We had a chance today to meet with the orthopaedic consultant who will probably follow Summer until she is 18. It was a chance to find out a little more about how the damage to her spine may affect her functionally. We always knew that she would have problems with her feet, bladder & bowels, but it seems that she will also have problems with her hips which was a bit more of a shock. I do not want to say what she will or will not be able to, as that depends so much on what Summer wants to do. It does seem that she will be a wheelchair user, but hopefully quite independent with that.
Are we disappointed? Yes… Does it change how much we love our little girl? No.
Tuesday, 31 July 2007
Thursday, 26 July 2007
Another photo!
Its been a bit of a hard week, the appointment about her hips did not go as well as I thought it would, and it may be that the brace will not work. We have an appointment with the ortheopedic consultant in Leicester next week to chat through Summer and discuss things related to her lower limbs and prognosis.
My Mum and Dad have been up for a few days and we took this photo yesterday. She is still very cute!
My Mum and Dad have been up for a few days and we took this photo yesterday. She is still very cute!
Friday, 20 July 2007
Sleeping by Washing machines!
We are home....yet again. Her Sodium seems to be ok, We are having another test tomorrow just to check. So we are trying to settle again into some kind of routine. I think Summer quite likes hospitals and the noises, so has been a little fretful here. She is currently sitting next to the washing machine in the hope that she will want to sleep for a little bit.
What an emotional roller coaster we are on, had lost all sense of normalilty, untill I realised that there is still the bathroom to be cleaned and washing to do!
There is a sense of where is God in all of this? but I was reading the Message, which is a version of the bible that is really easy to read. A bit in ephesians 4.
This IS the road we have been called to travel on, and any sorrow I have for us and Summer, does not lead anywhere.
There is another bit just before this verse and it says
What an emotional roller coaster we are on, had lost all sense of normalilty, untill I realised that there is still the bathroom to be cleaned and washing to do!
There is a sense of where is God in all of this? but I was reading the Message, which is a version of the bible that is really easy to read. A bit in ephesians 4.
"I want you to get out there and walk, better still run on the road God called you to travel. I do not want you sitting around on your hands. I do not want anyone strolling off, down some path that leads nowhere"
This IS the road we have been called to travel on, and any sorrow I have for us and Summer, does not lead anywhere.
There is another bit just before this verse and it says
" God can do anything you know - far more than you could ever imagine or guess or request in your wildest dreams"
Isn't that great!
Monday, 16 July 2007
How best to spend 99p
I've calmed down a bit now. Needed to let off some steam and glad I did. That's the point of this blog to say how we are feeling, to record it all for the time Summer can read it her self and understand.
Her sodium levels are still low but they are on their way up slowly. She has to drink a salt solution 3 times a day which she hates, just as we would if asked to drink some salted water!
Still no sign of her coming home but she seems much happier and has some colour back. She is also coping well with a vastly reduced diet, less than half her previous amount, all thanks to the best 99p we have ever spent.....a dummy!!! (or pacifier to you Yanks)
Her sodium levels are still low but they are on their way up slowly. She has to drink a salt solution 3 times a day which she hates, just as we would if asked to drink some salted water!
Still no sign of her coming home but she seems much happier and has some colour back. She is also coping well with a vastly reduced diet, less than half her previous amount, all thanks to the best 99p we have ever spent.....a dummy!!! (or pacifier to you Yanks)
Sunday, 15 July 2007
Summers back in Hospital
Summer has been admitted to the Leicester Infirmary again after getting poorly. Yesterday she just wasn't herself. She was very grizzly, vomiting and had diarrhoea so we took her to A & E in Leicester to have her checked out. They did some blood tests and some other tests which all came back OK so at 2am we came home.
We had a call at about 9am the next morning asking us to go back in sometime after 12pm as on a second look she had a sodium deficiency. So we casually went in after a nice lunch with friends to find out her sodium levels were very low, and this was indicated by the previous nights results. They were re checked by the registrar the following day who found the error. We were both a little mad about that mistake as you would imagine but the next error really got to me.
Apparently the reason for this sodium deficiency is due to over feeding. Since she started on a bottle at 2 weeks old we have been telling all the doctors and nurses how she was eating a lot and we were always told you cannot over feed a baby. I even had one of the doctors light heatedly repeat to a worrying Kathy 3 times - "You cannot overfeed a baby". How wrong I was. I have to say that I got mad, not with anyone in particular but it was just such a devastating thing to hear after everything.
So tonight Summer is poorly in hospital with Kathy. She ate her full days feed by 2pm today so they will not feed her till 5am tomorrow except for a little if she is desperate. And from then she is now to eat below her recommend daily amount to try and build up her sodium levels again slowly. She will be in for a few days now until she is back to her old self.
We are angry this has happened and disappointed that she is ill again. All the prayer she has had and then his happens. Why? What is all this for? How is this "prospering us" as we are promised. Please pray for Summer that she will get and that we well see some real benefit coming from all this. I think we need that right now.
We had a call at about 9am the next morning asking us to go back in sometime after 12pm as on a second look she had a sodium deficiency. So we casually went in after a nice lunch with friends to find out her sodium levels were very low, and this was indicated by the previous nights results. They were re checked by the registrar the following day who found the error. We were both a little mad about that mistake as you would imagine but the next error really got to me.
Apparently the reason for this sodium deficiency is due to over feeding. Since she started on a bottle at 2 weeks old we have been telling all the doctors and nurses how she was eating a lot and we were always told you cannot over feed a baby. I even had one of the doctors light heatedly repeat to a worrying Kathy 3 times - "You cannot overfeed a baby". How wrong I was. I have to say that I got mad, not with anyone in particular but it was just such a devastating thing to hear after everything.
So tonight Summer is poorly in hospital with Kathy. She ate her full days feed by 2pm today so they will not feed her till 5am tomorrow except for a little if she is desperate. And from then she is now to eat below her recommend daily amount to try and build up her sodium levels again slowly. She will be in for a few days now until she is back to her old self.
We are angry this has happened and disappointed that she is ill again. All the prayer she has had and then his happens. Why? What is all this for? How is this "prospering us" as we are promised. Please pray for Summer that she will get and that we well see some real benefit coming from all this. I think we need that right now.
Friday, 13 July 2007
Thursday, 12 July 2007
Update
We thought Summer would be home yesterday or today bu she is still at Queens in Nottingham. for the last 24hours or so she has been running a temperature which is causing us all some concern.
The doctors are obviously concerned about meningitis, an infection caught from the operation. Another possibility I was told about was there there may be some bleeding in the brain which incredibly so is not so serious but can cause just a high temperature when she is otherwise OK. I may have misunderstood that as it doesn't sound right. if they are still concerned tomorrow they may give her a lumber puncture which i think is where they inject antibiotics straight into the spinal cord. Any of you doctor types reading can correct me if I'm wrong on that. We would rather that didn't happen as it will knock her for 6 for a while I'm sure. She is in the best place possible however have regular obs every 4 hours so we are confident she will be OK.
The doctors are obviously concerned about meningitis, an infection caught from the operation. Another possibility I was told about was there there may be some bleeding in the brain which incredibly so is not so serious but can cause just a high temperature when she is otherwise OK. I may have misunderstood that as it doesn't sound right. if they are still concerned tomorrow they may give her a lumber puncture which i think is where they inject antibiotics straight into the spinal cord. Any of you doctor types reading can correct me if I'm wrong on that. We would rather that didn't happen as it will knock her for 6 for a while I'm sure. She is in the best place possible however have regular obs every 4 hours so we are confident she will be OK.
Tuesday, 10 July 2007
Duckys' House
Summer went in to theatre this morning at 8am after a night I wished I was at home and Kathy was at the Hospital! Summer would not stay asleep for more that 1/2 hour after midnight, almost like she knew there was a tricky day ahead.
We met up with her again at about 11.30am in the recovery room where she was already waking and seemingly back to her old self!! The operation went really well, they saw the fluid flowing through the new hole they had made and were able to avoid cutting into the very important artery. We are completely astounded again at Summers ability to take these things in her stride so easily seemingly indifferent the the mammoth things happening around her.
The hole they have made allows the fluid building up to move into some extra space to provide a more area for it to be absorbed so by seeing the fluid moving around they have done all that they can. What we need to wait on now is whether Summer can absorb it quick enough.
And here's the best bit: If she can, and we should know in a few weeks (we are told a 50% to 60% chance), it is likely that this will stay working for the remainder of her life. Very few have failed to work after working initially we were told. As you can imagine this is very exciting for us, all the possibilities for her life and development, as well as our own lives change if hydrocephalus is not an issue!!
So that's what we pray for now. We asked for a miracle and maybe this is it? The ability of the Surgeons and doctors involved is amazing, not to mention, as we found out today, their sense of humour. We left a little duck toy with Summer in the cot and when we saw her an assistant anesthetist, apparently not very busy, had constructed a little house on the side of her cot, "Duckys' House". You can also see the duck has had some surgery of her own!
I'm at home tonight, surprised to be back in work tomorrow. I may even be able to pick them up from the hospital to come home tomorrow, not the 4 days we were originally advised of. Are we soon to have a sense of normal again????
Monday, 9 July 2007
Another operation.
Summer is having her operation tomorrow morning to try and reduce the fluid in her brain. She is the first on the list, 8am.
I am at home and Nic is staying with her this evening in Nottingham. It is good that they feel they can do this operation. There is only about a 50-60% success with it, so our prayer is that we will be in that percentage, and obviously that Summer comes through this operation well. I think we will be home after a few days and then we wait and see if it has worked.
Not sure I can say much more at the moment, Will write more when tomorow is over.
I am at home and Nic is staying with her this evening in Nottingham. It is good that they feel they can do this operation. There is only about a 50-60% success with it, so our prayer is that we will be in that percentage, and obviously that Summer comes through this operation well. I think we will be home after a few days and then we wait and see if it has worked.
Not sure I can say much more at the moment, Will write more when tomorow is over.
Sunday, 8 July 2007
Back to Hospital
This maybe our last night here together for a while. Summers going in tomorrow so they can starve her ready for surgery on Tuesday morning. I'm quite glad about that as with the nurses around there is a few extra people to help comfort her! I feel or the other families near by when Summer's lungs open up for food though. Maybe I could upload her crying here so you can all share the fun???!!!
Thanks again for all the prayers and kind words. It will be difficult handing her over for surgery again, this time we will just leave her in the ward and not outside theatre to save some tears for later.
Thanks again for all the prayers and kind words. It will be difficult handing her over for surgery again, this time we will just leave her in the ward and not outside theatre to save some tears for later.
Saturday, 7 July 2007
Toast and surgery
Its saturday morning, 9.00 and I have been up with Summer since 5.30. Nic is still asleep having got up in the night to her. she is currently asleep on me in her sling. I am trying to eat breakfast, but keep getting crumbs in her hair!
Nic spoke to Nottingham yesterday and the operation is planned for Tuesday. The doctor managed to calm some of our fears that increased pressure on her brain is affecting her eyesight and mood. Apparently the increase in fluid is not at a level to cause any problems. They want to do the operation before it does get to that point.
So we are back in hospital again, Summer takes it all in her stride, but it is a little harder for us. We hope and pray that the operation works and that there are no infections afterwards.
It is amazing how quickly she has changed and grown. I saw a friends new baby yesterday and she looked so much smaller. Summer has had to move into her cot because with her brace on her legs hang over the sides of the moses basket which looks very funny, I cannot wait for them to come off so I can give her a bath. Not sure whether she will love or hate it.
Nic spoke to Nottingham yesterday and the operation is planned for Tuesday. The doctor managed to calm some of our fears that increased pressure on her brain is affecting her eyesight and mood. Apparently the increase in fluid is not at a level to cause any problems. They want to do the operation before it does get to that point.
So we are back in hospital again, Summer takes it all in her stride, but it is a little harder for us. We hope and pray that the operation works and that there are no infections afterwards.
It is amazing how quickly she has changed and grown. I saw a friends new baby yesterday and she looked so much smaller. Summer has had to move into her cot because with her brace on her legs hang over the sides of the moses basket which looks very funny, I cannot wait for them to come off so I can give her a bath. Not sure whether she will love or hate it.
Wednesday, 4 July 2007
Surgery Postponed
Good news I guess but also I just hate waiting but the surgery has been postponed. We are now top of the waiting list and they will call us when a surgery slot becomes free. Earliest next Tuesday or Thursday.
What is great news is that Summer is eligible for the much safer surgical solution. Its called EVT and you can read about it here. Its says only about a quarter of patients are eligible for this so for once the long odds are working for us!!
What is great news is that Summer is eligible for the much safer surgical solution. Its called EVT and you can read about it here. Its says only about a quarter of patients are eligible for this so for once the long odds are working for us!!
Tuesday, 3 July 2007
"Summer Time"
We got in for the scan yesterday when one of the first things they said to us was "Did they tell you you will probably be staying the night?" "No" I replied, so I am now sat on the couch writing after sleeping in trousers and a shirt. I probably smell as well but Kathy's being nice as it was me that had the pleasure of another sleepless night on Ward E39.
This MRI was a little different yesterday as they had to sedate Summer to stop her wriggling all the time and ruining the pictures. I'm not surprised they wriggle as its very loud in there. To sedate her they have to give some nasty medicine which before hand they told us was always difficult to give as it tasted so bad. most babies spit it out and cause all sorts of trouble. Of course Summer being a little different to most sucked the medicine out of the syringe before they had a chance to push it in. She will eat just about anything we are finding out!!
The MRI results showed that, as we had thought, the fluid on her brain has increased but not by a huge amount. They have decided to operate either this Thursday or the following Tuesday to relieve this pressure build up before it gets any worse.
They told us there is a choice of procedure. The obvious one was the shunt but this has alot of complications with it being a pretty major operation with a high risk of infection. The other is putting a hole somewhere which provides another path for the fluid to flow back down the spine. This is simpler and without having to put any hardware in the head the infection risk is much lower however the op is riskier and the success rate is only about 60%. Also this is not suitable for every baby depending on the location of some pretty crucial veins and artery's. We will find out today which option they are going for, We hope she will be suitable for the procedure without the shunt.
We have been getting alot of information on all this from the ASBAH (Association of Spina Bifida and Hydrocephalus) website, www.asbah.org.
I must fill you all in on my weekend adventures as well. I flew up to a good friends wedding on Saturday in Glasgow just to arrive a couple of hours before the terrorists drove into the airport. Of course my return flight was cancelled but I was lucky enough to get a lift back with the very generous Bride and Groom in their car. We drove from Glasgow all the way down to Luton, then Stanstead then back up to Leicester. I'm considering my self lucky however as I'm sure there are some still stuck there as I write!
So we will be back in hospital for about a week from this Thursday probably. Please pray that Summer will get the simpler operation and that it will be a success. And of course that her brain can grow and she can develop as well as possible. We have decided that all her mile stones instead of happening at 3 months or 5 months will all happen in "Summer Time".
Finally, it is amazing to see all the other family's there and how they cope. 1 family hasn't left since we were first there, another is on '3 weeks in, 1 week at home' cycle, another has been going there regularly for 5 years!! Yet still the ward is such a happy place to be and the staff are all great. Please pray they will continue to help so many families in a much more desperate situation than ours.
This MRI was a little different yesterday as they had to sedate Summer to stop her wriggling all the time and ruining the pictures. I'm not surprised they wriggle as its very loud in there. To sedate her they have to give some nasty medicine which before hand they told us was always difficult to give as it tasted so bad. most babies spit it out and cause all sorts of trouble. Of course Summer being a little different to most sucked the medicine out of the syringe before they had a chance to push it in. She will eat just about anything we are finding out!!
The MRI results showed that, as we had thought, the fluid on her brain has increased but not by a huge amount. They have decided to operate either this Thursday or the following Tuesday to relieve this pressure build up before it gets any worse.
They told us there is a choice of procedure. The obvious one was the shunt but this has alot of complications with it being a pretty major operation with a high risk of infection. The other is putting a hole somewhere which provides another path for the fluid to flow back down the spine. This is simpler and without having to put any hardware in the head the infection risk is much lower however the op is riskier and the success rate is only about 60%. Also this is not suitable for every baby depending on the location of some pretty crucial veins and artery's. We will find out today which option they are going for, We hope she will be suitable for the procedure without the shunt.
We have been getting alot of information on all this from the ASBAH (Association of Spina Bifida and Hydrocephalus) website, www.asbah.org.
I must fill you all in on my weekend adventures as well. I flew up to a good friends wedding on Saturday in Glasgow just to arrive a couple of hours before the terrorists drove into the airport. Of course my return flight was cancelled but I was lucky enough to get a lift back with the very generous Bride and Groom in their car. We drove from Glasgow all the way down to Luton, then Stanstead then back up to Leicester. I'm considering my self lucky however as I'm sure there are some still stuck there as I write!
So we will be back in hospital for about a week from this Thursday probably. Please pray that Summer will get the simpler operation and that it will be a success. And of course that her brain can grow and she can develop as well as possible. We have decided that all her mile stones instead of happening at 3 months or 5 months will all happen in "Summer Time".
Finally, it is amazing to see all the other family's there and how they cope. 1 family hasn't left since we were first there, another is on '3 weeks in, 1 week at home' cycle, another has been going there regularly for 5 years!! Yet still the ward is such a happy place to be and the staff are all great. Please pray they will continue to help so many families in a much more desperate situation than ours.
Subscribe to:
Posts (Atom)