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

Discharged!

Jules did well on IV fluids and Zofran, so he was able to go to pedialyte and then got to go home!

He is doing so much better!

This week he has:
Wed -- Airplane simulator test to see if he desats with cabin pressure changes. Plus appointment with Physical therapy.
Thurs - Pulmonary Clinic to discuss lack of growth, tonsil removal situation and how to get in sooner with ENT, and if a G tube is also going to happen. and a check-in with nutritionist as well as OT with Keren.
Friday - Evaluation at Boyer Children's Clinic to see whether Julian needs more special needs services
Sunday 4/18 -- Overnight sleep study to evaluate tonsil situation more closely

I will post more often on the blog to let you all know how he is doing with all these appointments.

Goodnight,
Joy

Back At Childrens

Hi,

Julian hasn't grown for a few months and we have been in a diagnostic marathon over that lately.

We know we are looking at a G Tube surgery and/or tonsil removal.

Late this week, Jules refused to eat and then began to vomit anything we did get in him. Yesterday, he was starving and everytime he ate a bottle, he threw it up.

He was admitted to Childrens last night after and X-Ray showed a GI situation with fluid in his tummy and he was unable to keep down his thickened pedialyte.

He is on an anti-nausea medication used for cancer patients and an IV drip to keep him hydrated.

His PCO2 was 54. This did not thrill us as he has had a baseline in the 30s/4os for many months.

I will write more when I can. We are all very upset. They won't let Gigi visit. Scott and I got pretty scared yesterday. Being back at Childrens is pretty rough on us = (

You can call us at Childrens: 206) 987-2000 and ask for Julian Silver's room.

Our cellphones also sometimes work, but the reception can be bad.

Joy

Joy

FABULOUS NEWS!

Hi,

Yesterday, Heidi and I took Jules for a Long Long day at Children's hospital.

First, we had an echo. Jules did not enjoy being forced to lie on his side for twenty minutes while the ultrasound tech worked on his chest. But, Heidi and I took turns holding him down while he cried and sometimes he got distracted by a video they had on in the room. Mostly, it sucked though.

Then, jules got a really grouchy and awful lab tech who took blood from his finger and he was very sad.

After these lovely tests, we got to have some fun with Keren and OT. Jules got to practice with a sippy cup and throw yogurt around, so he was pretty happy. He showed off one of his new words -- Challah and had an all around good time, which was much needed at that point.

Then, we went to meet with the nutritionist. Jules had not gained much weight (just made it to 18.7 pounds) so we decided to go up to more significantly fortified food, taking him to 40 calories an ounce. I'm not sure if that is the end of the line of calorie density or whether we can try something else if it doesn't work, so I'm dearly hoping this new concoction does the trick!

Finally, we met with the pulmonologist. He had much good news to give us. here it is:

1. The prelim results of the echo were normal, showing no stress to julian's heart from being off oxygen and his prelim blood work was good as well. But, we have to wait for the radiologist and the rest of the labs to come back to confirm this.

2. Given that, we can do a two night trial without the oxygen concentrator that blows oxygen into his crib, (where we wake up every two hours and test to see if jules has enough oxygen saturation) and if it looks good, we can get rid of the machine.

3. If it looks good, they will bring in another type of equipment to measure him all night long and do a print out or record to a chip, so they can prove he is done with oxygen for good.

4. If all that works, we will start cutting the other diuretics he is on in half and then eliminating them, working toward only having him on the one medicine for his reflux.

5. Given how great Julian looks with his walking, no hospitalizations so far this winter, and coming off oxygen, we got the best news of all -- At the END of April we will break our year-long hibernation and isolation. Jules will get to LEAVE the house!!!

Yay!

I am so happy.

We will be able to leave the house as a family, go to restaurants, go to parties together, have people come visit and gigi can have play dates with friends. It seems to good to be true. I am so excited.

And we can also take him on a flight at the end of April to Scott's sister merrie's baby boy's bris in New York!

When we told Gigi the good news that jules could fly on airplanes now, she said, "Aloha!" and had visions of Hawaii dancing in her head. We had promised her that when the day came he got off oxygen, we would all go to Hawaii, so I am going to plan that trip too! I am so very happy.

We do have to take Jules to a special flight simulator test to make sure he can handle changes in cabin pressure. If he can't they will give him special oxygen just for the duration of the flight.

And we will have to find a hotel near merrie's place in new york that will give us a big fridge to hold all his weird liquid food stuffs. But, that is it and we can go!

Finally, because of this, Jules will get to meet other children his age for the first time at a twice a week preschool at his special Boyer Clinic where his physical therapist works. He will start preschool that goes for two hours 2x a week at the end of April.

I am so excited for him! And for us!

Joy