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!