Unfortunately, since he is doing well, that means it is time to challenge him. So, tonight they will try taking away some oxygen to see if he struggles to breathe. Sounds like a fun night for Jules.
Joy
Thursday, February 19, 2009
Wednesday, February 18, 2009
mid day update
On the good side Co2 is down to 51.
On the less good side our new attending decided that the old plan was bad but didn't take the time to explain his proposal. He mentioned something about "getting us out of the NICU mentality" when arguing for fewer CBGs. We've called for a family care conference this evening for a round of mediation.
Update: Attending showed up and talked Joy. Looks like we're on the path to a mediated solution. Apparently I scare the residents. They should see my past performance reviews.
On the less good side our new attending decided that the old plan was bad but didn't take the time to explain his proposal. He mentioned something about "getting us out of the NICU mentality" when arguing for fewer CBGs. We've called for a family care conference this evening for a round of mediation.
Update: Attending showed up and talked Joy. Looks like we're on the path to a mediated solution. Apparently I scare the residents. They should see my past performance reviews.
i heart doctors
Yesterday the medical staff changed the flow of O2. This was not the plan. This started a flurry of parent-doctor struggles.
As of last Wednesday changing his O2 was not the plan. That plan, as documented in my hand-built chart, and ratified by the then pulmonary attending, showed we were to start decreasing Julian's diuretics first. The important parts of the plan are that it maps out a course of changes to Julian's diuretics, O2 support and feeding in a way that makes one change at a time and tries to change the most important things first. It's simply the old scientific method. When we make a change we want to understand what's impact was.
Probably the most challenging part of partnering with the medical staff is to get a plan that reaches out over more than one attending shift. Our attending changes every week, but Julian only changes ever other week or so. The tendency to move quickly, to change multiple things simultaneously, or generally to change the order of things breaks this experiment and leads us to make potentially incorrect conclusion. For example if we changed his diuretics and his O2 support at the same time and then he started working harder to breath we would wonder - was it the O2 or the diuretics. And be back at square one.
Joy insisted that the old flow be restored in the early afternoon. And Joy and I switched places at the hospital at around 4:30pm. I waited until 7:30 for the attending to show -- instead one of the residents showed up. She started (nicely) with the standard back-to-basics explanation of Julian's state. After about 5 minutes I asked her to grab the chart behind her which explained our plan. She said she didn't know there was a plan.
So we're back on the plan. Hopefully securing agreement to it (or modifying it as appropriate) from this attending. And hopefully sticking to it. This attending doesn't take the time it takes to build consensus or a plan. He also doesn't articulate one when he is barking at us.
Scott
P.S. This is snarky so I'm leaving till the end. And yes, I know all about projection...:-) We continue to debate with the medical staff about the frequency of CBGs (blood gas tests). They would really like to do them every other day. We ask why, they say he doesn't need it. We like having the data, and it allows us to see trends over the last 2 days (usually the decision making unit) at any time. This was very helpful two weeks ago. The doctors argue that having the CBGs may make them (or us?) react to one bad number. I mean seriously if you know your algorithm for taking action might include over reaction would you a) monitor less or b) change your algorithm to delay your reaction (hysteresis). Holy crap! Or here's another one. Let's agree to disagree. Let's do the blood test every day and I'll just tell you the number every other day.
As of last Wednesday changing his O2 was not the plan. That plan, as documented in my hand-built chart, and ratified by the then pulmonary attending, showed we were to start decreasing Julian's diuretics first. The important parts of the plan are that it maps out a course of changes to Julian's diuretics, O2 support and feeding in a way that makes one change at a time and tries to change the most important things first. It's simply the old scientific method. When we make a change we want to understand what's impact was.
Probably the most challenging part of partnering with the medical staff is to get a plan that reaches out over more than one attending shift. Our attending changes every week, but Julian only changes ever other week or so. The tendency to move quickly, to change multiple things simultaneously, or generally to change the order of things breaks this experiment and leads us to make potentially incorrect conclusion. For example if we changed his diuretics and his O2 support at the same time and then he started working harder to breath we would wonder - was it the O2 or the diuretics. And be back at square one.
Joy insisted that the old flow be restored in the early afternoon. And Joy and I switched places at the hospital at around 4:30pm. I waited until 7:30 for the attending to show -- instead one of the residents showed up. She started (nicely) with the standard back-to-basics explanation of Julian's state. After about 5 minutes I asked her to grab the chart behind her which explained our plan. She said she didn't know there was a plan.
So we're back on the plan. Hopefully securing agreement to it (or modifying it as appropriate) from this attending. And hopefully sticking to it. This attending doesn't take the time it takes to build consensus or a plan. He also doesn't articulate one when he is barking at us.
Scott
P.S. This is snarky so I'm leaving till the end. And yes, I know all about projection...:-) We continue to debate with the medical staff about the frequency of CBGs (blood gas tests). They would really like to do them every other day. We ask why, they say he doesn't need it. We like having the data, and it allows us to see trends over the last 2 days (usually the decision making unit) at any time. This was very helpful two weeks ago. The doctors argue that having the CBGs may make them (or us?) react to one bad number. I mean seriously if you know your algorithm for taking action might include over reaction would you a) monitor less or b) change your algorithm to delay your reaction (hysteresis). Holy crap! Or here's another one. Let's agree to disagree. Let's do the blood test every day and I'll just tell you the number every other day.
Tuesday, February 17, 2009
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.
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 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.
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
Subscribe to:
Posts (Atom)