PICU 2

We finally got home at about 11pm on Monday night after Cathal's surgery, after seeing him safely and comfortably settled in ICU. I think we might have phoned them to check on him before going to sleep, and again during the night, and the following morning as soon as we got up. The advantage of buying our house where we did, is that we are only 5 minutes away from the hospital. A stroke of luck. We never felt the need to book into parents accommodation, and I am so grateful that we were able to sleep in our own bed. And sleep we did, exhausted from the previous days events.

We got in to see Cathal early the next day, and he was stable. His nurse catered to everything, constantly checking his drugs, taking observations every 30 minutes. She told us that he was doing well, and she was not concerned about him. But during the day, his health started to deteriorate, slowly, so slowly we did not see it.
Paediatric Intensive Care is an intense place. It is a large open room with 6 beds, and two isolation rooms just off the main ward. Each patient has their own nurse. There is always a couple of nurses that run errands. If a nurse has a patient, they are not aloud leave until the end of their shift for infection control. There is a team of registrars, at least two that are constantly doing rounds. Then there is also the aesthetic team, renal, repository and cardiac teams to name but a few. All in all, with all the traffic, it is actually a quiet and peaceful place, even the alarms don't sound urgent. Each one is slightly different, and none of the staff jump when they go off. There is a sense of calm professionalism that surrounds each person which I found very reassuring. They also enforce "Quiet Times" between 7.30am-8.30am, 1pm-3pm and 7.30pm-8.30pm. No parents aloud in PICU during these times. We always took the opportunity to go home, sit for awhile and rest.

On Tuesday the 10th of March (Cathal's first birthday, we got back to ICU at 8.30pm, after the change of shift and hand over. We will never forget his nurse that night. She is the only person we met there who did not radiate that sense of calm. As soon as we reached his bed side after washing our hands and putting on our aprons, she told us she was very worried, he was very sick. There were several doctors close to him, discussing him. Cathal had forgotten to turn his kidneys back on after the surgery, and he was swollen from head to toe with excess fluid. All this extra fluid was then putting pressure on his fragile heart, which in turn was causing hit to work harder, which made it tense up, which in turn would cause his kidneys to shut down. A catch 22. The surgeon was phoned, the cardeologist was called, several options put forward, several drugs administered to get things going. But nothing was working. After several phone consultations with the surgeon, a plan of action was decided upon. But in the mean time, Cathal's nurse kept repeating "I'm very, very worried about him". Maybe she thought she was preparing us, but all it did was give us a sence of foreboding and extreme worry that was not in anyway helpful.

We were kicked out at 10.30pm, not knowing if we would see him alive again.

The renal team were called to put a catheter straight into his bladder. The plan was to kick start his kidneys by pumping fluid into his bladder, and then removing it the same way it went in, which should, in theory start his kidneys working again. His IV fluids were also reduced, every millilitre was counted to make sure that more fluid was coming out than going in.

In the meantime, we sat and waited in the ICU waiting room, exhausted, shattered and petrified. All I could think was that it was not possible for us to loose him, we had committed too much to Cathal, we had put everything into him, all our hopes, love and devotion, and this was not how it could end. This is the second time in his short life that I could feel him slipping away. I didn't call anyone to tell them how serious Cathal's condition was that night, how could I ask people to expect the worst when every time I thought of him leaving us, my mind would totally and completely reject the idea.

Finally, god knows at what time, we were told that it was starting to work. He was expelling more fluid than was going in. Everyone could breath. Once we were reassured by everyone that he was out of danger, we bleary made our way home for some broken sleep.

It was only when his consultant recently told us that he did not know if Cathal was going to pull through or not that night, that we really realised how close he was to dying.








I am sure your all glad that you know there is a happy ending to this story, I certainly am!

Down Syndrome Dublin; Speech and Language Survey

Would you be interested in receiving subsidised Speech Therapy for your child with ds in the Dublin region?

Please fill in this form and send it back to the address on the form to help the DS Dublin Branch establish what the demand for this service would be.

Walking Around

I'm taking a little break here to let you all know that I am going to slowly walk the Women's Mini Marathon on Monday the 1st of June. I am collecting money for Down Syndrome Dublin and Heart Children Ireland.

DS Dublin hope to employ a Speech and Language Therapist for it's members. This would mean that S&L would be available to children and teenagers at a subsidised price. A private S&L session costs about 90euro an hour, DS Dublin hope to offer the same thing at half the price.

Heart Children Ireland do brilliant work supporting children and families in hospital. They have provided a play room on one of the cardiac wards, employed supporting staff like a play therapist and paid for vital life saving equipment, to name but a few things.

I am going to split the money between the two charities, straight down the middle. If you can donate anything, please do. Just select the amount you would like to donate and click on the "Give" button on the left. You do not need to be a PayPal account holder, all major cards accepted.

Thank you!!!

Surgery

At 2pm on Monday the 9th of March, Cathal was called to surgery. We were brought down to the surgical reception, the ward nurse carrying his 2 files (he now is on his third) and Cathal’s cardiac liaison nurse following us. Then the hand over, the surgical nurse ran through the check list again with us and the ward nurse.

X-ray- check; Blood tests- check; teddy- check

When every one was satisfied that Cathal did meet all the criteria, and had passed all the tests, we were brought through to theatre. I hope you never have the misfortune to bring a child to surgery in Crumlin, but if it happens, focus on the little signs over the doors, they are fantastic. I know….what an odd thing to notice when you’re going for major heart surgery. There are a few art instillations scattered around the hospital, most people will know the fish tank, which is a submerged Dublin featuring Busaras and Croke Park. The new surgical wing has it’s own instillations. Each door has a sign with something comforting written over it. I can’t remember the exact wording of the signs, but over Recovery it has something along the lines of “In here you wake up all better”. Over one of the anaesthetic rooms: “Were you go for a big sleep”. So among the maze of white corridors there are little snippets to keep your mind off what is about to happen, they keep you some what sane.

We got to the anaesthetic room, and we both gave Cathal a big hug and kiss. He was completely unaware of what was happening….and then the mask went over his mouth, and neither of us will ever forget the look of sheer panic in his eyes. He cried for his Dad, then for his Mammy. He had only started to use Mama and Dada in context, but by God, he was using them in context that day. I will never forget that moment for as long as I live, his eyes were welling up with fear, he didn’t understand, and all we could do was hold on to his hands, helpless. All of a sudden he was asleep, one final hurried kiss and he was whisked off us, the team busy getting to work, against a clock. We were quickly ushered out, the Dad trembling, me sobbing.

K (our liaison nurse) talked to us the whole way out, and explained what the procedure would be from then to surgery. We arranged to meet in a couple of hours. 4pm, and we are waiting for K. She comes over to us, bad news, Cathal is still not in surgery. He is all ready to go, but the little boy before him had some complications, and they are just finishing up. OK….. more waiting.

I am a bit hazy on the events of the day, the times that things happened, all I know is that we met every couple of hours for up dates. In between, we wandered around the hospital, sitting in the lobby, in the canteen, in the coffee shop, outside surgery. Endless waiting.

I can’t even remember what time the surgery ended, or what time the surgeon came to speak to us. All I know is that it was about 10.30 that night that we finally got to see our little boy back in ICU, cold, puffy, but still with us.

The surgery itself was a success. They patched up his Complete AVSD using a type of nylon I believe. They also repaired his Tetralogy of Fallot as best they could, by removing all the excess muscle from the right ventricle and widening the pulmonary artery. They did have to leave in some external pacing wires, he was having some funny heart rhythms before they closed up, mostly because of the right ventricle, but more on that later.

When we got in to see him in ICU, he was on countless drugs, morphine being one, drips, respirator, 3 chest drains, catheter and an external pace maker. In a way, we were lucky that Cathal had already had an operation, only that can prepare you for how your child will look. Of course, this was worse, more of everything…..more intense.

We were told that the next 24-48 hours would be critical, in high sight, surgery was the easiest bit.