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

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

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

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

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.

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

Friday thru Sunday

Friday, Jules went for his evaluation at Boyer Clinic:

http://www.boyercc.org/

He qualified to be in their classroom based on his adaptive skills (inability to feed normally) and his social skills (no experience playing with children or much interaction with people other than his medical team).

He did not qualify based on his cognitive function, his fine motor, or his gross motor skills.

We are waiting for a spot to open up in one of their classes and he will go twice-a-week for two hours each time and see his Physical Therapist/Occupational Therapist on site instead of at our house.

Tonight, Jules is sleeping at the all-night sleep study at Children's Hospital with Scott. He has over 20 sensors hooked up to his body and his head wrapped in gauze so that he looks like a Mummy. Scott reports that is is pretty brutal over there with Jules being less than thrilled about the 14 electrodes attached to his head.

Poor Jules = (

Hopefully, they will get six hours of good readings and scott/jules will be able to come home.

Goodnight,
Joy

long days

So,

Jules failed the plane test. He desaturated into the 80s in about 2 minutes, turning ashen and scaring everyone.

So, the only way it is safe for him to fly is if he hooks into the airplane oxygen system.

This makes us all very sad because he is just too old to keep hooked into the plane oxygen with a mask or tube for a flight. He wouldn't be able to walk and or get up and that is impossible for a toddler on a 6 hour flight.

So, Jules will not be going with us to merrie's baby's bris in New York this month = (

Today, we had pulmonary clinic.

Jules lost a pound. He now weighs 18.5 pounds. If he doesn't gain weight in the next month, it is G-tube
surgery for him.

We discussed the situation with his tonsils for a while. Even if he doesn't have episodes of APNEA on sunday night's sleep study, our pulmonary doctor will try to convince the ear nose and throat doctors that the tonsils need to go.

We are giving jules an appetite stimulant to see if he can gain some weight more easily this month. Side effects are either a very hyper or a very sleepy kid.

And we are on a new food plan of making him wait 3 hours in between bottles. No one is excited about that or sure it makes sense. So far, not a good experience. He ate his two 200 bottles this morning, took a nap, and threw it all up. So, really not sure why it makes sense to give him such big volumes when we know he can't keep it down. All of us, heidi, scott, and joy are very discouraged and frustrated.

Joy

ENT

Today, Jules saw the ENT doc.

He wasn't comfortable operating on Jules unless there are documented cases of APNEA on the sleep study we are having this Sunday night at Childrens.

He also said that the recovery would be tough for Jules and that they don't do this surgery on kids this little very often.

I felt like the G tube surgery would be far less invasive after listening to him. The G tube surgery has a one day hospitalization attached to it.

The tonsil removal could be 3/4 days of staying in the hospital for Jules.

I left feeling quite unsettled and unsure of what the right thing to do is for Julian = (

Doing better

Jules woke up this morning feeling almost 100%

He is eating and not vomiting and is running around with his usual personality. It is super great to see.

I got the best call this morning from Childrens that the ENT appointment we have been trying desperately to arrange for Julian has been moved from June 7th to TOMORROW!

So, Jules is having occupational therapy with Keren tomorrow morning, followed by an ENT appointment where we hope to get to the bottom of his tonsil situation. We think his tonsils are impacting his ability to eat.

So far, we know --
1. he has to tilt his head in an odd angle to drink from his bottle and be able to breathe as noted by his Occupational therapists.
2. He breathes exclusively through his mouth.
3. He snores VERY loudly all night long.
4. His tonsils appeared very large on the x-ray swallow study he had at Childrens. Given Julian's issues swallowing and the special thickened formula he drinks, the tonsils are certainly not helping the swallowing situation.
5. The pediatrician noticed he had large tonsils.
6. The pediatric eye surgeon noted that the issues with Julian's tear ducts, his swollen tonsils, and what he suspected may be a nasal obstruction are all interrelated and suggested we see ENT for Jules.

So, the other thing they check for is APNEA, which jules is having an overnight sleep study to check-into on Sunday, 4/18.

Hopefully, the ENT doctor can help us figure out if the tonsils need to go. It would be unusual to remove them in a child so young, but if they are preventing him from being able to eat quickly normal volumes of food and he can't grow -- than perhaps they will consider it.

I will update tomorrow with what happens.

For now, we are so happy to see the little guy feeling so much better.

Joy