To start with I've already realised I missed suction cathetas and suction machine off my last post's list! Arggh.
So nates been snotty. Making funny noises, again, and just generally worrying the pants off me, again. Up to the hospital we went. Notes weren't avaiable so I had to take the drs through the whole story of Nate. Again. He is described as having "complex needs" and his story in long and complicated. It is frustrating having to relate things over and over again but it's an awful lot of pressure on me not to forget something vitally important. I wish they kept a database of the "basics" on their computer system- just tests done, professionals involved, that sort of thing. I have come to the conclusion that I need to summarise his history, keep it updated, and have a copy at all times. Is this over the top? I'm not sure but that's my plan.... When I get a chance! It was with great relief that when in hospital for a repeat urine test yesterday nates paediatrician spotted us and took over our care. She knows as much as we do about Nate. I explained my frustration and general annoyance at nates surgeon and she put my mind at rest about everything and apologised for his attitude and said that along with nates neurologist they were monitoring his head and had no concerns.
Equipment is a nightmare. You don't know what's available until to tell all and sundry how you can't manage, or even better- something isn't safe. But still you end up waiting months and months. We have a meeting with some reps and our OT and physio in a few weeks. They are really trying to help but nothing can be sorted quickly. We are desperate for a car seat and supportive pushchair. Fingers crossed they have something suitable. My worry is that this pushchair thing won't fit in my boot :( so I doubt it will be helpful at all. And In addition I know it will be very special needsy with head support and padding. I know my child is different but these things bring even greater attention to the differences. I know this is
something I need to get used to but I won't pretend it's easy. We get the staring already.
the kids
Friday, 29 July 2011
Wednesday, 27 July 2011
Planning for our hols
So we are going on holiday in a few weeks. To centre parcs. They looked after us well last November ( with the exception of 4 steps up to the lodge that is). I'm hoping Nate stays well and the weather is fair but not too hot ( don't think thats going to be a worry).
If you think planning for a family holiday is difficult try doing it with a child with "complex needs"...we've had to sort/ take the following..
- oxygen concentrator will be there when we arrive ( thank you helpful oxygen company)
- sats monitor
-ventilator
- humidifier
-mask and tubing for ventilator
- spare of the above
- spare nasal canulae
- box of high calorie baby milk
- tape and duoderm for cannula
- antibiotics to prevent urine infections
- gaviscon for reflux
- oxygen cylinders ( portable)
- calpol and ibuprofen ( just in case!)
- travel cot
- pushchair
Things we can't manage to take include his special seat and his bath support.
So I'm really panicking that I will forget something vitally important. Hopefully the above list will help. I'm looking at it thinking anything else?
We also need to consider a plan in case of emergencies, or equipment breakages.
We really need a break. To unwind, de stress, and all those other words that rarely happen. Thea needs time to have fun ( although im not convinced by my husband booking her in for mini cross bowing ???? She's 4!) Our break needs to be about thea having fun, and getting the attention she needs. She is a special sibling after all.
When I look at the list of things for Nate I wonder how anyone with a child with complex needs manages to have a holiday at all. We are lucky, this is a treat from the inlaws who are also coming with us. Which means.... Me and Michael.....might actually.......have time to ourselves! What? I hear you cry, surely not?
If you think planning for a family holiday is difficult try doing it with a child with "complex needs"...we've had to sort/ take the following..
- oxygen concentrator will be there when we arrive ( thank you helpful oxygen company)
- sats monitor
-ventilator
- humidifier
-mask and tubing for ventilator
- spare of the above
- spare nasal canulae
- box of high calorie baby milk
- tape and duoderm for cannula
- antibiotics to prevent urine infections
- gaviscon for reflux
- oxygen cylinders ( portable)
- calpol and ibuprofen ( just in case!)
- travel cot
- pushchair
Things we can't manage to take include his special seat and his bath support.
So I'm really panicking that I will forget something vitally important. Hopefully the above list will help. I'm looking at it thinking anything else?
We also need to consider a plan in case of emergencies, or equipment breakages.
We really need a break. To unwind, de stress, and all those other words that rarely happen. Thea needs time to have fun ( although im not convinced by my husband booking her in for mini cross bowing ???? She's 4!) Our break needs to be about thea having fun, and getting the attention she needs. She is a special sibling after all.
When I look at the list of things for Nate I wonder how anyone with a child with complex needs manages to have a holiday at all. We are lucky, this is a treat from the inlaws who are also coming with us. Which means.... Me and Michael.....might actually.......have time to ourselves! What? I hear you cry, surely not?
Wednesday, 20 July 2011
Tact and sensitivity are good characteristics for a surgeon!
So today did not go well.
Nate had an appointment for his pre-op assessment regarding the removal of a ranula from his mouth ( a lump caused by a blocked salivary gland). He has had this lump since birth, some days it's bigger than others. The key problem is that it makes his tongue curl to one side and the feeding clinic drs said it wouldn't be helping his feeding. They pretty much talked me into the surgery as it may improve his feeding, but will initially hinder it as he will have to learn feeding skills again, therefore sooner is better than later for the op. My concerns about the op hinge on the need for a general anaesthetic and the associated risks which increase for Nate with his respiratory issues.
The surgeon began by asking what Nates problems were. So I had to summarise them. He tried to look in nates mouth with little success and then started bombarding me with questions about his head and face. Did I realise his head was unusually shaped? That his face was asymmetrical? Had anyone talking to me about "sorting his head and face out to make it more normal?" I pointed out that I was well aware of his unusual features but away there they required "sorting" . The surgeon replied with much hand waving that he had corrected many of "these prolems" indicating Nate but that our hospital didn't do such procedures and that we would have to go to Leeds or Birmingham. I had to push for why such things were needed and he told me that his face could struggle to grow or he could develop hydrocephalus.
Then the focus returned to our actual reason for being there- the ranula. He asked why I wanted it removed.I said I hadn't but had been encouraged to have it done. Then Nate started really smiling loads and the surgeon managed to see it, oh yes, he said, that needs to come out. So the surgery itself isn't straightforward, a nerve needs to be avoided, it could return, and a gland in his neck might need removing at a later date. He needs a general anaesthetic too. So he will need monitoring after the op, the surgeon made it clear that was someone else's problem. There were a few other insensitive comments made but my head is whirling and I can't remember the rest.
I wasn't particularly happy about the attitude, and condescending nature of the surgeon. Had no idea my sons head and face needed "sorting" and basically left feeling down and a bit angry if I'm honest.
Nate had an appointment for his pre-op assessment regarding the removal of a ranula from his mouth ( a lump caused by a blocked salivary gland). He has had this lump since birth, some days it's bigger than others. The key problem is that it makes his tongue curl to one side and the feeding clinic drs said it wouldn't be helping his feeding. They pretty much talked me into the surgery as it may improve his feeding, but will initially hinder it as he will have to learn feeding skills again, therefore sooner is better than later for the op. My concerns about the op hinge on the need for a general anaesthetic and the associated risks which increase for Nate with his respiratory issues.
The surgeon began by asking what Nates problems were. So I had to summarise them. He tried to look in nates mouth with little success and then started bombarding me with questions about his head and face. Did I realise his head was unusually shaped? That his face was asymmetrical? Had anyone talking to me about "sorting his head and face out to make it more normal?" I pointed out that I was well aware of his unusual features but away there they required "sorting" . The surgeon replied with much hand waving that he had corrected many of "these prolems" indicating Nate but that our hospital didn't do such procedures and that we would have to go to Leeds or Birmingham. I had to push for why such things were needed and he told me that his face could struggle to grow or he could develop hydrocephalus.
Then the focus returned to our actual reason for being there- the ranula. He asked why I wanted it removed.I said I hadn't but had been encouraged to have it done. Then Nate started really smiling loads and the surgeon managed to see it, oh yes, he said, that needs to come out. So the surgery itself isn't straightforward, a nerve needs to be avoided, it could return, and a gland in his neck might need removing at a later date. He needs a general anaesthetic too. So he will need monitoring after the op, the surgeon made it clear that was someone else's problem. There were a few other insensitive comments made but my head is whirling and I can't remember the rest.
I wasn't particularly happy about the attitude, and condescending nature of the surgeon. Had no idea my sons head and face needed "sorting" and basically left feeling down and a bit angry if I'm honest.
Tuesday, 19 July 2011
Nate's birth story
I realised ( thanks to looking for blue sky) that i havent put nates birth story on here. The main reason being i found it hard to talk about, and EVERY time i see a doctor with nate i have to go through the whole blooming thing again, and its exhausting! Since nate has turned one, his birth seems further away, and i can talk about it... but i had better start with the pregnancy....
I bled. A lot. And mean a lot! From 5-13 weeks every trip to the loo was a nightmare. He was scanned many times and deemed ok, a sub chorionic haematoma was the cause of the bleeding and i was told not to panic.
The second trimester brought stress of another kind. Horrible stressful work due to school failing ofsted and being in special measures, and lots of strange goings on.
Then i had SPD, and due to ofsted didnt dare have time off so spent 4 weeks dragging my left leg about, crying in pain getting up and sitting down.Wonderful.
Third trimester- i was huge, everyone joked about my ten pound baby. i had to leave work early due to stress. Then, all of a sudden, i didnt seem big anymore. i didnt feel "right" either, it's hard to describe, but I knew something was wrong. He also stopped moving as much so i had several "monitoring sessions" in hospital. naties HR seemed erratic, but it was suggested he kept lying on his cord and I was sent away. Then he changed position. i became convinced at 36 weeks that Nate was breech. my MW assured me this was not the case and that his head was engaged. Hmmmm.
On the 25th june ( 5 days before due date) i had a sudden urge to vacuum... Everywhere. i lifted the bed frame up to get all the dust, i vacuumed the stairs... All over. Then I had a cuppa, went to the loo and my waters had gone.But they didnt look right. they were a funny colour. My husband took me up to hospital. i was told nate was lying in meconium and although i was contracting they couldnt let me proceed at my own pace- i needed a drip.The drip was cranked up every half an hour and i was dealing quite well and i declined anything other
than gas and air. i wasnt given an internal as the MW said she would only do this if i wanted more pain relief, but i didnt want pain relief till i knew how far into labour i was, so we had a bit of a stand off. i bounced on a birthing ball as the pain increased and eventually wanted onto the bed, and fancied some pain relief. During my subsequent internal examination i noticed a look of panic as the mw felt about. She could feel bum not head she said. brilliant. i was 6-7 cm. she went off to find a dr and contractions came thick and fast. a dr confirmed the breechness of natie pie and i was 8-9 cm. they went outside to discuss a plan and i had to get hubbie to drag them back in as i needed to push. i was sped hastily to theatre where they
said they would try to deliver him naturally, but his HR dropped and he ended up being born by emeregency c section.
|
As soon as i saw him i loved him. He was squished up and a purpley colour, legs at a funny angle. he had needed oxygen at birth but they told me he was fine.
I had him in my arms in the recovery room and hubbie left to get our daughter. Nate was quiet. Very quiet. The midwife kept checking on me and took nate to special care to be checked as she was concerned about his "tone". im so stupid i thought they meant his odd colour, but no it was his floppyness. later a dr asked if we had noticed how unusual his features were.......
He spent a week in the incubator and they tested him for everything under the sun. we were told he could live weeks. Then they thought he had a syndrome that would mean a life of 6 months max. we came home after 4 weeks and tried to get on with life. eventually we heard his chromosomes were normal and he could have a specific gene abnormality but they wernt sure what. Hes had mris, ultrasounds, x rays, blood and urine tests, over and over again.
He needs a nippy ventilator at night and oxygen during the day. he has low muscle tone, he is delayed, he has poor/ little eyesight, he has ususual features.
but he is one happy bunny.
I bled. A lot. And mean a lot! From 5-13 weeks every trip to the loo was a nightmare. He was scanned many times and deemed ok, a sub chorionic haematoma was the cause of the bleeding and i was told not to panic.
The second trimester brought stress of another kind. Horrible stressful work due to school failing ofsted and being in special measures, and lots of strange goings on.
Then i had SPD, and due to ofsted didnt dare have time off so spent 4 weeks dragging my left leg about, crying in pain getting up and sitting down.Wonderful.
Third trimester- i was huge, everyone joked about my ten pound baby. i had to leave work early due to stress. Then, all of a sudden, i didnt seem big anymore. i didnt feel "right" either, it's hard to describe, but I knew something was wrong. He also stopped moving as much so i had several "monitoring sessions" in hospital. naties HR seemed erratic, but it was suggested he kept lying on his cord and I was sent away. Then he changed position. i became convinced at 36 weeks that Nate was breech. my MW assured me this was not the case and that his head was engaged. Hmmmm.
On the 25th june ( 5 days before due date) i had a sudden urge to vacuum... Everywhere. i lifted the bed frame up to get all the dust, i vacuumed the stairs... All over. Then I had a cuppa, went to the loo and my waters had gone.But they didnt look right. they were a funny colour. My husband took me up to hospital. i was told nate was lying in meconium and although i was contracting they couldnt let me proceed at my own pace- i needed a drip.The drip was cranked up every half an hour and i was dealing quite well and i declined anything other
than gas and air. i wasnt given an internal as the MW said she would only do this if i wanted more pain relief, but i didnt want pain relief till i knew how far into labour i was, so we had a bit of a stand off. i bounced on a birthing ball as the pain increased and eventually wanted onto the bed, and fancied some pain relief. During my subsequent internal examination i noticed a look of panic as the mw felt about. She could feel bum not head she said. brilliant. i was 6-7 cm. she went off to find a dr and contractions came thick and fast. a dr confirmed the breechness of natie pie and i was 8-9 cm. they went outside to discuss a plan and i had to get hubbie to drag them back in as i needed to push. i was sped hastily to theatre where they
said they would try to deliver him naturally, but his HR dropped and he ended up being born by emeregency c section.
|
As soon as i saw him i loved him. He was squished up and a purpley colour, legs at a funny angle. he had needed oxygen at birth but they told me he was fine.
He needs a nippy ventilator at night and oxygen during the day. he has low muscle tone, he is delayed, he has poor/ little eyesight, he has ususual features.
but he is one happy bunny.
Wednesday, 6 July 2011
Nateosaurus turned one!
So on the 26th June Nate turned one. It was a quiet affair with lots of family and food!
Surprisingly I didn't cry once. I did all that on the 25th. I woke and cried for hours with no control over it at all. We went for a day trip to the farm and had a lovely time, it took my mind off things. When we got home and it got to 5.30, the time my waters broke, all the feelings and memories came back... But then 2 friends turned up and set about decorating my living room with banners and balloons and like a switch, i was fine and became excited about nates birthday.
Birthday morning I was filled with pride at how well my son had done, and what he'd coped with in his first year. His sister opened his gifts and nate enjoyed being the center of attention all day. Eventually conking out quite early.
After everyone had gone myself and the husband celebrated with a glass or 2 of the fizzy stuff.
So not an emotional wreck after all! ( though the run up was a bit dodgy, thankyou lovely friends and family for your help and support!)
Surprisingly I didn't cry once. I did all that on the 25th. I woke and cried for hours with no control over it at all. We went for a day trip to the farm and had a lovely time, it took my mind off things. When we got home and it got to 5.30, the time my waters broke, all the feelings and memories came back... But then 2 friends turned up and set about decorating my living room with banners and balloons and like a switch, i was fine and became excited about nates birthday.
Birthday morning I was filled with pride at how well my son had done, and what he'd coped with in his first year. His sister opened his gifts and nate enjoyed being the center of attention all day. Eventually conking out quite early.
After everyone had gone myself and the husband celebrated with a glass or 2 of the fizzy stuff.
So not an emotional wreck after all! ( though the run up was a bit dodgy, thankyou lovely friends and family for your help and support!)
Saturday, 2 July 2011
A really bad day
I have 2 things I want to blog about, Nates birthday, and the last 24 hrs. But I will begin with the the most recent of the 2.
On Thursday my husband went to our local hospital for some day surgery- the removal of a pilonidal sinus, an infected hair follicle in the bottom region which has been driving him mad for months. His appointment letter just said to turn up at midday, and explained he needed a general anaethetic but had no other info on about the procedure, aftercare, when he could return to work and sports etc. The procedure took a while and as the day surgery centre shut at 8 they basically chucked him out, still bleeding lots, saying the nurse would be out the next day. He had an uncomfortable night, and was still bleeding lots. The nurse came and packed the wound in the afternoon. But shortly after he started bleeding profusely, gushing with blood. At the same time Nate was extremely snotty and making a wheezing/ whooping noise when breathing. It got to the point whereby my husband was going in an ambulance to one hospital and Nate was with me and my dad going to another. I felt torn but as a parent and wife but my kids must always come first. So we sat in the RVI with Nate, while my husband was in the QE. I was kept updated my his mam as he was very weak and unwell. Nate, apart from the noises and snot seemed ok and after being checked by the paeds registrar we were sent home.
Nate has to go on a nippy ventilator at night, and I needed to do that so I still couldnt be with Michael. The hospital decided he needed emergency surgery to tie off blood vessels, and it worked. He had a settled night and came home this morning.
I can't describe my horror and stress at having my husband cover the floor with blood, try to keep my 4 yr old from seeing it, get her sorted for an emergency sleepover and away before the ambulance arrived, and pack bags for Michael and Nate. But I managed......just! Fortunately parents and in laws were avaiable to step in otherwise I really don't know what I would have done.
I felt, and still feel awful that I wasn't with Michael in hospital, but it was never an option to ignore Nates symptoms. Bless the nurse in the rvi who took one look at me and my dad, told us to sit down while she got us both a cuppa :) they got Nate seen and us home as quick as they could when they realised what was going on with Michael. Hopefully Nate fights off this bug he has or we could end up back there.
I really don't like drama. It felt like an episode of casualty, but with more blood!
On Thursday my husband went to our local hospital for some day surgery- the removal of a pilonidal sinus, an infected hair follicle in the bottom region which has been driving him mad for months. His appointment letter just said to turn up at midday, and explained he needed a general anaethetic but had no other info on about the procedure, aftercare, when he could return to work and sports etc. The procedure took a while and as the day surgery centre shut at 8 they basically chucked him out, still bleeding lots, saying the nurse would be out the next day. He had an uncomfortable night, and was still bleeding lots. The nurse came and packed the wound in the afternoon. But shortly after he started bleeding profusely, gushing with blood. At the same time Nate was extremely snotty and making a wheezing/ whooping noise when breathing. It got to the point whereby my husband was going in an ambulance to one hospital and Nate was with me and my dad going to another. I felt torn but as a parent and wife but my kids must always come first. So we sat in the RVI with Nate, while my husband was in the QE. I was kept updated my his mam as he was very weak and unwell. Nate, apart from the noises and snot seemed ok and after being checked by the paeds registrar we were sent home.
Nate has to go on a nippy ventilator at night, and I needed to do that so I still couldnt be with Michael. The hospital decided he needed emergency surgery to tie off blood vessels, and it worked. He had a settled night and came home this morning.
I can't describe my horror and stress at having my husband cover the floor with blood, try to keep my 4 yr old from seeing it, get her sorted for an emergency sleepover and away before the ambulance arrived, and pack bags for Michael and Nate. But I managed......just! Fortunately parents and in laws were avaiable to step in otherwise I really don't know what I would have done.
I felt, and still feel awful that I wasn't with Michael in hospital, but it was never an option to ignore Nates symptoms. Bless the nurse in the rvi who took one look at me and my dad, told us to sit down while she got us both a cuppa :) they got Nate seen and us home as quick as they could when they realised what was going on with Michael. Hopefully Nate fights off this bug he has or we could end up back there.
I really don't like drama. It felt like an episode of casualty, but with more blood!
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