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!

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!

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.  

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!

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.