Breathe Eat Poop

Savanna Hospital Second Resection-5Savanna is three days post-op  since her second resection for epilepsy.  It is too early to tell about her seizure activity, but we see activity that is very concerning from our perspective.  We have been told to give it another 3-4 weeks before sounding the alarm.

Savanna is moving around now, and her demeanor is dominated by discomfort and irritation versus acute pain and rage.  This is good.

Still in the hospital, here we sit.  Like waiting in the in the airport terminal and the boarding status just keeps getting delayed.  Then delayed again.  Then delayed again.  Ugh!  The reasons to continue to keep Savanna in the hospital seem convoluted and mired in bureaucracy.  We know our daughter.  We understand their genuine concern.  But life in the PICU for someone like Savanna (and her family) is corrosive.  She is ready to go play, roll around, and be a slightly-delayed toddler.  The PICU was supposed to be a pitstop for her for the first 12 hours and then she was to be moved on to a more outpatient facility for monitoring and released 12-24 hours later.  What a disaster ensued when we were admitted.

The unexpected respiratory situation confined Savanna to the PICU for 3 days, tipping the balance of the our emotions resulting in a more combative relationship with the staff than one that needed to be harmonious.  She was having problems I admit, but looking back, the initial 12 hours of care should have been in the PICU and then Savanna should have been moved to the general floor for care.  Maybe some of the nurses/doctors out there who follow this blog can elaborate on what I am saying.  Or, maybe I am off base too, and by all means let me have it.  Comments are not moderated.  But, the PICU staff is used to seeing a certain type of clientele.  Being the #1 trauma facility in the region, most patients here are completely different than Savanna (and so are the parents).  By day 2 in the PICU, we had scuffled with 3 doctors and 2 nurses.   Looking back, I am not sure why it took 2 whole days to get in that much trouble – it could have been accomplished in less time.

The doctor overall in charge (the neurosurgeon) had been called twice in the middle of the night during the first two days too.  These unfortunate actions create an environment of  ‘us against them’.  The heat from the friction generated at times is tremendous.  And the sad part is that it didn’t have to be that way.  The thought that any one person knows 100% of what a baby like Savanna needs is naive.  I say that without callus and arrogance,  but rather a humble realization that the above statement includes me (the parent) too.  Near the end our crime and punishment in the PICU, I asked the neurosurgeon, “What is required for Savanna to be discharged?”  He replied simply “Breathe, Eat, Poop.”  He elaborated, but I thought it was a great title for a blog post.

I was ready to take Savanna home now, but I also knew a brief stay in the EMU was more or less required.  I tried to wiggle out of it, but the sentence was handed down and time served was not enough punishment.  Savanna’s journey continued in the EMU.  Luckily, the EMU is like ‘Celebrity Hospital for the Rich and Famous’ when you are there for observation without EEG equipment installed.  It can be a desolate place too with little to no activity at night – very unlike the PICU.  What is odd though, is just when you think it is safe to pick you nose, you realize you are being watched through the video system.   You are reminded by the sound of the discretely placed camera panning and zooming under remote control of the EMU nurses.  Haha.

Breathe.

No it is not a call for us as parents to take a deep breath, as though the person holding us underwater decided to let go and allow us to surface.  Savanna has to maintain Oxygen saturation level of at least 90% on her own.   Savanna is still struggling somewhat with stridor, which is due to the swelling in her upper airway.  This is a potential result of being intubated for nearly 12 hours.  It is not permanent, and will take some time to dissipate.  It has to be remedied or markedly improved for discharge.  As of now, the ENT doctor and neurosurgeon are happy with how she is breathing and feel this is not holding her back from moving forward.  We checked this box.

Eat.

So, with her right vocal chord not closing all the way, there exists significant risk of aspiration if she were to spit up or vomit.  It presents a delicate situation with respect to feeding her given the nausea from the pain medications and anesthesia.  If she is enraged and hyperactive due to pain, she could aspirate while feeding.  If she is sedated too much, she could aspirate while feeding.  Dilemma.  The neurosurgeon does not want her sedated post-operative as it could mask presentation and symptoms of complications.  But, if she can’t be safe in a crib that looks more like a cage more than a place to sleep, what is the point.  His answer is just to try to console her and redirect her pain with magic.  We need her to be manageable and not in so much pain.  We have four children, I can’t just sit with her for hours at time and try to keep her from being in pain with a little tylenol.  There should be some common ground here, and I feel like I am being fought tooth and nail about keeping my daughter healthy while not in a lot of discomfort.  And, the weird thing as this was not the case at all after the first surgery.  Maybe I am missing something as ‘just the parent’.  I don’t feel like an irresponsible parent, though there is some innuendo in the conversations with the different doctors.  I have to say it is not appreciated after all we have been through with Savanna.

How does this rant apply to feeding?  Okay, so if she really is in pain, it is really difficult to feed her.  Bolus feeding is difficult to impossible as well.  She has a G-tube, why can’t we just use that you might ask?  Savanna does have a peg style g-tube, but not a fundo.  So she can still eat normally as the stomach doesn’t have a ‘reverse flow’ limiter – if you will.  So even bolus feeds are in question now, which I think is reaching too far in maintain Savanna’s admission.  Even during Savanna’s most difficult times, sedated far more than now,  she never had a problem with reflux with bolus feeds.  But my historical experience as a parent is being ignored for the most part.  I know why, but it is still frustrating, especially when I am right.

So, I still have a speech therapist consult scheduled tomorrow to prove I can feed my child safely.  Amazing.  An empty box that I have to get checked.

Poop.

I wore my lucky ‘poop’ shirt to the hospital and Savanna had an extra dose of miralax this morning.  This box is checked, a couple of times over I might add.

Breathe, eat, poop.  Breathe, eat, poop.  Kind of sounds like a meditation phrase.  Let’s go Savanna, find your happy place!

-dad

A Day to Give Thanks, to God.

An update on Savanna’s situation.

She is 4 weeks post-operative, and she is well.  We have started to titrate down some of her medications, but she is still on basically the same panel of medications that she was prior to the operation.  This is keeping her quite sedated.  We are starting to reduce the Onfi first, and see how she responds.  Despite the level of sedation, we are happy to report significant changes.  The biggest change we have seen is the engagement in her environment.  She seems to see her world differently now than she did prior to the surgery.  I looked at her over the crib rail one day and she smiled at me without any stimulation or sounds from me.  To most of you that may sound silly or trivial to bring up, but for me personally, it was profound.  She had never done that before and more importantly, it was a sign that at some level, her brain is working correctly.

She has periods where she tolerates sitting up in a bumbo seat or bouncer or something similar.  It is really rewarding to see that type of progress.  We still harbor a guarded optimism for her immediate outlook as we know some of the facts.  We know that the Sabril could be helping to suppress the Infantile Spasms.  Should we lower that dosage and the Spasms return, it would be another fork in the road of her journey to put it nicely.  Also we know that if Savanna would not have struggled as much as she did during the surgery, the surgical team would have expanded the resection.  While not trying to be an eternal pessimist, it is important that we have some emotional preparation for what the future may hold.  Another surgery is quite probable, and a life-long battle with seizures is also quite possible.

Unfortunately, we are still seeing abnormal activity at times.  Just last night, she was having a really difficult time sleeping, and I witness about 6 hours of what I would consider a seizure-filled period.  I am not positive that what I saw was seizures, but it would appear she has some partial activity still in the background, and it occasionally spikes enough to cause complex or clinical indications.  I am certain that a VTM/LTM is in her near future to diagnose what we are witnessing.  She has become quite cross-eyed lately and it is asymmetric in nature.  What is weird is that the opposite eye is effected than prior to the operation.

We are told she may be experiencing many circumstantial situations as she develops a new baseline.  In the mix too is that she is growing, and with infants, things can change fast as we have learned.  So, it may be possible she doesn’t reach a baseline for quite some time.  We have scheduled clinic visits to see the doctors in the neurosurgery, neurology, ophthalmology, and genetics departments next week.  We will send our blood samples to a couple of different labs to sequence her exome and our genome.  We are starting therapy again for motor skills, speech, and cognition.

I have included some pictures here that are from the last couple of weeks.  She truly is an angel and while we live the myth of Thanksgiving nowadays, we are very thankful this year for what God has given our family.  The true story of Thanksgiving has long since been white-washed and papered over with liberal textbooks.  It is a day that requires some inward thought about the real story, our past, and the future of our country.

For those of you who might want a closer look at what she underwent 4 weeks ago, there is a hidden link on our website that shows a few pictures from the surgery. [taken down, as of 2-2013] I am not posting the link, to the pictures, just to the website.  The link is the homepage picture.  It is mobile friendly.  Warning: they are graphic.

www.kenandrebecca.com

Have a great Holiday this weekend, and hope this email finds you and your family well.

Mom and Dad

(Ken and Rebecca)

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