Sunday, June 23, 2013

Chapter 39: Another Series of Challenges

Chapter 39: Another Series of Challenges

In early December Dave & I decided to try again with our marriage, so things were looking much brighter for us. On December 17, my plan was to decorate the Christmas tree. Well, it appeared like Kayda had a different plan for the day. Around mid morning she started throwing up.  And, throwing up and throwing up…. By mid afternoon she was vomiting every few minutes and it contained red blood.  I phoned 911 and although they put it in as a GI bleed which is top priority, it still took 20 minutes for them to arrive. They agreed to transport her to the hospital. I decided to put her chair and other supplies in the van and drive there on my own so we could go home right away if they didn’t keep her. When I arrived at the hospital, they had her in the trauma room and came running saying she was having seizures. It actually wasn’t a seizure she was having, just her large startle episode. I thing the vomiting scared her and every time she threw up she’d tense up and startle. After checking thoroughly, it was decided that the blood was coming from a cut in her mouth not in her stomach. They moved us over to the regular ER area and there we sat for the afternoon. Kayda continued to vomit and startle frequently. Finally around 6 the pediatrician came in. I was so relieved to see that it was Dr Archer, rather than the other pediatrician who was the one who had said he’d walk slow to treat Kayda. Dr Archer agreed with my opinion that the startles weren’t seizures. But as she was still vomiting and was getting dehydrated it was decided to admit her overnight to rehydrate her. As I expected her to just be in hospital overnight, I agreed that she could stay at our local hospital and we’d give Dr Archer a try. Overnight?????? I don’t think so……..

By the time Kayda was taken upstairs to the Pediatric ward it was early evening. For some reason I hadn’t brought along her medications and other stuff she needed so I went home. Later I learned from the nurse that she had asked Dr Archer what they should do should Kayda stop breathing while I was gone. Dr Archer said “what you’d do for any other child”.  I think we’ve found a new Doctor

By the time I got back to the hospital, Kayda was on oxygen and having trouble breathing. She had aspirated at some point in the day and had the beginnings of aspiration pneumonia. I could see her hospital time lengthening before my eyes. Dr Archer said his goal would be to have her home by Christmas. One week before Christmas this looked like a reachable goal.

Over the next few days, Kayda continued to vomit, and was very clearly sick with pneumonia. She needed suctioning constantly.

more to come

Chapter 38: New Seizures?

Chapter 38: New Seizures?
One day in early September I got a call from the school telling me that Kayda had had a seizure and that I needed to get there right away. I went, and she was fine by that time but I decided to take her to the Dr anyways. Over the next few weeks, there were several incidences where Kayda would startle and go in to this really severe reaction. Her whole body would tense up, her arms would fly out and over her head, her breathing would get really fast and noisy. It appears that this is what the school had called a seizure. It took only a tiny noise for her to have this reaction. Usually the only thing that calmed her down was for me to hold her and rock her for a few minutes. I remember one morning when I was called shortly after she got to school. She had startled while on the bus and after more than half an hour at school was still not settled. I went in and picked her up and after a minute she lifted her head off of my shoulder and made a noise as if to say “see my Mom can fix it”. She was fine the rest of the day. Despite numerous Doctors’ visits and reassurances the school staff were convinced Kayda was having seizures when she had these episodes. As they were instigated by a noise they were clearly not seizures. Things grew tense through that Fall with the school as I kept maintaining that she wasn’t having seizures and they (her aide mainly) remained convinced that she was. Even other support staff came in and said that they were not seizures.

Then, one day when we were at the Doctors’ office regarding these startling episodes, she all of a sudden stared off into space for about 2 minutes. The Dr and I just looked at her and then wondered if we’d seen what we thought we’d seen. She then came out of it but a few minutes later did the same thing again. These episodes were clearly seizures. I started keeping track of these staring spells and after several weeks they were getting more and more frequent. In mid November Kayda came down with a cold and was hospitalized for a few days. While there I spoke with the pediatrician and he agreed that she was having seizures. He put her on Clobazam. He gave me no schedule on how to increase it but just told me to start giving it to her. At the time she was all congested and clearly sick.

That weekend I had planned her very first little girl’s birthday party. I’d invited a number of her friends from school, in addition to Amanda & Cathy. I arranged for a lady in town who had a Fairy shop to come and have a “Fairy” party at our home on the Sunday. Sunday morning Kayda wasn’t well at all, She was so congested and slept constantly. As the day went on I realized that the Clobazam was over sedating her to the point that she couldn’t cough and clear her own airway. I figured that she should likely go to the hospital. However, I couldn’t cancel the party.

All the children had a wonderful time. They were so concerned about Kayda and how sick she sounded. Kayda slept through the entire party. I only have one picture of the party as it was a complete disaster as far as Kayda went. She got some lovely gifts. I was touched over how caring all the children were. They were there for Kayda, not just to have a party.

After the children left, I checked Kayda’s oxygen level and it was ok. I decided to keep her home and just keep an eye on her and to stop giving her the Clobazam. I looked it up on the internet and learned that it’s in the Valium family. How dumb could I get, with a drug name that ended with “zam”. She’d been on it before during the first year she lived with me but it had been started slowly, and she hadn’t been sick at the time.

During this time, even when she didn’t have a cold she always was gurgly. I spoke with her pediatrician and told him that she didn’t seen sick but was just having trouble with secretions again. He oked an increase in the Robinul and said it was ok to send her to school.

In the middle of December I received a copy of a letter that the school nurse had sent our family Doctor In it she told the GP that I was sending Kayda to school when she was increasingly congested and having seizures (the startle episodes-no one was worried about the staring spell ones at that time). The nurse wanted to know if the GP really felt that Kayda was fit to attend school. They were also worried because Kayda usually had a very red face. They were convinced that she had a fever. She actually had Rosacea, which is a form of acne and causes a very red face. I just about went ballistic!!!! That ruined any respect I had for the nurse.

Chapter 37: New Friends

Chapter 37: New Friends
I am a “born again” Christian. I became a Christian in 1977 and had been very active in all of the churches I’d attended. I’d also spent 2 years in Montreal with the Mennonite Central Committee just 2 years after I became a Christian. However, when I met and then married Dave I fell away from the church. None of the people at my church felt I should marry him. They didn’t give us counseling as we’d requested but were very quick to react once we decided to live together. Of course they were right. But I didn’t see that and was quite bitter over our treatment for many years. I still felt that I was a Christian but God certainly wasn’t a major part of my life. Although Dave had told me he was a Christian when we first met, he wasn’t living as one. I now know that if someone is busy living like a non Christian then it isn’t too likely that he has a good relationship with Christ.

It didn’t take long after Kayda arrived in my life before I knew I couldn’t do this alone. Over the years I grew closer to God once again. I tried to attend church with her a few times when she was quite young but she was very noisy and it just didn’t work out. I was still leery of getting involved in another church due to the judgmental way we’d been treated by my former church. I also feared that any church would kick me out if they found out that Dave & I had lived together before we were married. He never attended church with me.

When we purchased our house in 1995, I noticed that there was a small church just down the street. It intrigued me. However, I noticed that there was no wheelchair ramp. And as it was very small I knew there would be no way for me and Kayda in her giant casts to be invisible and unobtrusive which is how I prefer to introduce myself to people.  I longed to be able to attend. Finally in the summer of 1997, Kayda was out of casts and as she no longer needed to wear her brace during the day her chair could be narrowed to a normal width. Just the day before her chair was adapted I found a flyer in our mailbox announcing a children’s program at the little church each evening that week. That was all the encouragement we needed. The day after her chair was narrowed we went to the church to attend the children’s program. I just went to the door when we arrived and asked if someone could help carry Kayda up the stairs. We quickly had volunteers. Once we were seated, I noticed that someone I’d worked with many years earlier (Heather) was there. I remembered from when we worked together that she was a Christian and was just home from Bible school. We’d gotten along quite well back then so once I realized that this was her church I knew that this was the right place for Kayda and myself.  We enjoyed the program that evening. I told Heather that we would try and attend as much as we could on Sundays. It felt so good to be back in church.

So, that next Sunday morning Kayda and I drove the short drive to the church. That was the morning after Princess Diana died. As soon as I heard prayers being offered for Princess Diana’s family and those in the car, I knew that this was a good place for us to be. I don’t really know why that was so important to me, but it was. Kayda wasn’t well enough to attend church every week but we went as often as possible and I always attended when she was at respite. Every week several men were very quick to come and carry Kayda and her chair up and down the stairs. Even though people were a little unsure of how to relate to Kayda at first, her smiles quickly broke down any barriers and people realized that she was just a little girl. It helped that Heather worked with people like Kayda. She was one more person that was comfortable with Kayda right away. Kayda loved church. She especially loved the sermon as she thought it was a story. She enjoyed the singing too. I usually held her during the sermon just to keep her quiet-even though one lady kept telling me she was too big. When the sermon was over Kayda would often complain. And, when we were downstairs having coffee after the service Kayda clearly recognized the voice of the man who gave the sermon. She loved him and always had a big smile when he spoke to her.

Chapter 36: Difficult Days

Chapter 36: Difficult Days
That was the beginning of a difficult summer. In the spring I’d registered Kayda for about 6 weeks of day camp. I was beginning my yearly battle to keep her occupied enough for her to sleep at night. Well, that summer she managed to make it to one week of day camp (2 weeks got cancelled due to lack of children.) The other weeks she missed due to illness. She and I passed tonsillitis back and forth to one another all summer. First she got viral tonsillitis, then I got it and then it became bacterial so I passed it back to her.

Dave was around on and off and generally wasn't very pleasant. I was always glad when he was away. He lived in the basement but had to share the kitchen with me. Generally though, being on my own was really good. Gone was the constant tension fo trying to not make him angry that had been part of my life for most of my marriage .I was able to just be myself. I found that I quite liked going out to eat and going away on trips by myself. Several of the times that Kayda was at respite I went to the US for the weekend.  I did a lot of wandering  through craft and book stores. I'm a shopaholic. I don't need to buy anything to have fund. Just looked and the possiblity of finding treasures  is enought for me.

Chapter 35: Am I Losing them Both

Am I losing them Both?
Over the spring months Dave was spending less and less time at home. He went away most weekends even if it meant camping in the rain by himself. I thought he was having trouble at work. Late one night at the beginning of July I commented to him that I loved him. I asked him if he loved me. I know, dumb question likely. He said no he didn’t and he didn’t want to be married to me anymore. I was shocked. I’d never even dreamed that things were that wrong. He said he had known since the day I went to pick Kayda up from respite instead of going to the hospital with him, that he couldn’t stay with me anymore. He didn’t like the fact that I chose to care for her before tending to him.

The next couple of days were very difficult with Dave still living in the house. We tried avoiding each other but it wasn’t easy. I told him it wouldn’t work and he said he’d move to a camp site on the weekend.

It was during this time that Kayda was having her gurgly spells. She was usually gurgly by afternoon each day but would settle with repositioning. For several days though she’d been gurgly most of the time. Two days after Dave’s stunning announcement Kayda had an appointment with the dentist to have a tooth filled. I’d just been taking her to the dentist at the local mall and he’d been really good with her. This was her first filling though.  I gave her a sedative before we left. She was really gurgly and I wasn’t sure if we should go ahead with the filling but her oxygen level was quite good. Her social worker came too just to see that she was cared for properly by the dentist. I can still remember Kayda there, very drowsy and smiling as the dentist is drilling her tooth. I said “Kayda you don’t have to smile when someone is doing that to you”. 

I spent some time talking with the social worker after the dental visit about Dave’s leaving. She reassured me that I wouldn’t lose Kayda and that she would try to get me extra support.

That night I remembered that we had a partial suite in our basement so I suggested to Dave that he live there rather than in a camp site. I was really dumb being nice to him like that. But…

When I was putting Kayda to bed that night I noticed she was breathing heavier and faster than usual. Her oxygen level was lower too. Over the next few hours I watched her breathing speed up and become more labored and her oxygen level drop. I finally phoned the GPs’ on call number and they recommended I take her into the hospital. I remember stopping for gas on the way and Dave being there. He looked at her and checked her oxygen level and said that she’d probably be fine if I just took her home.  Of course I knew she at least needed to be checked out at the hospital. As I still didn’t trust the local hospital I drove the almost hour long drive to the one we usually used.

We arrived around midnight and she was obviously sick enough for them to put her in one of the beds with a monitor rather than in the pediatric section of the ER. I sat next to her all night listening to how quickly she was breathing and seeing how low her oxygen level was getting. I knew she was sick. At the same time I was still absolutely devastated over Dave’s leaving. I was worried about how Kayda was doing but figured we were ok as we were at the hospital. No one told me anything all night about whether she was being admitted or not. It turned out that the staff hadn’t wanted to wake up the resident in order to work on getting her a bed. Around 4 am a social worker came in and told me that he was the emergency on call social worker and had been called to come and sign admission papers for Kayda. That was the first hint I had that she was being admitted.

Finally around 6 am she was taken upstairs to pediatrics. We were put in the multi bed “nursery” as usual. She was breathing so fast and grunting by this time. We were basically left alone though as it was shift change and everyone was busy. I sat there, exhausted and worried and just broken up over being on my own with no one to turn to for support. I sat and cried next to Kayda’s bed.

Kayda’s pediatrician came to the ward mid morning. He looked at her, and asked how long she’d been breathing that way? Right away things started to happen very quickly. Within minutes a nurse was busy putting in an IV. The pediatrician asked for the phone number of the person he was supposed to call at the government in order to make critical treatment decisions. And, of course it was a holiday weekend.  I was stunned. He told me that she was in very bad shape and quite likely wasn’t going to make it. I just pleaded with him to try and save her. Soon after this one of the nurses came in and grabbed her bed and pushing people out of the way quickly wheeled it to a room right next to the nurses station. Obviously they didn’t want her dying in a room full of babies and their families.

The nurse asked me if I had family around. I told her about Dave (these were all nurses that had known us for years). She said I had to call him and tell him to come in immediately. Then I called the director of the associate family program as all of Kayda’s other workers were on holidays as of midnight the night before. That child of mine. She really picked her times to get sick. I was afraid that we would get into a situation where the Dr wouldn’t want to treat Kayda. I knew I had to have someone “on our side” present. By early afternoon we had 2 or 3 social workers and several nurses plus Dave & I at the hospital prepared to fight for Kayda. Dave had phoned the head nurse for the company he worked for and as Kayda was officially in their program she came in too just in case we needed help. They all discussed their action plan and were prepared to convene an ethics committee meeting on a very short notice. That was always the worst part of Kayda being critically ill; wondering if the Doctors would be willing to treat her appropriately.

Of course, all this was happening after I’d been awake for more than 24 hours. Kayda stabilized by early afternoon although she was still critically ill. As I hadn’t been prepared for her to be admitted, I needed to go home and get some things (the drive was an hour each way). Dave agreed to stay with Kayda That was pretty dumb of me to make that drive with no sleep but I did it. I remember sending an email to the Our Kids list (this was the first mailing list I joined after getting internet access) and telling people about Kayda’s illness and Dave’s leaving me. I remember telling them that I was going to now go back to the hospital and start adjusting to being a single mother.

The next morning although she was still very ill, Kayda was showing her spunk again. Because she was on such a high amount of oxygen she had a mask on which she hated. The only time she would tolerate the mask was when she was too sick to fight it. She kept fussing so I picked her up mask and all. There she was laughing through her oxygen mask as I held her. She’d fooled them all again.  She was in the hospital for about a week.

The one good thing that came out of the hospitalization was that the orthopedic surgeon saw her and said that she didn’t have to wear the abduction brace during the day any more. Yeah!!!!! He also had a spinal xray done. He said that her spine looked good and that she didn’t need a back brace. I told him that she’d been wearing one for several years by that time. Oh, keep it up, he said. Sometimes these Doctors don’t seem to notice or remember much about their patients.

Chapter 34: One More Try

Chapter 35: One More Try
Despite my fears and near drowning, Dave & I went on the cruise and learn trip in early June. On the first day I asked the teacher how he worked with people who were afraid of the water. I can’t remember what he said but at least he knew how I felt. We were on a 40 ft. boat. There were 2 other students as well as Dave & myself and the instructor who was an older man.  We spent 5 days sailing around the islands near the coast of our province. It was a nice trip and I saw places I’d never seen before. I was quite happy because for most of the week there was very little wind. We’d get the sails up for awhile but not go very fast. That was fine with me. The purpose of the week was for each of us to get our basic yachting certification. That meant reading and written tests as well as actually doing what was required in sailing the boat safely. I did ok managing the ropes (sheets) for the main sail as I could stand in the cockpit area of the boat. The first time I took the helm I spun the boat around 360 degrees. I refused to take it again. I told the instructor I didn’t care if I didn’t pass, I wasn’t doing it. The stubbornness that came out in fighting for what Kayda needed came out at other times too.

One morning after spending the night tied up to a dock on an island, the instructor taught us how to dock properly. He told me to take the helm. I said no. He said “Barb, either you take the helm, or you get onto the dock and untie the boat and jump in once we’re moving”. He’d obviously seen me nervously getting on and off the boat each time we docked. So I took the helm. I didn’t do too badly. I can’t even parallel park our mini van and hear I was parking a 40 ft yacht. Obviously that’s not the right terminology.

On the last day we encountered our first real burst of wind. The whole first couple of hours of our trip back across the strait were very windy. They had the sails up and the boat had one side almost totally in the water. I couldn’t cope with that. Even though I’d been told over and over that the boat we were on had a keel and that meant that it didn’t tip easily, I knew the truth; boats tip over. So I went below and stood in the doorway with my back to the side that was in the water. I stayed that way until the water finally calmed down. Obviously a 5 day trip with virtually no wind wasn’t enough to overcome my fear of water. It was deeply ingrained. I’d actually been afraid of water my whole life. But I tried. I figured that had to count for something. I was amazed a couple of months later to receive a certificate giving me “expert crew” qualifications. Dave got the proper certification as did the other students.

One of the other students was a Doctor When I told him we had a daughter with hydranencephaly, he knew that meant she had no brain. He said he could never understand how parents could love children like that. Of course, being the mom I am, I’d brought pictures of her taken the previous Christmas where she was happy and laughing. I showed them to him and said “does she look like she has no brain?” No he said. By the end of the week he thanked us for giving him a better understanding of families of children with severe challenges.

While we were away, Kayda stayed at the respite home run by the people Dave worked for. Apart from the fact that she got quite gurgly and it was hard to know if she was ill she did reasonably well. However, she was mad!!!! Not only had I left her, I actually left her for several days in a row and I expected her to go to school every day with someone else looking after her. They finally ended up keeping her home from school for a couple of days as she just wasn’t happy there. The social worker visited during the week and she could tell that Kayda was just plain angry about being left behind. She was a very determined child and knew the way things should be; mom going away didn’t figure into her idea of the perfect world. It was hard because we were out of phone range most of the time. We only were on land every 2nd day so we couldn’t even check on her every day.

Chapter 33: Let's Scare Everyone

Chapter 33: Let’s Scare everyone
On Monday Kayda returned to school. Always in the past I had a cell phone and was always reachable. Well the cell was at the bottom of the lake. Nothing ever happened and Kayda seemed quite healthy so off I went grocery shopping.  I got home around noon. On the front door was a note from a social worker who lived nearby (he wasn’t Kayda’s worker at the time) telling me to phone her guardian right away. I phoned, and miss Kayda was in hospital. Around 10 she had started to get gurgly and her aides at school had gotten scared. They couldn’t contact me, so phoned 911. When I got to the hospital, Dave, our service coordinator from the Associate Family program, the legal guardian and Kayda’s aide from school were all gathered around her bed. She was lying there on her back with the head of the bed quite high and an oxygen mask on her face. She was giving this pitiful high pitched cry. That was the cry reserved for extreme situations and could only be quieted by mom. I immediately picked her up and she snuggled in and settled down. The pediatrician came in and said that they’d done xrays and it looked like she had pneumonia. He had spoken with Kayda’s pediatrician and they both felt she needed to come into hospital. Although I’d heard from a couple of nurses that the new pediatrician at our local hospital was wonderful, I still didn’t trust her being there after the problems when she was younger. So, we agreed that she’d be transferred to the other hospital. When the ambulance arrived they assessed her and just didn’t like the way she looked or her breathing sounded. So, we went the whole way to RC hospital with the lights and sirens going.

By the time we arrived at the hospital we had Kayda lying on her side and her breathing seemed better. By the time she was in her bed her breathing was absolutely fine. She didn’t need oxygen or anything. After a couple of hours the pediatrician arrived and he looked at her and said “she’s fine, isn’t she?” I said yes she was. We went home the next day. The problem was that noone had tried lying her on her side. They just left her on her back.

Over the next little while I started rethinking all these supposed illnesses she was having. I realized that the first “false alarm:” had happened just 4 days after starting the new seizure medication. So, I went back to the information I’d gotten off the internet and sure enough, excess saliva was listed as a side effect. It only occurred in 3 out of 200 children studied but I concluded that Kayda was number 4. The Dr didn’t believe me at first but had no other explanation as to why she kept getting gurgly when she wasn’t really sick. Through reading online and asking questions of the people on the mailing list I was on, I learned of a medication called Robinul that dried up secretions. I looked into it and it seemed to be the answer to Kayda’s problems. When I first approached the pediatrician about it, he said that no it didn’t work and that the only thing that was proven to work to help with excess saliva was a scopolamine patch which was used to combat seasickness. So he prescribed that. But, it was currently not available so I managed to convince him to try Robinul with Kayda. Well, that was the miracle we needed. Gone were her false alarm illnesses. It was about 3 months after she started the Sabril when she finally got put on the Robinul. During those months it was very hard to know if she was really sick or not.

Chapter 32: Spring: Let's try something new

Chapter 32: Spring: Let’s try something new
With her casts finally off Kayda now flourished and shone and fully enjoyed life. She still had to wear her Scottish rite abduction brace all the time, but she no longer needed the extension on her left leg. By this time she and I were very accustomed to her awkward positioning.

Ever since about the age of 6 Kayda was totally off all seizure meds and despite being told by various people that she was having seizures, I was convinced that she wasn’t. But, then in the spring of 1997, she started having small shiver type seizures. They never lasted long and they were usually over before you could hardly notice them. But, after keeping a log of these episodes for awhile the pediatrician decided that she should go on a new anticonvulsant called Vigabatrin or Sabril. I looked it up on the internet and found that it wasn’t available in the US at that time but that it was extremely effective in controlling a number of types of seizures but especially Infantile Spasms. I read the side effect list and then promptly forgot it. I shouldn’t do that, should I?

About 4 days after starting the Sabril, Kayda woke up all congested and I automatically assumed that she had a cold so kept her home from school. By mid morning, though, while lying down she sounded fine so she went back the next day. Her oxygen level was fine too. She started tending to get a little more gurgly than usual but otherwise seemed fine. She was happy and her seizures seemed to have disappeared.

As you can probably gather from what I have and haven’t said, Dave mostly did his own thing while I stayed home and cared for Kayda and did all that needed doing at home. One of his passions was sailing-anything to do with the water. Well, one of my biggest fears is of water. So, I decided that in order to overcome this fear he and I should take a cruise and learn sailing holiday. About 2 weeks before this holiday, while Kayda was at respite for the weekend Dave & I went to a nearby lake for the afternoon. My plan was to sit on the shore and read while Dave sailed. Good plan. But, the water appeared fairly calm when we got there so I decided to go in the boat with Dave. Everything was fine for awhile. Then he tried to change the direction we were going and all of a sudden I realized that we were going to tip. I remember wondering as we went over whether or not the sailing school gave refunds for the course we were booked to take.  As the boat tipped over, I was caught in all the ropes (sheets they’re called) for the sails and was trapped under the boat. That only lasted for a few seconds but was much too long for me. At first I was panicking and grabbing onto Dave and just about pulled him under. Then I remembered my Life guard training from when I was 12 when we were told that often panicking people can try and drown their rescuer. I didn’t pass the course at the age of 12 but that memory helped me to settle down a bit. Here we were a fair way from the edge of this lake with an upside down boat. It was late May but the lake was very deep and fed by melting snow, so it was very cold. Although it was a large and popular lake there weren’t any people in our vicinity who had seen what happened. I climbed up and sat on the hull of the boat. After a few minutes Dave told me we had to go back in the water and try to right the boat. I said no, I wasn’t going anywhere near being in the water again. He finally convinced me that that was what had to happen. We got the boat turned right side up but it was full of water. In the boat had been a boat motor, my glasses (I was wearing sun glasses), 2 cellular phones, and a lot of other stuff which was now all gone.

I don’t know how long we were out there. Finally someone on a jet ski came by. Dave convinced him to take me back to the dock and to then try and find some help. I got up on that thing and the guy took off really fast. I was terrified but I figured that I’d already nearly drowned that day so what more could happen. By the time we got to the dock I was clearly on the verge of hypothermia so someone who had a cell phone, phoned 911. That was an afternoon I’d much rather forget. Dave & the sail boat finally got towed into the dock and we were both treated for hypothermia in the ambulance but refused to be transported to the hospital. When we got home I was still freezing. I think it took over an hour of sitting in a bathtub of hot water for me to finally warm up. I was absolutely shattered over the accident. Dave commented that night that he finally realized how terrified I was of water (by the way, he’d almost drowned me another time on that same lake years earlier when we’d rowed across this 2 mile wide lake in a 2 person inflatable dinghy and a storm had come up) and that I really would never go along with his dream of sailing around the world or in the south pacific. My  philosophy was then and still is,  was that boats tip and people die and I wasn’t having anything to do with them.

Wednesday, April 3, 2013

Chapter 31: Respite and a Decision with Unseen Consequences

Throughout the whole time Kayda had lived with us, getting overnight reliable, consistent respite was almost impossible. For the first few years we were lucky if we got 2 or 3 weekends free in a year.

Finally in early 1997 a new respite home for children with medical challenges opened in our area. It was run by the same organization that Dave worked for. Even though it was against the policy of the Associate Family program to have children cared for in group care situations it was decided that Kayda could go to this home.

Her first weekend there was the weekend before her casts came off. In her usual fashion, she came down with a cold the morning of the day she was to go to respite. After numerous conversations with the nurse in charge it was decided she could still come. Precautions always had to be taken as 2 children were cared for at a time in this home. Once Kayda was dropped off and settled in Dave & went away for the weekend. We rented a condo in the town near where he had a season pass for skiing. On Saturday Dave went skiing and I stayed in the condo and just relaxed. There were no phones in the condo so I had to walk a fair distance to a pay phone to check on Kayda. She was definitely sick but seemed to be doing ok.

On Sunday morning we checked out and I went to the ski hill with Dave. I just sat in the lodge and read and did cross stitch. After awhile I noticed Dave coming in to the lodge. He didn’t look good. It turns out that he was hit by a snow boarder going way too fast. He had been examined by the ski patrol and had rib tenderness and a sore wrist. They didn’t think anything was broken but suggested he get checked out by a Dr when we got home. When I’d phoned to see how Kayda was doing that morning they told me that she had a fever and seemed to be having a lot of trouble breathing. From that information, I figured that we would likely be taking off to the hospital as soon as we got home.

Despite his sore wrist and ribs Dave drove home. We were in our old van which had no power steering so driving wasn’t easy. Our other van was having trouble with the starter. Pick up time at the respite home was 3 pm. We didn’t get home until well after 4. I was very conscious of the fact that the people at the respite home worked with Dave and felt bad about being late. Dave felt he needed to go to the hospital so I took the old van while he tried to get the other one started. Before we’d gone away I’d arranged to have a respite person come in on the Sunday evening. Before dashing off to get Kayda I gave her a list of things to pack as I was still sure we’d have to take her to the hospital that evening. I felt bad about Dave being injured but really felt that Kayda was my priority. I learned later that this simple decision had far reaching consequences.
It turned out that Kayda really wasn’t doing too badly. She always sounded much sicker than she actually was. Having the oxymeter made a real difference. I could see that although her oxygen level was a bit low she was above her lowest limits. Dave’s wrist and ribs were just bruised not broken.

The next day, as planned we went back to the hospital to have Kayda’s casts removed. Because her physio had gone so much better with her in hospital the last time, it was decided to do the same. Again she did much better having her initial physio at the hospital with the nice big bathtub.

Chest xrays and tests all showed that Kayda’s lungs were fine and that she just had a cold and upper airway congestion. On that visit we had a real “gem” of a student nurse assigned to us. As this was a teaching hospital and Kayda and her needs were thought to be rare we were always assigned students. This student actually argued with our Family Dr about Kayda’s condition. The student was sure Kayda was gravely ill and her lungs were badly congested even though the Dr said that no, it was just upper airway noise. The student felt that deep suctioning was needed to clear Kayda’s airway. I asked her if she’d ever suctioned nasally before. She said no, but that she needed to practice. “You’ll practice on someone else” I said. That was often an issue when Kayda was in the hospital. The only effective way to suction her was nasally but I found that even the RNs didn’t do it gently or effectively enough (for me anyways) so I usually did it myself. There was one physiotherapist that was good at deep suctioning. I always stayed with her in hospital and that was one of the things I insisted on; that I or a trained caregiver do any suctioning.

Chapter 30: Here We Go Again

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.