Diagnosis

It’s been a while since I last posted, for a couple of reasons. It has been the hardest with Oliver health wise, and I think things are starting to sink in. The dust settling. It’s kind of like the first month of Oliver’s life I had something keeping me going, like Adrenalin… That’s a thing, right? The first few days following his birth I have no idea how I didn’t pass out from exhaustion. I had just given birth, wasn’t sleeping, wasn’t eating, and I think I cried almost every minute of the day.

It did let up though, little by little each day, and by the Tuesday of his second week at TCH I felt okay enough to leave Oliver with Shane by his bedside and spend the morning with Addison getting a coffee. By Friday, his two week birthday, he was discharged and we were on our way home. I couldn’t have been more relieved, excited, grateful. As much as I will forever be grateful to TCH and all of Oliver’s doctors, surgeons, and nurses, hospitals are not nice places. And I don’t think you really understand that until you have to spend time in them, and I mean more time than visiting your Nan for a few hours when she has her hip replaced or something, which up until now, had been the extent of my experience. Everything was just harder to deal with in hospital. Oliver takes a long time to nurse, and sitting at home comfortably on the couch with my feet up, my phone in my hand and a snack and drink next to me makes it ok. Sitting in an old chair for 2hrs not able to use your phone, eat, or drink in a hospital room full of other women who look as equally exhausted and drained, is not so easy. Being in Sydney meant being alone, our friends and family were not near us and even Shane or I couldn’t sit with Oliver together because one of us needed to be with Addison.

For me, coming home meant that Oliver was fixed, healthy, ‘normal’. I had painted this picture in my mind that he was totally 100% fine now, all our troubles were behind us and he was ready to come home to the life that we had fantasized about. These past few weeks I’ve started to realise TOF absolutely isn’t as straight forward as that. Already Oliver has gone back to the TCH twice for procedures and will have to go back a third time before Christmas, and an ED visit and admittance to our local hospital after he had a very scary ‘blue spell’ (nobody warned be about that!)

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When he was about 5wks old, Oliver started having feeding troubles. It was little things at first, like he would fuss and pull off the breast more than usual, or some milk would drip from his noise while nursing. If he was having an E.B.M bottle, he would cough and splutter and he would then start breathing rattly because it had gone up his nose. It got worse over the course of a week, to the point that I dreaded feeding him because it was such an ordeal. He would choke on milk pooling in his mouth because he couldn’t swallow it. It would shoot like a water pistol from his nose, he would vomit what seemed to be way more than what he was taking in. He screamed, and screamed, and screamed. It was a nightmare, and I know absolutely that that week has been the worst week of my entire life. To see Oliver struggle so much with something as basic as eating is the thing that nightmares are made of. He was having so much trouble that at 6wks old, he had almost returned to his birthweight.

At 6wks, we headed to TCH for his clinic appointment for a follow up with his surgeon. It was great timing, it was booked for us before we left the hospital 4wks earlier and just happened to be right when we needed it. I walked into the room and the first thing I said was something’s wrong. Although nobody had warned me about possible problems, I had done some googling and was sure Oliver had a stricture. The registrar, Matthew, said that it was unlikely that he already had one so early, and they would do a G.I test (Barium Swallow – Oliver drinks a contrast liquid under an x-ray) to confirm. So we went back the next day, and sure enough, a stricture was as clear as day on the screen, even I could see it (and trying to decode x-ray images are almost as bad as ultrasounds!) It was Wednesday the 18th, and we were told the earliest they could do a dialation was the next week, Tuesday the 24th. At the time I was too taken aback to put up a fight, but how we were meant to get through the countless feeds between now and then was beyond me.

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This was Wednesday evening, and was how almost every feed would end. We’d have to lay him across our arms and hit out the mucous and milk that was pooling in his mouth and throat because he couldn’t swallow it. His little body was so exhausted.. breaks my heart looking at this and thinking back.

 

We didn’t make it very far, Thursday night Oliver was especially struggling, he hadn’t been eating and spent most of his time drifting in and out of sleep. I kept him close. I called TCH at about midnight to see what we should do. I was told that if we had any troubles before Tuesday to give them a call, so I did and I was going to beg his doctors to get him in earlier than Tuesday – how could they expect a BABY to live like this!? But the lady that I got put through to said she didn’t think she should wake up the surgeon on call, and to call the Health Direct line instead (what???) I ended up calling an ambulance because shortly after 2am, he stopped breathing. It was the scariest moment of my life, and I now know that it is called a ‘Blue Spell’ or cyanosis, and it is common in TOF babies. It’s a protective mechanism, when the larynx spasms to close off the trachea and prevent aspiration (food entering the lungs). The ambulance came really quickly and took us to our local ED. They said they couldn’t do much because it was the middle of the night and it was proving to be a little difficult, but he had his sats monitored and he was safe.

After a long wait for his pediatrician and being admitted to the ward, we got to come home with little more than ‘do what you can’. Every single staff that we encountered was lovely and went above and beyond to make sure I was okay. Especially one nurse (who I could kick myself for forgetting her name) who came and sat next to the bed with me while I held Oliver and cried. She massaged my shoulders and tried to make me laugh, so was SO kind. But nobody had a clue what to do. The ambulance guy who rode with me had to ask me to spell Tracheo-Oesophogeal Fistula so he could google it. The nurses that did hand over asked me to do it because they didn’t know how to explain what he had. They called in other nurses to listen to Oliver breathe while peering over his cot because they’d “never heard anything like it”. It made me feel so insecure about where he was. Obviously they know what they’re doing and they know exactly how to keep him safe, but I wanted more than anything to be in Sydney, where TOF is almost part of the every day for them.

There were so many times that I wanted to drive to TCH ED, but it is so impossible to organise when you have a family. And we only live 2hrs away, I can’t imagine what it would be like for people living further than that. I spent most of Sunday in tears, willing with every bone in my body for Tuesday to come. I feel silly for saying it, but I started to feel really disconnected from him. It killed me seeing how much pain he was in and the troubles he was having just from trying to eat. Nursing is supposed to be a beautiful time that both you and your baby cherish, and all I could think was how much I was hurting him. I felt like I was letting him down. I began distancing myself, getting Shane to feed him E.B.M and getting up to him in the night. The day before his dilatation, I had my own version of a ‘nurse in’. I spent the day in bed cuddling and doing skin to skin with him, looking back I think it is the best thing I did. Even though he didn’t eat much, I think we both benefited from staying close to each other and drowning out everything else that was going on. He was so settled and peaceful that day, despite the pain I can only imagine he was going through.

Oliver’s dilatation was booked for 1pm Tuesday the 24th. The poor kid had to fast from 9am (although it’s not like he was eating much anyway) and after filling in paperwork and going over the procedure, he went in at about 2.30pm. The dilatation was done by a new Dr, Dr Patel. Because it isn’t a surgery as such, Dr Langusch (surgeon who did his repair at 3days old) wouldn’t be doing it but overseeing it. Dr Patel explained that they would put Oliver to sleep, and put a small rod down his oesophagus. At the end of the rod is a small balloon, which they would inflate at the anastomosis for a period of time, a couple of minutes, then deflate it, and repeat several times. The idea is to stretch the join just enough so that it heals wider than before. Before talking to Dr Patel, I didn’t realise that Oliver would need more than one dilatation. I naively thought that one would solve all our problems (ha!), but he told me that the stricture Oliver had developed was bad enough to need fortnightly stretchings until early 2016, and to not expect any improvement in his current symptoms until well after his second dilatation.

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Oliver did really well with the procedure, and after spending a short time in recovery got moved to the oncology ward to stay overnight for observation. His first feed was 4hrs post procedure, and took it LIKE A CHAMP. I couldn’t believe it! It was like someone swapped him for another baby – he practically inhaled it and had horrible wind afterwards, but took it without any problems! No gagging, choking, coughing, nose spurts. It was like he was a ‘normal’ baby! After his first feed, he fell asleep peacefully and without tears for the first time in days – my heart was so full. He got the all clear to come home the next day and was booked in to come back on the 8th of Dec for the same thing.

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Can you tell I was happy to have my little cuddle bug home!?

 

It worked out to be great timing, I think 2wks might be his limit because on the Sunday before his second dilatation, he started showing symptoms of a stricture again. He handled the procedure just as well the second time around, and we will be going back on the 22nd for another – just in time to be home for Christmas!

Even though I know we are so lucky to have something that is manageable, it can be so draining, and I think this is the first time I’m admitting it. The first time I’m saying that it really fucking sucks sometimes. At my 6wk post-partum check up, I asked my OB why TOF was relatively unheard of, and he said ‘well, because it goes away’. Although I know he didn’t mean for it to sound as harsh as I felt it did, it still broke my heart. It is true on some level, some TOF symptoms ease as the baby grows. Some TOF kids are lucky enough to have their repair and never look back. But some have it so hard during those first few years, and can go on to have life long problems. It doesn’t just ‘go away’, and just because it might get better over time, doesn’t mean that these first few moments, years, whatever, aren’t some of the hardest things I’ve ever had to face. But Oliver is a fighter. He is so so so tough, he is so brave. So whatever gets thrown his way, he will make it. He is our gift.

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November 2, 2015
December 27, 2015

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