Because it took so long for the social worker to sign the consent form for Kayda’s surgery, it was winter when the surgery could be scheduled. I decided to keep Kayda out of school for 2 weeks before the surgery to cut down on the risk of her being sick. Well, she finished school on the Friday 2 weeks before surgery. Sunday night she came down with another bad cold. Crazy kid!!!! Once again, surgery was in doubt. It was decided that she should see the surgeon before being admitted to see if he thought it was safe for her to have surgery. Good plan! We got to the hospital at the designated time only to find that the surgeon had forgotten. So, she was admitted without a check up. She was mostly recovered from her cold. She was just a little gurgly but her oxygen level was fine. The anesthetist came to see her and right away he was hesitant to do the surgery. He said that he wasn’t so much worried about how she would do during surgery but after. When a child isn’t totally well and undergoes prolonged anesthetic such as Kayda was going to have, they are much more at risk for complications afterwards. I didn’t want to put her at risk but I felt she was ok. So, the pediatrician on call came and examined her. He wasn’t her regular pediatrician but had cared for her a number of times when she’d been ill. I trusted his judgment when he said he thought it was safe to do surgery. The anesthetist agreed to go ahead.
I was still scared. I did manage to go out for the first couple of hours of her surgery. We always went to the same mall. I found a beautiful dress and some ear rings that I thought would be nice for Kayda to wear on her way home from the hospital, but I couldn’t bring myself to buy them. I was too afraid that she wouldn’t survive the surgery. We didn’t stay out long but returned to the waiting room to do just that. Late in the afternoon the surgeon came out to say that he was done, that she had done fine and they were just putting on the casts and would be going to the recovery room soon. We went in and saw her as soon as possible and once again her face was swollen and white and the casts looked so big. It was decided to keep her in the recovery room over night just to keep an eye on her breathing. Dave left in the early evening and as Kayda was still asleep up in recovery and as I was exhausted I went to sleep quite early. At 11, the phone rang. It was the nurse in recovery saying that Kayda was awake and restless. They said that she seemed to respond when they said “do you want mom to come see you?”, so could I please come up. I hurried up and then spent the next several hours sitting with her and talking quietly to her and to the nurses. She was quite restless and I said that she was in pain, so she was given pain medicine and immediately settled down.
It was always strange talking to nurses who didn’t know about her condition. Her diagnosis on her chart said Spastic quadriplegia. Well, the nurse sitting with Kayda when I went in couldn’t understand how she had quadriplegia as she’d seen Kayda move her feet in the casts. I had to explain about her condition.
Finally around 2 am Kayda was asleep and resting peacefully so I went back to Pediatrics to sleep. But, when I got there, all our stuff was in the hall. Our room had been given to another child. I ended up sleeping on the floor in the family lounge. When I got up around 6:30, I went to the nurses station to see if they knew what time Kayda would be coming down to the floor. They said she wouldn’t be coming down as planned as they were having trouble with her sodium level being really high. I sort of laughed, and said there was nothing to worry about as her sodium level always went up when she was ill. So, I went back to the floor where the recovery room was. I went to the door and using the intercom asked if I could come in to see Kayda. They replied that it was shift change and could I come back in half an hour. So, I went back to the waiting area. While sitting there I heard our pediatrician being paged. “It’s for someone else” I told myself. Every 20 minutes for 2 hours I’d go up to the door and ask to come in. Each time I was told to wait a bit longer as they were busy with her. I remember that there was a lady in the waiting area whose husband was undergoing surgery for a possible cancerous growth. We talked a bit but I started getting panicky. I thought of the worst possible things. Finally, I couldn’t take any more. I went back to the door and pleaded for someone to tell me what was going on. The pediatrician came out. Yes, the page for him had been about Kayda. He said “well it looks like she had diabetes Insipidus”. I, again sort of laughed to myself because he had always said there was no way she could possibly have it. (this diagnosis had been suggested before she came to stay with me due to her frequent high sodium levels). I thought it was no big deal. We’d just get her sodium level down, right?
The pediatrician explained that along with a very high sodium level, she had uncontrolled urine output. That was another factor in diabetes Insipidus. He explained that despite medication they were having great problems getting her condition stabilized. He said she was doing a bit better but would have to have one to one nursing care. He let me see her and she didn’t look too bad to me. They had me wait a little longer in the waiting room. In the meantime, the lady waiting there was told that the tumor in her husband was benign and he would be fine. Finally the pediatrician said that Kayda was stable and that a special duty nurse would be in at noon and she would then be transferred back to pediatrics. Fortunately the child that had been in her room had been discharged so she had a room to go back to. Once I heard that I relaxed and went out. I went and bought her the dress and ear rings I’d seen the day before.
And thus began almost 3 weeks of ups and downs and constant watching of the level in her catheter bag. The doctors really didn’t know what to do as diabetes Insipidus is rare. They would give her the medication for DI called DDAVP and that would slow her urine output and her sodium level would go down too low. But what we realized is that they continued to keep her iv going so she was getting too much fluid. That took several days and several more crisis before that was figured out. So, when the sodium level went low, they’d restrict fluids so her urine output would decrease, but then her sodium level would get high again. Believe me, I learned far more than I ever wanted to know about sodium and urine output.
Kayda’s hip surgery was on February 3. On the night of February 13 I came back to her room after having been out for dinner with Dave. There was all kinds of activity in her room. The nurse told me that her sodium level was really high again and that they needed to bring it down. They planned to flood her with fluids; 4 litres in 2 hours. This was started around 10 pm. Around 11, I decided to try and get a bit of sleep. I had a cot next to her bed. Before I could fall asleep, Kayda started fussing. I went over to her and gave her a hug as best I could with all the ivs, tubes and casts. Every time I left her side she’d start to fuss. At midnight when the nurse did her vitals check Kayda was wheezing a little bit. We decided to give an extra dose of ventolin. The wheezing continued to increase. The nurse brought in an oxymeter and heart monitor. They showed that her oxygen level was decreasing rapidly. We had to keep turning it up. Her breathing got noisier and noisier. Kayda was awake and scared though. Every time I left her side or moved my hand she’d start to fuss so I stayed right there talking to her. The nurse kept bringing in more and more pieces of equipment to monitor her condition. We had to go to the high concentration oxygen tubing and had to keep turning it up. The resident on that night came in and out of the room. Kayda had blood work done every 2 hours all night. The resident just sat with us and watched Kayda struggle and waited for blood test results.
Throughout the preceding days the doctors on the floor (residents and several pediatricians) disagreed with Kayda’s pediatrician on how she should be treated. They wanted to just give her the DDAVP to slow her urine output. But her ped, didn’t think she needed it and felt that she was so sensitive to the DDAVP that she wouldn’t be able to handle getting any fluid-ie; wouldn’t be able to get enough formula into her. So, that night as we waited and watched, the resident was debating whether or not to give the DDAVP. She knew that Kayda’s ped didn’t want it given.
By 2 am her sodium level was only slightly lower than when we started treating her and she was in big trouble. I was going over in my head how to do CPR. The crash cart was brought to just outside her room. The nursing supervisor for the whole hospital came in and out of the room. The resident said to stop the Ivs and to give her lasix. Right away she started to put out more urine and over a very short period of time she started to improve. We were able to take gradually take away pieces of equipment. Throughout all of this Kayda was awake and had to have my arms around her hugging her closely. She gradually relaxed and by about 4 am finally fell asleep. It was Valentine’s Day.
I phoned Dave at about 6 to tell him what had happened over night and suggested that he might want to not go to work that day. He agreed. He arrived a couple of hours later with a big box of long stemmed roses for the 2 of us. At some point in the previous days I had broken my glasses. I think I had taped them together but it just wasn’t working well. So, when Dave arrived, as Kayda was still asleep I went out to the mall to where there was a 1 hour glasses place. The sales person tried to talk to me about what a beautiful day it was or some such nonsense. I just looked at her and said “my daughter almost died this morning and is still very sick in hospital” She shut up and apologized and agreed to have my glasses ready in an hour.
While I wandered around in a fog waiting for my glasses, the cell phone rang. It was Dave. Kayda was awake. In the background I could hear her giving this high pitched whining type of cry. It was a horrible sound and she only made it when she was feeling at her worst. And the only way to get it to stop was for me to be holding her. I was 20 minutes away from the hospital and had to wait for my glasses. That whole time I just ached knowing that I had a crying little girl who needed her mommy waiting for me.
When I got back to the hospital Kayda was giving that horrible cry and was moving her arms and hands sort of compulsively. It was as though she had to move them, but wasn’t happy, she was driven. She settled more as long as I stayed right with her with my arms around her in a half hug.
The pediatrician came in some point in that foggy day and showed his wonderful bedside manner. He said “well, we just have to accept that Kayda has a higher than normal sodium level”. I asked if that would be harmful for her? Well, he said, “the most common side effect of a high sodium level is brain swelling. As she has no brain, I guess it doesn’t matter”. It did turn out that no DDAVP was the correct treatment for Kayda.
That poor girl had such a tough time. She had a latex catheter in her for almost 3 weeks. At one point I could see that her urine output was getting cloudy and she seemed to be having bladder cramps. As the last time she’d had a catheter in, she’d gotten a bladder infection (her first hip surgery) I knew that that’s what she had now. I told the doctors and they took a urine sample. However, they had to wait 3 days for the culture to grow. I knew she was in agony but they told me she was “asymptomatic” as she had no fever. I muttered not so nice things about the people who were making her wait through her pain.
During those long weeks, she decided that I had to be with her ALL the time. But, I was tired and a couple of days after Valentine’s day I had one of her respite people come and stay with her so I could go home for 24 hours. How much I appreciated that break! When I got back to the hospital the next day it was time for her nebulizer treatment. As usual I offered to do it. She was all smiles and as happy as could be. The respiratory technician said “gee, she wasn’t like that when I was in before. She almost growled at me”. It turned out that the whole time I was gone, little miss Kayda was in a snit about me being gone. She refused to smile. She fussed and was generally miserable. It was nice to be missed. I also felt a sense of triumph in that this little girl was so able to express her wishes and opinions.
Finally, almost 3 weeks after she was admitted, Kayda came home. And, despite the fact that the pediatrician had muttered throughout her whole hospital stay that it would be impossible to manage her sodium level and urine output at home, it was totally under control by the time we left the hospital. She still put out a lot more fluid than she took in, but with weighing diapers I was able to keep on top of it and if she put out too much urine I’d just give her more fluids.
I am now firmly convinced that the reason she had all the problems she did after surgery was that she had been ill just before and she wasn’t strong enough to withstand the trauma of the surgery. The fact that it was winter didn’t help. I now tell families to make sure that their child is 100% healthy before any surgery. The anesthetist had been right. We should not have gone ahead with the surgery. It almost cost her life.