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!

Shunt Malfunction

Over the next few days, when we telephoned overnight to check on Faith, we were told she was restless and confused with night and day. There were mornings we went in and the doctor's were not happy with her progress and days that were ok. Some days I stood at the doors of her room and was scared to go in because I didn't know what I would find. Sometimes it would be that Faith's condition was stable and other days I would just burst into tears as something had gone wrong. One of the days that stood out was the first Saturday, we were out at the shops buying some food. We got a call from a well spoken neurosurgeon, who explained that over the last few hours Faith's head size had increased a substantial amount. They were going to have to take her back to surgery as the neurosurgeon said it was a shunt malfunction. It had only just been put in, surely not this soon. I found this hard to take in, so I gave the phone over to my husband for it to be explained to him. This was not good. Faith's shunt valve was at the wrong pressure so they had to make an adjustment to it. Thankfully, the surgery was a success and we could come and be with her again.

The next day as we walked down the corridor of the hospital to see Faith I heard this cry and I said to hubby, that is Faith and I started walking faster and faster. When we arrived it was Faith crying and they had taken her breathing tube out so this had to be a good thing. I just had this instinct that it was my little one crying. It was an amazing feeling. The same day unfortunately, Faith had a seizure that the doctors were extremely worried about and had to relieve pressure in Faith's head by removing fluid. What an intense day but it wasn't over yet. We were quite shocked as when we turned up to see Faith they were changing her wound dressing where the flap of skin was moved. The wound had broken down extensively, it was a triangle shape and it had turned into a cavern in her back. We asked what was going on and we wanted to speak to the doctor about it, as we were not told of the seriousness of the situation. If the wound deteriorated too much more it could progress to the spina bifida site and leak cerebral spinal fluid (CSF) and it would mean the shunt would need to be replaced. This was such a shock. I have never seen anything like it.

We spoke to the plastic surgeon, who we were not impressed with, and they were going to keep a close eye on it. This happens apparently. A couple of times a year the doctors see this in the hospital, but it didn't make us feel any better. We would have to keep a close watch on the situation. I think it was at this point we had to start taking more note of what was being done, medications given and things like that. It is so much take in, particularly only 7 days after the birth of our first baby.

Over the next several weeks, there were days the doctors didn't know what was going to happen. The same routine every day. Back to our accommodation and back to the hospital. This was our world and we didn't know much that was going on outside of it. We got to know nurses, doctors, cleaners and many of the staff very well. I even had a health scare in that I had chronic pain in my back and was admitted and had to have an MRI to check there was no damage done from the spinal tap, but thankfully it was fine. I think it was all the walking and activity, not enough rest but there was nothing I could do about that.

Family kindly brought us meals and encouraged us to keep praying and keep going as we will get there. I think what I found strange as my life at home continued on without me. Time was passing but I felt like I was just treading water. There were so many stresses at this time. Sadly, there were some family that didn't understand why they couldn't come and visit. They put a lot of pressure and guilt on us. I understand that it must have been hard for those that didn't understand the seriousness of our situation but we were so exhausted and concerned about faith. It was hard to find words to explain why they must just wait. There was going to be plenty of time in the future to see Faith. But I think some people forgot to look at the situation from our point of view and how we felt and what we were going through. We were doing what was best for Faith and what she needed and if that offended others then there was nothing we could do. We tried so hard to please everybody but it isn't possible. Some days were bleak and I would sit beside Faith and tell her about our life at home, about our garden, our pets and friends. We would talk about her life soon to be at home and the beautiful things we could all do together as a family.

I celebrated my 30th birthday at the hospital. I had hoped that we would have been home by then. I also hoped that I could just ignore my birthday as I didn't feel like celebrating. By my birthday coming it made it very real how much time had passed since I first arrived pregnant. But to my surprise I had my mum, dad, aunt, uncle and cousin arrive and spoil me with gifts. My friends back home had sent cards, letters and gifts to remind me of what I had back home. I was very grateful, I even received a bunch of flowers. It was lovely to celebrate this day with family I hadn't seen in a while. But it was still hard as I was sad and I wanted to be with Faith. The night we visited on my birthday we had a mean nurse who snatched Faith away from us the moment she started to cry. We were not even given a chance to settle her. It seemed we had no control over anything. As time passed we learnt to say no and not be put in that position. We did spend a lot of each day sitting by her side but it wasn't the same as having her all to ourselves away from the nurses. We had some amazing nurses who gave us a lot of control of her care and we loved the days we had them as it made it so much easier and we could enjoy her more.

The wound on Faith's back looked terrible and they decided to put a VAC dressing on it to promote healing. A VAC (vacuum assisted closure) dressing is a device that consists of a dressing which is fitted with a tube and attached to the wound VAC (a machine). Negative pressure wound therapy is most commonly used with chronic wounds which are not responding to other forms of treatment, and sometimes with surgical wounds which have reopened. It was a delicate wound as if the VAC dressing pulled too much fluid out it could draw the cerebral spinal fluid (CSF) out and then we would have to start again with the shunt having to be replaced. I learned as much as I could about this VAC dressing machine as it wasn't commonly used in the NICU and most nurses were not trained in the use of it. Alot of nurses were not trained in the care and maintenance of a wound this serious. When the wound nurse came every few days I would question her and get her to show me all about this machine and also care of the wound. At first, the wound got slightly worse and we were extremely worried and they were talking of taking Faith back to surgery. A plastic surgeon came every day but extremely early so I struggled to catch them, but this particular day I was determined so I got up early and made my way to see Faith. I got there just before this medium height, snobbish plastic surgeon arrived. When he got there and he was examining the wound; I was asking him how wounds like this heal and he said with a serious face its magic. I said that's not true how do they heal? He then made a joke with the nurse saying it just heals like magic and smart remark to the other doctor. I was completely disgusted by his response before I could say anything he was gone. I still didn't have my answer. I later asked the wound nurse and wounds heal from the bottom of the wound upwards. This was the day I realised no more, I don't deserved to be treated like this and I spoke to the wound nurse about this plastic surgeon. Within a few days the NICU was buzzing about a doctor who told a parent that wounds heal by magic, he appeared shortly afterwards but with the consultant and made an awkward apology. I would like to hope he learned from his mistake but I don't think he did. From then on he always treated me with much more respect and answered all my questions.

One night my husband said that he had no more leave and he had to go home. I knew it was coming but still hoped it wouldn't. I had hoped we would go home before this day arrived. We were a team and did this together. Even though Faith seemed to be progressing ok, it was a few steps forward and a few back. So, the day came and my love drove off into the distance and I was left at the window alone and wondering how I was going to make it through each day and manage it by myself. I was soon to find out.

Our first days together

Day 2 - The social worker was right, I did crash and hard. If this had been the way I had imagined it, friends and family would be visiting and admiring the baby. Instead, neurosurgeons came to say that the surgery would be done in the morning and they would come and speak to us as soon as possible afterwards. So as fast as I could manage we headed to NICU and sat with Faith. We couldn't hold her as she still had a breathing tube but we could hold her hand and talk to her. The time had come for Faith to be taken to the children's hospital for surgery, I shed some tears as she went. It was all feeling like a dream, surely this isn't happening. I headed back to my room where I was told that the next morning I was to be discharged. This was to much, I could barely walk and it wasn't like I was going home. I would have to walk quite a distance back and forward to the hospital to see Faith. The social worker intervened and I was able to stay another night. I think what I found hard was I under the impression I would stay nearly a week which would mean I would be nearer to Faith.  Also to be able to recover more quickly but that wasn't the plan. I was sore, tired and life felt so strange. I was expressing milk with a picture of my baby and 24hours later still no cuddle.

There were some nice surprises my mum and dad brought me delightful flowers and a it's a girl balloon and my husband's work sent beautiful flowers and a cuddly pink teddy bear. It brightened the room and made it a little more cheery.I received encouraging and congratulatory texts from friends and family.

That night the neurosurgeon said that the surgery went well and they sealed the spina bifida and the plastic surgeons shifted a flap of skin to cover the hole. Apparently this was easier than a skin graft. I trusted their judgement as I didn't know about these things at this point. We were then able to go and visit Faith and sit with her a while. As she was so sick and attached to tubes, machines, and oxygen we were not able to do any care of her just sit there and watch another care for our baby.

Day 3 - This day brought unexpected challenges, Faith's head circumference was getting bigger and this meant that the neurosurgeon's had to take her back to surgery to put in a shunt. She had only been to surgery the day before and back again she went. I remember signing the consent forms and feeling dreadful. The surgery went well and the doctor's were happy. I remembered he said we will do everything possible to have your baby back with you soon. We understand this is hard. During the night, I had some pain so I had some pain killers so I was really drowsy and I awoke with a start and the nurse was wheeling in a baby! She was saying I am sorry I had no luck trying to settle him. And I said, Faith? But then realising the nurse said he, I said you have the wrong room and she apologised. For a second I thought it was Faith (knowing deep down it couldn't be, but still hoping). Then I went back to sleep with teary eyes and a heavy heart.

I was discharged and wandered down to see Faith and the nurse said, would you like a cuddle and I said yes yes please. What excitement! But my other half wasn't there and I desperately wanted him to be. I couldn't wait and the nurse reclined me in the chair and placed Faith on her tummy (as she wasn't allowed on her back) I had to be so careful of her back and her head. Wow, it was wonderful. I could feel her heart beat and she just lay there and went to sleep.  The nurse took photos and I was so proud. That night when hubby came in he also got to have snuggle with faith and it was a wonderful sight. Surely, we are getting closer to going home.