tough day

Well, last night, we went out to celebrate yesterday's good day for Julian with a dinner out and this morning we woke up to hear that his electrolyte imbalance is quite bad and that CPAP is back on the table for Monday morning. They cut his lasix dose in half and increased his Diamax and added in a third med to thelp with his imbalance. But, if it doesn't work and his body is still so out ot wack tomorrow morning, then CPAP is our only choice.
CPAP means a step backward that is pretty tough as parents to hear. He hasn't been on it since he was born. It is a helmet type device strapped over his nose that forces air through. Most babies don't like it and require some form of sedation to keep them comfortable.
It isn't as scary as re-intubating him like they considered doing last monday, but it is a pretty big change in his life and one that comes with consequences that are painful for us to consider, especially as they relate to his being much restricted with his ability to interact with the world and with us and of course, CPAP keeps him from developing his oral skills and other important developmental steps.
We are so exhausted from the going forward and back with Jules. We are so hopeful one day and so discouraged the next, that it hard to have any clear vision for how things are going.
We go to sleep tonight very stressed and exhausted, trying to stay positive and putting on a brave front for Gigi.
Joy

100 days

Today is the 100th day in the hospital.
Last night was the start of Julian's 15th shabbat.

At this point, Julian has met probably about 100 different nurses and I wonder if he has any idea who his mother is.

Joy

Hanging in there

Even with the steroids his Carbon dioxide levels are stuck in the 60s when they want to see 40s. But, his work of breathing (how hard he has to work to suck in air and seen with big chest retractions,) looks better today. His electrolytes are off and they have added a medication to try to address that. It didn't work yesterday, so they increased the dose today.

Scott is at the hospital holding him now.

Joy

Diagnosing

Last night, the pediatric ENT team scoped Julian's throat and upper airway to see if they could find anything causing a "stridor", not sure how to spell that one. They didn't find anything.

He lost 100 grams of weight on the lasix, which made me feel really good that his body is getting rid of all that excess water that makes it hard for him to breathe.

Joy

6 1/2 pounds!

Jules is six and a half pounds now. He had a good day because it was nice and quiet. He just slept and cuddled. 

He is now 47 centimeters in length.

And for anyone who knows how to make a hat -- 35 centimeters around his head.

Scott's computer has been broken for a week, but as soon as the part comes in that he ordered, he will fix it and post some new pictures.

Finally, thank you to Louise. Today, Jules received a box at the hospital. We didn't even know he could receive mail and packages at Children's Hospital. We have never met Louise. She works with scott's sister Merrie in New York. She has been following the blog and occasionally posting encouraging words even though we have never met her. And tonight, we opened a box of presents from her to Jules. So, thank you Louise. That was a truly unexpected and delightful surprise. Jules went to sleep listening to his singing octopus.

Good night,

Joy

going to bed happy

After a terrifying two days, I am falling into bed happy tonight.

It was better than we could have even hoped for to see that Julian's heart was not only not enlarged further, not the same, but actually IMPROVED! Thank you for all your prayers and positive energy and love.

Jules had a special bone mineralization test that showed his bones have not been harmed by the steroids and lasix. That, plus the proof that he is not headed toward heart failure right now means that he got a mega dose of prednisone and another dose of lasix tonight and they are going to keep it coming for a while. 

He had a special test where he wore an oxygen hood on his head for ten minutes and then tested his arterial blood gas to see a carbon dioxide number in the 50s. This was positive as well.

But, no one really understands what exactly is happening in his lungs to cause his rapid breathing and terrifying carbon dioxide levels, so we are hoping the prednisone will give him a boost this time. 

Off to fall into bed. After not sleeping for two days, I can't wait!

Joy

some good news: echocardiogram looks improved

Julian got some good news today - his hart enlargement (right ventricular hypertrophy) has abated somewhat. What that means is that his heart is showing signs that it has been working less - meaning his body is doing a better job oxygenating.

Julian will start a course of Prednisone (steroid) and Lasix (diuretic) tonight.

Prayers

or good thoughts needed. Please send toward Jules.

He is having more tests tonight and may have to be re-intubated for a month and sedated if his heart is more enlarged than the last echo.

Joy

NICU stay extended

Unfortunately, Jules continues to post carbon dioxide levels in the low seventies, so it is NICU city for a bit. We were hoping that after lasix and peeing out another quarter pound diaper, he would improve. But, it didn't happen. We are all wondering if something else is going on (one attending posited that he had experienced a growth spurt and his lungs have not caught up,) and once again, using steroids, even Dex were tossed into the ring of discussion again. The pulmonary specialist saw Jules and decided to try an extended lasix course (which isn't so great for Julian's bones,) to see if it helps. So, for the next week, he is going to have lasix every other day. They also decided to try albuterol again, sustain the once a day inhaled steroid, and wait and see. So, given our longer than anticipated Children's NICU stay, we moved to a nice room with more privacy. We are all hoping Jules improves this week and gets to move back to the Peds floor.

Another night

in the Children's NICU. Hopefully, they will let Jules out tomorrow.

Joy