Hospital in DC and assist in giving a priesthood blessing. I truly believe that the Lord inspires people so that we can be watched over and cared for, and so that we can know of his love for us.

Hospital Stay
After being wheeled up to our room we said goodbye to our sick daddy and slept, well tried to. The next day I met Dr. We talked for about 30 minutes about everything that was going on as well as ski slops in Utah! I really felt like he listened to me and took into account my thoughts and feelings, in terms of Eden's weight gain. He asked how long I would give him to figure out her weight problem. I told him 2 days, we both laughed, ironically that is exactly the amount of time I gave him. He told me that he would not hold me in the hospital because of weight gain, The only thing Eden needed to do was keep her oxygen level above a 94 % through the night.

Eden was so good, she charmed all of the respiratory therapists, nurses, lab techs, cardiologists, and the resident doctors. Her Doctor was baffled as to how a baby could be so content and happy when she was so sick and wasn't gaining weight. She would just lay in her tent and look around happy as could be.

She basically ate and slept, they don't treat RSV with medication they only treat the symptoms. It got to a point that she really only needed oxygen when she slept and after her coughing spells. Although according to the monitors she was constantly in distress. The alarms were constantly going off. They said it was because her body was so small that the leads weren't far enough apart to give an accurate reading (so why have them on, I have no idea). By day 8 she was able to go without oxygen but they continued with humidified air in her little tent.

I only left to go get food and would usually get both lunch and dinner at the same time and after 5 days I left in the afternoons for an hour or so just to get out. I would go for walks. I felt weird leaving Eden knowing that the nurses had other things to do and about 4-5 other patients to take care of. But I took comfort in the fact that she was sleeping when I left. Alan brought me the lap top with down loaded Christmas songs, as well as a book, paper, calendar, phone charger, thank you cards, phone directory, and snacks. By the end of our stay I had my own little office set up. Which ended up being a blessing because I was tracking how much she was eating, how much I pumped, if she throw up during feedings and how many wet and dirty diapers she had. There is nothing quite so empowering as the doctor asking for information and being able to pull up a spreadsheet and show them what has been happening over the last 24 hours. Everyone was very surprised that I was a mother of 4. I don't know how many times I answered the question, "Is this your first?" No this is my 4th, as I grin at their very shocked expression. In fact one of the respiratory therapist was giving Eden a breathing treatment and he asked if this was my first child and I told him that it was not that I had 3 other children at home. He didn't believe me, luckily Hannah had drawn me a family portrait. He said, "I don't mean to be fresh with you, but you do know who is the lucky one in this equation?" I was completely lost to what he was talking about so I responded, "Grandma?" "No, your husband, you don't look like you have had 4 children!" Nothing like getting hit on when you feel anything but attractive!! Alan got a kick out of it.

Alan and I arranged a time for Hannah, Peter, and Joseph to come visit us. I told the nurse about it because I was so excited to see them. She told me that they didn't advise it, because they didn't want them to get what Eden had. My sweet husband came anyway with Ledo's pizza. We ate in the cafeteria and then we all went up and hung up pictures that the kids made for Eden and I. It was so good to see them.

Since 2 weeks I have been pumping and giving Eden the breast milk from a bottle so that we could monitor how much she was taking in, how much I was producing to see if both were enough. I continued that in the hospital, we were also trying to increase the amount she was taking so that we wouldn't have to force feed her every 2 hours and she could choose her own schedule. Still no weight gain. We then started fortifying my milk by adding a small amount of powder formula. Making it 22 cal. instead of the usual 20 cal. Still no weight gain. On day 9 we increased the powder to make it 24 cal. with the promise we could go home the following day if she had gained weight. They did their weight checks at 6:00 a.m. and to the shock of everyone she had lost weight. I was devastated, that was the breaking point.

I called Alan after the weight check and cried. I told him that I need to come home, and that he had to switch me places. I couldn't do it anymore. I needed my bed, I was averaging about 2-3 hours of sleep every night on my little chair bed. I missed my kids, I needed to be with them, to hold them and talk with them. I had no idea how long we were going to be here, but I need to leave. It was hard, I felt so torn. How do I leave my baby, but I had left my 3 other babies. Alan tried to come, but of course it was snowing so traffic was terrible he called about 9:30, by then I was doing a little bit better, after drawing strength from one of my best friends and my mom, after having sat in traffic for an hour and not even close to getting to the hospital, I told him to turn around and go home. I had just talked with one of the resident doctor as well as my nurse and they both said that there was still a possibility that we could go home today. When the doctor came in he gave me 2 options. Option #1: We could go home with a Doctors appointment on Monday to check her weight and a possibility of being re-admitted to the hospital for more tests that could end up being a long drawn out process. Option#2: Stay for 2 more days, with her on a feeding tube to see if she would gain weight that way. I looked at him with tears in my eyes and told him I wanted to go home. He nodded. I got nervous and asked if that was the wrong choice and if it would be better for her to stay. He told me that he didn't think anything was seriously wrong with her and that there was no right or wrong answer. He was still puzzled at why she wasn't gaining weight. But he was going to release us. We were free!!

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