When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Saturday, June 25, 2011

Veronika's trip to Hospital.....

I still am trying to catch up on the sleep i missed out on for the 4 nights that Veronika was in hospital.....I think sleep must be over rated as I don't ever seem to get enough sleep! I guess that it didn't help that I realized after being there for 3 days that I hadn't had my medication to treat my over active thyroid(Graves Disease). I had a massive flare up about 6 weeks ago, and have been on a high dose of meds since.....but YES it does help when I remember to take my tablets!


This is Veronika in Emergency, temp over 39oCelcius

The 1st night Veronika was in hospital her temperature was really high most of the night.....it maxed out at 39.6 degrees, but as I said in my last post I think it was, the only really blessing from that is she was so lethargic that she dozed most of the night. Sunday night she flat out refused to sleep in the cot, so we snuggled on the recliner as best you can! Every time she got back into a deep sleep I would just get her settled into the cot, when the night nurse came in to to her hourly obs, and shine her torch in her face and wake her up!!!!! Angela, who's daughter was in the bed opposite Veronika's, told me the following morning she was about to tell the nurse to turn her torch off for me!

Monday night was the worst night we had in there. Veronika went into respiratory distress again, late in the afternoon, and was breathing at 2-3 times her normal rate most of the afternoon, and was 'sucking in' her chest, and in her neck, and was doing a bit of the 'grunting thing'. Those of you who have had a child in respiratory distress know what I mean by the grunting thing....its kind of like they hold their breath and then grunt as they breath out. A Doctor once explained it to me that its kind of like the body's own CPAC. I was once told off for driving Veronika into hospital when she was like that, I was questioned why I didn't call an ambulance, because what was I going to do if she stopped breathing....I hadn't thought of that, and I explained to the Dr that I didn't want to be one of those people who waste resources, to which I was assured that I wasn't! So the nurse called the Doctor to come look at Veronika again around 9pm ish I think, and she called the Paed Registrar to come look at her. She was in an emergency and came in about 1am, and then they checked Veronika every hour, including basically stripping her off to look/listen to her chest, roll her over and listen to the back too! Was a very long night as I was worried about her. Its just not nice at all, when she struggles so much.

The other thing that the respiratory distress meant was there was no chance of letting us go home Tuesday. If it was just feeding, then I think I could of been in with a chance of talking them into putting a NG tube in, and I would take her home and tube feed. But when its respiratory, I was fresh out of luck. We tried often to get Veronika to drink Tuesday. She still wasn't at all interested, and I think she managed about 130mls for the day total. The drip had been turned off after Doctors rounds in the morning, in the hope she would get thirsty.....but even if she was thirsty, she still wouldn't even put her bottle in her mouth. She refused to eat, which she doesn't usually eat much anyway, but we tried everything the nurses could find, like 2 sorts of jelly, custard, soup, chips, yogurt. Things that she usually wouldn't have because of her intolerance's! But we tried.

Tuesday night was another "I don't want to sleep in the cot, and you can't make me night". Wednesday morning Veronika drank 100mls and then had a bath. We were getting ready to give her another drink when the Dr's came to do their rounds, and asked if I wanted to take her home.....seriously I don't think he needed to ask me. I said if she didn't drink enough over Wednesday and Thursday then I would bring her back in Friday and they could put a bag of fluid into her.......

We had a quiet day home when we got home. Thursday Veronika had an appointment with her OT and Physio. I was going to cancel, but because Veronika had her drip in her left hand for almost 5 days, she had become extremely 'fisted' due to her hemiplegia(Cerebral Palsy). It was also going to be the last appointment we had with her Physio before she goes on long service leave to next year. Her OT was not overly concerned with Veronika's left hand. She didn't seem to resist too much when she un-fisted(is that even a word) it. We made another appointment to see her in a week and a half to see if we could get her back to where we were prior to Veronika becoming unwell. The Physio was impressed that Veronika was still crawling, and hadn't resorted to rolling again. Last year when Veronika had pneumonia every 4-5 weeks, we continuously went backwards in Veronika's milestones. So it's really positive that this time it hasn't happened to the same degree. It took until yesterday for Veronika to get the strength to climb up on the couch again, and she isn't moving as fast as she usually does, but I am sure it won't be long to we are back where we started.

. Their children were in the Paed ward too! When I caught up with where there children were health wise, really I have nothing to complain about. Yes Veronika was unwell, but what she had wasn't going to kill her, and when she gets back to full health she will be the same little girls she was before she became unwell. I made the best of the situation we were in, and chatted with friends, while Veronika was asleep, during the day.

I think the highlights of the week were when Veronika was being transferred from Resus in Emergency to the Paediatric end of Emergency, and she was blowing kisses to the Doctor and Nurses that had been looking after her. They said she was just adorable, and that she could come back any time, but at the same time they didn't want her to come back as that would mean that she would be unwell......and on Tuesday when Veronika was being wheeled through the hospital in the cot to have her Chest Xray and she was sitting up there waving to everyone she passed! Was soooo cute......

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