Nathan's oxygen has been turned off for two nights now. The respiratory specialist was pleased with his overnight oximetry test last Monday night. The plan is to now have it off for a month and see how he is going. Hopefully he will stay well and cope without it. I think I will feel more confident after a week of him being in air. It has helped that he has been in air for his day sleeps for a little while now. So I know that he can sleep comfortably in air.
I am so looking forward to cleaning out his room and getting rid of the tanks, tubes and tapes! All plans to set up his room as I woud have liked went out the window when he needed the oxygen as it takes up space. We still have a feeding pump on standby for when he doesnt cope with bolous feeds. It will be nice at some stage to be able to get rid of that too.
Thursday, December 18, 2008
Sunday, December 14, 2008
Collingwood Children's Farm
Was so nice to come back here again. Last time we were here Nathan was sick. He was wanting to chase the ducks and chickens around the yard. A poor guinea pig got a good squeeze. Nathan even milked a cow this visit. The lady helping said "He's got a strong grip!". A few squirts went into the bucket.
It was good to go with Aurora Early Intervention and learn a few more Auslan signs. I now know Auslan for farm, farmer and guinea pig!! All useful in everyday suburban life.
It was good to go with Aurora Early Intervention and learn a few more Auslan signs. I now know Auslan for farm, farmer and guinea pig!! All useful in everyday suburban life.
A trip to the zoo my darling
We took nathan to the zoo last week. It was so nice to go the day after his oxygen test. It was like a little celebration for us.
He loved the monkeys, orangatans an the butterflies. He wasn't overly interested in some of the other large animals. He seemed more interested in the fencing and landscaping! Perhaps it was because the mountain gorillas were in their cage due to cleaning, the lions were sleeping, the elephants were not running around and the giraffes were standing chewing on grass. The monkeys were swinging, the orangatans were playing and the butterflies flapped around and one even landed on daddy's shoulder.
It was a good morning out. A couple of hours were enough for him. We hot footed it around the zoo. We bypassed the reptiles and aussie animals but we saw most other things. We enjoyed it.
He loved the monkeys, orangatans an the butterflies. He wasn't overly interested in some of the other large animals. He seemed more interested in the fencing and landscaping! Perhaps it was because the mountain gorillas were in their cage due to cleaning, the lions were sleeping, the elephants were not running around and the giraffes were standing chewing on grass. The monkeys were swinging, the orangatans were playing and the butterflies flapped around and one even landed on daddy's shoulder.
It was a good morning out. A couple of hours were enough for him. We hot footed it around the zoo. We bypassed the reptiles and aussie animals but we saw most other things. We enjoyed it.
Fundoplication
Respiratory Doctor is keen for us to have Nathan booked in ASAP for a fundoplication. This where they take some stomach and tighten it around the oesophageous. Hopefully it will stop his ongoing reflux and vomiting.
I told him how we were feeding him such small amounts and the frequency and he asked me if we were doing this to avoid a fundo?? I guess we are doing what we can to avoid it. It is starting to seem that it may be a good option but we're not 100% sure yet. It is hard to know whether to wait and see if as he grows he will improve or to bite the bullet and get it done. We don't want him to have surgery if there is another way. It would be nice to wake up tomorrow and it's all better. I was a bit upset when the doctor was suggesting this as we have had such a good few months and I really didn't want to think about surgery and recovery time. It was a bit of a kick to how positive I was feeling about things. Have to try and look at this as a positive thing to improve his situation with his reflux.
Waiting for the gastro specialist to call us and have a chat again. We were booked to see him in March but that is not soon enough apparently.
I told him how we were feeding him such small amounts and the frequency and he asked me if we were doing this to avoid a fundo?? I guess we are doing what we can to avoid it. It is starting to seem that it may be a good option but we're not 100% sure yet. It is hard to know whether to wait and see if as he grows he will improve or to bite the bullet and get it done. We don't want him to have surgery if there is another way. It would be nice to wake up tomorrow and it's all better. I was a bit upset when the doctor was suggesting this as we have had such a good few months and I really didn't want to think about surgery and recovery time. It was a bit of a kick to how positive I was feeling about things. Have to try and look at this as a positive thing to improve his situation with his reflux.
Waiting for the gastro specialist to call us and have a chat again. We were booked to see him in March but that is not soon enough apparently.
Overnight Air Test
We had a great overnight air test. This was the first night in about two years that Nathan has been all night without oxygen (first intentional night- have had a few mishaps where we forgot to turn the tank on. Ooops!). He went really well. The saturation monitor hardly beeped and when it did it was mostly due to us not having the setting for his heart rate low enough. He only had two times that I was aware of where he dropped a bit low and I think it was mostly due to his postion. I was so pleased that we didn't need to put the oxygen on him overnight. It was a much better result than I expected.
From here we need to wait for the specialist to call after he has seen the results. If he is pleased then we will take him off for a month and se how he goes. If he loses weight or doesn't seem himself then we will do another test or put it back on. If all is good we will check in another month.
From here we need to wait for the specialist to call after he has seen the results. If he is pleased then we will take him off for a month and se how he goes. If he loses weight or doesn't seem himself then we will do another test or put it back on. If all is good we will check in another month.
my oh my
It's been a while since I've posted here.
Since the last post:
The bottom shuffle has a new look. This new and improved method is getting the little man around the house. He is now exploring and has discovered the box of lemons in the kitchen. he thinks they are great for throwing around. hence the odd impromptu game of cricket. I'm the batter with the wrapping paper for my bat and Nathan is the bowler!
Nathan is currently learning how to negotiate stairs. We have one little one into our back room which he can turn a little and plop down without too much drama. As for a greater drop or multiple stairs that will need a bit more practice.
As he is moving around more we are discovering that he has a great interest for heading out the door to explore the woder world. Need to make sure I shut the door behind me or assist him out to a safe. It's a great thing.
His little legs are now on the move and he is wanting to walk with assistnace all over the place. No more sitting contently on our knees. His soldier legs are starting to bend a little.
We were all over the gastro in a relatively short time. Nathan's feeds have taken a long time to return to what they were prior to becoming sick. We have just got back to 50ml bolus feed every 45 minutes. So we are down to 12 milk feeds a day rather than 15. Still need to take it slowly to stretch his tummy. Seems we are pushing the limits at the moment but should settle soon. He had a few unexpected projectiles this morning due to a build up of air I think. All fun.
Since the last post:
The bottom shuffle has a new look. This new and improved method is getting the little man around the house. He is now exploring and has discovered the box of lemons in the kitchen. he thinks they are great for throwing around. hence the odd impromptu game of cricket. I'm the batter with the wrapping paper for my bat and Nathan is the bowler!
Nathan is currently learning how to negotiate stairs. We have one little one into our back room which he can turn a little and plop down without too much drama. As for a greater drop or multiple stairs that will need a bit more practice.
As he is moving around more we are discovering that he has a great interest for heading out the door to explore the woder world. Need to make sure I shut the door behind me or assist him out to a safe. It's a great thing.
His little legs are now on the move and he is wanting to walk with assistnace all over the place. No more sitting contently on our knees. His soldier legs are starting to bend a little.
We were all over the gastro in a relatively short time. Nathan's feeds have taken a long time to return to what they were prior to becoming sick. We have just got back to 50ml bolus feed every 45 minutes. So we are down to 12 milk feeds a day rather than 15. Still need to take it slowly to stretch his tummy. Seems we are pushing the limits at the moment but should settle soon. He had a few unexpected projectiles this morning due to a build up of air I think. All fun.
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