We are anxiously waiting.
Friday, May 7, 2010
getting ready
Jules woke up in a good mood. We fed him his last food for awhile and he has been playing all morning with no idea of what is happening to him today.
Just 2.5 hours until we leave for the hospital.
Joy
Just 2.5 hours until we leave for the hospital.
Joy
Thursday, May 6, 2010
surgery details
Check in is at 11:45am tomorrow.
Jules can't have any food past 5am.
he is going to be a very sad starving little pumpkin tomorrow morning = (
It will be a very long morning leading up to a traumatic afternoon for my little guy.
Joy
Jules can't have any food past 5am.
he is going to be a very sad starving little pumpkin tomorrow morning = (
It will be a very long morning leading up to a traumatic afternoon for my little guy.
Joy
Sunday, May 2, 2010
Some fun in pictures
As a brief departure from the morose...
Starting Passover
Ending Passover (Jules is long asleep)
Waiting for hamentaschen on Purim
Starting Passover
Ending Passover (Jules is long asleep)
Tulip Festival
Tuesday, April 27, 2010
May 7 Surgery details
Hi,
there are a lot of reasons why I'm so rattled about this surgery.
First, in normal kids this surgery is outpatient. In and out in a half day or so. For Jules, it turns out that what the surgeon said about "this being a dog fight to recover from," meant -- is that Jules will need to be put in the ICU after the surgery.
There is a risk in doing the surgery in a baby so young that his Uvula will swell up and require him to be intubated and put on the ventilator. The ICU is the place they do intubation -- so that is why we will be there. If we are lucky, he will make it out of there in a day or two and then get shipped to the regular surgery floor for best case scenario - two more days. So, best case is a 4 day stay. The reality is more like a week and I'm not thinking about worst case situations because we have already had a turn of those and I'd like very much for this to be a time he sails through something, heals miraculously, and gets out in the best case time.
Any mention of intubation and ventilators freak me out. This is because the reason Julian has lung disease most likely stems from injury to his lungs and scarring of his lungs from when they intubated him and put him on the ventilator in the NICU when he was born. His lungs are already so messed up, I don't want further damage. Plus, after spending so many hours in the ICU -- I know that people go on the ventilator and then sometimes don't come off. I am really scared of that happening to Jules.
Our last attempt at a surgery was for a surgical feeding tube right before we left the hospital last year. At the time, jules went all day without eating and then the doctor freaked out and refused to do the surgery. That has left me with some baggage about doing any kind of surgery on jules.
http://babysilver2.blogspot.com/2009/03/update.html
Okay, so this is super depressing, but I keep thinking about all the risks in a normal person for surgery and how compounded they are for my little guy and how painful it is to keep watching him suffer in so many ways - through these awful tests he has had, to all the special shots of synagis every month, to struggling just to eat or breathe, and it seems so terrible that he has to go through this surgery too. And I am sick to my stomach.
Joy
there are a lot of reasons why I'm so rattled about this surgery.
First, in normal kids this surgery is outpatient. In and out in a half day or so. For Jules, it turns out that what the surgeon said about "this being a dog fight to recover from," meant -- is that Jules will need to be put in the ICU after the surgery.
There is a risk in doing the surgery in a baby so young that his Uvula will swell up and require him to be intubated and put on the ventilator. The ICU is the place they do intubation -- so that is why we will be there. If we are lucky, he will make it out of there in a day or two and then get shipped to the regular surgery floor for best case scenario - two more days. So, best case is a 4 day stay. The reality is more like a week and I'm not thinking about worst case situations because we have already had a turn of those and I'd like very much for this to be a time he sails through something, heals miraculously, and gets out in the best case time.
Any mention of intubation and ventilators freak me out. This is because the reason Julian has lung disease most likely stems from injury to his lungs and scarring of his lungs from when they intubated him and put him on the ventilator in the NICU when he was born. His lungs are already so messed up, I don't want further damage. Plus, after spending so many hours in the ICU -- I know that people go on the ventilator and then sometimes don't come off. I am really scared of that happening to Jules.
Our last attempt at a surgery was for a surgical feeding tube right before we left the hospital last year. At the time, jules went all day without eating and then the doctor freaked out and refused to do the surgery. That has left me with some baggage about doing any kind of surgery on jules.
http://babysilver2.blogspot.com/2009/03/update.html
Okay, so this is super depressing, but I keep thinking about all the risks in a normal person for surgery and how compounded they are for my little guy and how painful it is to keep watching him suffer in so many ways - through these awful tests he has had, to all the special shots of synagis every month, to struggling just to eat or breathe, and it seems so terrible that he has to go through this surgery too. And I am sick to my stomach.
Joy
May 7th
Got the call that they are moving the surgery up.
New date: May 7th.
I know Jules has been through so much and survived many tough moments in his life, especially
for those first five months in the NICU.... but, I feel scared about this surgery and I'm really shaken up
about it.
More later,
Joy
New date: May 7th.
I know Jules has been through so much and survived many tough moments in his life, especially
for those first five months in the NICU.... but, I feel scared about this surgery and I'm really shaken up
about it.
More later,
Joy
Thursday, April 22, 2010
consensus
Just heard from our pediatrician that she spoke with the ENT surgeon and Julian's Pulmonary doctor and that everyone is in agreement that the surgery needs to happen and that the G-tube surgery should be tabled right now.
They want to see how Jules does after the tonsils come out.
Joy
They want to see how Jules does after the tonsils come out.
Joy
Wednesday, April 21, 2010
More updates
Hi,
Surgery is May 24th.
So they measure tonsil obstruction causing APNEA by the AHI index.
AHI Rating
<5 Normal
5-15 Mild
15-30 Moderate
>30 Severe
For children, normal is less than 1.5
Jules measured an AHI of 44
Quite severe for a little kid
Even after they put him on oxygen for the night, the lowest they could get it to was 5.
So, surgery is necessary or his brain will not get enough oxygen.
Unfortunately, they don't typically do this surgery in children as young/small as Jules.
They like to do it when kids are 3-5 years of age.
Right now, we are trying to understand the risks for Jules in his recovery, from the risk of his small
size, to his lung disease, to his young age as it varies from the typical surgical population.
The surgeon told me he had concerns about Jules recovering from the surgery "it will be a dog fight for him to come back from this, will be several days in the hospital when most kids are outpatient." But, the surgeon also said the risk was too high if Jules had APNEA. If APNEA showed up on the sleep study, then the tonsils had to come out.
In the meantime, jules is doing very well on his appetite stimulant. He has gained back the weight he lost when he was hospitalized two weekends ago.
Joy
Surgery is May 24th.
So they measure tonsil obstruction causing APNEA by the AHI index.
AHI Rating
<5 Normal
5-15 Mild
15-30 Moderate
>30 Severe
For children, normal is less than 1.5
Jules measured an AHI of 44
Quite severe for a little kid
Even after they put him on oxygen for the night, the lowest they could get it to was 5.
So, surgery is necessary or his brain will not get enough oxygen.
Unfortunately, they don't typically do this surgery in children as young/small as Jules.
They like to do it when kids are 3-5 years of age.
Right now, we are trying to understand the risks for Jules in his recovery, from the risk of his small
size, to his lung disease, to his young age as it varies from the typical surgical population.
The surgeon told me he had concerns about Jules recovering from the surgery "it will be a dog fight for him to come back from this, will be several days in the hospital when most kids are outpatient." But, the surgeon also said the risk was too high if Jules had APNEA. If APNEA showed up on the sleep study, then the tonsils had to come out.
In the meantime, jules is doing very well on his appetite stimulant. He has gained back the weight he lost when he was hospitalized two weekends ago.
Joy
Tuesday, April 20, 2010
adenotonsillectomy
The results from the sleep study show that Jules has obstructive sleep apnea. The belief is that his tonsils and adenoids obstruct his airway while sleeping. Among other things, this causes the oxygen content in his blood to vary while sleeping which causes Jules to work harder to breath at night. The next step is an adenotonsillectomy. It's scheduled for 5/25.
Studies show that OSA can also cause poor weight gain.
Monday, April 19, 2010
Sleep Study
Sleep study was awful.
Jules looked like a mummy with over twenty electrodes stuck all over him and then wrapped in gauze.
He had a scary episode where they had to put him back on oxygen all night.
We don't know what this means and are waiting for news.
Joy
Jules looked like a mummy with over twenty electrodes stuck all over him and then wrapped in gauze.
He had a scary episode where they had to put him back on oxygen all night.
We don't know what this means and are waiting for news.
Joy
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