Monday, February 16, 2009

Not changing a thing

Jules had a PC02 of 62 today.
The new attending decided not to change anything, which acording to scott, he impressively managed to announce without making any eye contact. 
I say according to scott because I am forced to remain home with my nasty stomach virus and they won't let me visit Julian until I have been symptom free for 24 hours. I have been sleeping the day away and satisfying myself with pictures of Jules scott has sent from his cell phone throughout the day.
For those of you from far away who have offered to fly out and help. I have placed the currently scheduled visits of out-of-towners  on our meals and hospital visits calendar to help you plan your trip. 
Please go to:
Email =  silvers.calendar
Password = madronahome
Joy

Sunday, February 15, 2009

bad numbers again

Julian's PC02 climbed to 66, even on extra Lasix.

I am praying and willing him to turn this around and get the fluid out of his lungs. 

The new attending told me that my son is "on thin ice," and "treading water," poised on the edge of intubation and has built up a tolerance to the diuretics that may mean there will be no other choice but to intubate. 

I felt sick to my stomach and so angry at the same time at the new doctor, whose first idea was to take away half of his lasix and "see what happens." He told me he was the expert and while I could argue my opinion, he was going to do what he felt best. I argued I was the expert on my son and that having known Julian for 127 days in the hospital, I might know a little about what was in his best interest medically.  The conversation got more stressful. Scott came by later to have a chat with the doctor too and you know how bad it is if Scott related that the doctor attacked him verbally and made outlandish claims.

Just what we need right now.

I could not believe that with Julian's numbers getting worse, the doctor's choice was to remove medication. So counter-intutive. The nurses came by to tell me later that the new attending had changed his mind and would leave him on his current dose for a few days to see what happens.

Another roller-coaster of a morning.

And I have a stomach flu. 
Honestly, it is getting truly pitiful around here.
Joy

Saturday, February 14, 2009

asking for help

Hi,

Asking for help is not something we are good at doing around here. But, after 127 days of Jules in the hospital, we are struggling to keep things going well in our home. Four months of hospital time and potentially another four months ahead of us is quite daunting. 

If you are one of the nice people who offered to make a meal for us and I told you we didn't want help for meals until he came home from the hospital... I was wrong! We have changed our minds and would love your help now.

If you are someone who might like to break my social isolation and can visit from 10am-11:30am in Julian's room or for lunch at the hospital at noon, I would LOVE to see you.

If your name is Jeremiah and you have offered to cook, clean, visit, prune the yard etc... but I have never responded to any of your emails, I am SO Sorry. You are amazing and awesome and I apologize for not being able to schedule or plan anything. To deal with my inability to use my phone in the hospital and my desire to snatch any sleep at home when I can, (hence the lack of use of my phone at home too), my friend Irene came up with the idea of a Google Calendar.

Here is how you can help. We would like help Mondays, Tuesdays, and Thursday nights for dinner. Our good friend Irene has created a google calendar where you can sign up to drop off dinner at our house in a cooler on our front porch or sign up for visiting at the hospital.

Please go to:
Email =  silvers.calendar
Password = madronahome

If you look at a weekly or monthly view of the calendar, you will be able to see what days we need help in the form of meals or friendly visits.

Here is the last bit of info:
Meals:
We keep somewhat kosher, as in no pork/ham/pig products or shellfish. We eat poultry, salmon/cod/halibut, beef and lamb. We don't eat meat and milk cooked together, like chicken in a cream sauce or beef with buttered noodles or a cheese burger. If you don't have a high degree of kosher familiarity, the easiest is to cook stuff with vegetables, pasta, fruits, eggs, or fish, which can be cooked with either meat or milk. 
And we don't eat mushrooms or bell peppers.

Visiting:
You are not permitted to visit Children's hospital if you have any symptoms of any illness and should not come if you think you might have a cold, or until 48 hours after you have finished being sick. When you come, you will need to wash your hands a lot and use a bunch of purell gel.

Thank you to everyone who has offered to help and to Irene for arranging this way to help.

Goodnight and Happy Valentines Day! 
Joy




62

He is hanging in there at sixty two. I hope the new lasix in increased doses will help bring the numbers down, they certainly helped us avoid the seventies of last weekend!
Joy

Friday, February 13, 2009

64 again

Jules had a pco2 of 64 again.
I began the morning afraid and feeling an eeire groundhog day sensation. Wasn't this just where we finished last week? And then we lived through an excrutiating weekend in the seventies, hours from being shipped back to the NICU?
Fortunately, the attending decided to try something new, why not give Jules extra diruetics now instead of waiting for things to get so bad that they would have to put an IV in again over the weekend?
we were so happy. This is the first time we have tried a preemptive strike to see if we can stop the problem before it escalates into something terrifying.
So, we watch and wait now, hoping that tomorrow when we call and hold our breath for the answer to "what is his pc02 this morning?" that the answer is NOT 75 like last saturday and that Jules holds steady where he is.
Jules grew to 49.5 centimeters. His head remained the same size. He is a little over eight pounds.
Goodnight,
Joy

Thursday, February 12, 2009

the wrong direction

Julian's co2 was back in the 60s today - 64. Wrong direction dude.

Wednesday, February 11, 2009

Good day

Jules had a good day. A great number started off the morning - 50!
We had a long talk with the docs about how to continue his treatment, eventually coming to an agreement that if he can remain stable for a time, we will try to wean him from his lasix usage.

In the very best case scenario, the very earliest Jules could come home was six weeks.
Six more weeks on top of our time so far, would mean 168 days in the hospital.
I am trying to accept that.

And the worst case is going into the summer.
I am trying not to think about that option at all.

He learned how to coo and had a lot to say to everyone who visited today.
Joy

fifty

fifty. that's a nice pco2.

Tuesday, February 10, 2009

eight pounds!

88888888888888888888888

Jules is 7 weeks old (Adjusted, corrected, etc...) today.

He is four months old in preemie time.

He spent his day lifting his head up while doing tummy time to admire himself in his mirror, swatting and swinging his arms to try to reach me and his mobile, smiling and charming people, and sleeping/snuggling.

He had binky training two times and did beautifully. Binky training involves a pacifier with a hole in the end, threaded with a plastic tube and a syringe full of a tiny amount of milk that I can control how much and how fast it flows through when he is eating.

He is 8 pounds, which puts him in the tenth percentile for weight. But, his height/length is still not on the chart. He really needs that length to grow in order to get his lungs better. And his head is in the 20th percentile. For all you hat makers out there, his head circumference is approaching 28 centimeters.

I went to rounds today and requested no one on the team change anything related to his feeding until he remained stable with pco2s in the fifties for two weeks. He had a great day today. Scott is with him now, giving him his bath and tucking him in for the night.

Goodnight, Joy
ps. Congrats to Thila and Margalit for becoming US Citizens! Yey!

seemingly stabilized

In the lingo it's "7.42 54 38 34"
For us regular people that means his pCo2 is 54 - Jules' baseline. That's a good place to be.

And, on a humorous note, apparently he's technically obese. At the very least he's neck-less..."No Neck Jules"