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!

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.

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.  

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.

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.

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.

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!)

(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.

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.

HOME

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.