remembering the details

One of our heart buddies had an ostomy placed today. It isn’t an easy decision for any parent – bowel surgery isn’t on the list of ‘firsts’ we expect for our little ones – but when the choice is literally life or death it becomes an easier one to make. Naturally, I reached out to the little one’s mom and offered her any advice I could give.

‘When do they start feeding again?’, she asked.

I drew a blank. It has been over three months since Jackson had his ostomy placed – three months of eating and not eating, of doing well and not doing well, of heart surgeries and tracheostomies and g-tube placements. A lot has happened in the last three months to our little man and I had to admit, I honestly don’t remember.

I don’t remember how long it took before they fed him again. I vaguely remember something about Thanksgiving (our surgery was November 11th – that I remember) but I’m not 100% sure. I know they wanted bowel sounds to come in first, but how long did that take? I remember having the ostomy start to ‘put out’ and then stop and the discussion of whether or not we could be in for more surgery.

I don’t remember the details but I do remember how I felt – terrified, confused, and clearly relieved that we were in the better half of the statistics we were given regarding bowel perforations and survival, all at the same time. The feelings are hard to forget, but the details fade quickly.

So, what to do? I have decided to commit to updating the blog with more of the mundane details – the daily happenings, the simple procedures, and minor milestones. The things I thought I wouldn’t want to remember but am realizing I do. I’ll be posting more ‘day __’ posts and sharing more on Facebook, too. Hopefully it will be a window into what happens here every day – the good and the bad, a little glimpse of our daily lives. Here we go…

day 155.

The little man has been making big moves. Last week, we were showing huge improvement in the PICU – we were off of all of our sedation drips and were recovering well from our g-tube surgery – and the decision was made to move us back to the PCU. Initially, we were planning to move on Sunday but, thus is life, and we got the call at 10:00pm on Saturday night that they needed the room and we were rolling. Unfortunately, we had left that afternoon and I was home, working on school work and drinking wine in my pajamas when we were notified. Thankfully, I wasn’t too far into glass number two, so I packed up some clothes and made my way to the hospital.

Saturday was the first night we have truly spent with Jackson. Since he was born, Jackson has been mainly in ICU settings which do not have in room beds or places for us to sleep. The PCU, or progressive care unit, is set up more like a traditional hospital, with a bed, desk, and television in the room where we can stay. So, that’s where I’ve been for the past week. And, let me say – hats off to you, parents of typical newborns. Apparently they cry at night – who knew? Jackson can’t yet vocalize around his trach, but you can still very clearly hear him cough, breathe, and ‘ask’ for suction when his throat sounds coarse. Plus, his alarms seem to love going off at night. During the day, they are mainly quite, but night time seems like the right time for all of them to beep at once.

Jackson had a great visit this week with Nanny, who got to hold him for the first time! I think they were both pretty excited – Nanny to hold grandbaby number 7 and Jackson to get out of the bed – and they did great. Nanny even helped with trach care, which is a big undertaking for anyone.


Our big news this week is that we have been off our vent for a few days and are doing well! Jackson is on a heated trach collar as opposed to a ventilator during the day and at night. This machine blows warm, humidified air over Jackson’s trach to make it easier to breathe and to keep the air warm for his lungs. Today, the team decided to go back on CPAP at night due to his last echocardiogram. While his heart isn’t in any immediate danger, it did show some depressed function compared to his last echo. CPAP can help take some of the burden off of his heart when it comes to breathing and make things just a little easier. He will still, technically, be breathing on his own but with a little help from the ventilator.

Jackson is still growing everyday and working on getting closer and closer toward home. Right now, one of our biggest obstacles is sedation. While we are working on weaning him off a lot of these medications, we still have a while to go and will, most likely, go home on some form of Methadone and Ativan. The sad reality for many of these chronic kiddos is that these drugs are a necessary evil – a requirement to keep them happy and, honestly, healthy but terrible to get off of. Jackson is managing his withdrawals pretty well and we are taking small steps to being drug free!





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