Monday, 26 September 2011

Gastrostomy info

What is gastrostomy?

A gastrostomy is a surgical opening through the abdomen into the stomach. A feeding device is inserted through this opening into the stomach. This allows your child to be fed directly into his or her stomach, bypassing the mouth and throat.

Why does my child need a gastrostomy?

People who have difficulties feeding can benefit from a gastrostomy. There are many reasons why someone might have difficulties feeding, including neurological (nervous system) disorders and gastrointestinal (digestive system) disorders. Some people also have difficulty swallowing, which increases the chance that they will breathe in food (aspirate). Your doctor will explain to you the specific reasons why your child needs a gastrostomy.

What are the advantages and disadvantages of having a gastrostomy?

Gastrostomies are often useful for children who need to be fed gradually, or have had problems with feeding by naso-gastric tube in the past. Some families find a gastrostomy more acceptable than a naso-gastric tube as it can be hidden under clothing. A useful feature of a gastrostomy is that there will be fewer battles over nasty-tasting medicine as some types can be given through the gastrostomy, bypassing the tastebuds altogether. A gastrostomy can be a permanent or temporary measure, as it can be removed when your child no longer needs it.

How is a gastrostomy inserted?

.A gastrostomy is inserted in a short operation under a general anaesthetic. For more information, see: What does the operation involve?

Are there any complications with having a gastrostomy?

There are some complications associated with a gastrostomy. These are explained and methods of dealing with them are included in Your guide to trouble shooting on page 13.

What types of gastrostomy are there?

There are several different types of gastrostomy device used at Great Ormond Street Children’s Hospital. It is important to discuss the most suitable type for your child at an early stage. The decision depends on his or her medical condition and age, any special needs your child and family have, any other operations your child needs and the surgeon's expertise. You can change your mind at a later date if the device that is chosen no longer suits your child.

These are the main types of devices used at GOSH:

Percutaneous Endoscope
Gastrostomy (PEG)
Malecot tube
Balloon device
(tube or button)
•A flexible polyurethane tube which is passed down the throat and into the stomach. The end of the tube is brought out through a small incision in the abdomen to allow access for feeding. •A flexible rubber tube (catheter) which is inserted through an incision in the abdomen. •There are two types available: a gastrostomy tube and a button or low profile device.
•Can stay in place for about 18 months •Usually a temporary device for the first six to eight weeks, and is then replaced by a balloon device (see right). • The tube can stay in place for about three months, and the button for about six months to one year
•Held in place using a disk inside the stomach •Held in place using wide, flat wings inside the stomach, but may need to be temporarily stitched to the skin • Both are held in place in the stomach using a small balloon filled with water.
•A feeding adapter may need to be attached for each feed, depending on the type of equipment used. •It must be secured with tape and the position tested before each feed •A feeding adapter may need to be attached for each feed, depending on the type of equipment used.
•Removed using an endoscope •Removed by the clinical nurse specialist. No surgery is necessary. •Removed by deflating the balloon.

Next >

Ref: F000380 © GOSH Trust 2002
Compiled by Nutritional Nurse Specialist and Stoma Nurse Specialist
Thing the Drs never told Us
1. cardiomyopathy is not a death sentence.
2. your EF is just a number, it doesnt tell you how long you have to live.
3. you are probably gonna sleep all day after a big day.
4. your probably going to like your room cold at nite.
5. that skip in your heart that keeps driving you crazy everytime you feel it, there called PVCs and they wont hurt you, just anoy you.
6. you may find sleeping on one side makes you feel worse.
7. if your heart is enlarged then you may feel the weight from it now and then.
8. it does suck when you know your sick, but to others you look fine and they just dont get it.
9. if you have an AICD they arent that bad. yes if you get shocked it hurts, but its over so fast and your still alive.
10. when they say an LVAD or transplant is your only option, keep looking, there is more out there.
11. when they tell you that you have only so long to live, remember there not God.
12. women...hormones cause PVCs so if its that time, you may feel worse then normal.
AND most of all remember you have cardiomyopathy. cardiomyopathy DOESN'T have you.

Friday, 27 May 2011

Some information

In the last (almost) three years, I have read so much information on Theo's condition, I like to imagine I am expert on the many aspects that it presents.
I have also neglected the blog for a few months now. Obviously having a new baby is one reason, but mainly it is because I felt lost for words for several months.

I am going to start sharing information now, because I think that it could do with being summarised.

So, the start.

July 2008, wednesday 16th. I was having an ordinary 39+ weeks pregnant sort of day. Heavy, hot & tired. Early afternoon, I developed agonising stomach cramps and found myself confined to the toilet for a few hours, feeling as though I was going to pass out.
Eventually symptoms subsided and Colin took me to see the GP who prescribed gaviscon, plenty of fluids and rest. She also gave me the reassurance that my baby would be fine as s/he was protected by the placenta.

So on Monday July 21st, when I delivered Theo, I never even thought to tell the midwives that I had been poorly. In all honesty, we had such a scant amount of attention that day from the midwifery staff, I doubt they would have made any observations anyway. After a few hours, we took our new baby boy home and proceeded to argue over his possible names!

Tuesday July 22nd we took Theo to the GP for his 24 hour check. Our GP examined him and proclaimed him to be fine, in spite of not being able to feel the femoral pulses (where leg meets groin).
Again, we left, oblivious of anything untoward.

Wednesday, thursday & friday were what I would consider normal for having a newborn baby. Days spent resting, trying to get baby to nurse effectively. It was very hot weather and once or twice I wondered if Theo had a fever but it seemed inconceivable to have already caught something, & I know that fever in neonates is quite uncommon. I was also thinking that Theo was quite a nice baby to have as a third. He didn't cry much, if at all, he was very sleepy and didn't take ages to feed, in fact, he didn't feed very much at all.

On Saturday 26th, day 5, the midwife came to do the heel prick test and weigh him. He had lost 8% of his birthweight; I was actually quite upset about this as I felt that breastfeeding was going 'ok' and my other babies hadn't lost any weight after birth so what was I doing wrong? I was again reassured that up to 10% was acceptable in the first 5 days.

By Saturday evening, I was getting quite concerned about Theo. We attended a family gathering and Theo did not wake once all afternoon. I had to go and wake him during the afternoon as he had not fed for about 4 hours. He didn't feed well when I woke him. All afternoon, in spite of the summer heat, everyone had been commenting on his cold little feet. Later on in the evening I tried to feed him some more and had a little more success. I was in a lot of pain from engorgement and expressed a great deal of milk.

Day 6, Sunday 27th July, I was feeling positively unhappy. I called the midwife team on several occasions to ask for help with Theo's feeding and was told to try him in different positions. I explained that I t wasn't how he was latching on, but that he wasn't capable of even trying. I kept on trying though.
At one point in the day, I had laid him in the moses basket upstairs on his tummy, while I went outside to peg out some laundry. I heard him crying through the bedroom window and have never run upstairs so fast; it was the first time I had heard him cry pretty much since birth.

I remember dad and Kath coming to visit and thinking Theo didn't look well, didn't look right. Dad and Sacha got a little excitable and Theo got his head bumped and I flew into a rage. I was feeling so edgy and worried. Theo barely woke or fed for the remainder of the day and during the night I couldn't get him to latch on to my breast at all. I spent the night in a panic, and finally expressed milk to simply pour into his mouth. By 7 a.m. I was distraught and burst into tears at Colin, telling him 'I am so worried about theo'. Famous last words, I think.

We took him to the walk in centre who immediately sent us to the GP. I remember telling him that I thought he was dehydrated because he wasn't feeding well and was very lethargic. I recall Dr Brockhurst examining Theo and looking at me, perplexed. He sent us into the corridor rather than back into the waiting room while he decided what to do. He came out and told us that the team at the children's admissions unit at Leicester Royal Infirmary would be expecting us.

The midwife had been due to come out that morning and so in between dropping Tabitha off with relatives, I called the midwife team to let them know where we were going. The midwife I spoke to was genial and said to call them back 'when he is discharged'. On ending the call, I burst into tears.the idea that my newborn baby would need admitting to hospital. I knew from tv that severe dehydration is treated with IV fluids. How awful I felt knowing he would need this. I had failed him.

Worse still were the outstretched arms of the team on the children's ward. Theo was at the top of the list for attention and within a few minutes he was allocated a cubicle and his cot was surrounded by serious looking registrars. A kind faced dr introduced herself as dr Brockhurst..our laughter at the coincidence of names..our local GP and now her..became clear, as they were husband and wife. She was a wonderful person there, explaining things gently where she could. Within a few short hours, Theo had been taken to the treatment room. I was told not to come in as 'parents generally find the lumbar puncture very distressing'. I was numb, I know at the time I felt that I was just coping very calmly but actually I was in severe shock. I could hear his newborn shrieks and screams from the treatment room and felt my stomach twist. When he was brought back, he was asleep again but had a cannula in his hand and a tube up his nose. I felt sick, but he was started on fluids and perhaps other things but I can't recall.
I can't remember whether Colin was with me or not. I know he was at first and I know he decided to head back home to take care of Tabitha and to call his folks but when and where he left, I can't remember. I guess it must have been when Theo was taken by ambulance to Glenfield hospital, mrs dr Brockhurst came with me & Theo was given an echo by dr leanage. I expressed milk in the feeding room on the children's outpatients clinic at Glenfield, poor Theo in his little space shuttle n a trolly. My milk was poured straight into him. I remember my absolute terror at what was going on. We were sent back to the Royal, as Dr Leanage could find no structural faults with theo's heart. Nobody had actually explained why we were sent for cardiac investigation at this stage, so when I was told he didn't have a co-arctation of the aorta, I was very pleased that he wouldnt need open heart surgery. Looking back, it's as if every time I was told the good news, the bad news was far more relevant. We spent the night at the Royal, I tired to express milk every few hours. It wasn't essential as he was having something like 20ml per hour.
The next morning, we were sent back to Glenfield. He was admitted to ward 30, and many drs surrounded him again. Still no real explanation for me, but Theo had more energy, or more discomfort, I cannot tell, but he was vomiting constantly, gasping for breath and unable to lie still. I remember thinking that it was obvious he was really poorly but it wasn't that bad as he wasn't in intensive care. I know that his oxygen levels were critically low, at 60%, on maximum oxygen through the mask. I was told to carry him through for another echo and I met Dr Duke. It was early afternoon. Dr Duke echoed Theo and while he was laying on the couch, he collapsed. Distinctly, I heard 'this child needs intensive care NOW' and he leaped up, saying, 'I'll go and tell them to prepare'. A few minutes later, the cardiac liaison nurse, Sharon, appeared with a wheel chair. I couldn't understand why. She told me to get in and carry Theo. I understood later that I would have probably collapsed with shock. She pushed us through the back entrance to PICU and a nurse leaned over with outstretched arms 'let me take him, I'm Rekha. It will take about an hour'.

I had NO idea WHAT would take about an hour. The nurse who was with me was rubbish, barely said a word to me and checked her mobile phone regularly. I was shown to the 'comfy room' (which later came to be known to us as 'the bad news room') and Colin was called to inform him of events. Colin arrived and we hugged. We cried.
Presumably when the hour was up we were told we could come and see him. That was the biggest and most horrible shock. Like a waxwork baby, cold to touch, a hundred wires and blood filled tubes coming from every orifice and every blood vessel possible. We sat, we touched, bewildered. We still did not know what was wrong with our baby, but that he was critically ill and near death.