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.

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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.