Syrinx Shunted

We were still in our isolation room and late one night the room was needed so we moved out which I didn't mind, I think it will be good to be around other people. Except for it was done right before the nurses handover, an agency nurse came in and said we are going now. Faith was attached to a pressure reduction mattress and she turned it off and left us. The mattress started to deflate and no sign of the nurse. Poor little Faith was getting distressed as she had been asleep and it had woken her up. I called another nurse and we moved and I said that I wasn't happy how this happened. It turned out there was no rush to move anyway. I got moved into a very noisy room in that the mother of one of the children talked on her mobile really loud and late at night. A little bit in considerate. The next day was the day before Faith's syrinx was to be shunted (SP shunt) . Both hubby and I were nervous. To put Faith through this again is very hard.

The day of surgery came again and this time the anesthetist was happy for me to come into the operating room and be there while Faith was put off to sleep. This made me feel so much better. I carried her in and the room was so big and so many people. I saw the consultant neurosurgeon talking to less experienced neurosurgeon about the procedure. Nurses were busily getting everything ready. I remember the room to be extremely clean and a light blue colour. I put Faith on the bed and they gave her some gas to help her off to sleep. She fought it and it was hard. She was screaming and looking at me with pleading eyes. I talked to her softly and tickled her head and held her hand. When she was peaceful I was shown out. Even though it was hard I felt better seeing where she was and being with her when went to sleep. They thought the surgery would only take a few hours. Faith was to be sent back to the Paediatric Intensive Care Unit afterwards.

This day was much easier and the neurosurgeon fellow came out and spoke to us and said that it had gone much better and when the syringopleural shunt was put in there was a gush of Cerebral spinal fluid going through. She also said that the nerves had been squashed and it would take quite a while for them to find there shape again. Faith wasn't in half as much discomfort as she was last time. Back in PICU, Faith had beads of sweat down half her body (which isn't unusual)and it started at the level of where the shunt was put in so that was a little different. We went through the medications again as we always do and they had them wrong so luckily we got in before any of them were due. It always pays to double check. She was to stay the night in PICU and head back to the ward in the morning. The PICU was full there was no spare beds so they wanted to get Faith back to the ward as soon as possible. But by the morning PICU was empty, all the children had been sent to wards.

The neurosurgeons said that it could take a really long time for us to see the benefits of both the shunted syrinx and the dural scoring. One aspect we did see some improvement in was that she ate pureed solids better for now and was a little happier on occasions. After a few days we were allowed to take Faith out of the hospital and go for a walk down by the river. It was wonderful to take Faith out and about. She loved getting out and people watching. We plodded through the days and the day came when we could go home. The neurosurgeon fellow visited and brought Faith a present. It was a beautiful cloth book, a small coloured ball and a teething toy. How lovely, she said she shouldn't but she did anyway. What a great present! So we were on our way home and we hoped to see improvement soon. Homeward bound again!