Max’s Story: Part 3

  1. This is the story of Max’s recovery and discharge from hospital. To read the earlier parts of the story, you can click on Part 1 and Part 2.

Day 10 –

A 2am call from a withheld number is never going to be good, especially if it’s about one of your children. I’d just got up to express when the phone rang and I knew instantly that Max’s lung had collapsed again. He’d been put back onto CPAP as he needed more assistance with his breathing and a X-ray in the early hours revealed his right lung had gone for a second time. The doctors were scratching their heads, wondering why it had happened.

I got about an hour’s sleep and returned downstairs to be greeted with the words congenital diaphragmatic hernia. A closer look at the latest X-ray showed part of Max’s bowel and liver had made their way up into the chest cavity and on examining the X-ray from when the initial collapse had happened, the doctors realised his liver was also in his chest then.

An ultrasound confirmed there was indeed a hole in our little boy’s diaphragm. From then on the day seemed completely hectic. It was arranged for Max to be transferred to the Children’s Hospital across the city and luckily they had a baby who needed to come back to the unit we were on so the swap was arranged for that afternoon.

I packed up the stuff in our parent accommodation and Dylan arrived and very quickly after the KIDS team arrived with the ambulance which would take Max to his new hospital. They explained the whole process and talked us through what would happen during the journey. Max was given medication to keep him sedated during the journey, although the little monkey decided he wanted to be wide awake so they had to give him extra doses to get him to drift off!

We went into the ambulance – with Dylan following us in the car with all our stuff – and after a journey of about 20 minutes we arrived on the PICU.

The difference between the two wards was incredible – from a little room with three other babies in to a huge open space with 31 beds for children of all ages needing intensive care. It was like going from a little airport like East Midlands to walking into Heathrow.

That afternoon he had numerous tests and scans and then we were told he’d be likely to have his operation the next day.

Day 11 –

Overnight I’d had to go and be checked at our original hospital as I wasn’t feeling well but luckily they had let me out to come back and be with Max. I stopped that night in a small room off the ward but was told in the morning there was a room for us at Ronald McDonald House just around the corner from the hospital.

Then the day became a process of waiting. Around lunchtime they confirmed they’d be taking him down for his operation at 3pm. It was set to take three hours so Dylan and I used the time to have some rest and grab some food.

At 6pm we received a call from his nurse to say he was back and everything had gone well. It was a huge relief although we’d felt quite positive from everything they’d told us before that it would have been. Unfortunately we just missed the surgeon so we didn’t get much more information than that they’d managed to do the surgery keyhole and hadn’t had to open him up so that was excellent.

Day 12 –

A chat with the surgeon confirmed when they had pushed Max’s liver back down into his abdomen, there had been enough diaphragm to stitch up the hole rather than needing to patch it. The overall recurrence rate is 20 per cent but this is significantly reduced when they’ve been able to stitch rather than patch it, so that was obviously a huge positive.

Everything seemed to be going well through the day and they were able to reduce his oxygen and pressure on the ventilator throughout the day before finally being able to extubate him around half seven in the evening. Alexandra and Dylan were stopping in the Ronald McDonald House that night so he was able to go over and see Max while I stayed in the room with sleeping Alex. It was incredibly hard to juggle things for Dylan so I was glad he’d been able to spend that time with his son.

Day 13 onwards –

The following day, less than 48 hours post op, Max was transferred to the neonatal surgical ward to continue his care there. The main focus was on getting him feeding so that he would start putting on weight and come home. Once they were happy with how much milk he was having every day and the fact it was making its way out the other end then that was a big tick in the box.

There was also plenty of talk about a brain scan he’d had which showed a small (around 4mm) area where there was either a bleed or a lesion. It’s in a part of his brain on the left hand side which controls movement and posture in the right hand side of the body. As of yet we don’t know what effect, if any, this will have on him. It could be as he grows that other parts of the brain will take on any function lost as a result of the bleed, or conversely it could get worse. So he’ll need regular monitoring and we’re awaiting a repeat brain scan.

However it’s not something they seem overly worried about and the lack of urgency about repeating the scan is reassuring as I’m sure they’d have been sending him for tests left, right and centre if they thought it was going to be a massive problem. Really it’s just a case of waiting and seeing – and we’ll have regular contact with the team at our local hospital to ensure any developmental issues are picked up on.

When our tiny little boy was 18 days old, the doctors on the ward round decided that he was truly well and fit to go home. After an (always) agonising wait for most the day to be discharged, we were finally on the way with our precious bundle in his car seat.

And so the adventure starts…

Harriet, Alexandra and Max x

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