Mother's Day

This is a picture from Friday, when the OT & PT were working with Ambrose, after the EEG techs had sabotaged his hair. (He  had a bath and shampoo afterward.)  They are wearing gowns and gloves because he is on "contact precautions."  Nearly every patient in here is.  I think it is because of the swine flu scare.  Initially he was also on "droplet precautions",(because he was coughing)  which meant everyone had to wear a mask as well.  It seems rediculous to me at this point since he has been here for 2 weeks.  But I guess it protects him too.

Yesterday Ambrose spent 14 hours straight off the the CPAP and did great.  Today, they will try leaving him off and hopefully keeping him off so we can go home soon.  I will speak to him about this.  Send him good breathing energy.

Last night I went out to dinner with my dear friend, Sonja, who I haven't seen since we baked Christmas cookies at her house when I was 6 months pregnant. It was great to catch up and to get a break from hospital life for a few hours.  Today, Ambrose and Sophia's nurse and "adoptive grandma" Roberta is coming up to take me out to lunch for Mother's Day.  I love her!

This morning a resident, who I have seen around but who had not made any eye contact with me, came into the room to listen to Ambrose.  As we began having a friendly exchange about him I suddenly recognized her as the resident I had had a terrible experience with in the emergency department in December.  It had been so bad I ended up telling her off and complaining about her.  Which, if you know me , you know it must have been pretty bad for me to tell her off.  I've never done that in the nearly full year of my life I've spent in this hospital.  Boy do I have a bad memory for faces. I had wondered when I would have to see her again.   Anyway, I'm sure things will go much better this time around.

Ambrose had had an increase in seizures on Friday after an initial reduction in seizures after starting the ketogenic diet.  They made a few changes to meds and yesterday was much better.  I only saw 3.  Also, his blood sugar issues seem to have been resolved by the slight adjustment to his diet.

Happy Mother's Day to all you mothers out there!

Day 12

When I came in this morning I found Ambrose on 55.5% O2 with a cough assist machine in his room.  It took several minutes to find someone to tell me what was going on as a new patient was just brought in to the room next door who is continually loudly wretching, coughing, and gagging.  They are not going to try increasing the time off CPAP today.

I guess he had some desats with a seizure. They thought he sounded like he had more secretions today.  They tried to use the cough assist to see if it would open him up a bit, but without a cuffed trach, the extra pressure just escapes.  He is back on his usual 35% O2 now.  

He just had an EEG.  (They attach 24 leads to his head to monitor brain waves to look at seizure activity.) This really pissed Ambrose off!  And of course, the moment they shut off the equipment, he had a big seizure.  (I should have taken a picture to add to this post.)They left him with lots of goop and tape in his hair.

His blood sugars are low again -48, 49, so they made some more adjustments to his diet.(They are expected to be lower when instituting this new diet, but would prefer them a little higher than the 40s.)

He is also having an increase in seizures!

He has been having diarrhea for several days now.  (At least it is no longer flouresent green.)

Have I mentioned he has a fungal infection around his trach?  Likely from the antibiotics.

We want to go home!

Day 11

Slowly weening...Today Ambrose is having two 7 hour stretches off CPAP.  He must be completely off for 24-48 hrs before he can go home.

I requested a physical therapy consult for him a few days ago.  They have been great. A PT & OT have been alternating visits for about an hour a day. Today she brought a big mat and exercise ball and we got him down on the floor to play.  I think he really enjoyed it. They've also brought him a tumbleform chair and some toys and leave everything with us to use while he's here.  So glad I asked.

Ambrose has achieved ketosis. He is still having some seizures, but a lot less than usual.  His blood sugars have been in the low 50s, so they had to add a little protein powder to his ketocal.

Today Ambrose's friend Ben got to go home. Yeah Ben!

Ambrose, Day 10

Here is a picture of Brosie in his current setting, followed by a pic of the helicopter he was flown in on. Kind of like the horse you rode in on but much more dramatic.

He is continuing to ween from CPAP. He just spent 6 hours off and will go back on CPAP for 2 0r 3 hrs, then try another 6 hrs. off.  

His urine is showing ketones.  I saw no seizures yesterday, but did see one this morning. Damn it, he's having another one right now!  Crap!...And speaking of which he is having green poop since starting the diet.

Whirley Bird

Full Steam Ahead

Well, Little Brosie is doing very well if I do say so myself.  He is now spending 4 hours on and 4 hours off CPAP and is tolerating it pretty well.  He is also tolerating his new diet and his urine is starting to show some ketones, evidence that his is starting to become ketotic. Yeah!  The attending just stopped in and said maybe he can go home this weekend (at the earliest) if he keeps doing so well.

Ambrose goes Ketogenic!

Well after a week of hearing different opinions on whether he should or shouldn't, would or won't start the ketogenic diet (for seizure control) today, I was surprised and delighted to hear that we are going ahead with it.  Which does mean we will be here for at least another 3 days.  This will give him more time to work on weening off the CPAP, which has proven to be a slow process.  

Here is an overview of the ketogenic diet:

The ketogenic diet is a high fat, adequate protein, low carbohydrate diet, primarily used to treat difficult-to-control (refractory) epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fat rather than carbohydrate. Normally, the carbohydrates in food are converted into glucose, which is then transported around the body and is particularly important in fuelling the brain. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. When the body produces ketone bodies—a state known as ketosis—this has an anticonvulsant effect.^[1]

The diet has just enough protein for body growth and repair, and sufficient calories to maintain the correct weight for age and height. The "classic" ketogenic diet contains a 4:1 ratio by weight of fat to combined protein and carbohydrate. 

Developed in the 1920s, the ketogenic diet's popularity waned with the introduction of effective anticonvulsant drugs. In the mid 1990s the Hollywood producer Jim Abrahams, whose son's severe epilepsy was effectively controlled by the diet, created the Charlie Foundation to promote it. Publicity included an appearance on NBC's Dateline programme and …First Do No Harm (1997), a TV movie starring Meryl Streep. The foundation sponsored a multicentre research study and the results, which were published in 1996, marked the beginning of renewed scientific interest in the diet.^[1] The potential use of the diet as a treatment for medical conditions other than epilepsy is, as of 2008, still at the research stage.^[3]

In 2008, a randomised controlled trial showed a clear benefit for treating refractory epilepsy in children.^[4] This added weight to conclusions drawn from the many earlier uncontrolled trials of the ketogenic diet's efficacy and safety, which already provided sufficient evidence to recommend clinical use. In children with refractory epilepsy, the ketogenic diet is more likely to be effective than trying an alternative anticonvulsant drug. There is some evidence that adults with epilepsy may benefit from the diet, and that a less strict regime, such as a modifiedAtkins, could be effective.^[1

The diet is now available in a 

canned formula called Ketocal.  I learned how to prepare it today and 

he had his first feeding this afternoon.  They will be checking 

his blood sugar a few times over the next 24 hours and will be 

fasting him overnight.  We have to check the specific gravity 

and ketones in his urine frequently.  This is something 

we will have to do at home too. They have to change some of 

his meds because they may contain carbohydrates.  Even 

one gram of carbs could throw off the whole balance.  They say

 about 1/3 of childtlen have a greater than 90% reduction in 

seizures with half of this # becoming seizure free.  Another

 1/3 have a 50% reduction. And 1/3 discontinue the diet due to 

it's ineffectiveness or difficulty.  Some people see results in the 

first few days, some take 6 weeks.

Wish us luck!

Day 7

Today was a quiet day.  Ambrose  seems to be feeling much more like himself but is still requiring CPAP support.  He had two "trach collar trials" today.  Meaning he was off the CPAP and getting his O2 through a trach mask as he usually does. The first time was for one hour, the second time for two hours.  He did well but was working a little harder to breath toward the end. Tomorrow they will likely try longer periods off.

Just like old times

I decided to post a picture of Sophia today.  This picture is of her 6 month birthday spent here in the PICU two rooms down.  Being here with Ambrose is odd.  It is so familiar.  It was Sophia's home away from home.  And mine too.  She spent somewhere in the neighborhood of 260 days of her life here.  She has been in nearly every room,  including the one he is in now.  Doctors, nurses, and respiratory therapists caring for him also took care of her.  In fact everyone at least knew of her.  She was famous around here.  Last night Ambrose had a nurse who I remembered took care of Sophia on her very first night here in June of 2003, and I mentioned it to her. She remembered, including the room #.  She said she remembered that night as she was a very difficult intubation. (before she had her trach.) 

Everything everywhere reminds me of Sophia, but especially here.  She was born here and she died here.  She struggled here and she made miraculous recoveries here.  The most intense moments of my life have been spent here.  I think Sophia is here watching over her baby brother and  all of  his fellow patients.

Day 5

Well once again they attempted to take Ambrose off of the CPAP.  After about 2 hours he was coughing alot, breathing rapidly, and his sats were dropping.  Again he seemed to have some collapse on the left and needed to go back on CPAP at an even higher FIO2 to get back to where he was before.  He is clearly not ready to come off of CPAP which he needs to do before going home.  It is possible to go home on CPAP but it would be through a vent which we would have to learn how to use.  It' s a big production. 

His trach cultures did grow out some bugs -hemophilis, pseudomonis, GBH? (don't know how to spell them) but they should be covered by the antibiotics he is on. 

...I was just told it is still a possibility that he might be able to start the ketogenic diet next week.  I keep hearing conflicting info and his neurologist won't just come talk to me himself.

I was also trying to get his hearing aids, which were ordered 6 weeks ago after his ABR (hearing test).  I received a call two weeks ago that they were in (here at the hospital) and we needed to schedule an appointment for a fitting.  Now the audiology secretary insists that they have yet to be ordered. And  the audiologist is out sick.

I freaked out earlier when, after spending a couple of hours trying to upload pics to create a Sophia slideshow, this blog disappeared and gave me an error code and saying that it could not be saved.  I found directions on a message board on how to restore it.

...Ok Neurologist just came to talk to me finally.  The dietitian claimed the Neuro didn't feel comfortable starting the diet until he was healthier.  The Neuro said the dietitian was the one who cancelled it. Either way, I don't think it's going to happen.

...Am now told we will probably be here at least until Monday.

Aaarrgghh!