Another hospital stay!

Hi everyone! Back again after yet another hospital stay, they may as well keep  a room with our name on the door, I have a feeling these little hospital holidays are going to become a regular thing!

So as you will have all read in my last post, Anna is now NG fed. We were encouraged to feed her orally for 15 minutes , with an NG top up over the hour. The only problem is, Anna has become so averse to feeding orally that pretty much everything  is passing through the tube. For the first week or two after our discharge from BCH, she took really well to NG feeding. She was suddenly gaining weight beautifully, had more energy and was generally even happier than she was before.
But on the 2nd March she started vomiting. This happened to coincide with a medication change. Anna had been on ranitidine since last summer to control her reflux, however her speech and language therapist and I became concerned that she was still showing very little interest in solid food. Worried that we are going to miss the window for weaning, Anna's consultant had switched her medication to omeprazole, hoping for a positive result on the weaning front. What we got, unfortunately, was the opposite. At first I thought it could just be her body adjusting to the new medication, so decided to give it a week or two to settle. But gradually the vomiting was getting worse. We were changing the bed sheets 3 times a day, getting through 6 sleepsuits for Anna daily, every morning and night I was scrubbing sick from the living room rug and the sofas. The one day she ended up having 5 baths because she was covered head to toe in vomit. And we're not just talking a little bit of spit up, I'm guessing the majority of you have seen the Exorcist? Then you get the idea!

After 2 weeks of this I'd had enough, so decided before getting in touch with the hospital I'd take her back to the GP. Their advice was to change her medication back to the ranitidine and stop the omeprazole. Oh my goodness if  I hadn't seen vomit before I had now. Nothing was staying down. We took to syringing fluids into her just to keep her hydrated. She became lethargic and miserable, so on Friday 20th March I decided enough was enough and took her to A&E, this time at Russell's Hall. We were admitted,  and I was set the challenge of syringing 8ml of dioralyte through the NG tube every 5 minutes over an hour, increasing that to 16ml every 10 minutes over the next 3 hours. She was vomiting bits up, but not as much as before. Her overnight feed was replaced with dioralyte,  but she started vomiting this up too. The next day we were back to syringing, however tonsillitis hit me like a ton of bricks and I could hardly stand. I had to call Sam and get him to come and stay with Anna overnight. I felt awful leaving her, but I couldn't stay awake or stand up, let alone take care of her!

After going to the out of hours dr for some antibiotics, still feeling absolutely terrible, I went back to the hospital to resume my normal duties. Over the next couple of days a few things were picked up by us and the professionals,. Her tube had been changed to a weekly, so we changed it back to a monthly as it was more supple and, we assume, comfortable for her. Her milk was too heavy, so a new easier to digest milk was prescribed, on a 50% milk 50% dioralyte mix that we will gradually decrease until she is on full milk feeds. Her medications were shuffled around a couple of times, first she was trialled with domperidone and ranitidine, now she is on both erythromycin and ranitidine. A chest  X-ray showed that Anna is micro aspirating. This basically means when she is having a reflux choking episode, some of the milk she is coughing up is going in to her lungs and causing problems there. With all of this in light, and knowing that her condition is never going to get any better, we made the decision to ask for her to be put on the list for a gastrostomy and a fundoplication before waiting for the usual 6 month NG trial period. For those of you who are unsure what these are, a gastrostomy is a peg, or a feeding tube that is inserted through the stomach wall, that will be much better for Anna in a number of ways. A fundoplication is the tightening of the oesophagus, or gullet. The muscle to the entrance of her stomach will be tightened as will the oesophagus itself. This should prevent the reflux, as medication seems to be having little effect. Luckily for us, her consultant agreed and referred her to the surgeons on the same day, so we're looking at around a 9 month wait.

Now Anna is home. She hasn't had a vomit for around 38 hours, and we're hoping it stays that way, for the meantime at least! She has a follow up appointment for a second barium swallow to check the severity of the reflux, until this point we have open access to the ward in case the vomiting starts again. We're all exhausted. For some strange reason this trip has knocked it out of me more so than any of the others. Today will be spent cuddling my precious baby boy, who has been such an angel and never complains when his whole routine is turned on it's head. I really do feel for him, at times like these he is completely side lined, something that shouldn't happen to a four year old, but completely out of our control. I'd also like to say thank you to everyone for their kind words and actions over the last week - it really means a lot to know people are thinking about us and want to help!  Fingers crossed we're not visiting another hospital for a while now!