Normal life?

So Emma was 12 weeks old when she was trached, we spent 4 weeks in the Children's Hospital and she went into respiratory arrest a fortnight later. So at that point she was 18weeks old. That week we had an appointment at the children's hospital, to see the Oncology Professor. I remember when we walked into the unit Emma smiled for the first time since we had left the hospital. She grinned like a lunatic at every nurse! In her mind you could see she was at home. We had to cross the city from the car park, she had so much equipment that we used the Silver Cross carriage pram, the shopping tray was full, and there was more stored by her feet. She was stripped and weighed and measured, and Prof was happy with how things were going. After that Emma was happy, & each week we returned to the Children's Hospital she would light up. Sometimes we saw two or three departments the same day. Andy always had to come too, as he drove whilst I watched Emma for signs that she needed suctioning.

We used to take David who was 2yrs old with us. I remember him playing on the large climbing frame in the large Victorian outpatients waiting room, and giggling at the hot air blowers in the bathrooms which were the right height for him. He used to have a little stripy backpack full of miniature books, which eventually passed on to Emma. We would read them over and over again. David still wasn't speaking, when he was upset or cross he would growl,and if he was very happy he would giggle, but those were the only noises he would make. He was a serious little boy, who spent time ordering his toys according to size and colour. He loved stories and cuddles, and more than anything he loved Emma.

At the end of July we were awarded 10 hours a week at home nursing care. We were introduced to two agency nurses who became angels to our family. They were both older ladies, in their 60's, and had cared for another child for 6yrs until he had his trach removed just a few months before. Even so I didn't leave them in sole-responsibility of Emma for many months. If I hadn't slept, then I would lie down on the couch. They would help me to bathe Emma, and to do the daily trach care. Some days I couldn't let go of her, for different reasons. Sometimes she would need need cuddles and breast-milk, and we would just sit and they would play with David, or if he was occupied or napping then they would do housework for me, or start prepping the evening meal. Nothing was too much or too little for them. They stayed with us for almost 3 years.

In August, on the day of the solar eclipse, Nurse W was with us. Emma had felt out of sorts for a few hours, W observed her for a while, but it was only when we wired her up to the oxipulse monitor when she dropped off for a nap that we saw the seriousness of the situation. She was struggling for oxygen. I called an ambulance, and we were blue-lighted to the local hospital for the first time with Nurse W waiting at home with David for Andy to come home.

After a break of a year, that's not enough. I'll write about our first post-op hospital stay next.

Respiratory Arrest

So this is the post I have been putting off for months.

A fortnight after we brought Emma home we had our first major incident. On the Friday night I slept with Emma as usual, and half way through the night I realised that I wasn't functioning properly. I was just too exhausted. I woke Andy up and asked him to take over, which he did without hesitation. I fell into bed next to David and passed out. In what seemed just a minute, but was in fact several hours later I was woken up by Andy shouting, and the apnea alarm going off. I ran into the small bedroom to see her in the middle of the bed lifeless & blue. Andy was scrambling through the emergency box repeating to himself  "Tube change, it's blocked." We quickly changed the tube, Emma was non-responsive. When we removed the old tube, a long string of thick secretions came out, stuck in to the bottom of the trach tube. With the blockage removed, and a new tube in, she should have started breathing again, but she didn't. Andy started to perform CPR. He breathed 2 breaths in but them seemed to hesitate. I told him to go and phone for the ambulance, and I would deal with Emma. I don't know what made me say that. He agreed and went, and I knelt of the floor, and breathed five breaths into the trach tube. With each breath I thought after five I will have to start chest compressions. My heart was screaming "Come on Emma! Don't go!" On the fifth breath she spluttered back to life with a big cough & opened her eyes. I shouted that she was ok, Andy was already on the phone, and I could hear him telling the operator that she was breathing again. I just sat & watched her, and she just looked at me, lying still with a "What just happened there?" expression on her face.

Andy came back upstairs, and said the ambulance would be here in a few minutes, he would go and wait at the corner of the street. They seemed to be with us immediately. Seeing that she was breathing, they quickly checked her over, and asked us if she was always that blue colour, which she was! They asked if we wanted to take her to the hospital, but we didn't feel it to be necessary, we knew why she had stopped breathing, and felt confident that she was alright. At sometime during their time there, 6yr old Lizzie walked in and asked them not to be so noisy, as it was night time, and she was trying to sleep! We thanked them for coming so promptly, they explained that Emma was highlighted as an emergency case & they would always blue light to us if we called.

We took it in turns to sleep over the next few nights. It was a very odd feeling realising how close we had come to losing her. On Monday morning our GP telephoned to see how our weekend had been. She was quite audibly shocked by my response, and she told me to leave it with her. She called one of the community nurses, who was at the hospital, she told Emma's Paediatrician what had happened, and within an hour she was at our home with an oxi-pulse monitor he had unplugged directly from the ward. We kept it for 6 years, and it brought us peace of mind, and an opportunity to deal with thickening of secretions before they blocked the tube. Later in the week the nurse also brought two humidifiers which helped to keep the secretions looser, and easier to remove.

We had to rearrange the bedroom, we moved the bed. Whenever we walked into the room, we just kept seeing Emma still and blue on the bed underneath the window. It was a traumatic experience, but also an empowering one. It filled me with confidence that in an emergency, we did know what to do, and we would do it.

Phew! I have written it down :-)  At last!

Home

Going home was strange. It was the goal. To get Emma home and make things normal. I don't think either of us realised how things were not going to be normal for a very long time to come.  I remember sitting in the car on the way home, the car piled high with Emma's belongings and medical equipment. I was excited, but also sick with apprehension. I was getting more apprehensive the further we got from the hospital. When we got home, and Andy showed me into the room he had prepared for me & Emma , I burst into tears. 

The room was our son's small bedroom. There was a tall wooden storage unit piled high with medical equipment and catheters in different packaging than I was used to, there were different neck ties to the ones I was used to. It was too much. I was angry with Andy he had told me that everything I needed for Emma was ready at home. This didn't feel ready. This felt strange and alien, and chaotic compared to the order of the hospital.  I was scared, and I lashed out with my tongue. 

To make things worse, Emma didn't know where she was. She looked around her, not recognising anything or anyone apart from me & Andy, and she was miserable. She didn't know this was home. David sat as close to her as he could get. He sat on my feet when I sat down with Emma, he sat at the side of her cot whilst she slept during the day. He wasn't going to let her out of his sight again. At night time, he slept in the crook of his Dad's arm. During the day he seemed like a ghost of the chatty toddler I had left behind. He was silent. he didn't speak, any more. He smiled and he cuddled me, and kissed me, but he, like Emma had become silent. 

Emma & I slept in the single bed. With no oxipulse monitor at home we were reliant on an apnea monitor to alarm if she had problems breathing. I didn't sleep, I dozed for about 4hours, suctioning the trach tube every 10-15minutes. 

The following morning I sorted out the supplies, and organised things to make them more logical. I apologised to Andy, but felt hurt and isolated. I had stayed with Emma in the hospital and felt the responsibility of her care weighing heavily on my shoulders. 

I can't remember how we got through the next few weeks. I slept during the day at the weekend, I think I passed out through exhaustion. Andy returned to work. I think my Mom took Lizzy to school & back for me, we organised with a local Mum to do it for us at sometime, but I don't remember how soon that was. The best thing was meeting the Paediatric Community Nurses. They had all nursed children in hospitals and at home who had tracheotomies. I really felt they understood what I was dealing with. 

That will do for now, this is more difficult to write down than I originally imagined, hence the break between posts. I am on my long summer break now, so I will try to write more over the next few weeks. Thankyou to those of you who have encouraged me x

Escaping!

Andy was fighting to get us home. He was telling the Community Team that we were ready to go home, and telling the Ward Staff that the Community Team had everything ready at home for us. It was a huge double bluff that worked. Three weeks post-op we were almost ready to go home.

At the end of the third weeks post-op we moved into the parents accommodation for the weekend. If it worked out then we could go home on Monday morning. Sister T checked with the accommodation officer, she said it would be fine, the only person who would be in that particular corridor would be Mrs R whose little one wouldn't be with us much longer.

Emma and I sat in the quiet little room all day on Friday, interrupted just by the occasional muffled sobbing of Mrs R. It was so sad, heart-breaking. I will never forget it.

We had brought a lot of things from home. Emma's clothes, toys, my clothes, books, even a footstool which made feeding Emma more comfortable. On Saturday, Andy started taking things to the car ready to take home. It was so exciting. I hadn't been home for almost 5 weeks. Staying in the parents accommodation was great, it was wonderful to spend time with Andy not in public. I had missed that so much. I just wanted to put Emma in the car and go home right then and there. It was hard to wait.

Eventually Monday morning came around, and I hadn't had to go back to the ward for help, and Emma was still alive. I suppose that was the aim. I purposefully only took Emma's nappy bag & trach equipment back to the ward with me. It was early, and parents were just starting to stir. I sat in Emma's room, and a nurse came in and offered me some toast. She laughed and said "You're going home today aren't you. I don't know your name?" I had always been Emma's Mom!

It was a long day, waiting for all of the different Drs from different departments, and then waiting for the prescriptions for the various medication. It was after lunchtime when we finally left the ward, and started to make our way home.

Still in hospital.

A fortnight post-op my oldest friend came to visit. She came up from Oxford. She came before any of my family came. My Mother was ill, and couldn't come. I don't know why nobody else came. our older two children were being passed between relatives, Andy brought them into visit, and they seemed absolutely fine, much to my surprise.

Andy was still travelling back & forth everyday. This had all happened at a crucial time at his work-place. They were in the process of moving the whole foundry from one town to another. It was a small family firm, and Andy had been with them since university. They were very supportive, but his role was crucial to the move and sometimes he could only visit for a few hours a day.

We were getting better at recognising the signs that Emma needed suctioning, and better at changing the trach. There was a trached baby in the next room whose parents weren't finding it so easy. Mom couldn't do the tube change, and the Dad would shout, and then she would cry. It was horrible to listen to. Once the Dad had gone home, the nurses would stay and comfort and talk to her, they were incredible.

Every now and again a nurse would say "This room was M's room, he left the week before Emma came." They all talked fondly of M. He had had a trach, he was three years old, he had come to the ward when he was born, and had not left until the trach was removed when he was three. The nurses had photos of him, and of how the room had been turned into his bedroom and playroom. This wasn't going to happen to Emma we were going to escape!

A telephone call came for me, it was someone from the Community Paediatric Nursing Team. Just saying hello, to say they were the team who would be organising equipment and support for us once we were ready to come home "in a couple of months." I replied that things were going really well, and I thought we would be ready for home sooner than that. When I got off the phone, I found the portable pay phone and called Andy and told him about the call. He had a similar call at home that night, and he gave the same reply. He asked what they were waiting on, to order the equipment needed. They needed a list from the hospital, the next day he asked Sister T to help compile a list. He then faxed the list to the Community Team. The escape plan was started.

A few days later I took Emma out of the hospital and into the city, with a nurse at my side. It was terrifying. I couldn't hear her breathing, I had to keep looking at her face. I remember I had to suction her in Boots the Chemist. My legs were like jelly. The following day I took her down to the hospital shop by myself. We were stretching our wings. The Nurses started talking again about visits home. I explained with a two year old at home, I wasn't willing to cause him more upset by coming and going. When we went home it would be for good. I don't remember who suggested it, but it was decided that when we were ready Emma & I would move into the parents accommodation room for a weekend, and then if all went well, we could go home. In the meanwhile we were moved into our own room on the ward. Andy & I took over all of Emma's trach care, the nurses were there if we needed them, but the door was shut and they knocked before they came in.

Several separate memories that I don't remember where they fit chronologically are very bright. Meeting the Hospital Chaplain in Intensive Care, late at night, he was so kind, and his words, just a chat really, gave me so much comfort. When we were later back on the ward, he seemed to remember us, and gave me directions to the Chapel where I escaped to for a few minutes whilst Andy was with Emma one day.

Another memory was talking with Mr P about the results of the scans. The hemangioma was present in Emma's skull, in the bones too, creating a honeycomb effect in her bones. It went down into her chest, but it wasn't known how far down, she would need another scan to determine that. It was hard to put that information and the baby lying in my arms together. I cornered a Snr Registrar late on the Sunday afternoon, and grilled him about whether this meant there was a possibility that Emma could be brain damaged. He said not, but her eye sight and her vocal cords maybe damaged.

That's enough for now, next time I will write about going home.

Hospital Life Goes On

Things fell into a routine of sorts. When Andy could he would come in as early as possible, bringing me breakfast which I would eat in the room at the end of the ward. If not when the nurses changed Emma's bedding I would run down to the hospital shop and buy a sandwich, and eat it in the lift on the way back.

The day after we started suctioning I was told I had to go to a meeting with the hospital social worker. I found a nurse to sit with Emma and I went, I hadn't wanted to go, I didn't understand why I had to go. The Social Worker gave me claim forms for disability living allowance and carers allowance. I still didn't understand. Why had she given them to me? She seemed uneasy, she explained that Emma was now classed as disabled. My baby was disabled. No, that didn't seem right.

She then asked if I needed to make arrangements for our older two children to be put into foster care. Was this for real? Had I slipped into a nightmare whilst in the lift? There was no way any of my children were going to be fostered. She explained that a child with a trach would place a huge strain on my family and I should seriously consider it, Emma was going to be in hospital for many months. I asked if there was anything else she wanted to talk to me about, when she said no, but we needed to discuss the fostering more, I politely said that I didn't need to talk about it and left.

I ran back to the lift and to the ward. The nurse wasn't by Emma's bed, one of the lovely Italian cleaners was stood next to the cot cooing and smiling at Emma. She was breaking her heart, bright red, silently crying, soaked in tears. I picked her up and she calmed down. The cleaner explained that the nurse had to go, the nurse came in and explained that one of the heart surgeons had come in and she had to be with the parents to support and take in info about their baby's operation. I understood, but I was upset. After that I left Emma with Andy or Sister T whilst I ate or showered but that was it, I waited for her to sleep so I could go to the bathroom, and then I ran.

The next big thing was learning to change the trach tube. I didn't even realise that it had to be changed. There is a process. You have to set up everything before hand, then swaddle Emma, cut the tapes that held the tubes in place and remove the tube, someone else places a lubricated tube into her neck. Whilst the tube is out before the new one is inserted she can't breath. Sometimes the hole, the stoma, puckers and closes and you have to force the new tube in, or use a smaller tube. Then she gags and coughs, your hands pour with sweat and she is pouring with secretions. Then you have to tie the new tube in place with the most complicated knots! It is like learning to be a Scout! The first time this was done we watched, then we held and took out the old tube. Then we put the new tube in. I remember the nurse laughing at my shaking hands. They were all such good teachers. I felt sick each and everytime, but I was determined to learn how to care for Emma, she was my baby, she didn't belong to the hospital.

Towards the end of the week, whilst walking back from the bathroom, I bumped into a mother. She introduced herself, she was German, she asked if I was the mother of the baby girl with the trach. She whispered quickly that her son was in the next room. I understood her urgency, she wanted to get back to him. She quickly said that I was not to listen to the staff about needing to have lots of short visits home before we could be discharged. We had already been told about these, a few hours away, an afternoon, a day, a night, a weekend, and only then if we felt confident, and the hospital felt we were ready would Emma be discharged. The Mother told me that I needed to stand my ground, she had been there with her son for almost 5months, and she realised now, that there was just no need. She told me to master the trach care and run! She smiled, squeezed my arm and left. I saw her leave with her son the following day. I was so grateful for her words.

One afternoon I left Emma with Sister T to get a quick shower. There was a shower room on the ward. When I came out, I saw Sister T standing at the nurses station with Emma. I noticed the tapes of her trach had been cut and Sister T was holding the trach in place. Another nurse was holding a dressing pack to the back of her neck. Sister T explained that she had noticed that the skin on the back of Emma's neck was breaking down. She showed me, the skin looked like pink tissue paper. How was it staying together? I knew by now if it started to bleed, it would bleed a lot. This started another bit of trach care, we had to place padding around the back of Emma's neck underneath the tapes that held the trach in place. Tying the tapes became impossible, so we swapped to some much easier velcro tapes for a while.

Andy & I were taught trach-CPR, basic trach care, how to recognise an emergency situation, how to give her meds. It seemed to be going well. Mr P was very pleased with the reports the nurses were giving him on Emma's and our progress.

There was just one thing still bugging us. Emma was still silent, our chatty babbling baby was still silent. Andy was getting ready to go home one late afternoon, the sun was shining and the windows were open. The atmosphere on the ward was relaxed, someone had turned the radio up. Sister T and a Jnr Doctor popped in, and asked if everything was alright. I said we were all fine, and remember casually mentioning that I understood Emma's throat must still be sore, but surely she should be making some noise of some sort by now. Sister T looked at the Dr and then back at me, "Has nobody explained, did nobody tell you? Sweetie, she's not going to speak, not while she has the trach." I asked about afterwards, and was told time would tell, hopefully the hemangioma wouldn't damage her vocal cords, but it was early days. At that time we thought Emma was expected to have the trach for a year. This upset me more than anything. Sister T went and fetched tissues, and left me and Andy alone with Emma. I sobbed. I felt this was the last straw. Emma had a hole in her neck, a benign tumour growing unchecked, her face was becoming more lopsided everyday, and now we were being told she may never be able to speak.

Andy had to go. He had to collect Lizzy & David from my brother's family. I remember walking the ward to the door, and him looking back at me through the shut security door with his eyes filled with tears. The cruel thing was that as Sister T had explained, playing on the radio was Ronan Keating' "You Say it best when you say nothing at all."

Emma woke up and smiled at me, it was a weak smile, but it was there. The night nurse settled her down on a pillow on my lap and she had a full feed. A Dr came whilst she was still feeding, and checked her over and said she could go back to the ward that morning. He was very pleased that she was feeding, and had had the appropriate nappies. Nurse M came back on duty, and gave me a hug and said it was good to see me smiling. Andy arrived sometime around then, and told me that everyone from home sent their love.

Emma's cot from the ward was brought down to transport her back to the ward. It was a small cot for small babies. When Nurse M saw it she got cross with the porter, she said something funny about a big grown-up Princess needed a big-girls cot, and she sent him off with a flea in his ear to get a bigger cot! When he returned Emma was transferred to the cot, Nurse M gave us both a hug, and wished us well, and we went back up to the top floor. Sister T was there to settle Emma in. She mentioned suctioning again, and said that she would soon have me & Andy doing it. I must have looked horrified, and she said it would be ok, and not to panic. She also mentioned that they had some literature about trachs and she would fish it out for me.

The little girl in the room had been joined by her Mother, a small beautiful American lady. She smiled, but her husband still looked asthough he was in deep shock.

The time passed slowly, Emma slept. Every now and again her breathing would get noisier, and her oxygen levels would drop, heart-rate would go up, and then the alarms would go off. A nurse would appear and suction Emma. She would put disposable gloves on, open a catheter packet and attach the nozzle of a tube which was attached to the wall. She would turn the machine to the right setting, number 6, and remove the catheter from the cover, and then slide the catheter just under three inches into the trach tube, put her finger over a hole on the nozzle to make a vacuum, just like a hoover. This would suck the secretions out of Emma's throat. Emma's body was making natural secretions,and extra ones to try to expel the artificial tube that had been inserted into her neck. The Emma would visibly relax, and drop off back to sleep.

Her neck looked so sore. There were seven stitches around the tube, thick black stitches eating into her tiny neck. After lunch Sister T came in to suction, and said "Your turn Mum." I felt sick, but I did it. Afterwards Sister T got Emma out of the cot for me to feed her, and I felt asthough she was still mine. Sister T was amazed to see her feed, and a junior nurse passing through the room smiled at me and said "Well I never!" The next time Emma needed suctioning Andy did it. We were closely supervised, and slowly our confidence built.

As evening came, Andy had to go home and I settled down for the night. The Night Sister came in and asked where Emma was going to sleep tonight. I said I thought she would be better in the cot. I was worried about hurting her, and squashing her. The Sister pulled up a chair, and explained to me that Emma needed me now, she needed things to be normal, she needed to be reassured. She needed to sleep in my arms, like she always had. She said if I wanted to she would get a nurse to sit at the bottom of my bed and watch that I didn't hurt Emma. I said I would try. The monitor wires and oxygen were trailed across the room, and Emma was placed in the camp bed with me. When she needed suctioning, a nurse would take her out of my arms and take her to the cot to suction her, and then bring her back to me. At sometime Sister was there, and she told me I would have to suction her the following night, that the sooner I got used to it the better. I think it was every half an hour.

The night passed in a blur. I was woken by the smell of toast, and Sister brought me a slice, to congratulate me on getting through the first night! As I came back from the bathroom I heard a familiar noise, another suction machine coming from another room. I asked the Nurse who was sat with Emma if there were other babies here with trachs, there were two on the ward, in the rooms either side of our room.