Saturday was a quiet day/I saw the bunny

Not much happened today. Ambrose was up a bit on his O2 but seemed more like himself. No fevers, improvement in color and quantity of trach secretions. His blood culture came back in the middle of the night growing something but they think it was just a contaminated sample, since an earlier culture was clean and he's not having any symptoms. Of course they drew another one just to be safe and decided to put in an IV even though 2 attendings said he didn't have to have one. But of course now that it's there they won't remove it. Ambrose seems to be working on that himself. Our friend and Ambrose's early interventionist, Mary came to visit us and brought some treats and a bag my husband put together for us as well.

I was just speaking with the mother of a 1 year old with leukemia and the mother of a 3 1/2 year old with neuroblastoma cancer who just had his 9th surgery. We were speaking of how amazing and loving and HAPPY our children are! (Not to mention Brave. When you are afraid to do something, just think of them.)

As a complete aside - I saw the bunny today. Two years ago, when Ambrose was born and I spent the whole cold winter here with him in the ICN, there was a black rabbit who lived outside of the North entrance of the hospital. People would leave lettuce and apples and the like in the snow. When I saw the bunny I knew it would be a good day.

"Bunny Rabbit" was a nickname I had for Sophia and it felt like a little sign from her. One day it practically came running up to me, as if she said," hurry, there she is!"

I later learned that the previous summer someone had released some domesticated rabbits there because they thought the patients would enjoy watching them out the windows. (There are some patient rooms right there at ground level.)

As I've approached the hospital these past several cold mornings I wondered if the rabbit (or rabbits) was still around. When I saw him this morning it just made me so happy!

Bigger trach = Better results

The ENT doc just came and changed his 4.0 PED cuffed trach to a 4.5 and, despite some bleeding, he is ventilating better and able to come off of the rate and back to his previous settings of just CPAP and pressure support (7 over 8). Mechanical problem indeed. Thank God!

Ambrose is having a BAD morning!

When I came in this morning Ambrose was on pressure control with a rate of 24 on the ventilator. (Meaning he is no longer breathing on his own with just the extra pressure of CPAP and Pressure support.) Apparently he started having some severe desturation episodes where his sats were as low as 20 and not going much over 60 with bagging. He has had several doses of xopenex (avariation of albuterol with a different propellent) and duo nebs. He had 2 less severe episodes yesterday that responded to the bagging and xopenex.

His blood gas showed high potassium and CO2 but when they rechecked them from a venus sample they were OK.

He had another fever. (Day 8)

PICU attending Dr. Braga's careful observation led him to notice that there was a problem with his trach. (Ambrose has very unusual anatomy and currently uses a custom trach that is longer than usual with an increased angle because the standard sizes tip back and occlude against the back wall of his trachea and also to try to bypass areas of tracheomalacia. When they put him on the vent originally for just the CPAP and pressure support it would not work due to the significant air leak around his usual (uncuffed) trach. They needed to put in a cuffed trach which is a standard pediatric size. The larger diameter of the cuffed trach made it difficult to put in and resulted in blood tinged secretions for the first 2 days.) He noticed that Ambrose was breathing through his mouth. When he moved the trach around a bit he seemed to do better. So they over inflated the cuff , which may be holding it in a better position for him and he seemed to be breathing much better. They subsequently were able to decrease some of his vent settings, but he is still on a rate and higher pressure support than yesterday. So we are hoping this is more of a mechanical issue than a worsening of his lung disease. We are waiting for his ENT Dr Smith to come scope him and give his guidance about what trach may be best. (They ordered a custom cuffed trach for him but it will take a few weeks.)

Please send strength our way.

Positive Pressure is a "+"/A+

Ambrose remains stable. No big changes. He continues on pressure support of 7 over PEEP of 8 at 35% O2. The good news is that is chest xray looks good - no pneumonia, relatively clear. Without those distractions however it is very noticeable how crooked his spine is and that his heart is really far to the left. (He is definately NOT a republican.) He continued having scattered fevers (but none so far today). They decided to start him on antibiotics last night based on the continued fevers. (Last night was day 6 of fever.) He is getting Cipro and Tobramycin nebs. His trach grew moraxcella. (sp?) Virus panels were all negative. (Which doesn't mean he doesn't have a virus but they only test for a few major ones.) He still has tons of secretions, but they are no longer blood tinged from the trauma of having a cuffed trach put in. He seems more comfortable to me.

His Daddy visited yesterday and brought some of Ambrose's little buddies, including "Little Buddy" (Thank you Ben) and "Pierre the Polar Bear" (Thank you Carole!) "Marvin," and "Spotty." They were all happy to see each other.

Today he will be getting some physical therapy. Yeah!

Brosie is such a good boy!

Ambrose in PICU 2010

My darling Ambrose has been sick along with Mommy for the last 5 days. The first few days he had fevers of up to 102.9, lots of coughing and increased discolored secretions. The good news was that he was NOT requiring any more O2 than usual. I kept him on his CPAP around the clock for additional support. Tuesday morning, after moving him, he couldn't keep his sats up despite cranking his O2 up as far as it goes (10L). Similar to previous episodes, he required bagging. (He is breathing but need some extra force behind his breaths to get in enough O2.) He would sat well with bagging him at 10L, but we can not do this continually. So we called rescue, transported him to BMH where they bagged him for over 2 hrs. until the DART team came to transport him to DHMC's PICU. They put in a cuffed trach because he had a big air leak around his trach. The cuffed trachs are hard to get in and cause some bleeding. Ouch!

He is getting pressure support (basically the same thing as bagging but controlled by a machine) and CPAP through the ventilator. He is stable. Don't think he'll be here long but you can never predict.

Sophia Memorial Day Part 2

Sweet Angel Sophia Carole Brown Memorial Day

Please remember my darling lovely daughter Sophia who died in my arms 3 years ago today.

She was almost 4 years old.  She spent 5 days on a ventilator before her heart gave out after suffering respiratory failure from Human Metapneumo Virus.  

Today Ambrose turns 2!

I have had the privilege and joy of holding my beautiful baby boy in my arms for 2 years! I pray that I will have at least 2 more years with him!

I am in awe of him everyday!  He is the sweetest most loveable boy  and I am so honored to be his Mommy!

Ambrose to turn 2 on January 19

Brosie's 2nd birthday is right around the corner.  

His birthdays are very special as most children with Taybi-Linder Syndrome die before their 1st birthday.  Sophia almost made it to her 4th birthday.  She was the 5th oldest child with this syndrome (of the 34 reported cases throughout the world since it was identified in 1968).  The oldest was 6.

We are having a birthday party for him at 2 p.m. on Sunday, Jan. 17.  Let us know if you'd like to come.

...and to all a good night!

Sleeping at night has been an ongoing struggle for Ambrose, as well as for Sophia.  Blind children often have sleep disorders as light is what sets our internal clocks.  

Sophia eventually settled on a pattern of sleeping from about 10 pm until 3 am. Then woke and needed suction repeatedly for about 2 hours.  She would stay awake until about 9 a.m. then sleep until around 2 p.m.  Her neurologist said "sleep hygiene" (making them stay awake all day),was the most effective treatment,  but there was no waking her when she wanted to sleep, or lulling her to sleep if she wanted to be awake.  Eventually I tried Melatonin at night which helped her to sleep a little longer overnight.

I tried Melatonin with Ambrose last year to no avail.  Ambrose will occasionally sleep all night, sometimes even for a few days in a row.  We will hope maybe he will stay on this schedule but then he will switch it up and stay awake all night for a few nights, or sleep half of the night.  His only consistent sleep habit is falling asleep around 10:30 a.m. until about 2 p.m.  He does usually seem to get enough sleep cumulatively, just not consistently at night.  Then I feel guilty sleeping.  I wake up frequently to see if he is still awake and kiss and stroke him.   He's laying awake bored and lonely, then sleeping all day and missing lots of interactive time.

A few months ago I read an article in Future Reflections, a magazine for parents and educators of blind children, about a girl with this problem whose doctor recommended using a light therapy box.  She used it for a half hour each morning and from the first day began sleeping through the night.  If she missed a day, she didn't sleep.  

I began researching online and found numerous references, and positive customer reviews about them helping with sleep regulation (not specific to blind people) as well as season affective disorder.  It is supposed to replicate sunlight and wake you up for the day.  The newer ones are smaller and use blue light instead of blindingly bright yellow light, as they have found that the blue light rays in sunlight are the ones that are most effective.  Blah blah blah.   ...I got one and tried it....and tried it ...and tried it . He would fall asleep during or immediately after using it, instead of being awakened by it.  Some reviews said it worked right away, some said it took a few weeks.  When he would eventually have some better nights of sleep I 'd wonder if it was starting to help, but then he'd be back to staying up.  

I've finally decided to give up on the light therapy.

I'm always searching for things that may be useful or interesting to Ambrose.  I came across a website for special needs kids that featured a section of "sleep help" items.  I ordered him two things from here for Christmas.  The "Cuddle Cub" and "Cozy Cookie".  Cuddle Cub is a stuffed bear with a heart that vibrates a heartbeat rhythm for several minutes after being squeezed and is very sensitive to movement so he can reactivate it easily.  (There are many similar ones out there that make a heartbeat sound, but I don't think he could hear that.)  I was very optimistic about this, as he like vibration.  Cozy cookie, which we haven't received yet, as it is backordered, is a fleece gingerbread boy filled with gingerbread scented rice that you microwave to warm and soothe.  This too is very exciting as St. Ambrose is the patron saint of gingerbread (as well as students, bees and beekeepers, candlemakers, masons).  I learned this when I was pregnant and gingerbread boys have had special significance to me ever since.

Needless to say, Cuddle Cub doesn't help.  Cozy Cookie is my last hope.

Ambrose has had several days this week without getting enough sleep at any time of day.  6-8 hours a day, instead of 12.  Not sure why.  Sub-clinical seizure activity?

He has been trying to make up for it the past couple of days.

It is now nearly 1 p.m. and I am watching Brosie peacefully napping, as he has been for a couple of hours now.

Thanks for reading.  I hope you all have a restful night.