Still on track (and trach) for tomorrow

Ambrose is doing well off CPAP and will (God willing) be going home tomorrow.  I think he (and his Mommy) are ready!  

Hearing aids, new trach, and one big rash

Ambrose finally got his hearing aids. It was quite a production.  We had to bring him to the audiology department as they needed to use some equipment that is not portable to adjust his hearing aids while he was wearing them. It was quite a production as there is no O2 in any of the rooms there and the PICU  generally does not like to send there patients out of the unit.   I appreciate them letting us do this as we have been anxiously awaiting getting them and it will eliminate one of the many trips back to the hospital (which is a little over an hour from our home.) for follow up appointments.  It is hard to say if they are helping him.  It will take a while for him to get used to them.  He was having quite  bit of feedback in his left ear and it was agitating him.  He was rubbing his ear against thing to knock it out. They are both in now and not bothering him.

Following that adventure, the ENT doctor came to try a different trach. He put a scope down his trach with both the trach he had and a longer one. He let me look through it each time.  It was quite interesting.  (I have literally seen my children from the inside out - down trach, mri and ct scans of spine, brain, back of eyeballs, plus X-rays of entire body- and I can truly say they are beautiful inside and out!) The first one, the trach that seemed to be hitting the back wall and occluding his airway, I just saw pink. The second time, with a longer trach, I saw two holes, where it branches off into the lungs.  He put in another cuffed trach to see if the cuff might keep it in better position. The cuff didn't seem to make a difference in that regard, but is much harder and more uncomfortable to change.  He may try another before we leave on Mon. He says Ambrose may need a longer than usual trach to get past the area where it hits. He has a retrolisthesis of one of his cervical vertebrae around the area of his trach. That basically means that it zigs when it is supposed to zag.  I still think this one occludes in certain positions.

Ambrose has become one big rash.  It started around his trach, then horrid diaper rash from the diarrhea and C-diff caused by antibiotics, then around his g-tube and under his lip, then spots allover his chest and abdomen from the sticky leads to monitor his heart rate, now heat rash all over back, back of legs,  arms from lying down with synthetic waterproof pad under flannel blanket.  They have many strengths here in the PICU, but skin issues are NOT among them.  It has been very frustrating.  Ambrose has excema, as Sophia did, and most of his skin issues are excema related.  We use an excellent ointment called Pro-topic which has worked really well and is NOT a steroid.  However, many people here who are unfamiliar with its use are afraid of it because it is made from a drug which, taken internally, is an anti-rejection drug.  They were afraid it could effect his immunity, so  they didn't want me to use it and actually removed it from his room.  Every few days they changed their plan.  When they finally consulted dermatology, they abandoned the dermatologist's plan after less than 24 hrs, then eventually consulted them again. Guess what they wanted me to use (on everything other than the diaper rash) - Protopic.  I had an extensive discussion with him about this.  It cannot effect immunity and is in fact more benign than other things they considered using. (steroids) That was yesterday.  I have spoken to several people about it and they still haven't replaced the damn ointment.  It is very annoying.  This is not a life threatening issues but causes him more discomfort than any other aspect of his illness.

I think I've rambled on enough. (and done it all with one hand while holding Ambrose with the other.)

Have a great weekend!

Vampire Baby

My dear darling boy has bottom teeth that are like very sharp pointy spikes, just like Sophia's were.  He, like his sister, has a deep groove carved into the underside of his tongue, which sometimes bleeds.  He needs to have his teeth filed, as Sophia did, which they cannot do here.  This morning Ambrose, who I discovered is teething, bled for a few hours.  It came out his mouth and nose.  I suctioned some out his trach and brown blood came out when I vented his G-tube.  It was so upsetting to watch him bleed and know it hurt and there really wasn't much that could be done.  He got some Tylenol and clonazepam and fortunately it stopped.  It is the less complicated issues, such as a raw diaper rash and bleeding tongue that can be the most troubling to me because they seem to be the most painful.  With all the advances in medicine and technology, is there no way to heal a diaper rash?

Great news x 2:

1. There's talk of letting us go home on Monday

2. Great nurse practitioner has managed to coordinate our getting Ambrose to the audiology dept. tomorrow morning to get his hearing aids at long last.

Big Brother

I have spent an awful lot of time in this hospital. More than anyone person ought to in several lifetimes.  I have had good experiences and bad ones, much more good than bad. I have seen people go above and beyond in their jobs, and some that have not. But this is not about this hospital or the staff, this is about a wonderful and very brave little boy. If anyone is reading for any reason other than out of love for Ambrose, you are not welcome here.  It is very difficult watching your beloved child go through serious medical problems and having to depend so heavily on others.  What I can and do do is to be here as much as possible to comfort him, to advocate for him, to make sure all of the details are passed along properly amongst the constantly changing staff and to make sure he gets the care that he deserves.  I do not need the extra stress of feeling someone is reading over my shoulder.  That I cannot express myself freely.  That I must censor myself.

Intentions

I began this blog to keep friends and family updated about Ambrose's heath.  I have enjoyed sharing my thoughts and feelings regarding the trials and tribulations of raising a medically fragile special needs child.  A few days ago I vented my frustrations with an anonymous nurse's care.  I did not expect anyone would be reading this who would know who I was speaking of.  Apparently that is not so.  I did not intend to embrass anyone.  I hope that those who read this are reading out of interest in Ambrose only.  I feel somewhat inhibited now.

Trach collar trials

Ambrose just completed his first 2 hour trial off of CPAP and he did great!  In a couple of hours he will do it again.  The best thing about it, apart from the obvious being one step closer to home, is that I can scoop him up and hold him to me without worrying about lots of gear pulling on or twisting his trach. Yeah! 

I am getting ahead of myself. I almost forgot to mention that he passed  his 24 hour trial off pressure support with flying colors, which was the precursor to his current step of weaning off the CPAP. So he is totally done with the pressure support. Yeah again!

The nurse practioner, who has been gone since last Thurs, said she couldn't believe this is the same baby when she listened to his breath sounds.  Everyone has been saying he sound great. So, I am hoping he will be able to wean off the CPAP much quicker and easier this go 'round.

I wrestled with figuring out how to add a hit counter to this blog and finally figured it out on Sunday. I started it at 150 and am amazed at how fast the # is rising.  Thank you to all of you who are reading this.  And mostly, Thank you for keeping Ambrose in your thoughts and prayers.

Badge of Honor

This is a picture of Ambrose holding the badge of honor he earned.

Ambrose spent 10 hours off of pressure support  yesterday and is now attempting to stay off.  Then he will start "trach collar trials." (meaning no CPAP, just his usual O2 through the trach mask, which will make him much more portable.)

His IV came out last night.  Amazingly it was still going after 8 days.  The tape was damp from his bath and dressing him apparently dislodged it.  Oh well, it's gone now.  They decided to stop the antibiotics, except for the one treating the C-Diff, which is given by G-tube so he does not need an IV.  Hurray!

Ambrose sends a big THANK YOU to all of his friends for keeping up with his expoits through the blog!

Memorial day Part 2

I just found out that the child I was worried about was flown to another hospital. 

Memorial day

Today Ambrose will be off of his pressure support all day.  

He had a bath and shampoo and has soft silky good smelling hair.  That was followed by a nice snuggle with Mommy, which was cut short due to an explosive diaper.

I try to mind my own business around here and generally have no idea what is going on with other patients. (Unless they are screaming and hollering like that kid a few weeks ago.) The staff is discreet and the rooms are private.   I try not to look in other rooms when I go by as I don't like it when people stare in at my baby.  I generally just have a sense if one is  a baby or a bigger kid and you can't help notice when there are large #s of medical personel hanging around a room. Every once in while I notice a room that had been a hotbed of activity is now vacant.  (I'm sure it happens much more often than I take notice of.) That just happened.  It is scary and sad.  I can't help but wonder and hope that maybe the child was transferred elsewhere but that is probably not the case as I know all too well.  I don't really want to be aware of children dying but it bothers me that it can happen without much notice, life just going on all around like nothing happened.  I wouldn't want to work here.  No one should get used to children dying.

I'm sorry to end on such a sad note.  I think I need to get out of here for a little while.

You can comment now

I'm pleased to report that Brosie is doing well with the trial periods off of pressure support and he is sounding great!  Today he will have 3  3 hr. periods off pressure support.  He seems fine with it.  I am thrilled that he is sounding so good but am growing impatient.  When he no longer needs pressure support he will still need to be weaned off CPAP.  Amazingly his IV is still working.  This is day 6. A record.

I figured out that there was a default setting that did not allow comments from anyone other than blogspot users.  I have changed this to allow anyone to post a comment.  Help me see that it works.

I just finished reading Life of Pi.  It was great.  I'm sad that it's over.

Today

Hello to all of Brosie's friends!  I'm' sorry I didn't post yesterday. There wasn't much news.

Yesterday morning it was reported to me that he had some desats.  Then I witnessed what was clear to me to be another episode of his trach occluding.  The respiratory therapist was there and he agreed with me.  During rounds the nurse practitioner reported his desats as reason to not change any vent settings.  I suggested the desats were caused by the trach occluding.  The respiratory therapist backed me up, so then the Dr. listened.  He wanted to only lower the CPAP by one and leave the pressure support as it is.  I said I would be more interested in getting him off pressure support so he will no longer need this cuffed trach that is causing him so much trouble. (as previous Dr. seemed interested in doing.)  He thanked me and agreed to lower that instead.  But he is very conservative and only lowered it from 8 to 6.  The resp. therapist later convinced them to trial him off of it for an hour.  They compromised at 30 min.  He did great.  They did an hour off later and he did great with that too.  (The resp. therapist told me I should go to nursing school.  Which is of course my plan.)  Today, previous more aggressive Dr. returns and agreed to let him go off pressure support for up to 2 out of every 4 hours during the day and back on overnight.

Other news is that his stool tested positive for C-Diff.  Basically it's bad diarrhea caused by antibiotics which they treat with the oral version of the same antibiotic he received by IV which caused it. I can't quite wrap my brain around that one.

I don't want to leave you with the thought of diarrhea so....sunny days, fresh flowers,  chocolate, wiggly little babies, and a soft pillow...

Admission 2, Day 4

Well...another day has gone by with no significant events or changes.  He is still on pressure support of 8, PEEP of 7, FIO2 of 30.  They didn't want to make any changes  as he still has some diminished lung sounds on the left, some crackles and wheezes occasionally.  

The second blood culture is final with no growth.  Yeah! so he can stop the vancomycin.  He is still on the other IV antibiotic Zosin. The only thing they are treating is a presumed unresolved pneumonia.  Pseudomonas and group b strep grew out in his trach culture, as they did last time. It is thought that he is probably colonized with them, but cannot assume so and must treat them.

He has been having a lot of seizures the last 24 hrs. or so.  I really don't know if the ketogenic diet is helping.  They say it can take up to a couple of months to work for some people.  It seemed to be helping right from the get-go, then has had days with a lot of seizures.  They have tinkered with it several times, as it first affected his blood sugar, then he had some weight loss. 

Right now he has diarrhea and a very very sore (bleeding) little hiney!  It breaks my heart.

By the way, after I make a new post, I check back frequently hoping to find some comments.  It always perks me up to know people are following his saga.  I have heard from a couple of you that you were unable to leave a comment.  I'm not sure why that is.  Try if you can.  Either way, I thank you all for reading this and keeping up with Ambrose's life.

Mr Boo Boo Head part 2

Well, Ambrose never did get taken off pressure support today because he decided to turn dark blue and drop his sats to 6 for no apparent reason.  Possibly a bronchospasm or plug.

He did recover on his own before any intervention but we were not amused.

Mr. Boo Boo Head

Just wanted to let you know I have counted 9 little scabs on 3 different veins in Ambrose's forehead.  The vampires keep attacking and they are the easiest veins to get in to. You can see a bandaid on his head in the photo to the right.

I just left David's House where I saw a bald little girl and her mother with shaved head.  There's nothing like a mother's love!  It was hard to hold back the tears.

I came in to find Brosie alert, wiggly, clean, and dressed. Horray! 

They put him back on pressure support overnight to give him a rest and because his CO2 levels were creeping up a bit.  But he is down to 30% O2.  

The PA (physician's assistant) just came in and said he sounds the best he's ever heard him! The ? is whether it is because he had the pressure support all night and may dwindle throughout the day after being off of it or if he no longer needs it because he sounds better.  We must wait and see.

Ambrose's 16 month Birthday

Ambrose is improving.  He is currently just on CPAP, no longer on pressure support.  He is being treated with a second IV antibiotic, Vancomycin, for a possible blood infection.(coag negative staph) Since he has no clinical signs and the blood took three tries to get, they think the sample was probably contaminated.  They redrew a new sample around midnight last night.  They will treat him for at least 72 hours just to be safe. Of course a blood infection-sepsis is deadly serious, but Ambrose has no fever or any other signs of serious infection.  In fact, he seems quite comfortable and alert.

Yesterday afternoon Ambrose seemed to be really struggling to breath.  The attending thought he looked like he was having some airway obstruction and called for an ENT consult.  The ENT resident scoped him through his trach and indeed it looked like he was seeing the back wall of his trach instead of down into his lungs.  (Ambrose used a neonatal length trach since it seems the pediatric length kids his size would usually use doesn't seem to fit him.  From x-ray he seems to have plenty of room length wise, but when scoped it appeared that it didn't sit right in Ambrose due to his unusual anatomy and hit the back wall of his trach, causing it to obstruct.) When he was changed to a cuffed trach yesterday, it was a different brand as his brand does not make cuffed trachs in the neonatal size.  Even though this trach is no longer than his usual one, there seems to be a slightly different angle which is also hitting the back wall.  Amazingly, a rolled towel under his neck/shoulders drastically improved his breathing.  It seemed to correct the angle of the trach and he was suddenly breathing easily.  If he continues to need no more than CPAP he can go back to his usual Neo Shiley uncuffed trach and alleviate this extremely inconvenient problem.  Aparently there is a flexible trach we may special order and the possibility of getting custom size  trachs.  Nothing but the finest for little Brosie.

Below is a picture of Ambrose in his hospital johnnie, featuring little boys and girls in space, and his new "boxing gloves", otherwise known as hand splints.

His IV, placed precariously in his right armpit (on the third attempt), is holding up for now.  It is in such an odd spot because he has so few acceptable looking veins.  Say a little IV prayer that it will last as long as needed.

I hope you  all get a chance to get out and enjoy this beautiful day.

Back in the PICU-Damn It!

Well, we've been home since Tuesday afternoon.  I've been worried about him ever since then. He has been sounding crappy, needing lots of suctioning, and seeming uncomfortable.  On Friday morning I packed our bags expecting we may be sent back to the hospital at our scheduled appointment with Ambrose's PCP.  She didn't think he sounded so bad and sent me home to give him albuterol and chest PT.  He's had trouble maintaining good sats, developed a fever and had sternal retractions by Sunday evening.  I took him to the local ER, knowing he needed to go back to Dartmouth.  We arrived, via ambulance at 2 am.  I'm running on no sleep.

He didn't sound so bad last night but his chest X ray told a different story.  It looks even worse than it did when he arrived 3 weeks ago.  They put him on pressure support on the ventilator.  That means he is breathing on his own but with extra pressure supplied by the vent.  He triggers the breath and then it gives him extra pressure to open his lungs more, then CPAP to prevent lungs from collapsing on exhale.  I had to change his trach at 4:30 am to a tight-to-shaft cuffed trach due to his having a big air leak which prevents them from ventilating him adequately.  They didn't have the correct size in this whole huge hospital so we had to use a size smaller and they had to order the right one.  

They poked him many times for blood cultures. In a little while they will be trying to put in an IV. (Not an easy task.  Ambrose is a notoriously difficult stick as was Sophia. ) They agreed to not put one in unless they determined that they really need to treat with IV antibiotics. We are waiting for Amy, an IV whiz who put his in last time. Then they need to straight cath him for a urine culture which will also not be fun.  I've asked them to give him some ativan but it may not get here in time for the IV.  (They are sending her down from another unit)

He has been coughing a lot and seems very uncomfortable.  Hurry up with that ativan!

Gotta go. Please keep Ambrose in your prayers!

HOME

Just wanted to let you know that we are home. Getting out of there is always frustrating. Lots of waiting around for paperwork when you are very anxious to just get out of there.   Ambrose is still having lots of secretions and was up ALL night needing lots of suctioning, so needless to say I have not gotten any sleep either.  He had lots of seizures yesterday, better today. We are also having some issues with our O2 system. I feel I have soooo much to catch up on.  I am glad to be home but a little overwhelmed.  We also have 5 upcoming appointments set up in the next 6 weeks. Ugh!

Tomorrow, Tomorrow, I Love Ya Tomorrow

As of this writing, Ambrose has been off CPAP for 34 hours.  The plan is to get out of Dodge tomorrow. Yeah!  He is doing great!  I am trying to tie up loose ends.  I got all of his new scripts into the pharmacy.  He had an orthopedic consult, for suggestions re: foot splints, scholeosis. Fine tuning diet, skin rash issues, ...

We have traded our wretching, coughing, hacking neighbor for a horrible teenage boy who frequently has loud intimidating swearing outbursts about getting the F out of here and calling the nurse "you  F----in' idiot."  It is really bothering me.

Ambrose is still having some seizures, but less than before.  It seems to me he does better with slightly lower ketones than the 4+ that is the goal.  I'm not sure yet how to control this.

Can't wait to get home.

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!