Oh the joys of the National Health Service.
We arrived at the Children's Hospital, where the local orthopaedic hospital had borrowed a small side ward for the weekend. Settled ourselves in nicely, ordered a nice pureed diet for Mog, found some decent padded cot sides for the bed, explored the ward, met the doctors and did all the last minute pre-op checks, met our fellow patients and mixed nicely.
The following morning we had an embarrassed nurse come to us and inform us that the swabs taken three weeks previously had tested positive for MRSA and that we needed to be in strict isolation, no contact with other patients, no access to the playroom, no physical contact between hospital staff and Mog except with staff wearing aprons and gloves. No explanation as to why this had not been noticed before our admission, which would have given us time to clear the infection before coming into hospital in the first place, no explanation as to why it hadn't been picked up on arrival which would have stopped us coming into contact with the other patients on the ward. Grump.
So, Mog went off to theater, Little Fish and I went off to wait for a friend, and the nurses leapt into action to clear out the goldfish bowl isolation room in the middle of the ward, a task which kept them occupied for the next 4 hours. Not helped by the fact that the ward was only on loan, so none of the nursing staff knew where anything in the rest of the hospital was.
We spent the next few days in the goldfish bowl. Picture a sealed room in the center of a ward with windows all around and no curtains, the room itself the size of a hospital bed plus 2 foot all around. Lovely. Mog is however very comfortable, doing very well, mostly pleased with life and not in pain thanks to an epidural and a boatload of painkillers. She is however not impressed with the lack of food; for some reason the kitchen staff and medical staff are under the impression that she is unable to eat. On the one evening (Sunday) that they did finally remember us they completely ignored the menu we'd picked out for her and let other children on the ward eat that, then seemed suprised that I was unhappy with their offer of sandwiches and crisps. Ever pureed a packet of crisps? Physio visits daily and I ask how I am supposed to do Mog's daily chest physio without tipping her upside down and whilst she is encased in a brace. No helpful suggestions.
Monday morning and we are transferred to the orthopaedic hospital. To facilitate this, Mog's epidural is removed first thing as she needs to be free of it for 2 hours before having the shot of morphine which will see her comfortable for the transfer. Naturally this has not been written up on her drugs chart, and equally naturally it takes well over three hours for the paeds to come up to the ward to sort it out. Cue one sad Mog and one increasingly irate parent. Transfer eventually happened at lunch time, so another missed meal.
Anyway, eventually we arrive at the orthopaedic hospital where we are given a lovely private room with ensuite shower, freedom to explore the rest of the ward, a private play area outside for Little Fish, and staff who know where everything is. Mog herself is impressed with the kitchen staff, who bring up a nice meal and ask her about her preferences for the rest of the week. This hospital's physio is more familiar with post-op patients and has some good tips for chest physio, the nurses find a hair washing tray and Mog's immediate future starts looking rather more interesting...
...until Tuesday evening when she starts having a LOT of pain and spasm as the last bit of the epidural finally wears off. By the time that is sorted (with a large dose of diazepam) she is exhausted, and it is at this point we notice that she is desatting impressively, that she has developed a beautiful wheeze and rattle and other signs of respiratory distress, a fine fever, oh, and some wonderful seizures on top of that. Chest Xray reveals a nice bout of pneumonia as well as showing signs of damage from previous infections, the seizures and the spasms don't stop and eventually at 4AM we are transferred back to the children's hospital. Settling in on the neuro ward we now have plenty of staff who are familiar with seizures and spasms, but who are not used to orthopaedic patients; we have people who are not scared to treat the seizures but who are very unwilling to keep up with the large quantities of painkillers Mog needs in order to stay comfortable. Thankfully Mog's own neuro eventually visits and insists that she is given everything she needs for as long as she needs it. However, the hospital will not consider her coming home on morphine, so we have to wean her off that onto codeine. Meanwhile Mog remains on oxygen with lots of nebulisers, and seems to be really enjoying the nebs.
Slow and steady recovery not helped by overstretched nursing staff unable to give painkillers on time, and by the pharmacy which seems to insist on collecting all Mog's medications and her charts and keeping them downstairs for hours at a time despite her need for pain relief on a regular basis.
Four weeks to the day from when I spent the night sitting by my oldest daughter waiting for her to die I find myself standing by my middle daughter holding her head and willing her to keep breathing. I cannot lose a 2nd child so quickly after the first. Thankfully I don't have to, and the spasms subside, the seizures calm themselves, and the chest infection begins to improve. Mog is accidentally weaned from the oxygen (nurse forgot to hook her back up to it after a neb) but by the time this is noticed she has held her own for 4 hours, and we are eventually released into the care of our hospice where I can sleep for a bit and where both girls will be cared for on a one to one basis by loving experienced carers.
Finally we are allowed home, and I make the pleasing discovery that Mog is now on a drugs regime which has her taking medication at 10PM, midnight, 2, 4 and 6 AM. Marvellous. A quick look through the drugs chart reveals that some of these medications could be given at different times, and we settle for a compromise which gives me the potential at least for 5 consecutive hours asleep.
Mog finished her heavy duty antibiotics on Monday this week. On Tuesday she started looking a bit quiet again, and on Wednesday we started the next round of antibiotics for yet another chest infection (or a continuation of the original one). We are now pushing for access to nebulisers at home and this should be sorted for Monday, provided the post office stops striking.
Little Fish meanwhile continues her merry trail of devastation and chaos, the builder has not returned, I'm drowning in paperwork, my internet access seems to be limited to 2 hours 2ce a week and I still can't bury my oldest child.
But apart from that, we're doing fine. How are you?