Sunday, September 20, 2009

The hard yards

Hi all,

Sorry it's been so long since the last post. Abbigail was discharged on the friday after her surgery. We had to starve her for 5 hours before the surgery, which went well, and had the expected result. She was very dopy but still rather sore straight after surgery, and then only had a little feed off Sarah, and then struggled to get any kind of routine going straight after the surgery. That night was not fun. She woke every hour of so, and would only drink a little bit each time. But friday was better, she finally had a good feed in the afternoon, and they decided to discharge her at that point. She wasn't really happy that night, but Saturday was a great day, she slept and fed well, until the night which again wasn't one of her best, and then Sunday we struggled through. She was increasingly agitated and was very grizzly. She didn't eat well, and we had a really nasty night with her. Then on monday she just refused to drink. Sarah couldn't get her to take anything off her, and she would scream whenever Sarah put her to the breast. I came home from lunch and essentially tried my whole lunch break to get her to eat. Nothing doing! We luckily had our first appointment with her pediatrician that afternoon, so I took time off for it to be there with Sarah. And just as well too. She was inconsolable. She litterally cried the whole hour that we were there. Did I say cry - I meant SCREAMED. I had to take her out of the consultation room for at least half of the appointment so that Sarah and the pediatrician could talk. The pediatrician was great. He was very concerned for her, and one of the things we wish had been done differently with the surgery was that she was weighed immediately before the surgery, but not immediately afterwards. So with all her weight gaining issues we were now completely in the dark as to exactly how much weight she had lost since the operation. She weighed 4.0 kg (I think) immediately before the surgery, and then four days later she weighed 4.8kg because of the cast she was wearing. And we had no idea how much weight she had lost. We know she lost weight because she drank very little, and also she was starting to be able to wriggle around in her cast. We could litterally slide our hands down the front of her cast! So he decided that she needed to be admitted to the children's ward again to be monitored and fed nasogastrically if need be. We got there at about 5pm, and at about 8pm we saw an intern doctor who basically took a history (do interns do anything else?) and then we were left to continue to try to feed her - she refused the breast point blank, and we had to resort to using a dummy to quiet her and soothe her, and then switch it for the bottle - she took some but very little. Over the next day we continued to struggle to get her to drink, and she continued to loose weight. So they eventually tubed her and this allowed us to attempt to breastfeed her and top her up as needed. Which was quite frequently. She has been put on omeprazole 5mg twice daily, and they have stopped the ranitidine, as the pediatrician suspected that it may actually have made her reflux worse. She is on daily weighs, and has had two days where she hasn't put on weight, but also hasn't lost weight. There is little more we can do other than struggle through, but they are going to do some investigation on monday to see what more they can find. They may do a gastroscopy (camera down to stomach) and may biopsy the lining of the osophagus to check for issues. So she is spilling a lot less, but still screams when sarah tries to feed her from the breast a lot. Sarah is struggling with this a great deal, and understandably. we are greatful that she is able to express and keep up with Abbigails needs that way. She doesn't just cry, but screams like she is in pain.

Hopefully we will find out more information with the new week that will help us to get to the bottom of the issue.


Glen and Andrea said...

Oh gosh you poor, poor things! We have been thinking of you so much and praying too. Glen has been going to ring you but hasn't taken his scheduled days off on his new job yet and is very short on time himself but we WILL be calling you soon. I wish I was there to visit or offer some sort of help. I want to try to come down for a visit soon to see you both. I hope they do a gastroscopy as it will give you both peace of mind about what on earth is going on for her. You are both doing very well by the sounds of things, good on you. Hope to see you soon, Andrea.

Stacey said...

Hi Abe,
I've been away from blogging all week, but have just read your update and want you to know that I will continue my prayers for your family. I can't imagine how difficult this must be. I hope you have had answers and improvements since the last update.

Sending prayers!