Firstly thank you for all your support since I posted yesterday. It is a real comfort x
Yesterday was a hell of a day, though nothing much to report really. Spent tuesday night in my local hospital with Owen hooked up to monitors. We had our own room with Owen in a cot and me in bed next to him so I could feed him through the night. In the morning they confirmed the royal brompton had space for us and we then blue lighted across town in an ambulance.
When We got here they repeated all the tests, echo, ECG, oxygen levels, bp, other heart traces which he's hooked up to constantly. They confirmed that his heart has a very serious and rare abnormality but we have to find out what's causing it before we can go any further. So they came and took bloods which they're going to test for a variety of things. Owen got quite distressed at this, the first syringe full had air bubbles in, the second couldn't get the vain properly and then they took it from the back of his hand dripping it straight into the 9 vials they took. I stood holding his other hand which he grasped onto my finger for dear life and tried to get him to suck my finger for comfort but he was too upset. I think seeing him so distressed was the tipping point for me and I stood and sobbed over him.
Once the floodgates were open it was hard to stop. After 3 hours of him being prodded and poked he fell asleep in my arms and I just wanted to let him sleep but the next thing was I had to take him for an xray. There was an engineer working on the machine so they had to get a portable machine set up. Got Owen all stripped and lying on the xray plate when another radiologist came in and said we could use the other machine and wanted to swap. For some reason this upset me, I think just because he'd been so peacefully sleeping and now he was being hoiked around again. I was struggling to hold it together. The radiologist was lovely but said the other machine was better so if we swapped it would reduce the chance of having to repeat it later. So we went to the other machine. But then instead of lying on a plate they put him in this seat contraption which looked like a torture device. The xray plate was in the back of the chair and he had to sit in it strapped in and with me stood behind holding his arms up. He didn't like it at all and again I stood sobbing.
Anyway, the consultant came round to discuss. Until the bloods are back, some of which may be today, some not for a couple of weeks, we won't know what, if anything can be done. For now he's been put on beta blockers and being closely monitored for 24 hours to see that he doesn't react badly and then hopefully we can go home tonight or tomorrow and come back in a couple weeks when the results are all back.
I asked for the best and worst case scenarios. The best would be that it could improve on it's own though this is unlikely for owen as it usually only happens if the mother had diabetes while pregnant and I didnt (had a gtt so know for sure I didn't). The worst would be that he's missing some enzymes which they can't replace artificially. In which case he may be looking at going on a heart transplant waiting list :cry:
So I have been in the brompton over night. Owen is in the high dependency unit so I wasn't allowed a bed next to him so have been curled up in a chair all night. As I'm bf still (And probably anyway) I didn't want to be far away from him although there is parents accommodation in the hospital.
So just waiting now to see what today brings. Hopefully some answers though im anticipating having to wait another couple of weeks yet x
