|
Tyson 
Welcome to Tyson's Web Page. This site has been provided to tell everyone about our very special little man.
TYSON'S MEDICAL CONDITIONS INCLUDE:
Tyson was a Mono Amniotic / Mono Chorionic twin born at 30 weeks because of cord entanglement. He has Severe Tracheo/Broncho Malacia, Hyper IGM Immune Disorder, Optic nerve hypoplasia, NF1 (Neurofibromatosis 1)AND gynecomastia
While you are here, PLEASE take a minute and sign the Guestbook we love getting messages!
Journal
Sunday January 4th 2009 I guess since years have passed and all legals have been settled, it is now Ok to post the story about what happened to my wee Max. I apologise if this is not well written and for any grammatical errors – it is still hard to relive what happened that night without ending up a weeping heap!
As I said in the journal entry Max and Tyson were both out of ICU and in a ward (still receiving ICU Nursing – so still had 1 on 1 nursing ie: 2 nurses in their room with them 24/7). They went outside for the very first time on their 1st Birthday – and from there on continued to do very very well and exceed all of the medical expectations.
They had been on a methadone program which had them weaned them off all the morphine, medazalan and other heavy duty drugs, they were breathing room air during their awake times but had their trach’s connected to vents while they were sleeping to help them rest and try and combat the de-satting episodes. (They had sleep apnoea which essentially means they just forgot to breathe while they slept).
They still had IV lines in, were constantly monitored and had gastrostomies (or gastric pegs) in place for feeding BUT it was finally beginning to look like the boys might one day come home.
THEN in February only a little over a month after their birthday, their folks had the chance to go out of state for a weekend away. I encouraged them to go, the medical team and I assured them that the boys were doing well and I promised I would be there at the hospital with the boys each night as soon as I finished work. They deserved a break it had been a LONG 13 months! So off they went! (I will never ever get over encouraging them to go – although none of the events which happened could have been foreseen it is still a burden I will always carry).
The next night at around 10pm when I was just heading off to bed, I got a call from the hospital saying that Max had cardiac arrested !!! They told me he had been resuscitated and was alive but was listed as critical and was being moved back to ICU as we spoke. I asked then what had happened but got a very non committal response and anyways, at this point I was way more concerned about contacting his folks, getting them on their way home and getting into the hospital to be with him!
I called his Mum – Oh my goodness that was THE most awful phone call to make – there she was 2000kms away her little man was critical, it was late at night and she would not be able to be back in Brisbane until the mid-morning the next day at the very earliest. My heart broke as I heard the pain in her voice but all I could do was promise to keep her updated via the mobile ph until they could get back.
I drove at warp speed to get to the hospital – all the while hoping that the police would see me speeding and escort me in but of course there wasn’t one to be seen the entire ˝ hour trip! I also discovered that I must have changed out of my nightclothes while I was driving – I was dressed when I got to the hospital and my nightshirt was thrown on the back seat – I still do not know how I did this and have no memory of it at all – I just thank god that I made it to the hospital without injuring myself or anyone else along the way.
I arrived at the word and tried to speak to the nursing staff that all seemed kind of vague when I asked how this happened since he was doing so well – again in wanting to be with Max I dismissed this lack of response and was escorted to the ICU.
I was taken in to find Max all hooked up – 100 percent ventilation support 100 percent oxygen and all the IV’s, arterial lines etc…. back in situ – he looked dreadful and was non-responsive to my touch or voice – all he would do was occasionally arch his back and stiffen up (I found out later that this is called ‘posturing’ and is common in people with brain injury).
By now it was about 3am and I just sat with Max, prayed and asked any staff member who came near what had happened?? No one seemed able to answer my questions and one Nurse was even openly hostile and asked me how I “dared to question his care” I hadn’t!!! Anyway, as a result of this interaction was left even more confused.
Finally I was called into a side room to speak with a Doctor I had never met before (this was kind of unusual in itself – we thought we had met every Dr in the place!)
This guy explained that Max had de-satted, been unable to come back up had ultimately cardiac arrested and was defibrillated and resuscitated using intra osseous adrenalin. He further explained that he ‘thinks’ Max had been ‘down’ for sometime so that there was a real risk that a severe brain injury had occurred. However, he would not be able to be tested for this for another few days – just getting him though the night was the priority for now. I have never been huge on the power of prayer but I prayed SO HARD all night that if he had to die that he would not pass over until he could be held alive in the arms of his folks!!! My prayers were answered and Max’s parents arrived about 11:00 am the next day. After spending time with Max, they joined me in asking how and why this had happened?
Over the next week we spent time being at Max’s bedside and being with Tyson. Tyson was fretting for his twin and knew something bad was going on he was certainly not his usual smiling self and needed lots of love and cuddles from all of us.
Our questions were still not being addressed even at this stage but we had been told that an ‘investigation into the incident’ was underway.
These boys were mono amniotic / mono chorionic twins (only occurs in <1f identical twinning) so their bond was undeniable – and something only twins could really understand.
Eventually it seemed out questions were going to be answered. We were called to the office of the General Manager of the RCH.
We walked in to find a team of medicos and legal people around a boardroom table. I remember thinking – “here we go what’s going on now?” What heard left all of us absolutely gobsmacked!! The GM greeted us, shook our hands and then said:
“The hospital regrets what has happened and cannot apologise enough but want you to know that we take full responsibility for what has happened to Max”
We (Max’s Mum, Dad, and I ) all broke down at this point and were too numb to even be angry (THAT came soon after) all we wanted RIGHT THEN was answers.
What had happened?
The report from the hospital shows that the reason Max had cardiac arrested was because his Nurse was too busy discussing her weekend plans with Tyson’s nurse and had plugged the vent into Max’s trach but had forgotton to switch it on!!!!!! As a result Max was breathing recirculated air until the O2 levels dropped (slowly) to a point where life could no longer be sustained, his wee heart which had fought so hard gave up and stopped beating.
You are probably wondering about his alarms – he was fully monitored after all – weren’t they going off? YES they were and as I had seen happened in NICU the Nurse just reached out and hit the reset button to quieten them. It was only after 15 minutes that she thought to switch the room light on and actually check why they kept going off – at this point Max was blue, his heart had stopped and for all intents and purposes he was dead. He had been in cardiac arrest for somewhere between 12 and 24 minutes before they got his heart beating again.
Both Nurses were stood down pending the result of the investigation. One of them (Tyson’s Nurse) did what I think was the right thing – she handed in her Nursing registration and left not only the employ of the hospital but nursing itself! The other fought to regain her job and after ‘proving her competency as a Nurse’ was given her job back!! Max’s Mum and I happened across her one day while coming out from visiting Tyson, she saw us stop and stare at her dumbfounded then came up and asked if we needed a hand – she did not even recognise us!!!! As a tirade burst forth from both of us, her look froze and she realised who we were – she was then rushed off by another Nurse and put behind a locked door – away from us. Apparently she had already handed in her resignation from the hospital and was meant to be leaving in a few weeks but after coming across us she left that afternoon. I know she is still nursing but I hope so hard that she is not near any child or person who has high dependency needs.
Max’s Fight
After a few weeks, and some scans etc.. we were told that Max’s injury was so severe that he would never regain consciousness. He was totally vegetative, somehow his brain was maintaining his blood pressure etc.. but that was all – It was heartbreaking!
Max spent 5 more months in Intensive Care - It seemed that the tracheostomy that had been put in for a whole other set of reasons was now keeping him alive. We had many many meetings with Doctors and chaplains etc.. and after a LOT of legal hiccups were allowed to have his trach removed. We did not know whether he would breathe on his own after decannulation, or if he would fight at all or even how long he would stay with us but the Doctors were sure that he would pass quickly and relatively peacefully once it was removed. As a result, we decided to let Max decide whether he wanted to struggle on or let go of the fight and go to live peacefully in heaven.
The trach was removed at 1:00pm on Tuesday July 22nd 2003, Max lost his battle with life at around 2:00pm and moved on to be a beautiful angel free of the pain and bounds of his earthly body. He was 18 months old and died in the arms of his Mum and Dad with me stroking his head and chatting to him too. He was so surrounded by love!!
We moved to a special quiet room, where there was a bed, comfy chairs, tea and coffee making facilities etc… and spent the next 3 hours holding Max and each other, rocking him in ours arms, talking to him and doing lots of weeping. This time allowed us to slowly and gently realise and come to grips with the fact that he really was gone.
I had the honour of watching Max and Tyson being born and then the honour of being with Max when he died. Having experienced this, something no grandparent or parent should ever have to go though, my life was forever changed; it has left me with a new and improved attitude about what is and is not important in life.
As I said in the earlier journal entry, I think Max was already an angel when he was born - sent to touch the hearts of so many and to affect the life of everyone he ever met - each in a way specific to them. It is such an honour to have had him sent to me as a grandchild even if for such a little while.
Maxine xx
I have found some of Max and Tysons photos - Click the link - More to come!!:
Max and Tyson
Please help another wee preemie in her fight and send prayers up for Kayleigh Freeman. Click on the link below to read her story and get to know her and her amazing family!!
Read Journal History
Hospital Information: Royal Children's Hospital
Herston Road
Brisbane, Qld, Australia 4001
|
|
