So. I feel a bit crap for whining about last week now...
Sunday night, snotty Nate had a bottle. Snotty Nate was sick. Snotty Nate ended up travelling by ambulance to the RVI ( which, incidentally, took 23 mins to arrive). He has a virus, and a bacterial infection, and may have aspirated some of his sick, though they aren't sure. His oxygen levels went scary, and our valve for oxygen only goes up to 1.5, so when even that wasn't helping we were extremely panicked, especially as the ambulance seemed to be taking forever.
He has pulled round quite quickly, and the drs are satisfied it's a one off even if it is aspiration. They mentioned the trace done on Friday to prove he was ok enough to wean off oxygen showed that yes he was, and we could continue when he has recovered from this illness. So that's good anyway. Nurses and drs lovely as usual. Nate has lots of "aunties" on the ward.
Thea has coped extremely well with this hospital stay. The normality of the school day has clearly helped. Nate has bought her Xmas presents during his hospital stay- 2 books by the author Rebecca Elliott about a brother and sister, the sister is disabled and needs frequent hospital stays. Many other presents have been bought online during this stay. The practicalities of life can't stop because we are stuck in here.
Im sitting here in his room, blogging, waiting for his dad and sis to arrive. :)
Escaping hopefully tomorrow :)
the kids
Thursday, 24 November 2011
Thursday, 17 November 2011
A week of ups and downs
Im finding things hard at the minute. I should have realised that mondays high would lead into a downward spiral.
The week peaked much too soon.
Monday- the feeding clinic.
We discussed nates feeding and everything seemed very positive. I explained how his volumes of solid food had increased and he was eating with enthusiasm. The dr and salt decided against a video fluoroscopy based on my descriptions of Nate feeding, felt I should be braver and try lumpier food, and that we should start to encourage safe smelly finger foods like wotsits and quavers. I left feeling scared, but in a good way and these were all due to progress.
In the afternoon I met with a lady from the medical priority housing team. She made me feel like they would help, and do it quickly. ( a phone call from portage to explain our situation helped). A really positive day :)
Tuesday
Tuesday began with an oxygen fiasco. The delivery turned up as my mam was taking Thea to school, and I was sorting Nate for his hospital appt regarding surgery for his testes. The oxygen men couldnt fit our valve on the new company's cylinders, after much talking on phone decided to come back that evening. In the meantime I had to cancel the hospital appt ( rearranged for January!)
Community nurse visit- little weight gain :(
Tuesday ended with Theas parents evening. I am a very proud mammy. She's doing fantastic especially her reading and writing :)
Wednesday
After a twisty teething night, the stroppy boy had sensory group and then our own salt visit. It was a disaster. Oxygen shelf fell off buggy getting to group ended up on hands and knees in the street sorting it. Then nate ( who after Monday has decided he just wants milk not solid), wouldn't eat for the salt. I felt like a total liar. We also need to start getting Nate to take water from a bottle or cup. Another battle. Also he needs to up his fortini milk uptake ( which he struggles with) so we are having to try ther teats/ bottles.
Thursday
Physio went rubbish ( thats a technical term). Nate wouldn't do half the things he could do 2 weeks ago and kept trying to go to sleep ( avoidance). He's also starting to sound congested and the community nurses are tracing his oxygen sats for 4 hrs tomorrow to see if we can turn his oxygen down and get back to weaning ( these were the conditions as they didn't want to carry on weaning his oxygen till after the winter). So I can't see that going well.
It probably doesn't seem much to you as you read this. But each thing for me is an emotional roller coaster, up and down, up and doooowwwwwwnnnnn. I feel there is such a lot of pressure on me to not "fix" but "help" Nate developmentally. I need to do physio with him everyday. I need to improve his feeding, get him drinking water and so on.
Its a full time job. Everything he struggles with I feel is down to me, that I haven't made enough effort. We are getting a specialist to assess EXACTLY what he can see (not much) and show me how to work with him to improve his sight. I'm terrified that they will confirm, as I suspect, that he can't see, which I know they will. And I wonder when I will fit in all this addition stimulation. Feel a bit worn out. And it's only Thursday x
The week peaked much too soon.
Monday- the feeding clinic.
We discussed nates feeding and everything seemed very positive. I explained how his volumes of solid food had increased and he was eating with enthusiasm. The dr and salt decided against a video fluoroscopy based on my descriptions of Nate feeding, felt I should be braver and try lumpier food, and that we should start to encourage safe smelly finger foods like wotsits and quavers. I left feeling scared, but in a good way and these were all due to progress.
In the afternoon I met with a lady from the medical priority housing team. She made me feel like they would help, and do it quickly. ( a phone call from portage to explain our situation helped). A really positive day :)
Tuesday
Tuesday began with an oxygen fiasco. The delivery turned up as my mam was taking Thea to school, and I was sorting Nate for his hospital appt regarding surgery for his testes. The oxygen men couldnt fit our valve on the new company's cylinders, after much talking on phone decided to come back that evening. In the meantime I had to cancel the hospital appt ( rearranged for January!)
Community nurse visit- little weight gain :(
Tuesday ended with Theas parents evening. I am a very proud mammy. She's doing fantastic especially her reading and writing :)
Wednesday
After a twisty teething night, the stroppy boy had sensory group and then our own salt visit. It was a disaster. Oxygen shelf fell off buggy getting to group ended up on hands and knees in the street sorting it. Then nate ( who after Monday has decided he just wants milk not solid), wouldn't eat for the salt. I felt like a total liar. We also need to start getting Nate to take water from a bottle or cup. Another battle. Also he needs to up his fortini milk uptake ( which he struggles with) so we are having to try ther teats/ bottles.
Thursday
Physio went rubbish ( thats a technical term). Nate wouldn't do half the things he could do 2 weeks ago and kept trying to go to sleep ( avoidance). He's also starting to sound congested and the community nurses are tracing his oxygen sats for 4 hrs tomorrow to see if we can turn his oxygen down and get back to weaning ( these were the conditions as they didn't want to carry on weaning his oxygen till after the winter). So I can't see that going well.
It probably doesn't seem much to you as you read this. But each thing for me is an emotional roller coaster, up and down, up and doooowwwwwwnnnnn. I feel there is such a lot of pressure on me to not "fix" but "help" Nate developmentally. I need to do physio with him everyday. I need to improve his feeding, get him drinking water and so on.
Its a full time job. Everything he struggles with I feel is down to me, that I haven't made enough effort. We are getting a specialist to assess EXACTLY what he can see (not much) and show me how to work with him to improve his sight. I'm terrified that they will confirm, as I suspect, that he can't see, which I know they will. And I wonder when I will fit in all this addition stimulation. Feel a bit worn out. And it's only Thursday x
Monday, 7 November 2011
The last few and next few weeks..
In brief I shall attempt to summarise things-
Positives-
Got ormesa bug buggy for natie. It's very smart.
Got brio zento car seat
Nates mouth has healed fab and his swallowing is much improved- presumably with the extra saliva
Good physio session.
Spent more time with lovely daughter.
Negatives- the shelf for oxygen on bug pops off going out of my house. Not very helpful and the rep hasn't rang back.
Wondered why naties head was wandering off in the car seat- the cosy soft head support was missing and I had forgot we were supposed to get one.
CDT meeting tomorrow- always a depressing look at what he can't do
Feeding clinic next week- hate it when they try to watch him eat. He is not a monkey in the zoo and wont perform
Testes surgery appt- well its surgery got to stick it in the negatives
Paed has decided we cant continue oxygen weaning till after the winter-Yes I know it makes sense, but it's still disappointing.
Lovely daughter has been trying my patience- resulting in new reward chart
Yes I think that covers most of it
UPDATE
cdt meeting was not as scary as expected- the physio ( who isn't the one who comes to the house) was really pleased with the difference in him. And she never normally says anything vaguely positive! The SALT lady is coming out next week to watch him eat, but she and the dietician ( who rang after the meeting) are very pleased with his weight gain and length. The paediatrician at the meeting just watched Nate and said nothing. I think it was a case of because she doesn't have a diagnosis, feels its best to be non committal. Fair enough.
Positives-
Got ormesa bug buggy for natie. It's very smart.
Got brio zento car seat
Nates mouth has healed fab and his swallowing is much improved- presumably with the extra saliva
Good physio session.
Spent more time with lovely daughter.
Negatives- the shelf for oxygen on bug pops off going out of my house. Not very helpful and the rep hasn't rang back.
Wondered why naties head was wandering off in the car seat- the cosy soft head support was missing and I had forgot we were supposed to get one.
CDT meeting tomorrow- always a depressing look at what he can't do
Feeding clinic next week- hate it when they try to watch him eat. He is not a monkey in the zoo and wont perform
Testes surgery appt- well its surgery got to stick it in the negatives
Paed has decided we cant continue oxygen weaning till after the winter-Yes I know it makes sense, but it's still disappointing.
Lovely daughter has been trying my patience- resulting in new reward chart
Yes I think that covers most of it
UPDATE
cdt meeting was not as scary as expected- the physio ( who isn't the one who comes to the house) was really pleased with the difference in him. And she never normally says anything vaguely positive! The SALT lady is coming out next week to watch him eat, but she and the dietician ( who rang after the meeting) are very pleased with his weight gain and length. The paediatrician at the meeting just watched Nate and said nothing. I think it was a case of because she doesn't have a diagnosis, feels its best to be non committal. Fair enough.
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