So Tiddler has Chicken Pox. Doesn't seem at all fair, she definitely isn't top of the list of the world's healthiest babies. I do worry a little that there is something affecting her immune system. Obviously as we are without a diagnosis still for her it's hard not to let your mind wander a little and worry about what might be...
She has what must now be hundreds of spots. Hundreds. When my husband checked her temperature on Sunday morning he actually thought the thermometer had broken. I then stripped her off and noticed 3 or 4 spots. We didn't know what it was at this point and phoned the Childrens Ward as she is known to them for advice. They told us to bring her in, predominantly I think because of her history. We were sent home quickly, having been told it was probably Chicken Pox rather than any post viral complication or chest infection.
By 4.30 pm, I was terrified. Tiddler had been dosed up on Calpol and Ibuprofen all day, had more spots, was floppy, moaning, only wanted to lie in our arms- completely out of character. She never lets us hold her, she's normally too busy doing Tigger impressions. Her temperature was 39.9 C and we couldn't get it down. Her breathing was rapid, almost panting. I rang the Ward again. I literally ran around the house grabbing bits and pieces and we set off again for the hospital. The car journey was as I imagined our labour dash would have been, had I not been induced early! Poor Tiddler in only her nappy in October. They were much busier this time and we had to wait for what seemed like an age. We were in the main waiting room and I felt awful as I knew she was proobably infectious. She was crying constantly for about 3 hours. Again, totally unheard of for Tiddler to do this.
They admitted us in the end because she had not taken enough fluids, and with her history of poor feeding, they didn't want to take any chances. By then I was calm, her temperature had by now subsided randomly on its own. We eventually got transferred to the Ward, and I was told we had to get 150 ml in her within an hour or they would put an NG tube down her and top up her fluids. I was desperate to avoid this as I knew this would certainly involve a longer stay. Using a 5ml syringe I managed to get 130ml down her which was enough to keep the tube away!
The Drs checked her throughout the night and by morning she was feeding normally again. It was abundantly clear she had Chicken Pox, she was fine to go home.
Now we are Calamining her like there is no tomorrow but she really is covered! I hope the itchiness passes quickly and without incident...
Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts
Tuesday, 11 October 2011
Monday, 8 August 2011
Videofluoroscopy, not a computer game- Tiddler's test
Today Tiddler had a Videofluoroscopy. She has had problems with her swallow for some time, I had to stop breast feeding due to her poor co-ordination of breathe and swallow (another story, and another blog post).
The latest concern that our Speech and Language Therapist had was that she was "pooling", my understanding of this is liquid / food gathering in her throat. They needed to check that her swallow was safe, and so the best way to do this is by using the Videofluoroscopy test. I have to say that for some time I have thought something was up as after feeding she sounds "gurgly" and like as if you opened her mouth you would see a pool of milk gathered at the back of her throat. Apparently, in the trade, this is called "pooling".
The test is a collaboration between Radiology and Speech Therapy, a fast succession of pictures are taken as fluid / food is swallowed. Tiddler had to feed/ eat her milk, water and purees as normal while seated in a special seat. All 3 had Barium in them - to show contrast in the pictures. Tiddler wasnt bothered about the taste of the Barium, apparently its rather inoffensive which was a blessing. The puree in particular turned into what looked like polyfilla! Tiddler managed though and fed obligingly.
The pictures were fascinating, really interesting. Although I was concentrating on feeding her so could really watch as much as I would have liked, you could see a cross section of her face, throat and neck and what looked like black liquid moving down her throat and neck.
The test itself only lasted 5 mins, it took longer to mix her milk and food with the polyfilla! Tiddler was absolutely fine, a non-intrusive test so she was non the wiser. They could see straight away that she wasn't pooling so thats great and means her swallow is safe. This is great and means I am less scared about T having more lumpy food. They could see though that she has a "delayed swallow" - she swallows too late? Don't quite understand this.... the Speech Therapist is calling on Thursday to discuss. They said to be careful after she eats, to not lay her down too quickly in case she hasn't swallowed. With her reflux, we keep her upright anyway so that's fine. Will wait to see what this "late swallow" means.
I am relieved. All systems go on solids again I hope.
It was a bit upsetting in the waiting room as I had waited there 8 months ago when Tiddler was 3 days old. I vividly remember sitting in this horrid, clinical cubby hole and I remember praying over and over again that she would be ok. She had been transported by a Dr from SCBU to radiology in her incubator, a tiny tiny baby- MY tiny tiny baby in a plastic box having one test then the next and the next. That time, at 3 days old she was having a Barium Swallow to check that she didnt have an obstruction in her stomach.
We are a bit too familiar with the hospital, I hate that we know our way round so well, we recognise lots of people and they us, and that poor Tiddler has been tested by nearly every department now, and a couple more than once! Happily however, the tests - the serious ones at least- have all given us a big fat negative, and we are very thankful for that and the fantastic care and resources that they have bestowed upon us.
The latest concern that our Speech and Language Therapist had was that she was "pooling", my understanding of this is liquid / food gathering in her throat. They needed to check that her swallow was safe, and so the best way to do this is by using the Videofluoroscopy test. I have to say that for some time I have thought something was up as after feeding she sounds "gurgly" and like as if you opened her mouth you would see a pool of milk gathered at the back of her throat. Apparently, in the trade, this is called "pooling".
The test is a collaboration between Radiology and Speech Therapy, a fast succession of pictures are taken as fluid / food is swallowed. Tiddler had to feed/ eat her milk, water and purees as normal while seated in a special seat. All 3 had Barium in them - to show contrast in the pictures. Tiddler wasnt bothered about the taste of the Barium, apparently its rather inoffensive which was a blessing. The puree in particular turned into what looked like polyfilla! Tiddler managed though and fed obligingly.
The pictures were fascinating, really interesting. Although I was concentrating on feeding her so could really watch as much as I would have liked, you could see a cross section of her face, throat and neck and what looked like black liquid moving down her throat and neck.
The test itself only lasted 5 mins, it took longer to mix her milk and food with the polyfilla! Tiddler was absolutely fine, a non-intrusive test so she was non the wiser. They could see straight away that she wasn't pooling so thats great and means her swallow is safe. This is great and means I am less scared about T having more lumpy food. They could see though that she has a "delayed swallow" - she swallows too late? Don't quite understand this.... the Speech Therapist is calling on Thursday to discuss. They said to be careful after she eats, to not lay her down too quickly in case she hasn't swallowed. With her reflux, we keep her upright anyway so that's fine. Will wait to see what this "late swallow" means.
I am relieved. All systems go on solids again I hope.
It was a bit upsetting in the waiting room as I had waited there 8 months ago when Tiddler was 3 days old. I vividly remember sitting in this horrid, clinical cubby hole and I remember praying over and over again that she would be ok. She had been transported by a Dr from SCBU to radiology in her incubator, a tiny tiny baby- MY tiny tiny baby in a plastic box having one test then the next and the next. That time, at 3 days old she was having a Barium Swallow to check that she didnt have an obstruction in her stomach.
We are a bit too familiar with the hospital, I hate that we know our way round so well, we recognise lots of people and they us, and that poor Tiddler has been tested by nearly every department now, and a couple more than once! Happily however, the tests - the serious ones at least- have all given us a big fat negative, and we are very thankful for that and the fantastic care and resources that they have bestowed upon us.
Saturday, 30 July 2011
First Step Away From Apnoea Alarm
We were very brave last night.
6 hours after Tiddler was born, she went purple and had what the medics call a "dusky episode". It was terrifying and was to happen again several times in her 1st 8 days.
The second time we were discharged from hospital, we were given an Apnoea alarm for Tiddler to wear.
At first she wore it all the time- in particular I remember one of our only trips out in the early days to Tesco... there we were terrified, totally unprepared in snow, trying to make some vague effort towards Christmas and in the pram was Tiddler, our ticking baby! Tick, tick, tick... After a while when things had calmed down a bit we made the conscious decision to take it off during the day so we all had a bit of normality. We have however always, put it on her at night. Its gone off periodically, most probably due to false alarms although we won't ever know for sure I suppose.
Anyway, last night at 2 am it went off again. The alarm is incredibly shrill and urgent as you would expect and I am too used to it waking me up! I instinctively reach out to touch Tiddler's tummy- this always makes her breathe in and so stop the alarm. You see its incredibly common for babies to hold their breath and its not normally a problem. It is probable that the times the alarm has gone off at home has been because of this. Anyway, last night the alarm wouldnt stop. Tiddler was fine though, she was breathing, asleep, and her colour was normal. The sensor pad had come off her tummy. Phew! As she was still asleep, we decided that rather than to risk waking her and creating a far larger problem (an incredibly angry baby), we would sleep without the alarm on. This was such a brave move, probably a bit too bold, but we were clearly both influenced by 2 am logic!
I woke quite a few times overnight but of course everything was fine. I felt we had really achieved something by not using the alarm all night. The last thing we want to do is medicalise our daughter- we have fought tooth and nail in the recent past to avoid tube feeding etc- and so its good that we the parents were able to go "cold turkey" like this.
Tonight the alarm is back on... I don't feel as brave somehow! She is still in a crib next to our bed and we are currently contemplating a move to her own room. I dont think I will be able to do this without the apnoea alarm. Thats such a terrifying prospect still. One step at a time eh?
6 hours after Tiddler was born, she went purple and had what the medics call a "dusky episode". It was terrifying and was to happen again several times in her 1st 8 days.
The second time we were discharged from hospital, we were given an Apnoea alarm for Tiddler to wear.
At first she wore it all the time- in particular I remember one of our only trips out in the early days to Tesco... there we were terrified, totally unprepared in snow, trying to make some vague effort towards Christmas and in the pram was Tiddler, our ticking baby! Tick, tick, tick... After a while when things had calmed down a bit we made the conscious decision to take it off during the day so we all had a bit of normality. We have however always, put it on her at night. Its gone off periodically, most probably due to false alarms although we won't ever know for sure I suppose.
Anyway, last night at 2 am it went off again. The alarm is incredibly shrill and urgent as you would expect and I am too used to it waking me up! I instinctively reach out to touch Tiddler's tummy- this always makes her breathe in and so stop the alarm. You see its incredibly common for babies to hold their breath and its not normally a problem. It is probable that the times the alarm has gone off at home has been because of this. Anyway, last night the alarm wouldnt stop. Tiddler was fine though, she was breathing, asleep, and her colour was normal. The sensor pad had come off her tummy. Phew! As she was still asleep, we decided that rather than to risk waking her and creating a far larger problem (an incredibly angry baby), we would sleep without the alarm on. This was such a brave move, probably a bit too bold, but we were clearly both influenced by 2 am logic!
I woke quite a few times overnight but of course everything was fine. I felt we had really achieved something by not using the alarm all night. The last thing we want to do is medicalise our daughter- we have fought tooth and nail in the recent past to avoid tube feeding etc- and so its good that we the parents were able to go "cold turkey" like this.
Tonight the alarm is back on... I don't feel as brave somehow! She is still in a crib next to our bed and we are currently contemplating a move to her own room. I dont think I will be able to do this without the apnoea alarm. Thats such a terrifying prospect still. One step at a time eh?
Sunday, 24 July 2011
Lesson learnt
This week I have met up with 2 really good friends from school. We have been friends for 19 years. Thats impressive. These two same friends sent us cards during Tiddler's most recent hospital stay and said exactly what I wanted and needed to hear. Sometimes you just need to know that you are in people's thoughts. That is enough. The hospital can be a lonely place and is very unreal- messages such as these and knowing that others are praying and thinking of you not only keeps up morale, but also helps to burst the weird ward- bubble where life stands still and you dont go outside for days on end.
Unfortunately, we have found that other friends / relatives / work colleagues can sometimes drift away when things in our life with Tiddler haven't exactly gone to plan. Thing is though what has happenned to us could have happenned to anyone, we are no different and I do wonder whether that is why some people keep a wide berth, almost as if you can "catch" problems like this, like we are jinxed or something.... I have found that if things aren't "happily ever after" then some people just cant respond to this, they are literally tongue tied and you can see them squirming when you can't say that "yes, everything is alright now." That's one thing, the other much more upsetting approach is from friends and some even close relatives that just dont call. I think for some they cant cope with any bad news... tough shit I say as we have been living it. Thanks for your support! (*sarcastic voice*)
I am not holding grudges against these people but I have learnt who my friends are and know who and what is important to me. I just haven't got the energy to make an effort in the face of behaviour that has upset and disappointed us. I am now spending my time and headspace on keeping Tiddler on track healthwise and nurturing those friendships that I know are worth cherishing. Hopefully, Tiddler's health problems are all in the past now and so worrying about those around me in this way is academic. I know who is important and I hope that if the shoe is ever on the other foot I will be a friend who gets in contact, even if awkwardly, rather than one who keeps their distance in an assumption that someone else is picking up the phone.
Unfortunately, we have found that other friends / relatives / work colleagues can sometimes drift away when things in our life with Tiddler haven't exactly gone to plan. Thing is though what has happenned to us could have happenned to anyone, we are no different and I do wonder whether that is why some people keep a wide berth, almost as if you can "catch" problems like this, like we are jinxed or something.... I have found that if things aren't "happily ever after" then some people just cant respond to this, they are literally tongue tied and you can see them squirming when you can't say that "yes, everything is alright now." That's one thing, the other much more upsetting approach is from friends and some even close relatives that just dont call. I think for some they cant cope with any bad news... tough shit I say as we have been living it. Thanks for your support! (*sarcastic voice*)
I am not holding grudges against these people but I have learnt who my friends are and know who and what is important to me. I just haven't got the energy to make an effort in the face of behaviour that has upset and disappointed us. I am now spending my time and headspace on keeping Tiddler on track healthwise and nurturing those friendships that I know are worth cherishing. Hopefully, Tiddler's health problems are all in the past now and so worrying about those around me in this way is academic. I know who is important and I hope that if the shoe is ever on the other foot I will be a friend who gets in contact, even if awkwardly, rather than one who keeps their distance in an assumption that someone else is picking up the phone.
Monday, 18 July 2011
First proper day out!
Yesterday it poured here. Poured everywhere I reckon, but we set off and were determined. This wasn't that bizarre British holiday spirit so often found on the seaside on a grim August day, we were genuinely excited!
We went to a local wild animal park and yep it rained but as most had decided not to venture out we had free run of all shelters and the cafe.
It was our first proper day trip with Tiddler. We had been on a couple of others but they were with relatives and dont count in my book! This was our first trip with just myself, Daddy and Tiddler. A week ago we were discharged from hospital having had a period of 9 days of Tiddler being fed by a nasal gastric tube. Things were very different then. She's doing really well now, I want to pinch myself, but I am just loving every minute of "normal" we get. I dont really want to believe that this is it now, the only way is up. We have been here before, so I will be cautious, but relish every smile and every normal thing that we do.
Not so long ago, I couldnt bear to be too far from a hospital, "just in case". Tiddler had apnoeas when tiny and the memory is all too horrific and real for us both. We are looking at holidays at the moment and I still cant bring myself to say yes to locations that are too far from the hospital, but for now I will be kind to myself and let myself off this.
So yeah, the day out... we saw Wallabies, Goats (a particular favourite), various birds, sheep, you know the drill. Went on a little train, she loved it- not to see the animals as its all about the tree branches waving in the wind "innit"?! Tiddler also fed when we were there- a fabulous new skill she has taken to!! It really was a day of smiles and de-stressing, for all three of us I think...
We went to a local wild animal park and yep it rained but as most had decided not to venture out we had free run of all shelters and the cafe.
It was our first proper day trip with Tiddler. We had been on a couple of others but they were with relatives and dont count in my book! This was our first trip with just myself, Daddy and Tiddler. A week ago we were discharged from hospital having had a period of 9 days of Tiddler being fed by a nasal gastric tube. Things were very different then. She's doing really well now, I want to pinch myself, but I am just loving every minute of "normal" we get. I dont really want to believe that this is it now, the only way is up. We have been here before, so I will be cautious, but relish every smile and every normal thing that we do.
Not so long ago, I couldnt bear to be too far from a hospital, "just in case". Tiddler had apnoeas when tiny and the memory is all too horrific and real for us both. We are looking at holidays at the moment and I still cant bring myself to say yes to locations that are too far from the hospital, but for now I will be kind to myself and let myself off this.
So yeah, the day out... we saw Wallabies, Goats (a particular favourite), various birds, sheep, you know the drill. Went on a little train, she loved it- not to see the animals as its all about the tree branches waving in the wind "innit"?! Tiddler also fed when we were there- a fabulous new skill she has taken to!! It really was a day of smiles and de-stressing, for all three of us I think...
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