Thursday, 24 July 2014

Surgery and Beyond

We have been home for 2 days following Isaac's bowel pull-through operation, and are adjusting to our new normal. We have been so lucky; we have amazing, supportive friends and family, without whom our hospital experience would have been infinitely more difficult. Nonetheless, despite a textbook operation and recovery, the hospital experience was, once again, unnecessarily painful and difficult for us as parents. We had already strained relations with our surgical team, following an incident regarding Isaac's feeding a few weeks ago. In June he was weighed and found to not be putting on as much weight as the team would have liked. It was agreed that our midwife could weigh Isaac at home and we should phone through his stats. He was weighed for the first time on this regime four days after his hospital appointment, and had only gained a tiny amount. We dutifully phoned his weight through, and were told that our consultant was on holiday, but had left instructions that Isaac should be admitted if he failed to significantly gain. We outlined our plan for increasing his weight; continuing to breastfeed, but adding supplementary syringe feeds of expressed breast milk.The hospital agreed that this was the regime they would use too. On the basis that there was nothing the hospital would do that we weren't planning to do at home, we declined admission, only to be told that because the consultant was away, there was no-one to rescind his decision, and as we were, therefore, going against medical advice with a child, we would be referred to Social Services. They did say that we could attend Poole Hospital, so we were blackmailed into an overnight stay there.

So, attending the pre-op meeting with our consultant, we were careful to discuss with him the things we needed to happen to marry the surgery with what we felt were Isaac's emotional and physical needs. We discussed the nil-by-mouth timings, and acquiesced to the "four hour rule", despite knowing that breastmilk is actually considered a clear fluid. We pointed out that if Isaac was to go without milk for four hours, I would need access to an electric breast pump as soon as I arrived at the hospital. We requested to be able to hold Isaac as he was given the anesthetic, and to be with him in the recovery room before he woke up. Our consultant said that the final decision about anesthesia was down to the specific anesthetist, but that every effort would be made to find an anesthetist who would accommodate us and that being in recovery would be fine. We were confident that we were being listened to, and hopeful that the surgery would go well. We took a few happy photos of Isaac pre-scarring!

We arrived at 7.30am on Friday 18th July, and, having not nursed since 4am, I immediately requested the promised breast pump only to be told that the ward's pumps had broken, and the purchasing manager did not feel they should be replaced, as he thought that "women should provide them themselves". I was told that I could go to a ward two floors down to pump, but they had breast pumps in a locked room so that no other ward could steal them. This set-up was fine while Luke was at the hospital and could be with Isaac, but he was planning to stay with the girls after the first night, and I was not happy about leaving Isaac alone to pump for the best part of an hour. Thankfully, some of my friends were available to hire a breast pump from a Children's Centre in Poole, and I picked it up when I went to Grace's Drama Recital (she did a lovely version of Robert Louis Stevenson's poem "Summer Sun", which I failed to get photos of because my phone was too full and she started before I was ready - but Ali did, so there is one below!) on Saturday morning. 

Grace as "The Sun", featuring
Charlie's beautiful, naturally
dyed silk scarves
We were hopeful that we would be allowed to stay with Isaac after two other anesthetists explained to parents how important it was for children to have a parent with them. Unfortunately, ours only believed that applied to older children, stating that Isaac "wouldn't know the difference". When I said that I wanted him to go under happy, she said that she "wanted him to go under safe" and she couldn't do that if "she had to concentrate on parents too". When we took him down to the theatre suite, we were then told that we would be called "once he was awake". We reiterated our request to be with him as he woke up and were once again told that while that was important for older children, it "doesn't matter for babies". We were told that we would not be allowed to wait in the waiting room, and were locked out of the theatre suite altogether. After the operation, our consultant , Mr Keys found us by the locked doors and explained how the operation had gone - and it was a further 20 minutes before we were allowed through to see our baby. I was beyond furious, and, to be quite honest, I still am whenever I think of it.

Isaac recovered really well following the operation. He had 10cm of bowel removed, and first pooed on the Monday. He also came off all medication on Monday, although he is back on oral paracetamol since returning home, since he is moving around a lot more. We came home on the Tuesday, a day earlier than anticipated. He is wearing a fabulous romper from a charity called Pop 'n' Grow who provide free , specially adapted clothes for children who need them for medical reasons; this one opens completely flat and poppers around children who are too sick to move, and has special openings at the side for wires.

We have been very lucky so far. Isaac seems to have settled into a habit of around four poo "sessions" a day, each comprising of one large poo, followed up by 4-5 smaller poos in quick succession. we manage this by having him in a nappy for the large poo, and then laying him on prefolds for the post-poo poos! This nappy free time, combined with a combination of Organic Babies Soothing Baby Salve and the most expensive nappy cream ever: Maclaren at £21 a tube, seems to be keeping the dreaded Hirschsprungs nappy rash at bay. Two other children with Hirschsprungs were in hospital with us - one to have a stoma created and the other to have a central line for intravenous nutrition put in. It reminded us once again that this is a lifelong condition; that just because this surgery went well, it doesn't mean that we will never have to consider difficult options for Isaac. We now also have a dedicated "Hirschsprung's Nurse", who has created a Facebook Group for families being treated at Southampton Hospital.

I am intending to write more regularly again now; things are somewhat calmer, and we are looking forward to a lovely Home Eddy summer full of great activities following our early summer holiday during Isaac's early days.

1 comment:

  1. I feel so sad and cross that you had to go through an extra trauma during this difficult time.
    I am glad to hear that Isaac is getting better.
    I have been thinking of you. Take care, Céline