Kaycee had arrived safely and was being sorted out so we couldn’t go in until she was done. We had loads of nurses keep updating us on what was happening etc. We had to sit in the little parents room watching and listening out for little hints that she was ok. We waited in that room for 4 hours before we could see her. It felt like a lifetime.
Finally a doctor came out and spoke to us. He asked us her background and whats been happening over the past few weeks / months, so we told him everything. Previous to Kaycee getting unwell she had been for an appointment at Royal Manchester Children’s Hospital for her heart and was diagnosed with Moderate to Severe Pulmonary Hypertension. At the time we didn’t think anything into that we just thought it was because she was early etc. She got given medicine and we thought that would be ok it would sort itself out. What we hadn’t realised is that this could be the reason why Kaycee has just had this bad episode. The doctor took on board what we said and then disappeared.
We didn’t see anyone again for what felt like ages. Then another doctor came out. She explained that she had this PH and that this is why she has had acute respiratory failure resulting in her heart stopping. She explained that Kaycee was in a very bad place, maximum support and that the next 24-48 hours were important. She explained that she didn’t think that Kaycee would survive as in babies like her it had never been seen that having such a significant episode they could come back after it. We were shattered, heartbroken and at the time so naïve still to the situation around us. Sadly enough we just were grateful that we were out of Oldham. Obviously we understood that Kaycee was not well at all, because only two weeks ago we were planning for her discharge home, now it felt like we were planning for her funeral. It was terrible, I just couldn’t stop crying.
Eventually we were allowed to see her. I remember walking in and everyone staring, it took me right back to when she was first born. I felt warm and dizzy. Michael grabbed my hand and we walked over to Kaycee. Looking at her was painful because she really did look mega poorly. Not the cute little girl I had seen just 24 hours ago. She was shaking, because she was placed on a special ventilator the Oscillator to shake the Co2 out of her body as it was at dangerous levels. My word I cannot explain how bad it was it was just bad. I don’t wish this situation on my worst enemy, not in a million years.
That night we didn’t get much sleep we just went over and over how bad things were and what ifs and how it had got to this point. I just felt like 5 months had been wiped from under us and here Kaycee was again, struggling to exist. It was a bad night.
6am came and the phone rings, we bolted out of bed and ran up the stairs. Kaycee had needed cardiac massage again. They had tried to wean her sedation and down, and Kaycee self-exuberated herself (pulled her breathing tube out). It was another horrible moment, watching her heart rate disappear, oxygen saturations go down. They managed to sort her out stabilise her. We again got reminded that she was in a very very bad place.
A few days passed and Kaycee seemed to look like she was improving. We were then summoned to a room to be spoken to. I felt like I was a kid at school again getting in trouble of the head teacher. I remember sitting in the room facing the doctor with my head down, willing her to stop giving me negative information. This was one of many talks about Kaycee not going to survive and advising us that maybe turning the machines off would be for the better. Of course we chose to ignore this and said we wished to carry on her care and do everything possible to help her. And so the doctor went away and respected our wishes.
For days we beat ourselves up about it, often sitting in our rooms and crying. Kaycee had arrived on the Wednesday and the following Tuesday the doctors had grabbed us again and asked us to gather the family up to see her because she didn’t feel she would make it through the night. So this we did, everyone came. Everyones eyes red and swollen saying their “byes” to Kaycee. At this point I had it in my head that my girl wasn’t going to leave me and I kept telling the family everything will be ok, she will be ok. Everyone thought that I was in denial and that I was setting myself up for a big fall. But in my heart I knew my baby wasn’t ready to leave me.
Ten long days passed and no improvement at all. Kaycee was given a massive dose of steroids as this was the last resort. If this didn’t work then nothing else would and we would have to sit down with the doctors again and discuss things. Miraculously they worked and things started improving. Day 12 Kaycee came off the vent and went back on the Bipap. It was so nice to see my baby girl stare back at me. I don’t think I left her for the rest of that day.
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