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

preemie follow-up

So,
wednesday was julian's one year evaluation at the CHDD
http://depts.washington.edu/chdd/ucedd/ctu_5/hrifclinic_5.html

He made everyone's day by walking into the appointment with the developmental psychologist!
Yay! Yay! Yay!

He scored for his adjusted age exactly on target for motor skills as a 12 month old 8 pounder at full term would have scored at one year and as an 11 1/2 month old intellectually.

The developmental pediatricians told us that they almost never see micro premies walking before 13 months and have never seen a micro preemie as sick as jules ever walk before 13/14 months. A few doctors came to feel his muscle tone because they were so surprised at how strong he was. They told me they usually see kids on oxygen for 2 - 3 months who have very poor tone and problems and they don't have the opportunity to see babies on oxygen for more than a year very often and they were surprised to see how healthy he was given those circumstances.

They wrote that he is on "signigicantly fortified feeds" due to growth lag or whatever and I realized that on the part of the form where they typically list all of julian's issues that for now, that was the only one in the box -- tackling growth. It is a big one and I am going to focus on that being the center of my discussion on 1/19 when jules has his next pulmonary clinic day. And they cautioned me to be on the lookout for some of the common pitfalls concerning preemies, like attention problems, etc...

I was sick to my stomach walking the long tunnel into UW and quite anxious about these appointments and can't begin to express my RELIEF that they are over. We don't have to go back till he is 2!

Our NICU physical therapist called me personally last night to tell me she went to read the reports from the team and to chat with them about jules and she wanted to tell me how extraordinary our outcome is and how delighted they were with him.



Yay!

update

Hi,

Today, we went to the pediatrician and Jules had gained 13 grams a day bringing him up to 18.7 pounds! So, we are going to continue on the 35 calories per ounce and hope for some big growth by the jan. 19th pulmonary clinic meetings.

His lungs sounded good off oxygen.

Dr. was happy to see his cold was on the way out and that he had gained weight.

We are going to do an echo-cardiogram 1/19th as well as labs, etc... to make sure his heart is not strained by doing so much work to push oxygen around his blood and we are hoping we will get the all clear to be off oxygen.

tomorrow, is julian's one year BIG developmental assessment.

Joy

not growing still

So, we are going up to 35 calories per ounce. This means when we make a batch of food it is:

Recipe for Julian's food:

Six 80z cans pediasure
6 tablespoons Duocal
120ccs simply thick
50ccs pear juice

I hope this works!

We have been off oxygen via nasal cannula for days and nights and so far so good. he still has his bedside oxygen concentrator.

On Jan 6th, he is going for his one year evaluation at the high risk infant follow up clinic. He will spend an hour with a psychologist, an hour with a developmental pediatrician, and an hour with audiology.

Happy New Year!
Joy

not growing

We took jules for a weight check up today.
He has not grown since Nov. 10th.

Still 18 pounds.

The pediatrician said she would give us two more weeks.

We discussed everything from G tube surgery again to a new even higher caloric drink that is on the market.

I got very upset. I hope his brain is getting enough food.

And I'm trying to focus on the positive, like how well he seems to be doing off oxygen and how nice it is to not see tubing all over his face. And how great that he is off lasix and off the O2.

But, I'm praying that he will grow.

Joy

gigi's 5th birthday & no o2 at night& chanukah

We celebrated Chanukah and then in the middle of that we had Gigi's birthday party (since her birthday is on Christmas). It was a Become-A-Fairy (tm) birthday party that Joy designed.

Also, Jules has been off any O2 for the last 3 days. That means he's sleeping on room air. I wake up a few times a night to check his O2 saturation levels, and everything looks ok.

From gigi's 5th birthday and chanukah 2009

From gigi's 5th birthday and chanukah 2009