Does it ever get any easier watching your baby go in for surgery? Does the fear ever go away? Do you ever stop wondering if you are doing enough? Or the right thing? Do you feel like everyone around you thinks you should be used to it all by now, and you need to get over it? Do special needs kids get visitors in hospital like regular kids do? Or do we all just do a little dance of excitement when we see another one of the special families we have met up there as well, because they are the only friends we have left these days?
Two and a half weeks ago, Samara had a BARD feeding button surgically implanted. I spent the weeks leading up to surgery second guessing myself. Did she really need it? Was I doing enough to keep her weight and fluid intake up, while not causing aspirations to happen? Not many kids with DS end up with buttons. And the ones that do are usually those with serious heart conditions or leukaemia. Samara has neither. So what was I doing wrong? She wasn't terribly underweight, but her weight has been fluctuating between 18 and 20 kg for almost 2 years now. She will have a healthy patch and gain, then get sick and lose it again. She often ended up in HDU (High Dependency Unit) just for hydration because her aspiration causes fear, which in turn leads to refusal to drink. So a simple cold can lead to an admission for fluids. Because she is on CPAP the regular wards won't take her, although I am told the new hospital will be different in that respect.
But what if it was the wrong thing to do? Even after a year of contemplating this option, and trying to avoid it, I still have been second guessing myself.
Things went well with the procedure. She needed a night in PICU and some oxygen overnight, but that's part of her being high risk (and why every GA causes me to panic!). Then on Saturday she developed a cough. By evening she had a fever and was breathing rapidly. Thinking this was another pneumonia starting, we went off to hospital. She was admitted and put on oxygen. Her chest X-Ray was clear, so no-one knew why she had such low O2 levels, and all the other symptoms she had.
Sunday morning we set up her feed. But it was pouring out as fast as it was pumping in. She also was screaming in pain. She wouldn't let anyone near her button. It was decided to stop her feeds and just offer oral food and fluid through her drip.
Every time she ate anything with texture (all she would tolerate was custard) she would start screaming and throw it across the room after two spoons of it.
Monday morning the Respiratory team came in and discharged her. But we were still there to see the Gastro team. They came in, and said she needed to see the Surgical team because the BARD was surgically implanted, and was still a fresh wound. The Surgical team told us to go home and make an appointment with the surgeon who did the surgery, because we had it done privately and we were in a public hospital under a public dr. I refused and said that was ludicrous. She was in pain, and wasn't eating or drinking. If anything she would be back within hours due to dehydration! Also, I didn't care whether she had it done privately or public ally. I just wanted it fixed! So they rang the surgeon who ordered a contrast dye and X-ray. This showed that the interior part of the BARD had migrated. It was no longer in the stomach. Because we had only given one feed since it had happened, it was still in the tract formed by the Stoma. If we had given further feeds like they had originally suggested, we likely would have caused further damage and fed her into the cavity around her stomach, which can be fatal.
The surgeon who originally inserted the BARD was working publicly at the hospital yesterday so it was organised to operate on Tuesday. It turns out that the Ehlers Danlos she is not yet diagnosed with (but her sister has been, and I likely will be tomorrow when I see the rheumatologist) means the connective tissues in her stomach were simply not strong enough and fast enough at healing, to hold it in place. They replaced the BARD with a Mic-Key button instead, which can be replaced without a GA if it should happen again.
After the anaesthetic, she woke up in a laryngospasm which caused her oxygen levels to drop dramatically. She then panicked, which made it worse. Was pretty scary for a while there. Thankfully, after some oxygen, steroids and a few hundred rounds of "I can sing a rainbow" things settled back to normal.
We are back home today, and her feeds are going well so far. But the whole experience was horrible. And it has me second guessing myself yet again.
It really is hard work mentally being a special needs parent sometimes! The one thing I wish, was that all my friends from "before" would understand the pressure. The fear. The guilt. That goes along with this journey. I love Samara so much it hurts. Literally. It hurts to see her suffer. It hurts to see her get left out. It hurts to think of the future.
But I am conflicted. Because through it all, I can honestly say she has been the most amazing thing that has ever happened to me. Thing is the wrong word. But it covers every other experience I have ever had. I wouldn't change her for the world. But I would give my life to have her not go through the bad stuff. It just isn't fair!