And Avery has a fever!!!!! What do ya know. I have no idea what it is with Tues but he sure is consistent. The thing is, is he sounds very clear in the lungs. So really I have no idea what is up. Could certainly be a virus but with having a central line there is always a concern of an infection. Which I would truely be destraught over. So at this point I am hoping that it is a fluke thing and he will be totally fine in the am and we are back to our somewhat normal life. Ha ha
BTW, we finally got the call for the H1N1 vax for all three kids on thurs. Hmmm the timely could totally sucks.
Tuesday, November 10, 2009
Monday, November 9, 2009
A Very Pleasant Surprise
Number one: Its not a Tues. night. We know for some odd reason Avery prefers Tues. night admissions. LOL
Number two: Avery likes to wait at least 4 wks. in between admission.
He struggled last night on 4 liters of O2. And today he looks fabulous. Gotta love this kid. So we are able to go home and try some new nebs. and hopefully avoid an admission any time soon.
Thanks all.
Number two: Avery likes to wait at least 4 wks. in between admission.
He struggled last night on 4 liters of O2. And today he looks fabulous. Gotta love this kid. So we are able to go home and try some new nebs. and hopefully avoid an admission any time soon.
Thanks all.
Sunday, November 8, 2009
Hanging on By a Thread
Literally....
Avery did not have a good day at all respiratory wise. He spent most of the day getting suctioned and was very anxious over. So by the time bedtime comes he is totally crashing which means he has lost most of his tone and ability to move air well. I have tried bipap the last two night and he is desatting over it. The settings are preprogrammed so he is needing more than the machine can give him right now. So he is on the 4 liters of oxygen which is high for him and the concentrator does not go beyond 5 liters. So these are definetly not good signs.
Tomorrow could go either way. I am seeing the pulm. dr. in the morning and he will either send me to the ER to be admitted or hopefully start IV abx and do a sputom culture. Somehow I think the first scenerio is likely, thus why my bags are already packed. I am suspecting that he is developing pseudomonas in his lungs as typical for him. But we really need to come up with a plan b/c this is only 2wk after ending his last IV antibiotics which would cover him for this and only 1 wk after ending his medicated nebulizer which is every other month. It totally sucks as we will only have been out of the hospital for 2 wks.
So I will let you know what happens. Im so hoping he can go home b/c his chances of getting sick with something else is likely when he is going inpatient.
Avery did not have a good day at all respiratory wise. He spent most of the day getting suctioned and was very anxious over. So by the time bedtime comes he is totally crashing which means he has lost most of his tone and ability to move air well. I have tried bipap the last two night and he is desatting over it. The settings are preprogrammed so he is needing more than the machine can give him right now. So he is on the 4 liters of oxygen which is high for him and the concentrator does not go beyond 5 liters. So these are definetly not good signs.
Tomorrow could go either way. I am seeing the pulm. dr. in the morning and he will either send me to the ER to be admitted or hopefully start IV abx and do a sputom culture. Somehow I think the first scenerio is likely, thus why my bags are already packed. I am suspecting that he is developing pseudomonas in his lungs as typical for him. But we really need to come up with a plan b/c this is only 2wk after ending his last IV antibiotics which would cover him for this and only 1 wk after ending his medicated nebulizer which is every other month. It totally sucks as we will only have been out of the hospital for 2 wks.
So I will let you know what happens. Im so hoping he can go home b/c his chances of getting sick with something else is likely when he is going inpatient.
Saturday, November 7, 2009
Still frustrated!!!!
And tired. This will do for now. Just a side note, Mr. Avery has been struggling respiratory wise today all day and is requiring alot of O2 right now. So please say a little prayer that he can hold off until we see the pulm. dr. on Monday morning.
Bear with Me
I m trying to change to look of the blog. UGH what a pain as I have no idea what I am doing!!!!
Friday, November 6, 2009
I have missed a couple of posts so this one may be long.
On Wed. I took the boys to see a CCS dr. (Complex Care Services) they are basically a primary care team for the hospital. The purpose is to help coordinate the care for complex kids like mine. Thing is they have not been doing much coordinating for us these days. I got a bit fed up so I switched to a different dr. hoping to get some more carry-over. I always dread appts. with both boys as it is sooo much work and just a long intensive day for all, especially them. Mr. Isaiah especially hates going to any appts and will immediately start yawning and "fake retching". He is too smart, huh...
As soon as I got there the nurse informed me that Avery also had another appt. right after but he will be late b/c this appt. is going to be about 2 hrs. UGH. But since we are already there might as well get it out of the way, right...
I really did like this dr. she was very attentive and interested in helping the boys. We started with Avery which ends up taking up 3/4 of the appt. b/c his history is so extensive. It is amazing when you have to give a history of how much this boy has been through and how far he has come. But my focus with him was better coordination after his hospital visits. What happens typically is that b/c Avery is on bipap he goes up to a special (step down ICU)which I really like them and they know him so well. That is not the issue. It is when we leave there, we have nobody to call for concerns or questions. CCS has a specific floor in the hospital and in inpatient/outpatient team but they SHOULD be following Avery since he is one of their pts. So I really stressed this to the dr. b/c it really is useless for him to be part in the service if they dont follow or know him. She agreed that this will be something she will try to coordinate (we will see).
Isaiah was more my issue. I have so much guilt of his issues that tend to take a backseat to Avery's frequent and chronic acute issues. He really has nobody invested in trying to help him with these migranes. They are getting worse and it needs to be taken seriously as it has a huge affect on his quality of life. So we will also see with this part.
Back to Avery. His second appt. was regarding his TPN. So it is no big secret that I am trying to get him off TPN b/c it is just not good long term for his body. It can cause serious liver damage amongst adding to his anemia issues and a slew of other things. While it has been great for him to get him back to a good nutritional point it also has huge risks in terms of additional central line infections which a major problem right now with his limited access. So my first question to the dr. was "How can I get Avery off TPN" He was thrilled that I was open and being aggressive about this b/c they dont want to see any kid on it long term unless necessary.
He then said, "easy all you have to do it get him formula intake (through his j tube) up to at least 500cc a day"
To which I said "easier said then done" but we will try.
So the plan is to increase Avery's feeds to 3cc every three week until we get to at least 30cc per hr. Now it sounds nice and easy and would be great if we can pull it off but only Avery's body will be the judge of that. But on a postive note we were able to take him off TPN for one night a week. Woooohoooo. Because Avery had such a big weight jump this yr. from the TPN he is okay to come off for one day. Realistically he may only get off TPN a few nights but that is progress and I will take it.
Something is definetly going on with Avery as he is quite miserable these days and only happy unless you are in his face 24/7. He is still junkier than normal so not sure if it is anxiety from pain or what it is but he is seeing the pulmonologist on Monday so if it is respiratory related, hopefully we can nip it in the bud and avoid the hospital.
Still no H1N1 vax for the boys. Not even going there.
Rick and I were able to get away last night for a free night at the casino. We had a blast and it didn't hurt that we broke even money wise.
Hopefully you made it through the whole post. Thanks for reading and checking up on us.
On Wed. I took the boys to see a CCS dr. (Complex Care Services) they are basically a primary care team for the hospital. The purpose is to help coordinate the care for complex kids like mine. Thing is they have not been doing much coordinating for us these days. I got a bit fed up so I switched to a different dr. hoping to get some more carry-over. I always dread appts. with both boys as it is sooo much work and just a long intensive day for all, especially them. Mr. Isaiah especially hates going to any appts and will immediately start yawning and "fake retching". He is too smart, huh...
As soon as I got there the nurse informed me that Avery also had another appt. right after but he will be late b/c this appt. is going to be about 2 hrs. UGH. But since we are already there might as well get it out of the way, right...
I really did like this dr. she was very attentive and interested in helping the boys. We started with Avery which ends up taking up 3/4 of the appt. b/c his history is so extensive. It is amazing when you have to give a history of how much this boy has been through and how far he has come. But my focus with him was better coordination after his hospital visits. What happens typically is that b/c Avery is on bipap he goes up to a special (step down ICU)which I really like them and they know him so well. That is not the issue. It is when we leave there, we have nobody to call for concerns or questions. CCS has a specific floor in the hospital and in inpatient/outpatient team but they SHOULD be following Avery since he is one of their pts. So I really stressed this to the dr. b/c it really is useless for him to be part in the service if they dont follow or know him. She agreed that this will be something she will try to coordinate (we will see).
Isaiah was more my issue. I have so much guilt of his issues that tend to take a backseat to Avery's frequent and chronic acute issues. He really has nobody invested in trying to help him with these migranes. They are getting worse and it needs to be taken seriously as it has a huge affect on his quality of life. So we will also see with this part.
Back to Avery. His second appt. was regarding his TPN. So it is no big secret that I am trying to get him off TPN b/c it is just not good long term for his body. It can cause serious liver damage amongst adding to his anemia issues and a slew of other things. While it has been great for him to get him back to a good nutritional point it also has huge risks in terms of additional central line infections which a major problem right now with his limited access. So my first question to the dr. was "How can I get Avery off TPN" He was thrilled that I was open and being aggressive about this b/c they dont want to see any kid on it long term unless necessary.
He then said, "easy all you have to do it get him formula intake (through his j tube) up to at least 500cc a day"
To which I said "easier said then done" but we will try.
So the plan is to increase Avery's feeds to 3cc every three week until we get to at least 30cc per hr. Now it sounds nice and easy and would be great if we can pull it off but only Avery's body will be the judge of that. But on a postive note we were able to take him off TPN for one night a week. Woooohoooo. Because Avery had such a big weight jump this yr. from the TPN he is okay to come off for one day. Realistically he may only get off TPN a few nights but that is progress and I will take it.
Something is definetly going on with Avery as he is quite miserable these days and only happy unless you are in his face 24/7. He is still junkier than normal so not sure if it is anxiety from pain or what it is but he is seeing the pulmonologist on Monday so if it is respiratory related, hopefully we can nip it in the bud and avoid the hospital.
Still no H1N1 vax for the boys. Not even going there.
Rick and I were able to get away last night for a free night at the casino. We had a blast and it didn't hurt that we broke even money wise.
Hopefully you made it through the whole post. Thanks for reading and checking up on us.
Tuesday, November 3, 2009
Wow, its been awhile!!!!
You know that means things have been relatively quiet around here...........
Mr. Isaiah just got back to himself after a long week of retching and just feeling yucky. He was not feverish or anything so I assume it is his regular cycles that are just getting worse these days. Poor kid.
Avery has been happy as a clam these days. Only thing is he is already getting respiratory. UGH!!! He has been needing O2 the last 5 nights and frequent suctioning which we all know what that means. He even started to sneeze today.
I am still frustrated as the kids especially Avery has not gotten the H1N1 vaccine. I am pretty convinced that by the time my kid gets it he will already have the flu. There are more and more cases of it closer to us. I totally get that there is a shortage and still a number of pediatrician's offices still have not gotten it, namely ours, but it ticks me off that they dont have Avery and Isaiah on a priority list. Instead I am supposed to call every day to see if they are in and god forbid I forget to call one day and missed the opportunity to get it b/c they have run out. KWIM!!!! I am glad prisoners at Gautanomo Bay have already gotten their though (WTF-pardon my french) just a hot topic with me.
Anyway we will see how things go with Avery over the next week as today and is not so happy. We have alot of up &coming appts. so I will try to update as things come up.
Here are some pictures of Avery in his new chair. So hard to get good pictures of him. Doesn't he look so chubba though?
Mr. Isaiah just got back to himself after a long week of retching and just feeling yucky. He was not feverish or anything so I assume it is his regular cycles that are just getting worse these days. Poor kid.
Avery has been happy as a clam these days. Only thing is he is already getting respiratory. UGH!!! He has been needing O2 the last 5 nights and frequent suctioning which we all know what that means. He even started to sneeze today.
I am still frustrated as the kids especially Avery has not gotten the H1N1 vaccine. I am pretty convinced that by the time my kid gets it he will already have the flu. There are more and more cases of it closer to us. I totally get that there is a shortage and still a number of pediatrician's offices still have not gotten it, namely ours, but it ticks me off that they dont have Avery and Isaiah on a priority list. Instead I am supposed to call every day to see if they are in and god forbid I forget to call one day and missed the opportunity to get it b/c they have run out. KWIM!!!! I am glad prisoners at Gautanomo Bay have already gotten their though (WTF-pardon my french) just a hot topic with me.
Anyway we will see how things go with Avery over the next week as today and is not so happy. We have alot of up &coming appts. so I will try to update as things come up.
Here are some pictures of Avery in his new chair. So hard to get good pictures of him. Doesn't he look so chubba though?
Subscribe to:
Posts (Atom)
