OUR JOURNEYS

Memorial story

Thomas McGlynn

by his mother

Thomas Michael Goldman McGlynn 23.02.2003 – 10.09.2008

Thomas was born with a rare congenital heart defect, aortic to left ventricle tunnel, which was corrected by surgery at just 15 days of age and then repaired again at 15 months at Westmead’s Children’s Hospital in Sydney, Australia.

At four years of age Thomas was diagnosed with high functioning autism which helped explain some of his little quirks, especially his diet of only lamb cutlets and Sunkist cordial. The cooking of the lamb cutlets, which he called choppies, became an art of perfection with only me allowed to cook them, always in the same pan, and place them on his same two Shrek plates.

Thomas loved to be on his own in his room playing his Playstation and only wanting you to go in if he was stuck and needed help with a game. He was such a regular at EB Games that he got a discount on all the games he bought. He also loved the computer; so much so, that I had to buy a new one just so I could use it. Thomas may have been a quiet computer nerd but when the Robbie Williams DVD was on he became a disco dancer and he even went to a Robbie Williams concert and loved it all. Of course he did like the Wiggles too, to the extent that he wore out quite a few DVDs…

Sunday the 19th of April, 2008, I was watching TV in the lounge and Thomas was in his room and his brother was asleep. Thomas came out huffing and puffing saying, mum, come watch me on the computer. I said hold on, are you ok? He was short of breath and said yes, so I went into his room and sat on his bed and watched him play his computer for about 20 minutes and was concerned how short of breath he was. I felt his heart and it was racing, so I took him to Cessnock Hospital. There he had an ECG and sat brilliantly for it, which was a major shock for me, as he didn’t like doctors or anyone touching him. You were allowed to listen to his heart and that was it, but the nurses weren’t allowed to do this only the doctor. His heart was at 140 bpm, and as everything else was ok with the ECG he was sent home with a follow-up with his cardiologist on the next Tuesday. By that time his heart was back to 101 bpm.

But following this he didn’t want to walk anywhere, always asking to be carried (and we did carry him everywhere). We thought it was behavioural due to his autism, but he still looked good and still was our Thomas…just not the wild Thomas running around the house pretending to be the ghost from Scooby Doo scaring his younger brother. He had slowed down and started complaining of having a sore tummy. I had him at the doctors where they checked him over and couldn’t find anything wrong, but they told him he has to eat something other than lamb cutlets. This made sense, as this was thought to be hunger pains he was feeling. He only ate six to nine lamb cutlets a day and I would be hungry if that’s all I had.

At the end of term two this year (1st July), he was tired a lot and not feeling well. I took him to the doctors and the doctor said he has to go to Maitland Hospital as Cessnock does not take kids and his saturation levels were only at 85%. When we got there he was checked over and was told that he is not breathing at 85% because he is not blue, and the machine must be broken. They did ECGs, X Rays, Bloods … they were brilliant and he was sent home for a follow-up the next day. We were then told that a virus was shown in his bloods and sent home again. Two days later he was back to normal, so to speak, but still without the excess energy. Again due to his autism I thought that this was normal.

He would wake up at about 8 am and be awake all day; playing his games and watching TV. He would go to bed about 8 pm at night. Some days he would want to walk whilst I did the groceries and other days he wanted to be in the trolley, all seemed normal for him.

Second week of term three, he started four days a week at his satellite autistic school. Thursdays were excursion days and the first week was a four km walk. I didn’t send him as I knew he wouldn’t make it, as he would be too tired. The next Thursday the 31st of July 2008, was at a nature reserve in Newcastle and he had been really good before then, so I sent him to school. I received a phone call at 12:30 pm that day to say that Thomas had lost control of his bodily functions and was a shade of blue. I jumped in the car and drove the 40 minutes to get him and took him to John Hunter Hospital in Newcastle which was only five minutes from where they were.

I was told a lot of things could have caused this; stroke, seizure, etc. He was breathing at 70% and admitted to hospital. He refused to put on an oxygen mask, so we just had to hold it near him for blow-over. At night we could get it closer and his saturation levels would go to 94%, but during the day without the oxygen he sat at 85%. We were told that this is probably his normal saturations. He had a blood test which showed he has been blue for about 12 months. This then made sense of Thomas always complaining of feeling cold, as he had poor circulation. He was always wearing layers of clothes and at home always sitting next to the heater.

ICU doctors came to have a look at him in case he needed to go to ICU, so they could see what he was like. We spent nine days in hospital. Due to his behavioral/autism Thomas was given general anesthesia to have an echo (as he always mucked up for this at his cardiologist), which came back that it was not anything to do with his previous heart condition. Instead they told us that he had pulmonary hypertension, which to me was a relief, as I didn’t know what PH was. Then on the Thursday, they again gave him general anesthesia and he had a MRI. On his discharge papers it said “MRI grossly abnormal.”

Whilst in hospital for this stay he would chant “choppies at home” to anyone that walked into his room. We were gate-passed a couple of times just so I could feed him and I bought him a Nintendo DS just to help entertain him as he was getting sick of watching DVDs and missed his Playstation. On the Friday, we came home and he was started on Sildenfil, which we put in his Sunkist as he wouldn’t take anything else orally.

We now noticed that he was constant shade of blue, with his finger and toenails always remaining blue.

He had a week at home before going back to his cardiologist for a check-up. He just played his Playstation and ate his choppies. I took him to school one day so he could get his school pictures taken. During this week at home I googled PH so much. What I found out made me so scared but I had hopes of his medication working.

On Monday the 18th of August, he had a follow-up with his cardiologist, who didn’t like the look of him and said he needs to be in hospital. We took him straight back to John Hunter Hospital where he was admitted for a further five days. Thank god for the Nintendo DS, as this helped entertain him and he knew he was only allowed his DS in hospital so he wasn’t that worried that he was back in hospital. They stopped the Sildenfil and he had a canula put in against his wishes, and was getting Lasix by IV. He was started on Bosentan and Spirolacten orally, which was a major drama, as I could hide the Sildenfil in his Sunkist, and syringing medications into him was enough to turn him blue.

He complained a lot of having a sore tummy. The doctors said that his heart was in right heart failure so his liver was backing up. After only a couple of days of IV Lasix, his liver became soft again and the fluid had gone. He also came home on one and a half litres of oxygen. He impressed me so much how he put up with having the prongs taped to his little face, with the actual prongs cut off so nothing went up his nose as this bothered him too much.

So we were home on the Friday, fighting with him every morning to syringe his three meds into him. He would hold the medicine in his mouth and nothing we did could make him swallow it. I would hold him back for gravity, he would gag and then sit him up and just spit it out. After two days he complained again of a sore tummy. Now that I knew what to look for I felt his belly and felt his liver was again enlarged, so I decided to put his Lasix in a can of Sunkist as it could easily be disguised. I then only had to fight him to take two medications and two days later he didn’t complain of his belly hurting. We also came home from hospital with a wheelchair and he loved being pushed around the game shop in this.

The following Friday he started to go off his lamb cutlets refusing to eat or just chewing on the bone. He spent most of the next three days in bed, not even eating or drinking. He just complained of being tired and having a sore belly.

When I got home from work on that Monday the first of September 2008, I sat him up to fix up the prongs on his face. He was puffing so I took him straight to Cessnock Hospital where his feet were quite blue. They upped his oxygen to four litres and got him stable. We were then transported by ambulance to John Hunter Hospital.

We spent many hours, as we did each time in the emergency department, getting all the ECGs, x-rays, etc. done. They tried to put a canula in and he fought it as usual but this time his saturation levels dropped to 30. The doctor told us that he would go into cardiac arrest if they persisted with this. Again ICU came down and said that he possibly won’t make it through the night and we had to make a decision as to what we wanted them to do if this happened. This was hard; it took a couple of hours to get his saturation levels back up to between 70 – 80% and we were moved to the ward at midnight. We didn’t get much sleep, in the morning we were moved to a private room and had a meeting with the doctors to discuss Thomas on the Tuesday afternoon.

In this meeting we were again asked what we wanted if he was to go into heart failure and we said do anything you can to save our boy. They also said they would put a percutaneous endoscopic gastrostomy (PEG) in his belly, so they could give him his full medications and feed him, as they were very aware of what Thomas was like with taking his meds and his poor diet. We were very happy and relieved to think this PEG was the answer. They also put him on a WHO machine (warm humidified oxygen) and he was comfortable on four litres with his saturation levels at 85%. He even let the prongs into his nose. We were also told that we could lose him tomorrow, next week or he could last two years. They wanted him to get put under a general anesthetic to get a feeding tube put in so that he could get his medications before he had the PEG put in. This was going to be scheduled for that afternoon, but that anesthesiologist said he wouldn’t risk putting him under twice in one week and that Friday’s surgery is more important than a feed tube.

Until the PEG went in, the staff were syringing his drugs into him with Thomas telling them to “get off me”, and to “go, get out of my room.” He always used his words well and always said “No thanks” to his medicines.

Friday the fifth of September, he had his operation to have the PEG put in, and came through beautifully. He was back on the ward by the afternoon. We were then told they hadn’t expected him to come back to the ward as they had actually booked him into ICU, so everyone, staff included, were very surprised his heart tolerated this. I was over the moon and so excited.

There was a slight hiccup in recovery. The nurse pulled out his canula but the surgeon said in Thomas’s circumstances he would allow them to use the PEG ASAP for his medications as again they couldn’t risk putting it back in.

On the Sunday they started him on Gastrolight. Monday they started him on feeds, vitamins and minerals and I honestly thought we had won. He was tired all day but saturation levels were stable.

Throughout Tuesday he slept all day, waking at times saying “Mum, I am tired.” I would tell him to have a little sleep and just lie down and he would lie back down and go to sleep. His saturation levels were dropping and hovered between 60 -65%. A doctor came that evening and we did a blow over of 10 litres. I asked Thomas if he wanted to go home and he just told me “I want to stay here.” He held my arm with his two hands while I tried to get more oxygen into him and he fell asleep. I got up and packed up his games, which this time he wasn’t interested in. I just didn’t want his stuff to get lost when we went to ICU, I had a feeling something was not right. I hardly slept that night.

At 6 am on Wednesday morning (10th September 2008) , Thomas woke up and woke me saying he needed to go to the toilet. I did my usual juggling of leads and machines and picked him up to stand him while I moved the two machines (feed and oxygen machines) and he spasmed on me. I was later told this was when he went hypoxic. I buzzed like crazy, but by the time the nurses came he was talking again and I felt I had imagined it. They got a doctor and again ICU came down to visit. His saturation levels had dropped and they put him on eight litres through the WHO machine and blow-over of 15 litres, but nothing was really sustaining him. I told the nurse with me that this is what had probably happened to him on his excursion as he again had lost his bodily functions. I sat and cried telling the nurse, this is the end, I know they can’t help him. I rang my husband and said things aren’t good. My husband and my parents came straight down. His cardiologist came and did an echo and was very quiet and said he may have an infection. He then had an ECG. So then the room was full of his surgeon and nurses checking his PEG site and other doctors who were going to put a canula in so he could get IV antibiotics.

He was fussing a lot, wanting to go to the toilet. We had put a nappy on him and told him to use that. He wanted to sit in the lounge with grandma. He was on my lap and the doctor said put him up on the pillow. He was talking a lot, telling the doctors he didn’t want the oxygen mask on, saying clearly “I DON”T WANT IT!” and telling us “ I have to huff and puff.” I put him up on the pillow, my husband had hold of his hand. His eyes rolled back and the doctor yelled THOMAS and he lifted his head and then passed away. They worked on him for 40 minutes; we were in the room whilst CPR was being done. Then we were taken to another room while two teams from ICU came down to work on him.

At 10:49 am he was pronounced dead.

We went back into his room and spent some time with him.

He passed away the day before his brother’s third birthday.

The Wednesday a week before he passed we were told by the social worker that the Starlight Foundation was looking for kids to grant wishes to. Thomas was eligible, so she faxed off the application form. When the nurses came to get him from recovery to take him back to the ward, we were told that they had accepted his application for a wish to be granted and that we should start thinking of a wish. Thomas didn’t understand; as far as he knew he had every Playstation game there was, except for Madagascar 2 which wasn’t due to be released until the end of November (I had looked into it). When I saw the social worker on Saturday, I said he is going to get a wish granted and she said he had been accepted on the Thursday. I took that as they didn’t think he was going to make it through surgery on Friday, and since meeting up again with the staff I realize how very lucky we were to get back from such a simple procedure even if it was only for another five days.

The staff at John Hunter Children’s Hospital Ward H1 and J1 (where he spent his second quick visit), Dr. Garry Warner, Dr. Richard Hawker, Dr. Richard Chard, Dr. Peter Ebeling and Dr. Isobel Lang, we thank you immensely for looking after Thomas and giving him the best possible chance at life. There are so many staff at John Hunter Hospital that I would like to name, but for fear of omitting someone, I have chosen not to personally name names, so all doctors, surgeons and surgical team, ICU, nurses, teachers, everyone who has seen and spoken to us, we thank you sincerely.

Our stay at John Hunter will be forever a memorable one. Thank you.

 

FacebookGoogle +TwitterLinkedInPinterestInstagramYouTubeBloggerFeedsPHAware Download our App

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

801 Roeder Road, Ste. 1000, Silver Spring, MD 20910   Patient-to-Patient Support Line: 1-800-748-7274
Webmaster@PHAssociation.org
    Privacy Policy   Virtual Tour of Website    Provide Feedback & Report Bugs

Designed by Matrix Group International, Inc.® | © 2014 Pulmonary Hypertension Association. All Rights Reserved.

NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.