So after my last post things progressed very quickly in the wrong direction. As Monday began instead of starting to breathe slower, Edith began to breath much faster and looked beyond exhausted. That morning the doctors came to us on their ward rounds and it just so happened that the doctor on that day was Edith’s regular paediatrician. They examined Edith and they were very concerned. Edith was working extremely hard to breathe even with the assistance of the opti-flow, which was up to its maximum output. Her temperature was soaring and this was also adding to her breathing so quickly. They told us that as Edith was working so hard just to breathe they were worried, because of her condition, that she would become exhausted. They quickly decided that the PICU (paediatric intensive care) doctors needed to look her over and a decision would then be made whether Edith needed to be transferred from HDU (high dependnacy unit) to intensive care. Initially though they wanted to give Edith a chance to respond to the antibiotics and for her temperature to settle. The doctor explained to us that Edith may need a flow that involved a lot more pressure than the units in HDU were capable of. As the conversation continued it soon turned in a direction that every parent dreads. The doctor continued to say that if the high flow didn’t work then the next step would be to intubate Edith and have a machine breathe for her. This shocked us beyond belief that Edith was this poorly, until this point no-one had really indicated the seriousness of the situation. The doctor asked if we had ever discussed with anyone what our wishes would be if this had to happen. We didn’t really understand what she was asking, either that or our heads wouldn’t let us believe it!! If what happened? Surely she couldn’t mean that? No one had ever said anything like this to us before and we were floored by these questions. After a short while of talking with the doctor and trying to get our heads around the situation, she left. I immediately fell apart. The critical care nurse noticed my sobs and returned. We told her that it was a lot to take on board and we were totally shocked that Edith had got to this stage so quickly. I couldn’t breathe. She re-assured us that we still had options but we have to be realistic, we couldn’t quite believe what we were hearing and writing it down actually makes me feel sick.
Thankfully, our little super trooper was having absolutely none of it!! As the day progressed, Edith began to make very small improvements. When the PICU doctor arrived later that day he said that Edith could avoid intensive care for the time being, but if her breathing got worse again then we would need to re-assess. This was sweet music to our ears, although Edith had a long road to recovery ahead, it was nevertheless a road out the door, home, with us.
Monday night was long, Edith’s temperature continued to be out of control and at its highest was 39.8. She was very restless because of it and this was making her still breathe fast. The room we were in was fairly small and hot and I was convinced this wasn’t helping, still, we were glad we had a room. Tuesday morning came and Edith began to cool down, slowly but surely the antibiotics began to take hold and this was reflected in Edith’s breathing and temperature. By mid morning Edith was maintaining good oxygen levels, temperature and breathing but there was a question mark over Edith’s heart rate, it was slower than the doctors would have liked and they decided an ECG was necessary to take a look at what was going on. This took us from an avoiding intensive care high, to another low over Edith’s ability to get over this illness. Thankfully this was done fairly quickly and there were no issues.
It was decided that Edith would benefit from some physio on her chest, we had some experience of this from a previous admission but Edith hadn’t benefitted much last time and it wasn’t continued to much extent. The physio explained that she would carry out what they call chest percussion (a kind of cupped hand hard pat around the chest area) to move the mucus sitting in Edith’s lungs, then they would suction it out with a small thin tube. She felt Edith would benefit and although it wouldn’t be pleasant it was important. The amount (if you are eating don’t read on) of mucus she got off of Edith’s chest was immense, it was thick and yellow which meant it was nasty. She also removed a massive brown plug which had been clogging up Edith’s poor lung. I couldn’t believe my eyes! Poor Edith was so distressed during this but the benefit of it far outweighed anything else. This happened each day and the results were speaking for themselves in Edith’s oxygen levels and nasty sounding cough.
Up until this point Edith had been nil by mouth and receiving nescessary fluids through IV but it was clear that she was beginning to get a bit of an appetite back. At this point our thoughts turned to the right lung which had shown the first signs that Edith was aspirating food into her lungs. It was felt by the doctors that Edith would benefit from moving from oral foods to an NG tube for feeding. We agreed and the tube was placed. It took a while but I think Edith is now used to her feeds. It must be very strange for her to go from having just having food orally one day to having no food and just milk the next! But as she is a superstar she has adjusted amazingly so far. We have been told that Edith will come home with the NG tube and it will continue that way until Edith reaches the top of the waiting list for a PEG. We were visited by the speech and language therapist who felt Edith should avoid any solids as well with the NG feeds until she is better and this will be reviewed before we come home. We had a visit from the surgeon yesterday and she has pushed Edith up her list as a more urgent case and said that we can hopefully expect Edith to be called for her PEG op in the early summer.
Edith has become stronger and cheekier by the day and today has been the best day yet. She is doing really well whilst having her opti-flow weaned slowly and doctors are very pleased with her progress.
Edith with a get well picture from cousin Olive ❤️
This is what I mean when I say she can turn on a penny, up to down but equally down to up! The doctors say that Edith’s blood tests showed that she had two common cold viruses that would test any 3 year old but for Edith they were much more serious. This has made us take a major step back when considering Edith’s future and we have a lot to think about. We are definitely here for the duration of the Easter weekend and Edith is embracing her inner bunny…
We are hoping we can come home early next week and although life will be quite different in lots of ways, it will be lovely to bring our little pigeon back to the nest. Edith may need several additions to her health care plan, including oxygen for bedtime and suction but this will all be reviewed and confirmed before we go.
All in all a pretty shit week!!!
Here’s hoping my next post is a little more sunshine.
Thanks for reading x