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!

The Recovery

I couldn't take it anymore I had to go and see Faith. I buzzed in and said who I was and they let us in. I hadn't been in the Paeditric Intensive Care Unit (PICU) before and it was so different to the Neonatal Intensive Care Unit (NICU). There were older kids who looked very sick and tiny babies too. There were toy's hanging from the roof and big characters on the walls. It made it have a less hospital sterile feel. The door we came in by didn't lead us straight to the reception so we sort of fumbled around until we found it. Then before we had to say anything, we saw her. Oh my goodness, my heart leaped, was it true, this sad little frame, pale, head swollen, oxygen, drips, machines all around, NG tube (nasal gastric tube, it was terrible. Her head had to be kept so still and she was on a lot of pain relief.

Every now and then she would start to cry and I would tickle her forehead and she would be calm. I whispered sweet things to her. She still pulled up her legs and was sweating badly. The neurosurgeons were unable to shunt the syrinx (click for condition explained) as they thought that the dural scoring was enough for now. They were hoping this would be enough but we were not so sure. I wanted to just stay with her and not leave but I didn't like this environment either and I didn't want to be there. I longed for us all to be home and life to be peaceful and quiet. The nurse that was looking Faith was lovely she went through all the medications with us and we were correcting mistakes in her normal medications. It always pays to double check everything.

We had brought her pink sea horse in and this seem to calm her. It played soft music. The nurses later said that when we were not there and she was crying in pain they would play the sea horse music and she would go back off to sleep. So we just sat with her and kept her company. She seemed to be in a lot of pain and they had her hooked up to a PCA (Patient Controlled Analgesia) to help the pain. The plan was that Faith would be sent to the ward the next day. We were not able to stay with her overnight so we had arranged other accommodation. It was so strange leaving her there, we went to our room, very close to the hospital. I felt like I was letting her down. I wanted to look after her but I couldn't. We had dinner and had an early night. A very restless sleep.

The visiting hours at the PICU were limited in the morning, so we went in as early as we could. We had missed the doctor's rounds but we were told that she had done ok overnight. She was off the oxygen which was a good thing but still in pain. They were going to send her to the ward that morning but it didn't get organised until afternoon. We were taken back to the same spot at the babies ward that we had had the a few days previous. Even though it wasn't far, only a few floors, Faith seemed to be in a lot of pain from the bumps. We just had to tell the nurse when we believed she was in pain and they would press the button. I really wanted to press it as the nurses could take so long sometimes. Well, so far Faith still seemed to be in pain and sweated the same amount. The neurosurgeons said it could take a few days until we would see any change but I wanted to see one now. Now we could stay with her. We had to turn her head every few hours as she wouldn't as it was too painful.

One morning Faith's fontanelles was really really full and it didn't seem to be going down and since she had just had surgery we were getting quite concerned. So, when the neurosurgeons came to check on Faith's progress we mentioned and showed Faith's fontanelles and they said it would be better to check that everything is ok and booked Faith in for a CT scan later that day. It was quite a painful experience for Faith as the bumpy ride to radiology and the movement upset her but luckily she still had the PCA going she could have some pain relief. I stayed with her for the scan as a stranger has no success in settling her. Afterwards for Faith being so brave she was given a black, blue and red knitted teddy bear. Very sweet. Thankfully the CT scan report was showing that the shunt was working fine so it was probably just related to the swelling in head from the surgery.  

Just over 24 hours later and we were quickly transferred to an isolated room as there had been a out break of the norovirus in the PICU. So every child/baby that had been in contact with the PICU in the last 2 days had to be isolated as doctors and nurses were really sick including quite a few patients.  Faith at this stage didn't have any symptoms which was really good. The days felt so long. We had no contact with hardly anyone and every time someone came into the room they were dressed in protective clothing and this frightened Faith so much. She now still hates the sound of rustling plastic. Faith was cleared of the norovirus but they left us in the private room until it was needed so that was good I guess.

About 4 days passed and we still so no improvement in Faith's original condition. The pain team had been called in and they said that Faith was experiencing neuropathic pain and what they called complex regional pain syndrome and that was what was causing her pain, also to pull up her legs, touch sensitivity, sweating and her foot twitches. It is related to the arnold chiari ii malformation, they just wanted to find someway of treating it. The pain team said that starting some medication could help the situation while we wait for the effects of the surgeries to come apparent. We were extremely skeptical about this medication, gabapentin as it is not often used in babies so young and they don't know what side effects really are. We decided on advice from the neurosurgeons we should give it go as it wasn't a permanent thing. I felt terrible, I really wasn't sure about this medication. We still believed this to be caused by the syrinx, the vomiting was still happening and we couldn't see any improvement from the decompression surgery. We discussed this with the neurosurgeons and they agreed that they needed to take Faith back to surgery and insert a SP (syringopleural) shunt into the syrinx. So, the plan was to take Faith back to surgery 7 days after the decompression surgery. Here we go again!

Decompression Surgery

The morning of the surgery, Faith woke unwell as usual. My husband came in early so we could entertain Faith while we waited for her to be taken to the operating room. I could tell she was hungry and wanted her bottle. She was now on formula as I stopped expressing milk in December 2010. I felt trepidation, fear, are we doing the right thing? I wanted to cry. I dressed Faith in a new little outfit I bought. It was so cute, it was red and blue with stripes. At last we were called to go down to the surgery admission room, we entered, it was all white. There were four spots to sit and conduct observations before the patient was taken into the operating room. Nerves were welling even more in my tummy. I held Faith tight. I didn't want to let her go. We sat on the seat closest to the door near the theatres. The anesthetist said that we couldn't come in and stay with Faith until she went to sleep and I had really wanted to. Instead, a nurse came, picked Faith up and she was smiling and through the double doors they went. My heart sunk, had we done the right thing, this was wrong, I don't want her taken away from me. I cried. I hoped I had brought enough tissues. It was thought the surgery would take at least a couple of hours so we didn't need to go straight back to the surgery waiting room. We went to get some breakfast.

As we were coming out of the lift, the consultant neurosurgeon came in, he was holding a little blackish box with little silver dots on it. We assumed this must be the special instrument that was borrowed from the Melbourne Children's Hospital. I am pretty sure he knew it was us but he was on his way to theatre to operate on our little girl. How are we meant to function during this time! A bright spark that day was we got an unexpected but blessed visitor. As the hospital is a catholic hospital in each room there is always a cross hanging on the wall. The room we were in didn't have one. It is always a good reminder of what Christ has done for us by having it hanging there. It forces it into my mind. My husband mentioned it to a friendly lady at the hospital reception and we didn't think much of it after that. But that afternoon when our heart ached, our minds wandered and thought of what might happen. A man walked into the parent's lounge and asked for us, he came over and said that he worked in pastoral care and the lady at reception mentioned us. He was a little light in our darkness, he handed us a palm cross so we could always remember by holding it in our hand. How beautiful!  I held it tight and prayed and prayed.

A few hours into our day of anxiously waiting my mobile rang and it was Dr JC, the neurosurgeon fellow, my heart skipped a beat, butterflies rose, I started to sweat, and she said that they haven't started the operation yet as they have been unable to get a drip into Faith (the one from the previous night had tissued). The anesthetist was working very hard to get a secure line in so they could begin. We were thinking that they might be nearly done and they hadn't even begun. Tears welled in my eyes, back to waiting. After a while of aimlessly wandering the through the peaceful grounds of the hospital we returned to the parent's waiting room. There were families seating around all looking tense and stressed. Every now and then the room telephone would ring and someone would anxiously answer it and some anxious parent hastily disappeared out of the room. One by one, families came and left. We just waited! It was like time was standing still for us and everyone was moving on and we were left behind. I flicked through magazines, had a crack at the Nintendo, tried to read a book but nothing could help. I just wanted Faith. At last, my mobile rang and we were asked to come back to the surgery admission rooms. Remember to breathe! We hurried back to the surgery admission rooms and went in and the nurse showed us to a private room where we were to wait. What was about to happen I did not know. But I was frighten and started shaking a little. I felt like I had tuned out and was in a strange cloudy daze.

We sat down in a small room and a few minutes later, but it felt a lot longer, the consultant neurosurgeon came in. He was dressed in green surgical wear. He started talking and I suddenly couldn't look into his face, I was afraid of what I might see. Instead, I stared at the floor and my eyes traveled to his shoes. His shoes I can remember, suede black sort of colour and there was blood on them, blood, my Faith's blood. He was saying they got as far as the laminectomy (part of one or more vertebrae is removed) and Faith started bleeding, she had lost 100-150mls of blood. I hadn't thought about this before. He said that he'd rather come in and tell us that they aborted the surgery than say they continued and she didn't make it. This was serious. I felt light headed and dizzy. Faith had to have a blood transfusion and would be in recovery in about an hour and we could go and see her soon. I can't remember much else he said, as I was staring to much at his shoes. His shoes with Faith's blood on it. This was to much. Now, I urgently wanted to see Faith. My husband later told me that the neurosurgeon used another technique to see if that would help, he scored the dura. The dura is the thick outer covering of the brain and spinal cord. Dural scoring is a surgical technique where a series of cuts are made into the dura, but the dura is not completely opened. Now we had to wait for Faith to go to recovery.

Paediatric Intensive Care Unit (PICU) was a secured area. We buzzed in and got into the waiting area. It was a rather long corridor with seats all along it, a small play area and at the end a hand basin to wash your hands before entering and hand sanitizer too. I remember there was no hand towels to dry our hands. We sat down as it was all to much, I started to cry and my darling husband comforted me. There were double doors and single doors and then as I looked up I saw this little pale, very still baby go past and it was Faith. There were nurses and doctors wheeling her into the other secured area. Too much, this is all too much, her head was swollen and secured so she didn't wiggle. I could hear her panic cry. She needed me. Not people she didn't know. The kindly Dr JC, neurosurgeon fellow came in and said to me what is wrong? She said, Faith is ok and I said it is all to much and I just want to see for myself that Faith is ok. The lovely doctor reassured us and sat with us a minute. It meant so much she'd taken the time to sit with us. They needed another half an hour to settle Faith into PICU so we had to wait. So much for the half an hour it turned into at least two. We knew Faith was inside those doors and we were not allowed in there yet.We just had to wait again!