Recovery and Complications

S was released from the hospital on February 17th, 2010, on my mother's birthday. We visited my mother-in-law in the afternoon. She was surprised S had been released from hospital already, but I guess in our whirlwind week, we hadn't even thought to tell her she was having the surgery in the first place, so she'd had no idea until we showed her the scars. S was doing really well. She was pretty tired still, but it was so nice to be able to hold her without tubes and wires everywhere. We got a bit of rest at home and then we went out for dinner with family to celebrate my mom's birthday. S slept through half the meal, and then snuggled on my lap for the other half.

The first couple days, I was giving S Tylenol every 4-6 hours, because she was pretty uncomfortable. Once she started getting really fussy, I knew it was time for another dose. It wasn't too long, though, before I was able to space out her doses. She was on the mend.

February 26th was my oldest daughter's 7th birthday. It was a Friday, so she went to school. It was also the day to take S to see Dr. M, so he could check on her stitches and her overall recovery. He thought she looked a lot better, and said the stitches on her stomach and her head seemed to be healing well. I agreed that she looked better. She was able to do things that she hadn't been able to do for a month or longer. She didn't scream during diaper changes, and was actually starting to like lying on her back. We weren't doing tummy time, since she was still recovering, but she was back to enjoying her saucer, and was even bouncing around a little. She wasn't tensing up all the time. We were able to enjoy a nice family dinner at Olive Garden for D's birthday, and visit my mom for cake and presents.

While things were still going well, about a week later, we noticed some subtle changes. S's shunt site was starting to look...puffy, for lack of a better word. This could possibly mean that the valve was blocked, or that the setting on the shunt wasn't allowing enough fluid to drain, and needed to be adjusted. I spoke with Gail, Dr. M's nurse, on a couple of occasions, and was advised to keep them updated on any changes. On Thursday, March 4th, she told me that she would talk to Dr. M to discuss my concerns. I waited through Friday with no return call. On Saturday, S's shunt site seemed even more enlarged, I was getting more concerned, and my mother was starting to get frantic. On top that, I had noticed that her fontanel seemed to be slightly puffy, and it felt like her skull was spreading. I called the hospital and was advised to have her seen, because it was a specialized situation that they had no expertise in over the phone.

On Saturday, March 6th, we all took a trip to Children's emergency, with three kids in tow. The doctors ordered a head CT scan and x-rays. At 10pm, Wayne took the older girls to my aunt's house to spend the night. The CT scan was first. The procedure took about 10-15 minutes, with S crying because she was strapped to a metal bed with towels surrounding her head to keep her still. It was hard watching her go through that. We had some time to kill between the CT and the x-ray, but while waiting for her x-ray to be done, I noticed wetness on my shirt. I thought at first that maybe it was just sweat, but after taking a closer look at her head, I found that it was S's head that was leaking. Her stitches weren't fully healed, it seemed, and with all of the stress of her crying and screaming, and the added pressure, it had actually caused some cerebral spinal fluid to leak out of her shunt site. I mentioned it to the x-ray tech before I brought her in. They brought me a clean towel to keep on her head to minimize the risk of infection.

At 1:00am, a doctor from neurosurgery came down to check on S. He wanted to get a sample of CSF through a valve tap, but he couldn't get into it, so he took a sample straight from the bulge surrounding her shunt. He then adjusted the setting of her shunt, to allow fluid to flow through more quickly. Because of the now new risk of infection, S had to be admitted until results of her CSF tests came back clean.

Somewhere around 4:00am, we were moved out of emergency and into a room. S was assessed by the nurse, and we signed some paperwork pertaining to her treatment. I was told I was not allowed to nurse her, because if there was infection and surgery was needed to replace the shunt, she would need to have an empty stomach. At 5:30am, with S somewhat settled, we went home to get some sleep. Wayne had to work on Sunday, so he dropped me off at the hospital around 10:30 and went to work. When I arrived, the nurse told me that she had done okay while I was gone, but I later found out that she actually had an awful time coping with my absence. All of the nurses on staff had tried their hand at soothing her and had been unsuccessful. This information made me very upset, because I told the nurse when I left that if she couldn't be soothed, I wanted to be called immediately. I knew she was very attached, and I didn't want her getting too stressed out. I ended up making a complaint against the staff because of that.

The preliminary test results showed no infection in S's CSF, but they wanted to wait a full 48 hours for possible cultures to show up. I was finally allowed to nurse her Sunday afternoon, because it was obvious she wouldn't have surgery that day. She was allowed solids up until midnight, but would have to fast again, in case surgery was required the next day. After speaking with the charge nurse Sunday night, and leaving explicit instructions yet again that I be contacted at any sign of stress, we left around 1:00am.

I arrived at the hospital at 7:00am Monday morning. The nurse told me that S had done better than the night before, except that there had been a complication with her IV. It had come out of her vein, and the nurses couldn't get it back in, so they took her down to emergency to have someone there put it back in, and then they brought her back to her room. Again, demonstrating that they couldn't follow instructions that I be contacted.

Dr. M came by Monday morning to discuss S's situation. Even though the CSF cultures were still negative, he wanted us to stay in hospital a full 5 days (meaning until Friday), because that's how long it could take bacteria to show up. S was already being administered heavy doses of antibiotics to kill off any possible infection, but Dr. M wanted to stay on the cautious side. At this point, because of the cultures being negative, we were taken off food restriction. At least that was one less thing to stress about. I had decided then that I would not be leaving S's side for the duration of her stay. The hospital staff obviously couldn't follow written instruction, so the only way to ensure her comfort was to stay by her bed.

ID (Infectious Disease) came down to give me more detailed information on the antibiotics being given and what the cultures and testing meant. I was told the attending would come by to check on S, but he never did. I went home for an hour in the evening while Wayne stayed with her, to pack an overnight bag and spend a little time with my girls. I got a call in less than an hour that S was getting agitated already, so I quickly packed and headed back.

On Tuesday, March 9th, Dr. M came by again, even though he said he wasn't going to. He said everything was looking great, the cultures were still negative, and he thought it might be possible that S would be released on Wednesday or Thursday. He also mentioned adjusting the setting on the shunt and dialing it down even more, to reduce the swelling we were still seeing. The attending didn't make an appearance again. Two ladies came by from Physiotherapy and Occupational Therapy (PT/OT). They wanted to discuss doing an assessment to see if S needed any assistance physically. They talked to me about the kinds of things they wanted to do and see. They tried to do a few activities with her, but she became too agitated and would not cooperate, so we made arrangements for them to come back on Wednesday.

Wednesday came and still the CSF cultures were negative. The nurse told me that the resident had our chart, that he was doing rounds, and that he would be by sometime in the morning. And yet again, he still never showed up. Gail came by and we discussed the results of the cultures, how long we needed to stay, and re-tapping the shunt. We both agreed that re-tapping the shunt wasn't necessary, because everything was going so well. She confirmed with ID that getting another sample at this point was really not a concern, and then we talked about options for release. We made arrangements, which she repeated to the nurses, that as long as the CSF results were negative on Thursday, and S got her fifth day of antibiotics administered, that she should be released Thursday afternoon. She told me she was going to tell Dr. M about our arrangements, and of course if anything needed to be adjusted, they would let me know. PT/OT came by Wednesday afternoon, and even though S got upset, she was able to demonstrate some of the things they wanted her to. We agreed to have out-patient visits and made an appointment for the end of March. They also gave me papers with some exercises I could do with her at home before then. Things that they would want to assess at the end of the month to see if ongoing visits were necessary.

On Thursday, March 11, we started getting the runaround. Dr. M wasn't going to be coming by because he was on vacation. He actually wasn't supposed to be there on Monday, Tuesday or Wednesday, but he kept coming by just to check on her. I started hearing that they wanted to keep us until Friday. They really tried to fight me, but after arguing that she had been on antibiotics all week and that her cultures continuously came back negative, that there really was no reason to keep her any longer. I promised that if, for some reason, they got different results on Friday, I would bring her right back so we could continue treatment. And finally, Thursday afternoon, we were released and sent home.