Isaac Wilson
TrachKid Profile
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Isaac George Wilson
On the 19th February 2003 I gave birth at home to Isaac George Wilson. He came very quickly into the world after a 2-hour labour weighing a hefty 8lb 4oz. Immediately it was clear that he had breathing difficulties. Luckily for me I wasn't wearing my glasses so I couldn't see his frightening blue colour. An ambulance was called and Isaac was whisked to neo natal intensive care where he was ventilated, as he still was unable to breath himself.
Initially the diagnosis's was that he did not have enough surfactant in his lungs, which is the "grease" that helps inflate the lungs when a baby is born, a bit like a balloon. After a few days doctors tried to take Isaac off the ventilator (extubate him) but he was still unable to breathe and went blue. It was clear there was another problem. Isaac needed specialist attention. On the 27th February Isaac was transferred to Addenbrookes Neonatal department. They again tried to take him off the ventilator and put him onto c-pap, which is a ventilator in the nostril, but he couldn't tolerate this and kept pulling the tubes out. When he was not being ventilated he was only able to breath for a couple of hours but had a very noisy breathing which I am sure the whole hospital could hear (a stridor) and kept having blue episodes where he was not getting enough oxygen to the brain. Again he was put back onto a ventilator.
He was then seen by an ENT Surgeon who diagnosed Laryngo Malacia or floppy larynx, which is a condition that causes the larynx to collapse due to the cartilage not being strong, and formed enough to keep the airway open. The first step of solving this problem was to perform a retinoepiglottopexy which is an operation to trim the excess "flaps" of skin that were flopping over the windpipe. On the 5th March 2003 this was carried out and we were transferred back to our local hospital to recover.
Back in Bedford Isaac failed to thrive. He lost weight and his saturations (which is the amount of oxygen being absorbed by the blood) were dropping as low as 38%. His stridor was very pronounced and we never had to ask where Isaac had been moved too as you could hear him as soon as you came onto the ward!!! The joke was that Isaac was in da house!!!
It became evident that the "trimming" had not been a success and on the 31st March 2003 Isaac was transferred back to Addenbrookes. I knew in my heart that they were going to say he needed a tracheostomy. I was so frightened. I had no information and envisaged this huge pipe that people would point at and I would be embarrassed about my own child. I have never been so scared, ever. I wanted to arm myself with as much information as possible about his condition and find out other peoples stories. So I trawled the Internet for about 4 hours and eventually I came across Aaron's page. I went to the page where parents put their stories on and sat in tears at the bravery of some people. I felt so uneducated as I never knew what people went through. I came across a lady who had written a story about his son that had the same condition as Isaac at the same level of severity. She had written,
"He had three upper airway issues that took control of his life and wouldn't let him grow physically or developmentally any longer. He was three months old and laid flat on his back using every effort to breath. After his trach, I was so scared to see him. We visited the PICU, my husband and I hand in hand expecting the worse only to find a beautifully pink baby breathing on his own with only a humidifier collar on. He looked at such peace and it was then we knew the right decision had been made. Our beautiful baby now had a chance to breath normally. It was inevitable that Jake receive a trach. When Jake was just 33 days old, a tracheostomy tube was placed. We were devastated. However, in time we knew we had made the right decision -- Jake was finally able to breathe comfortably."
My fear was gone and I knew that this was what Isaac needed.
Sure enough, the following day we were asked to sign a consent form for the surgeon to perform a tracheostomy. After the operation I understood what a dad had written,
"For the first time in her short little life, she didn't look panicked."
Isaacs's eyes said it all and I knew it was right for him. Being Trached.
We were told that we had a lot to learn and I was unsure of how I would cope. Above all I was frightened of how I would be treated by strangers when they saw my beautiful baby was disabled. The staff at PICU in Addenbrookes was great and their support and training were excellent. What they didn't prepare me for was being transferred back to a normal children's ward in Bedford. I cried when we first went back and felt that my baby had been abandoned and the care was rubbish. I had a talk with the sister on the ward who told me that this is very normal, coming form intensive one-to-one care to a normal ward would take some getting used to.
I had a very fraught and emotional week. I saw so many people who told me different things but didn't seem to be in control. One day I lost the plot, screamed at all the staff and stormed out. Why was this happening, didn't anyone know what they were doing in this place. I realized that I, me, the one that had to hold it all to gather was losing it. No one asks you how you actually are. You have a new label "Isaacs Mum". I was angry that no one should be looking out for me. Looking back I realize even from day one when I was given a hard stool to sit on after I had given birth, they do not think how you are feeling!!!! Take matters in to your own hands. I have suffered from depression before so I knew I was bordering on sliding down the slippery pole. I went to see my GP who was very supportive throughout the whole traumatic time and he prescribed me some happy pills. I stopped expressing my milk and I stood back up brushed myself off and took the reins again. I was in control. I decided to take the bull by the horns and tackle it head on.
From that day on I haven't looked back. I was assigned a key worker and with her help and support I can stand up and be counted. Initially we brought Isaac out for small trips home and these got longer and longer. We had him over night, which was a nightmare, and we didn't get a lot of sleep. Then the times got longer 2,3,4 days. We applied for night care where a nurse or carer comes into our house and sits up with Isaac all night so we can get some sleep. We moved his cot downstairs so we are not disturbed.
Life is not as it should be having a small child with a trach. Your life has to change, as does your lifestyle. A stroll into the garden requires an equipment move and by the time we get out there my 2 year old has changed his mind and wants to go back in. I don't go out very much as it is a house moving experience loading the car up to pop to Tescos for example is a logistical nightmare. My biggest achievement was being awarded a disabled badge after being told not to even bother, as I wouldn't be considered. Nothing you do is easy by any means but you can do it if you put your mind to it, be a pain in the bum and push, push push.
I have learned a lot over the last 6 months. I say what I feel. I have so many "experts" traipsing into my house all wanting my time to assess Isaac. At first I was worried that he would suffer but it was me that was suffering as I broke my neck to see all these people and make cups of tea. I have stopped offering tea now, and I don't care what they think of me because I don't offer refreshments. If the professionals want to come and it is not convenient to me, I say no. If I am unhappy with something or someone I say so. They probably think I am a real old boot but I don't care anymore what they think I have to do the best for my kids and me.
Update, September 2003: Isaac has now been home for 12 weeks. We have had loads of cold, and so far one infection. He is learning to grasp and trying to stay in the sitting position, but to no avail. Isaac has been given the label of being profoundly deaf but the ENT guy said he has glue ear. We are going to have grommets fitted on the 5th October, they will give him a scope to see what's going on down there as he is under but I don't hold much hope.
We plod along, fighting the daily battles, I didn't know there were so many monkeys and so few intelligent able people out there!!!! Words fail me.
Never mind life's never dull……………………
Update, November 2003: We went to Addenbrookes where they put in the grommets and did a scope, MRI and brain stem for the hearing. Bad news is that he is deaf and is now on the cochlear program, providing of course he has a cochlear. Good news is that his trachy should come out this time next year, all look healthy, epiglottis and vocal chords, he just needs to grow another mm in his windpipe for it to be safe so we are watching this space.
Had some good feed back from guys in the UK. There seems be a need for a support group here in the UK. I would love to hear from anyone interested in putting one together or being involved. Please e mail me.
Update, November 2004: Hi, here we are a year on. I never seem to get the time to update Zac's progress. We are doing well. Had a fantastic summer with Zac learning to crawl and pulling himself into everything and not one chest infection in sight. Then the winter arrives and bang you remember all the bad bits about a trachy!!!! Zak has recently been into hospital nad had his cochlear implant done. It was discovered that he had a mondini deformity which is a deformity of the cochlears. He is profoundly deaf so hopefully the implant will help him have some hearing. However we went for the op and as for Zak it is never easy. He had a massive CSF leak during the op which then stopped. Surgeons thinking that was that sent us home and unfortunatley it started leaking again leaving him very unwell. So back we went the following week and had the operation done again. This time it was successful. No leakage. We have now 2 weeks later had a follow up and all is well. We look forward to being switched on 8th Nov. Something good is finally happening. Bad news is that the trachy isnt ready to come out this year so our beach holiday isnt forthcoming yet. Never mind.
Lucy
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