So we were in toronto all day yesterday (traffic was awful esepcially on the way there)
well the lower part is still collapsed. the uppser part has some air entry now, which is a good sign.
they have basically deicded that while she shows no symptoms..can run around fine, isn't sick, etc.. then they arent going to do anything.
most likly in the future she will lose the lung, but they are going to keep it for as long as possible.
so right now I am just gonna try and let go, and just not worry about it.
Friday, June 18, 2010
Tuesday, June 1, 2010
We're coming home!!
Lilia's has been off oxygen for most of the day today. she only desats down to the low 80's when doing ehr physio and bounes back up to low to mid 90's after..so thats good enough for her to come home yay! right now we are jsut waiting on an echo then we can go.
We talked to the chest specialists this morning. they want to try and see if we can bring that lung back up (it is still collpased...apparently she functions well with a collpased lung) so heavy oral antibioticsm a lot of chest pysio (4 times a day) and then when we come back for transplant clinic (on the 17th) we will do another x ray. if its not any better then we will plan the next step. Which is most likly to remove the lung.
We talked to the chest specialists this morning. they want to try and see if we can bring that lung back up (it is still collpased...apparently she functions well with a collpased lung) so heavy oral antibioticsm a lot of chest pysio (4 times a day) and then when we come back for transplant clinic (on the 17th) we will do another x ray. if its not any better then we will plan the next step. Which is most likly to remove the lung.
Monday, May 31, 2010
Monday
Lilia's culture grew H infulenza, so now shes in isolation. unable to go to the playroom or for walks which sucks. But at least she got out once before they found this.
They are having issues weaning her O2. The PT has come in and is doing chest pysio and breahting exercuises in hopes to cough up as much as the mucus as possible, to clear her lungs. We will also have to start doing this at home too, even when shes not sick to try and keep her left side as clear as possible.
As soon as the O2 is off, she can go home. hope to hear from ENT about their plans asap.
They are having issues weaning her O2. The PT has come in and is doing chest pysio and breahting exercuises in hopes to cough up as much as the mucus as possible, to clear her lungs. We will also have to start doing this at home too, even when shes not sick to try and keep her left side as clear as possible.
As soon as the O2 is off, she can go home. hope to hear from ENT about their plans asap.
Sunday, May 30, 2010
Sunday update
So Lilia was extubated early this morning. Without oxygen her sats are 89/90, with they are 99/100. So it looks like she'll need O2 for a little while at least. but shes so much happier with the tube gone.
The plan is for her to be out of the CCU tomorrow and up on 4D, then hopefully go home in a couple days.
her left lung is better now that they got a lot of the muscus out of it, and shes coughing well rught now to get the rest out. Her lower part of the left lung is no good anymore, and is jsut a pool of infection so they want to remove it. However they want to do it when shes in top shape so they are looking at doing it in a few months, since she has coped pretty good without the use of that part anyways.
the stent, they arnt sure what to do about it since there isnt much they can do without risking her life. They might put a balloon in and try and make it bigger, but its risky so they are gonna think on it for a few months, and see what happens.
She should be stable enough to go home in a few days (as long as nothing else happens) the stent shouldnt move anymore, not that soon anyways...so she should be ok at home. Just soemthing will have to been done in the near future to fix this.
The plan is for her to be out of the CCU tomorrow and up on 4D, then hopefully go home in a couple days.
her left lung is better now that they got a lot of the muscus out of it, and shes coughing well rught now to get the rest out. Her lower part of the left lung is no good anymore, and is jsut a pool of infection so they want to remove it. However they want to do it when shes in top shape so they are looking at doing it in a few months, since she has coped pretty good without the use of that part anyways.
the stent, they arnt sure what to do about it since there isnt much they can do without risking her life. They might put a balloon in and try and make it bigger, but its risky so they are gonna think on it for a few months, and see what happens.
She should be stable enough to go home in a few days (as long as nothing else happens) the stent shouldnt move anymore, not that soon anyways...so she should be ok at home. Just soemthing will have to been done in the near future to fix this.
Saturday, May 29, 2010
Saturday update
As of 3pm saturday.
So we saw Dr.Forte reccently (the doc who put the stent in so long ago) and this is his plan for now....
extubate her and let her cough up all the mucus on her own. Watch her for 3-4 days and see how she does.
If she handles extubation and if the lung gets better then we might just leave her. If she doesnt do well then we will do a rigid bronch to have a look at the stent. And then either put a balloon in to try and make the stent bigger, or cut a piece of her lung out.
So basically for the next few days its a wait and see game. Fun.
So we saw Dr.Forte reccently (the doc who put the stent in so long ago) and this is his plan for now....
extubate her and let her cough up all the mucus on her own. Watch her for 3-4 days and see how she does.
If she handles extubation and if the lung gets better then we might just leave her. If she doesnt do well then we will do a rigid bronch to have a look at the stent. And then either put a balloon in to try and make the stent bigger, or cut a piece of her lung out.
So basically for the next few days its a wait and see game. Fun.
Lilia admitted to PCCU/CCCU
Summary of events
On wensday Lilia went to the hospital in London to have her G tube track dialted. Once she was asleep they had a hard time getting her to breathe and so they did an x ray after the procudure. they found that her left long was collapsed. Although she looked a lot better then her x ray showed they decided to intubate her and admit her to the PCCU (paedtric critical care unit) there they did a few bronchs (where they put a camera down the tube and suction out the gonk thats in her lungs) they found a lot of secreations. Did swabs to check for virus's.
The swabs came back negative after 24 hours. The lastbronch they did on friday showed that the stent (that she had placed in her lung as an infant) has moved and is blocking her air way. they decided to send her by helicopter to sick kids in toronto. Wehre they are more capable to handle her. Since this is where they put the stent in in the first place.
Right now the docs here at sick kids are unsure if they can even do suregery to fix the problem. They are looking at her CT scans and x rays but still seem unsure on what to do about this problem.
Lilia is getting pretty pissed off with how much they are bugging her. SDhe is on morphine though, so as long as they don't suction her shes ok.
I'll update this blog as much as possible. Since they have computers in the PICU now.
On wensday Lilia went to the hospital in London to have her G tube track dialted. Once she was asleep they had a hard time getting her to breathe and so they did an x ray after the procudure. they found that her left long was collapsed. Although she looked a lot better then her x ray showed they decided to intubate her and admit her to the PCCU (paedtric critical care unit) there they did a few bronchs (where they put a camera down the tube and suction out the gonk thats in her lungs) they found a lot of secreations. Did swabs to check for virus's.
The swabs came back negative after 24 hours. The lastbronch they did on friday showed that the stent (that she had placed in her lung as an infant) has moved and is blocking her air way. they decided to send her by helicopter to sick kids in toronto. Wehre they are more capable to handle her. Since this is where they put the stent in in the first place.
Right now the docs here at sick kids are unsure if they can even do suregery to fix the problem. They are looking at her CT scans and x rays but still seem unsure on what to do about this problem.
Lilia is getting pretty pissed off with how much they are bugging her. SDhe is on morphine though, so as long as they don't suction her shes ok.
I'll update this blog as much as possible. Since they have computers in the PICU now.
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