Monday, December 28, 2009

Merry Christmas to all ...

Little Ambrose has been doing pretty well.  We just got a stander loaned to us and he doesn't seem to mind it.  It is quite a production putting on his AFOs, then knee immobilizers, then strapping him in.  Hopefully it will help him.  Doesn't he look like some kind of robot in it?
Ambrose has woken up crying a few times and I don't know why. It is always out of a sleep.  Did he have a bad dream?  It is so sad because he hardly ever cries.  With his CPAP on he is able to make real crying sounds.  Look for video in sidebar.

Friday, December 11, 2009


We are now home. Ambrose recovered from the anesthesia after a few hours.
The MRI showed that his spine has not gotten any worse and showed no evidence of any damage to the spinal cord.  They may want to do some flexion/extension studies as an outpatient.
Ambrose did well at the hospital then needed a huge amount of O2 when he first got home and has since settled back down.

Thursday, December 10, 2009

Spinal Exam

It is now 10:30pm and I am waiting for Ambrose's paralytic to wear off so he can come off of the ventilator.  This was necessary to keep him extremely still for a 90 minute MRI of his head and C-spine.  Ambrose has a couple of vertebrae near the top of his cervical spine that curve dramatically forward causing his spine to make an "S" and possibly impinging on his spinal cord, which could potentially interfere with breathing.  It was looked at when he was a week old because Sophia had had a similar issue.  Her C1 vertebrae was heart shaped. She also had a tethered spinal cord, meaning the cord, which is usually free floating but hers was attached at the bottom.  Also both of them have problems throughout the spine where none of the vertebrae fit neatly into each other. They are supposed to stack like tuna fish cans and theirs just don't.  On top of that they both have scoliosis.  At the time it was felt that it didn't look as bad as hers.  Last fall he had an emergency quick brain MRI  to rule out hydrocephalus.  It also showed the C-spine but no one was looking at that.  A few months ago his neurologist was reviewing his files and saw this and was concerned with how bad it looked and said it looked much worse than the earlier study.  I was very concerned to see if it has continued to get worse.  Earlier today, the neurosurgeon came to talk to me as she is the one who will review it and who also followed Sophia's spinal issues.   She said his spine looks "really bad" and "worse than Sophia's."  That comment is based on last year's quick brain (which doesn't provide as detailed information since it is very brief).  I was a little shocked to hear that.  She showed me the images on the computer and yeah, it's really curved forward in a spot that would make it extremely difficult if not impossible to ever correct.  (Not that we'd necessarily want to pursue that).  It might be something that could benefit from some type of bracing but we have to wait and see what the images tell.  
We should be able to go home tomorrow but want to wait to talk to neurosurgeon about this and she has some surgeries tomorrow so she wasn't sure when she's get here.
It's now 11:15 and he is still on the vent.  They tried twice taking him off and he wasn't ready.  I had hoped they weren't going to have to give him paralytics but the images were initially too blurry as he was still moving.  As you can imagine they would completely supress your respiratory drive and require you to be ventilated.  I think I'm going to be up late as I really want to see him come off the vent and breathing on his own again.  They told me it can take up to 2 hrs to wear off and they gave it to him at 9:15.  It's been 2 hrs. now.

Some Hospital pictures

Wednesday, December 9, 2009

Ambrose back in PICU

Darling Ambrose, while very stable most of the time, has had several unexplained desats (drops in blood oxygen saturations indicating he's not getting enough O2) which have occasionally required bagging (manual ventilation by ambu-bag) to get his sats back up. Then once he was over it, he was absolutely fine or even better than before.  Last night, or rather this morning at 12:45, he had an episode which did not resolve with bagging.  Bagging would bring his sats up to 100 but when I would stop and switch him to CPAP with maximum oxygen (10 L- a lot!) his sats would fall again.  We bagged him off and on for 45 min and, impending blizzard on the way, headed out to the BMH(my lovely local hospital, and employer) ER.  Of course by the time we get there he is stable and able to start coming down on his O2.  Despite being stable I feel that something is obviously going on and want everyone to get their heads together and figure this thing out.  So by the time the DART team arrived at BMH it was 4:15 am and I had to drive myself up to DHMC in the snow.  Boy was I tired.  We arrived at 5:30 am.  He has been doing wonderfully ever since.  Thank God!
I have requested numerous consults ( quick brain MRI and consult with neurosurgeon  previously scheduled for next week to check his C spine "retrolisthesis" hopefully will occur tomorrow), scope by ENT doc to check trach accompished, (looks OK. I had thought the extra long length of his custom trach was causing the coughing he experiences often after moving and sometimes precipitated spitting up.  He is willing to try a slightly shorter trach with the same custom angle.), consulted with pulmonologist, consulted with GI doc - will be doing an upper GI tomorrow to look at degree of reflux and possibly get info about if his Nissen fundoplication (which should prevent reflux) has loosened up.  If that doesn't give enough info may then persue a PH probe test.
Hopefully he can go home in a couple days.  He has some crackles and coarse breath sounds but all labs and vitals seem OK, no fever, no pneumonia.  Elevated CO2 levels.  Will try higher peep CPAP tonight and repeat blood gas in the a.m.
Ahhhhhhhh.  Hope to get some sleep tonight and hopefully some ideas.  I fear we may leave with several possible theories but no answers or solutions.

Saturday, November 14, 2009

No more fevers but some crackles and still spitting up a few times a day. I hope he continues to handle it well.

Thursday, November 12, 2009

We are all moved in to our new cozy home. We are really liking it, especially the fact that Ambrose and Mommy now have a bedroom to share just through the wall from the living room and no longer have to sleep on a futon in the living room. Since it is a single story home Ambrose can go everywhere. Yeah! He's actually been sleeping better too! There is still a LOT of unpacking to do though.
Ambrose has been staying out of trouble, but has us concerned as he currently has a fever. He has been spitting up a little every day. (He had Nissen Fundoplication surgery to prevent reflux when he was 6 weeks old. It will loosen up over time, much quicker in children who have seizures. Sophia's also loosened up after about 18 months. She eventually got a G-J tube, which sends food into the small intestine instead of the stomach. It stopped the reflux but has problems of its own. Redoing the surgery is more complicated due to the scar tissue that forms) In the spring he started being able to spit up a little, but it bacame very infrequent after starting Prevacid a couple of months ago. I'm not sure what changed, but it is daily occurance, despite using a farrell bag, which attaches to his G-tube to allow pressure to be relieved and can often prevent actual vomiting.
The main concern is him aspirating the refux, which he seems to do. There are times, including this morning, that it seemed pretty clear that we were suctioning formula from his trach right after he refluxed. There is not much we can do about this which is very frustrating since it can cause an aspiration pneumonia. Sophia had 3 life threatening pneumonias before she got her Nissen.
Ambrose had a 101.4 fever this afternoon, along with increased seizures. It came down with Tylenol. I have put him on CPAP and the good news is that he is NOT requiring any more O2 than usual.
Please keep him in your prayers. I WILL keep you posted if anything happens.
On a positive note, he has been having a lot less seizure activity lately. He's actually had a few days each week with ZERO seizures! Previously un heard of.
Ambrose wore his Amazing Ambrose superhero costume for Halloween. Sophia was Super Sophia on her second Halloween. I will find a picture to post.
I have begun working at Brattleboro Memorial Hospital and I love it!
I hope you are all well. Please keep Brosie in your prayers and Sophia in your heart!

Sunday, October 18, 2009

Tuesday, September 29, 2009


Life has been quite busy lately and I have been meaning to post so many times. I hope you haven't all given up on me.
My darling boy is doing well! He is now almost 21 pounds!
He started taking prevacid a month ago to cut down on stomach acid, which has significantly improved the reflux problem It only happens every once in a while now. He had another increase in his Zonisamide (following an increase in seizures) which has also helped with the seizure frequency. He averages about 3 a day now, which we can live with.
He had his MMR and varicella (chicken pox) and Hepatitis A vaccines which caused him several days of fevers (which are always accompanied by extra seizures). Frustrating because you know it is probably the vaccines but cant help but worry if he is actually getting sick.
He has been wearing his "Boots" (AFO foot splints) and knee immobilizers as you can see in the pictures. He doesn't mind the boots and is usually a good sport about the knee immobilizers. He only wears them for a 30-45min a couple of times a day. He does seem to be able to straighten his legs a little bit more.
Ambrose and Mommy got our flu shots last week and are anxious to get the swine flu shots as soon as they are available.
Don't forget to get yours!
We have sold our house and are closing on the 21st of October, so we have a lot of work to do. We are moving locally and downsizing which will be a big help financially. I'm just trying to figure out where I'll put all of Brosie's stuff. The boy requires a lot. His monthly medically supply order alone takes up a lot of space. Then there's 2 lg. liquid O2 cylinders, 2 huge "M" tanks, several small travel tanks, more equipment, TOYS, TOYS, special seating, exercise/physical therapy stuff, crib,...
I am taking a nutrition class this semester and applying to Vermont Technical College for next year. Wish me luck.
Please keep Ambrose and Sophia's friend Ben in your prayers. He is in the PICU again. There is a link to his blog in the sidebar.
Sorry it has been so long. Hope you all have a wonderful day.

Saturday, August 22, 2009

Wow! I have really been slacking on my blogging! Sorry about that!
Brosie is doing pretty well. Please see new video of him on top of video bar (to the right. If it is not linking to the correct video I have added a link to in in the LInkin' Logs section just below the vido bar). Also, pictures from Sophia's garden of tall roses reaching up to Heaven for Sophia to smell them, as well as some cute Brosie pictures.
He has seen some improvement in his seizures since starting a new med Zonisimide (a.k.a. Zonegran) and discontinuing Phenobarbital. Although he has had a few spells of increased seizure activity, including this morning.
He's always got to keep us on our toes, so he traded seizures for some GI troubles. He seems to sometimes have decreased gastric motility, causing reflux and occasional constipation, which is so unlike him. His diet is extremely consistant but this problem seems to come and go. It's not clear what is causing it but he did have a consultation with a new GI doctor, so that's a start.
He is growing well. He grew an inch this past mont and is up to 28.5" long and 19.5 pounds. He's 3.5 " longer that Sophia was at this same age and roughly same weight. He really loves to stand but cannot straighten his legs all the way. They are quite stiff, as are his hips. We do stretches but it hasn't changed much. He still hasn't received his foot splints and knee immobilizers. (I know that last one sounds horrible.) He had a fitting with the foot splints but they had to take them back to make adjustments. He didn't seem to mind them though. We got similar ones for Sophia but she wouldn't keep her heel in them. She was like Houdini. She would always get out somehow, so they were of no use to her.
We have been busy as we have been trying to sell our house. We want to stay in the area but need to downsize. Of course this is not a good time to sell a house, but you've got to do what you've got to do. We worked hard on spiffing it up, decluttering and trying to keep it clean. We've had several lookers and one offer. Everyone seems to like the house but are picky about things we can do nothing about, like highway noise and a right of way through our property that has never needed to be used.
I am planning to start taking a few classes toward a nursing certificate/degree.

Saturday, August 8, 2009

Ambrose Speaks!

Click right to see video of Ambrose being very talkative while wearing his CPAP valve. In fact he stayed up all night talking.
More videos to come.

(Still trying to work out some kinks.Let me know if it works. His videos keep being replaced by some nature videos.)

Friday, July 31, 2009

Brosie in our neighbor Debbie's pool this year and last:

Monday, July 27, 2009

Doin' fine in the summertime

I'm pleased to report that Brosie is doing well.  He seems to be back to his baseline respiratory status and O2 requirement.  We are continuing to use the CPAP at night only.
He started a new seizure med, Zonisamide, last Wednesday, and is simultaneously weening off of Phenobarbital.  It is to early to say how it is working, especially since he started at a very small dose.  I am excited about getting him off of the phenobarbital.  We have talked about this for quite a while and have actually reduced his dose several times already.  The problem is that it can interfere with the absorption of other meds, and more troubling is that there are questions about its effects on the developing brain. Despite this it continues to be the first drug they put epileptic babies on.  
Brosie went in my neighbor's pool last week.  I just put his legs in, apparently it was too cold for him so he climbed right up me.  Instead we floated him around on a raft.  Hopefully the water will warm up soon and we can try again.  Of course it is scary with the trach, but I think it is a nice sensory experience.
We hope you are all enjoying your summer!

Sunday, July 19, 2009

A Year and a Half!

Today is Ambrose's 18 month birthday.  I have had the joy and honor of holding my baby boy in my arms for a year and a half!  Thank you God!  He is sweet, loving, easy going, strong, brave, feisty, warm, soft, funny, and all around AMAZING!
He is doing very well. He got over that cold very fast.  His secretions are finally drying up.  He is sounding good and is in his usual range of O2.  He is growing well.  He has finally caught back up to where he was before his hospitalization and ketogenic diet.  The other day we saw the ENT who scoped his with the latest custom trach (slightly longer and with a slightly increased angle to it) and it looks to be quite good.  It is a little long (close to the krina) but is not leaving room for any trach collapse below it and it doesn't seem to be bothering him.  This is good news.  We will have to sterilize and reuse them because they cost nearly 4 times as much as the nearly identical non custom ones.
He also had some new ear molds made which will hopefully stay in better.
He has slept better for the past few days as well.
We will be trying a new seizure med-Zonegran (once our pharmacy figures out how and if they can get it) and weening off phenobarbital.
Happy Ambrose's half-birthday!

Monday, July 13, 2009

Ambrose Fan Club

While Ambrose is still feeling a bit under the weather, he has not had any more fevers.  Yeah!  His secretions are still thicker and he is sleeping more  (mostly during the day) and using CPAP a bit more but not significantly up on his O2. Way to go Brosie!
This is a picture of Ambrose with his nurse Rebbecca/"Auntie Beck." (Vice President of the Ambrose Fan Club.) Yes, it can get a little confusing around here with the names.
We got the shirts from
They have over 3 billion designs including thousands of names available on a wide variety of shirts, bags, mugs, signs.  You know if they have the name "Ambrose" they've got pretty much everything.  They are from some undisclosed country apparently because some of their designs don't translate very well, as in the Obama slogans: "Obama is my Homebody", and " The power to change the things," and "I'm voted for that one."
I'm sure those are big sellers!  Feel free to join the Ambrose Fan Club and send me a picture of yourself.

Sunday, July 12, 2009

You give me fever

Well, it's official: Ambrose has caught my cold.
He has a 103.7 degree temp.  His secretions are thicker and yellower.  He's had 10 seizures from midnight to 10am today and his heart rate is currently 183.  Hopefully he can weather this at home.  Please keep him in your prayers.

Saturday, July 11, 2009

Ambrose's World

Ambrose continues to be down on his O2 and spending much less time on CPAP. Go Brosie, Go! So far he has not caught my cold.
His "hearing guy" (it's just so much easier to call him that than "consultant from the parent infant program of the Vermont center for the deaf and hard of hearing of Austine school for the Deaf) set up his new ear molds connecting to his hearing aids worn on his shirt.  The idea is to cut down on feedback and keep them in better.  It definately helps with the feedback and we have been able to keep them on for longer periods.  The long tubes do create new ways for them to be pulled out.  He does not bring his hands to his ears to pull them out, like many kids do, but he can catch onto the loops.
We compared Ambrose's audiogram (results of his ABR hearing test) with Sophia's.  Although they were both described as having "moderate to severe" hearing loss, he seems to have more hearing than her.  Yeah!  We definately want to give him as much access to hearing as we can, especially since he cannot see.  
Imagine how hard it would be to learn about your world,  starting out with no vision and limited hearing and limited movement.  How does he know how big the world is around him?  How does he know how big the room is?  He knows that we pick him up and move him from one place to another. Sometimes we sit in a special seat and take a bumpy ride with air moving against him.  Sometimes we sit in a special seat and take a smooth ride and end up in a place with different smells,  different sounds, where they often undress him, squeeze his leg, stick things in him, and sometimes poke him with sharp things.  
Sometimes we slide into a vat of cool round things, sometimes we sit in water and have it poured over us.  Often there are interesting things to touch, kick, and bat at,  and interesting sounds, and lots and lots of hugs and kisses.
When we read stories, how does he know what it is about without seeing the pictures.  How do you learn what words mean, especially if you can't hear then clearly?
Vision is usually the motivation for a baby to try to move.  Let's get to that toy, or to Mommy.  Thankfully Ambrose loves to move out of the joy of moving and doesn't seem afraid of anything.  He is trusting and curious.  And OH SO WONDERFUL! 

Tuesday, July 7, 2009

Greetings from the ball pool

The amazing Ambrose has been down on his oxygen the last few days and sounding good.  Hurrah!  He's still up to his old tricks of staying up most of the night.  Last night he slept from 1130pm until a seizure woke him at 2:30 am. He then proceeded to wiggle all night until he tried sleeping around 8 am and was interrupted by a cluster of seizures over the next hour and a half until he finally slept after getting his seizure meds.  (Seizures are bullies!  They like to pick on defenseless little cuties who never did anything to them!  They do not abide by signs restricting them from the premises.  They do not listen when you tell them to , "get off of him," or " leave him alone!".  Nor can you chase them away with a broom.)  The neurologist says his ability to mount a seizure is "impressive."  I'd rather him not be impressive in that way.
Looks like yet another rain storm about to start.  Hopefully we will not lose power, which is a challenge with some of his medical equipment.

Saturday, July 4, 2009

Happy 4th of July!

It's been a quiet week - lots of playing, NO appointments!  
Ambrose actually slept all night, for 11 hours the other night. Then, last night he was up from 3:30am to 9am.  There is just no rhyme or reason.
He has been up on his oxygen, which concerns me. His oxygen system is pretty convoluted with liquid oxygen and compressed air run through a heated chamber with sterile water to provide humidification and a bag of air, which is part of the CPAP system, It then travels through a hose with heater wire inside it to his trach.  There are many places there could be a leak or malfunction. But then when I switch him to his travel tank to go to the playroom, he is on his normal amount, which is reassuring.  Not sure what's going on there.
Ambrose will probably be sleeping till I leave for work.  Then he will wonder where Mommy is.
Ambrose has been making a lot of vocalizations.  He has a very sweet voice.  The CPAP helps with that by forcing him to exhale through his mouth or nose, forcing air out over his vocal cords.  He usually breathes in and out through his trach, below his vocal cords and therefore rarely makes any noise.
Gotta go. Seizure.

Monday, June 29, 2009

Magical Play Room

I finally cleaned out Sophia's Make a Wish playroom for Ambrose to use.  We have had very exciting adventures the last few days with the ball pool, that is entered via slide,  and exploring the "little room." 
For those of you who know, we had a make a wish for our daughter Sophia a few years ago.  We converted a screened in porch into a year round room and picked out lots of fabulous sensory toys which The Make a Wish Foundation of Vermont bought for her, including a vibroacoustic chair (way too big for Brosie), lots of switch toys, musical instruments and positioning aids.  I kept most of it, but the room, which doesn't have heat became something of a storage area.  I've been taking things out for Ambrose now and then but had never used the ball pit which was buried.  
The "Little Room", dubbed a "baby garage" by my visual educator friend Kerry, was designed to be used by visually impaired babies and toddlers.  You cover every surface with stuff so every move that is made creates an interaction with something, encouraging exploration and teaching about object permanence.
Now that I've gotten it cleaned out I don't know why I waited so long.  The time just seemed right finally.  Hopefully we will have LOTS of fun playing everyday!

Friday, June 26, 2009

The Greatest Boy in the Whole Wide World

Ambrose came with Mommy to her company picnic.  I was thrilled beyond words to take him somewhere other than a hospital or doctor's office and show him off.  I am so proud of him!  I think he had a good time too.  He certainly got lots of attention.
Today he was casted for AFO "softee" foot splints and "Knee immobilizers." (sounds terrible, huh?)
Hopefully he won't mind them and they'll be a helpful tool or we just won't use them. The AFOS will be black with flames because Brosie is just sooo cool!

Thursday, June 25, 2009

New Post - Finally!

Hello all.  Sorry for the gap in posts.  Thanks for continuing to stay tuned in.  It has been a hectic week with lots of work and not enough sleep.  Brosie is doing well and finally growing again since I switched him back to his regular formula.  He has been home for 16 days now.  Still having a lot of secretions,  (When will it end?)  and preferring to stay up all night.  
We are trying to get into a routine of putting in his hearing aids to do hearing related activities (stories, songs, musical instruments, toys that make noise) but frequently have trouble with feedback.  We will be experimenting with options to try to reduce this, such as wearing his hearing aids on his shirt connected by long tubes to earmolds (will be a few weeks until we get them.) They are not getting put in as often as I would like.  When a baby first gets hearing aids, he is at a "hearing age" of a newborn.  If they are worn four hours a day  it will take 6 years to give him the hearing experience of a one year old.
Ambrose still has a rash on his back. It's much lighter but never really went away.  
Yesterday he saw his orthopedist and endocrinologist.  We are working on getting some splints that the ortho prescribed, but she says if he doesn't tolerate them, she doesn't think there will be any harm to his weight bearing. (His ankles turn in and his feet out.  Will try to post a picture soon.)   We also talked about his scholeosis (mild) and its possible effect on his breathing.  Apparently it is possible to have surgery to increase the size of ones rib cage to help the lungs.  She was not suggesting that he was anywhere near in need of that, but it is interesting to know that it is possible, although quite frightening.
 The endocrinologist said the results of all labs he had drawn a few weeks ago (cortisol, thyroid, growth hormone, sodium) were all normal and he was very pleased with how he is growing overall.  He has been monitoring Ambrose since Sophia had many of these problems, which are all related to the pituitary and Ambrose and Sophia both have very similar, flat, abnormal looking pituitary  glands.  He says that doesn't necessarily mean anything.  He told us that some people don't even appear to have a pituitary gland and have normal hormone levels as other cells take over.  Isn't the human body amazing? Ambrose's sure is!  He has so many "abnormal" (I prefer to call them "unique") parts.
Today Ambrose is going to a picnic at Mommy's workplace.  Tomorrow he is getting casted to have AFOs (foot splints) made.  

Friday, June 19, 2009

Ambrose's 17 month Birthday

Today Ambrose is 17 months old.  He is doing OK, but still taking his time recovering from his illness.  He is still needing an incredible amount of suctioning, especially when he is staying up all night.  I am exhausted and determined that he will sleep tonight.  
Yesterday he saw the ENT doc to try out his custom trach.  This is a longer flexible shaft trach.  I was very disappointed when we discovered that it not only wasn't better, but was actually the worst of all!  He thought the longer length would prevent it from tipping back and occluding against the back wall of his trach, but that is exactly what it did.  I think the flexible quality of it may have been the problem.  He will now try ordering a custom (non flexible) Shiley trach, which is the brand he is used to.  I think the angle of its curve fits him better.  The doc looked down Ambrose's trach with the various trach tubes in place, with a scope attached to a video monitor, so we could all see.  I asked him to scope him with his current (4.0 Pedi Shiley) trach while sitting in his stroller.  It confirmed my suspicions that his trach partially occludes while in his stroller seat.  It did not seem to do this with the previous (4.0 Neo Shiley) trach tube.
Today his primary hospital doctor and her fabulous nurse did a home visit.  Can you believe there are still doctors who do that?  A very busy and wonderful neonatologist at that!   She thought he sounded pretty good and that he had had a virus and probably picked up an additional bug or two in the hospital.  She said he is "over reacting" to his virus by producing too much secretions to try to fight it but that he will probably be better in a few weeks.  I sure do hope so!  We also discovered that his home CPAP only seems to be delivering a PEEP of 3 to 4 cm instead of 5 (probably due to higher O2 flow rates in the hospital) but it seems to be sufficient for him.
He also had a fever last night just to keep me guessing.  Fortunately it disappeared and did not come back.
Oh Brosie!

Wednesday, June 17, 2009

Ambrose's first trip to the dentist

Ambrose was a very brave (and VERY FIESTY) boy at the dentist this morning.  He presented a huge challenge to the excellent pediatric dentist and hygienist who he saw to file his very sharp bottom teeth that were cutting his tongue on a daily basis.  I had hoped to take a picture but it was far to gruesome an experience plus it took 6 hands, including my own, to hold Ambrose. Despite all the hands, he was pulling his lower lip in to protect his teeth and it hit the drill a couple of times and got cut.  He aspirated some blood during this traumatic event. However, as soon as it was over, he was fine.  He is a true Champ!  His four bottom teeth are now blunt tipped triangles that will hopefully be kinder to his little tongue!

Monday, June 15, 2009

Happy Monday

Day 6 at home and still going strong.  Still having lots of secretions and crackles but he does seem more comfortable and active than when he was in the hospital.  He is spending a few hours off CPAP each day. His diaper rash is gone - Yeah!   He has gained a few ounces and had fewer seizures this weekend but was awakened 4 times by them this early am, followed by frequent suctioning.  
We had our first visit by a consultant from the Vermont Center for the Deaf and Hard of Hearing.  He had lots of great suggestions for optimizing Ambrose's hearing and dealing with hearing aid feedback.  He will start coming every 2 weeks.  
He will be getting his teeth filed on Wednesday and getting his new custom size trach on Thursday.

Saturday, June 13, 2009

Brosie at home, day 4, take 3

Brosie is enjoying being at home.  So far so good. He seems to be feeling better.  He is back to his ususal routine of staying up at least half of the night. Last night he got up at  4 am, rudely awoken by a seizure, followed by 3 more over the next 4 hours.  I am readjusting to my old routine of getting up every couple of hours to tend to his equipment, refill his feeding pump, change diapers, suction him, and respond to seizures.   
He had a random fever yesterday just to see if I was paying attention.  The rashes and diarrhea are improving.  He is getting used to wearing his hearing aids, although he has feedback issues.  He is constantly blowing bubbles out his nose when he is on his CPAP. (I always have to keep myself from typing "CRAP") He has an appointment to get his teeth filed on Wed. morn.  I will try to take before and after pictures, if he will let me.
I am about to take him for his first walk in ages.  I hope you are all enjoying this beautiful weekend.  

Thursday, June 11, 2009

Ambrose sends a big shout out to all his PEEPs - from HOME!

Brosie's home again, hopefully to stay this time! 
Sorry this blog has been so dry lately. Medical, medical, medical. Blah, blah, blah. 
I look forward to writing about non-medical adventures of Ambrose Brown, International Boy of Mystery. (Thank you Carole for that moniker.)
Thank you to all of Ambrose's hospital friends, and the rest of his support staff (that would be you, loyal reader.)
Brosie has his trusty CPAP set up at home just like in the hospital.  He woke up this morning to hugs and kisses, rather that blood pressure and temperature taking and blood letting.  Oh my!
Please stay tuned for pictures of the boy in action and hopefully news of him making a full recovery soon.
Peace out.

Tuesday, June 9, 2009

Ambrose says (I like) "PEEP"

I didn't post anything yesterday as I was waiting for any news worth mentioning.  I guess a quiet day in the PICU is a good day in the PICU, although it could also be a day he could be at home.  
I've heard for the last month that the CPAP PEEP valve setup we had at home was no longer approved for at home use, but no one knew why.  Well this morning, a short time after being told no, they agreed to let us do it and are suddenly considering letting him go home as early as tomorrow.  Because really all they are doing here (apart from monitoring and observing him) is providing him with CPAP, which he seems to need for the time being.  I think he will get over it but needs more time.
He still has his crappy rash.  I think he's allergic to the hospital.  It is certainly nice to have access to lot of knowledgeable folks, but they haven't necessarily been able to figure him out.  
I look forward to going home but will be very nervous about the possibility of having to come back.  Hopefully the home CPAP setup will prevent that.

Sunday, June 7, 2009

Bringing the beach to Brosie

Not much to report. It is a quiet day, which is a good thing.  As I  understand it, all of the kids in the PICU are having a pretty good day- Hurray!  Ambrose is satting beautifully on 30 % O2 (and his trusty CPAP).  He has still had a few fevers, although his cultures didn't grow out anything.  He continues on antibiotics and has begun the inevitably accompanying diarrhea (which had barely just stopped from the last round of antibiotics. Ughh!)  Haven't really seen any seizures yet today. (Don't mention this to Ambrose.)  His IV, which they really weren't using, came out.  I held him and rocked him to sleep. He will wake to find his goofy mommy is pretending he is at the beach.

Saturday, June 6, 2009

Admission 3, Day 2

So, no big news.  Ambrose continues to be on CPAP at 30%-40% O2.  He continued having fevers over night, which cause him to have increased seizure activity.  He has had Ativan several times, so he is pretty sleepy.  No significant findings with any of his cultures.  I think he has had a viral pneumonia all along.   That would not respond to antibiotics.  The CPAP helps enough that he seems better but after a few days off  it catches up with him.   
My dear friend Laura, nurse extraordinaire, visited and took me to the Intensive Care Nursery reunion barbeque.  It was nice to get out.  I met a baby who just went home on a ventilator.  It was nice to see he was so portable.  The technology is quite amazing. (As was the baby!)

Friday, June 5, 2009

(Hopefully) The Third Time's A Charm

Yes, we are back in the PICU again. It is so discouraging! 
 After a night of virtually no sleep, Ambrose coughing with nearly every breath and needing constant suction, then developing a fever of 102.8, I took him in to the ER.  I rode with him in the ambulance to the PICU.  
We've got to figure this out!  
He hasn't needed extra O2 this time and until the fever I thought it was the trach issues.  
Well they took lots of cultures, put in an IV (Got it on the first time-Yeah!  The nurse even managed to save it despite the fact that Ambrose had a seizure before he was finished-excellent work!)
I asked for the ENT (trach doc) and derm consults.  The ENT ordered the longer custom trach for him (which may take up to a week to get here).  They are putting him on oral anti-fungal med for the rashes that won't clear.  It's a little scary because it can actually cause liver problems and interfere with seizure meds.  He is back on CPAP, which seems to agree with him.  His chest x-ray looks lousy again.
I just returned to work yesterday.  Four different residents told me they love me, which more than makes up for the one trying to hit and kick me.  I missed them (and my excellent coworkers.)  I hated to call and say I'll be gone again.

Thursday, June 4, 2009

Suction Sucks!

Ambrose slept from 2-5 am and was awake needing frequent suctioning the rest of the night. Normally he rarely needs any suction. Sophia needed to be suctioned about 100 times a day, and that was when she was well. Ever since he has been sick, he has had copious secretions. It may have improved slightly last week. Then he got his new longer trach. I am hoping the increase in secretions is related to that. We had tried a couple of months ago to switch to a longer trach and he had a significant increase in secretions and coughing for the whole 8 days until we switched him back to his old trach. He had a follow up appointment with his PCP yesterday. She was concerned that he was having a long expiratory phase. (taking a lot longer to breath out) She had us bring him to the hospital lab to check his CO2. It was 49, a little high. He is in his normal O2 range, which is an improvement from when he was home a few weeks ago, but I still have concerns particularly about his airway possibly occluding. I was just told that his follow up appointment at the hospital was cancelled. I am not happy about this and am seeing what can be done about that. In the mean time I must return to work tonight. I have a mountain of work to catch up on at home. I just want to know that Brosie is OK.

Monday, June 1, 2009


Finally home after a total of 31 days (between the 2 admissions) in the PICU.  Ambrose is resting comfortably in his own bed.
Thank you to all who took such good care of him in the hospital. 
Hopefully we will not see any of you any time soon.
It was decided today that we should stop the ketogenic diet as Ambrose has been losing weight ever since he started it. (Imagine losing weight on an all fat diet. Maybe I need to eat more fat.) He seems to have fat malabsorption.  There has been mild improvement in his seizures although it has been very inconsistent and not as much as I had hoped for.  It's hard to say if that was from the diet or the increases in some of his anti-epileptic meds.  
Keep all the kids in the PICUs everywhere in your prayers.

Sunday, May 31, 2009

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!  

Saturday, May 30, 2009

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!

Thursday, May 28, 2009

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.

Wednesday, May 27, 2009


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.

Tuesday, May 26, 2009

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!

Monday, May 25, 2009

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.

Sunday, May 24, 2009

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.

Saturday, May 23, 2009


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...

Thursday, May 21, 2009

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.

Wednesday, May 20, 2009

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.

Tuesday, May 19, 2009

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.

Monday, May 18, 2009

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!

Wednesday, May 13, 2009


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!

Monday, May 11, 2009

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.

Sunday, May 10, 2009

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!