Friday, January 13, 2017

1st Day Home...Holy Moly!

We came home to a house filled with love and surprises. Not only did our friends take down our Christmas decorations, but they filled our home with hearts and Valentine's day love. There were handmade cards from Oliver's classmates and church friends, dinner, cake, wine, gift cards, and surprises around every corner. Our favorite is a handmade heart cut out that says "fax me"...LOL!

Home Sweet Home

We felt so loved and wish we could thank every person...but we're not even sure who you all are...but we so deeply appreciate you. You've made us smile and our hearts feel a bit lighter in the midst of such sadness.

Last night we arrived home at 6:00 and spent the night trying to get organized, unpack the TONS of boxes of medical supplies we received, and get Oliver into his hospital bed that was delivered yesterday. We were so stressed trying to juggle it all, but feel a little better today. Oliver slept for 8 hours and we of course have never, ever, ever been so thankful for our own perfect bed. I thought I'd melt when I got into our bed, with our sound machine and yummy Downy lavender scented sheets. Sigh :-)

Today was incredibly busy and stressful. Together it took Andrew and I from 6-9 to get his meds, cath him, feed him (food and g-tube) and dress him. After all that we were both working the phones until 5:00 trying to handle all the new prescriptions, medical supplies, follow-up appointments (we have 9 in the next 35 days), discussing things with all our social workers/case mangers, and updating our nurses. Our parents have been helpful, with running errands (hello CVS and chickfila) and folding the mounds and mounds of laundry.

Lots of love and lots of work ahead of us too!

Oliver had a follow up appointment with his pediatrician, Hoke Pollock today. We think he is an incredible physician; he never rushes us out the door and is just an outstanding human being. We are so thankful for his careful attention to our complicated boy! Ollie got his sutures out and the g-tube site looks good. We talked to Dr. Pollock about our concerns about dehydration and Oliver's ongoing pain (evidence by his crying and whimpering). We are going to weigh him everyday...he is down to 56.8 lbs (from 68) so we are aggressively trying to get him to pack on the pounds. The cake and chickfila should help!

There are so many moving parts it is hard to even think straight.  The to-do list is still long and overwhelming, but we are just tackling it line by line. I take my job as the CEO of Oliver, Inc really seriously. You should see my spreadsheets and training manual for our nurses. I am sure as we settle in we'll get our heads around this and get systems in place. I had hoped to make it to my office today, but I think that was a bit aggressive (imagine that). I miss my other CEO job so much, and especially my beloved work family.

Asleep on the swing. 73 degrees and sunny...perfect Wilmington day!

We've had lots of tear filled calls with our friends and family. To be honest, we are all getting choked up at times. There is real emotional pain and no easy path to take it away.

But, my dear friend Jen Yngve reminded me of this line from a CS Lewis letter:

"We must, if it so happens, give our lives for others: but even while we're doing it, I think we're meant to enjoy Our Lord and, in Him, our friends, our food, our sleep, our jokes, and the birds song and the frosty sunrise." 

So Andrew and I are trying to live that kind of life. A life given to another...our only son. A rare child who has been sent to all of us to teach us and shape us. And as we give our lives for his we fight for our own joy. We keep trying to point each other to the sunrises. Giving each other gentle reminders to savor the sweetness in a glass of wine or the giggles of a toddler doing a baby bottle flip on Youtube (if you want to smile just check it out).

He has my heart!

Wednesday, January 11, 2017

Not The News We Were Hoping For...

It has taken us a while to write this blog, becuase we've been reeling. The results of Oliver's spinal tap revealed elevated levels of lactic acid. His level was 3.1 and the acceptable range ends at 2. The neurology team has diagnosed him with Mitochondrial Disease. Here is a link to a helpful FAQ from the Cleveland Clinic. There is still much we have to wait to find out including what kind of Mito he has. The working theory (and this IS NOT confirmed yet) is that he has MNGIE. So little is still known about Mitochondrial Disease, but it is progressive with no cure. We know there will be suffering and discomfort and a very difficult road ahead. 

There is some small relief to finally know what is making his body deteriorate like this. It finally all makes some sense. I knew back in October something very bad was happening. At least with a diagnosis we can attempt to slow or (for a time) reverse what has happened. I have already spoken with another Wilmington area mom with a kid with mito. She was encouraging and I felt slightly less overwhelmed after a long talk with her. 

We feel like we have won a reverse and cruel lottery. Tuberous Sclerosis is rare, and Mitochondrial Disease even more so. We have so much to learn about this, and have to try and wait for final confirmation from the genetic testing and mail away lab work on the details of Oliver's condition.

So for now we hope to head home tomorrow or Friday, and work hard on getting him to gain weight. If he has MNGIE one of the life threatening issues is losing too much weight. He has lost 20% of his body weight since getting here so we hope to pack on the pounds. 

We have decided we won't send him to school right away. We'll be focused on feedings, therapies and getting back into a routine at home and work. Our church has already handled weeks and weeks of meals for us. Thanks to some of you we have months worth of Starbucks drinks. Friends took down our Christmas decorations and tidied up our home. We feel loved by and cared for by you, our sweet friends and family.

Our hearts are really broken over all this. Our nurse just prayed for us and we stood around the dimly lit room weeping, our tears falling all over Ollie's bed. The staff here has been gentle, compassionate and encouraging. They keep complimenting us on our parenting/caregiving and cheering us on, which helps on days like this. 

Right now, Oliver is playing on his iPad, and every once in a while looks over and smiles at his weepy and exhausted parents. Although skinny and sometimes in pain he has remained an overall happy boy. We can't wait to get him home and away from needles, parades of med students and endless procedures. 

Oliver got a few bedtime stories from Aunt Holly last night. Skippyjon Jones is always a favorite. He has also enjoyed being wheeled around the 6th floor unit in this too tiny toddler car. 

Taking a joyride 

So in honor of Oliver and in celebration of your healthy body, go live your life well and with intention. Suck every bit of life out of each day you have allotted. 

Life is so precious and so are you. 

So dry your eyes and go get out there...that is what we are going to do!

Go read some books you love, spend time with the people that make your heart happy, and if you can find the time, go for a joyride. Because no matter where life's journey takes you, there is always a little joy to be found. 


And finally a quote I return to over and over from Anne Lammot:

"Oh my God, what if you wake up some day, and you’re 65, or 75, and you
never got your memoir or novel written; or you didn’t go swimming in

warm pools and oceans all those years because your thighs were jiggly
and you had a nice big comfortable tummy; or you were just so strung out
on perfectionism and people-pleasing that you forgot to have a big
juicy creative life, of imagination and radical silliness and staring
off into space like when you were a kid? It’s going to break your heart.
Don’t let this happen."

Monday, January 9, 2017

Plot Twist: Here For A While Longer

Plot twist: it looks like we'll be here until the end of the week for at least 3 reasons:

1- He is probably withdrawing from a benzodiazepine taper that we did too quickly so we have to address that

2- He is not tolerating the g-tube feedings as well as hoped and is vomiting daily. We can't leave until we make sure he can get proper nourishment. He got so dehydrated this morning that he had to have an IV put back in after some scary unresponsiveness and a sunken eyes.

3- The neurologist we saw today (the 3rd one and the original person that diagnosed Oliver in 2010) wants to do a spinal tap to make sure we have not missed anything (before we just go home and treat all these bizarre symptoms). We have agreed this makes sense.

All three of these issues = we are likely here until Thursday/Friday.

In good news, he is continuing to have somewhat consistent bowel movements and (mostly) wet diapers on his own!

At home, we'll be working on getting a hospital bed and setting up nursing care. They will help us manage his symptoms and G-tube feedings, and support us through this journey with a very unknown ending.

Hoping to get some meat on those bones soon! 

All of this feels heavy to us as I am sure it does to you as you read it. We feel like Oliver has turned into skin and bones, and his puzzle of symptoms that pop up like a whack a mole game make proper diagnosis very difficult (even for the most skilled physicians). On the bright side, when we get out we'll get to be patients at the Complex Care Clinic that has physicians on call 24/7 (so you get to call directly to their cell phones). The clinic is devoted to care of the most fragile and complex children, where multiple specialists are involved, and they can help facilitate communication across the care team.

I have packed and unpacked twice. I have decided I won't pack up until I actually have the discharge papers this time. Now that we know we'll be here a bit longer, Andrew and I will begin to trade off nights again as we've gotten pretty sleep deprived the last 4 nights.

Thanks for being on this crazy ride with us. The world is a noisy place, and there are all kinds of ways you could use your time or focus your prayers. We feel so deeply grateful you've chosen to share in this season of unknowns with us.

We are not meant to do anything alone, especially the hardest things in life.

And of course for our sweet Ollie we will always give everything but up.

Sunday, January 8, 2017

Speed Bump on the Way Home

If I had shiny red slippers I'd be clicking my heels on the regular. To say we want to go home is an understatement. We are dreaming of our bed, our coffee, our clothes swishing around in our laundry room, our little family curled on the couch together. No beeping in the distance or rapid response calls on the loud speaker. No more shared refrigerators or ID badges.

First smile of the day 

But alas today may not be the day. Oliver woke up this morning with more vomiting and slept until 12:30. He got a dose of Zofran that has helped him keep down another feeding of pedialyte (which we are doing more slowly to make sure he tolerates it). If he continues feeling better then we have to get up to goal feeds, which is 240 mls of pediasure peptide per hour before we can leave (+ no vomiting and ability to tolerate eating foods by mouth). There is still a teeny tiny chance we could get that done today and get out of here. Patience is truly a virtue.

Friday, January 6, 2017

1-6-16 Update

Oliver had a difficult night with a considerable amount of pain from his surgery. He has been showing a surprising amount of emotion in the past 4 or 5 days, at times crying real tears in his discomfort and frustration. In the last two weeks, we are happy to have removed several powerful drugs from his regimen, and think that his new behaviors are a result of these changes.

Today he began his first feeding at 2PM,  but it got off to a rocky start with some vomiting.  We are hopefully back on track over the last two hours, and will try food and drink by mouth tomorrow. Even with the g-tube, Oliver will still be able to "eat for pleasure", and his meds and weight gain goals can be met with the tube. We have a binder wrapped around the site that will help keep his impulsive little hands off the surgery site.

We are shooting for a Sunday discharge, pending how well he tolerates the feeding and of course the ding-dang snowstorm.

Thursday, January 5, 2017

G-Tube Is In, But A Long Road Home

Oliver's surgery went well and his g-tube has been placed. Sadly, but predictably he is in some pain and we are working to try and keep that at a minimum. Due to all his medications he has a super high tolerance and needs higher than usual doses of pain meds.

Tonight, the surgery site drains and nothing is put in the tube. Tomorrow, around lunchtime we'll try to use the g-tube for the first time and see how well he tolerates it. We have so much to learn about how it all works. We also have to work on a plan for what to do if (and we are pretty sure it could happen) it comes out. Already he is trying to get at the g-tube despite us having a binder around it.

The video they had us watch about the g-tube was rather overwhelming. When they pulled it out of the one of the babies in the video, we both felt a little woozy. Seeing a gaping hole in the side of a kid's stomach is just not normal. So we have some leveling up to do.

During the surgery, the urologist checked him out and said overall things look good (although Oliver does have a distended bladder from all the urinary retention). He recommended a special kind of catheter that may be more comfortable for him, but overall it was good news on that front.

We are hopeful that we'll be out of here in a few days. The transition home is going to be intense; not just anybody can do a catheter or a feeding with a g-tube, so our caregiving situation could change a great deal. We also don't think it makes sense for Oliver to go right back to school (in the traditional manner, at least). So your prayers for healing for Ollie and stamina for Mom and Dad are appreciated.

Surgery is slated for 11:20 AM

We are waiting in the room for them to take him down for his surgery. We had to watch the video that the hospital produced about g-tubes. I think we are both sufficiently overwhelmed. I am sure we'll get the hang of it, but watching the tube go in and out of some of those babies stomachs kind of made us a little woozy. They basically show you what to do if the tube comes out, which sounds like it is dramatic if it happens. The hole can close up in a matter of hours, so you gotta put something in there to hold it open. Fun times.

See that button on the baby doll's tummy? That's it

We have all kinds of worries and thoughts. Since Oliver is Mr. Infection, we are worried the site will get infected (duh!). Since he has crazy strength and can get rowdy, what if he just rips it out? Will he sit still for us to do the feeding and care for the tube? How are we going to find the time to add this to our lives? It is all so much, but we are trying to take it hour by hour. We've leveled up many times, and of course we'll do it this time.

Wednesday, January 4, 2017

Making Progress & Surgery is Scheduled

We're making progress. Oliver's surgery for the placement of his G-Tube is scheduled for tomorrow as an add on that likely means he'll go later in the day. The surgery is routinely done, and takes about an hour. The upper GI study they did yesterday showed no signs of reflux so the EGD test has been cancelled, and there is no need for a Nissen Fundiplication surgery. Woo-hoo! We are grateful that all he'll need is the straight forward G-Tube. While under anesthesia the urology team will go back and double check a few more things as well.

Today he should have another swallow study so we can make sure that his aspiration has not changed or gotten worse in the past two weeks (since it was originally done on 12-22). Our understanding is that we will be here until at least Sat/Sunday to make sure he tolerates the feedings (and also so we know what we are doing!) We also have to do a decent amount of discharge planning to insure that we have the right supplies and care in place once we get home.

Last night and tonight nurse John takes the overnight shift so we can get rest. We think he is basically the most perfect human we have ever met, and sincerely feel like God placed him in our life as a gift. Very few things can make me cry at the drop of a hat, but just mention John's graduation from UNCW in May and I'll get all misty. We are SO grateful for him.

Yesterday we met with the Children's Supportive Care Team, which seems like perhaps the best thing to happen thus far. We felt understood (for perhaps the first time) by someone who gets the complexity of what lies ahead of us. We have difficult decisions to make about quality of life, symptom management, and conflicting advice from all the specialists that are involved. As a group, they will streamline, simplify, and follow us after discharge. So if we have an issue in Wilmington, we'll call them and they will work with our primary care doctor to keep us out of the hospital (if possible). They deal with kids like Oliver every day, and they understand the challenges. They have some great tools for thinking through the ways to make his life as healthy, joyful, and normal as possible.

We are feeling a little less overwhelmed about the transition home, which could change once we get to the realities of the g-tube... We are thrilled to have an interdisciplinary team follow us, and happy to escape unnecessary procedures and (finally!) have a g-tube surgery date.

Yesterday and today we'll mostly be hanging out in the room and hoping the sun will shine. We are beginning to feel like vampires. We've had some visits from friends, and I have gotten to do a bit of work. The countdown is on for our return home!

Monday, January 2, 2017

1-2-17 Update

Tomorrow Oliver will finally have his upper GI study, which must be done for the placement of the g-tube later this week. We are hoping things can finally get moving.

Hospitals + Holidays = Waiting and Frustration

Don't get sick on Christmas Eve, or Christmas Day, or New Years Eve, or New Years. Seriously, just don't.

Smiling through it all

Today Oliver was more comfortable and enjoyed a few books when we could pry the ipad out of his hands.

Last night my in-laws came up and Andrew and I went out to grab a quick burger and a beer. It was so nice to get out of the hospital...and my pajama pants. We were thankful for their help, especially after hosting a house full of people for a week over Christmas (which we sadly missed).

Reading time with grandaddy

Today Ms. Pollock (Ollie's previous teacher) and Meredith (one of my friends in my Whine & Wine Club for mamas of special/medically fragile kids) drove up to visit. They brought smiles, ideas, laughter, food and so much joy. Oliver decided to eat and drink today, which was a good sign and maybe had something to do with our magical visitors.

The neurologist that came today said she thought we might want to consider the possibility of a Mitochondrial Disease. If this is what is causing his issues it would not be good news at all, but it would explain all the odd symptoms. Today while doing research I found this really interesting article about TSC's relationship to Mitochondrial Disease. In the event you have a PhD in molecular biology or can't sleep tonight, here is the link: "Impaired Mitochondrial Dynamics and Mitophagy in Neuronal Models of Tuberous Sclerosis Complex."

Trying to make sense of it all...and also a little artwork from Ollie's cousins, Will & Wyatt 

The biggest news of the day is that he peed in his diaper!!!! PRAISE THE LORD!!! We both thought we'd cry at the sight of it. This is incredible news, because the reality of doing the catheter 3 times a day is really uncomfortable for him and logistically overwhelming to us. He also did a bit of walking the halls today he has gotten weaker from being in the bed so much.

The thing we are most worried with tonight is that his low grade fever doesn't blossom into something more serious overnight. So we hope and pray and wait. Thank you for hanging with us.

Sunday, January 1, 2017

Happy New Year, Hospital Style

Yesterday morning got off to a good start. Oliver and I went to the play area on the floor. He did well, although a bit unsteady on his feet. Then we got a special pass and went down to Starbucks for 30 minutes or so. He was happy as could be on his iPad. Unfortunately, the rest of his day was filled with crying and severe pain due to constipation. We wish we could take this away from him...

Yesterday we had a few visitors, and indeed a confetti cannon made it into our room (with a few other celebratory...beverages). One of the agents from LPG stopped by with his wife and brought some NYE treats, and of course I freaked out when I saw this hat. It says "Best Year Ever"

Thanks for the confetti cannon, JP & Mallory perfectly matches the Best Year Ever Worksheet we use at Lanier Property Group to plan. I struggle to believe 2017 could be my best year ever based on how it has started, but I figure a bad beginning doesn't always mean a bad ending.

Found some NYE decorations at Target and couldn't resist. 
Clearly we were not ready to go home this weekend. Oliver still continues to refuse all drinks. He is drooling a great deal, which is a sign he doesn't want to swallow anything (even his own saliva). We are now 99% sure he will have a g-tube and possibly a Nissen fundoplication. Per the surgery consult we had today, Oliver could have two sedations this upcoming week or they may be able to do everything at once. We are still hopeful we'll be out of here by this time next week.

Last night we wearily cuddled up on the hospital couch and toasted a New Year. The implications of going home seem insurmountable now, so you can pray for us for our transition home. We are overwhelmed about how to add all this new medical complexity into our already full lives.

Super romantic...

I just keep clinging to this from Tim Keller's book, King's Cross:
Following the Thread
About 150 years ago George MacDonald wrote a children’s book called The Princess and the Goblin. Irene, the protagonist, is eight years old.  She has found an attic room in her house, and every so often her fairy grandmother appears there.  When Irene goes to look for her she’s often not there, so one day her grandmother gives her a ring with a thread tied to it, leading to a little ball of thread.  She explains that she’ll keep the ball.
“But I can’t see it,” says Irene.
“No.  The thread is too fine for you to see it.  You can only feel it.”  With this reassurance, Irene tests the thread.
“Now listen,” says the grandmother, “if you ever find yourself in any danger… you must take off your ring and put it under the pillow of your bed.  Then you must lay your forefinger… upon the thread, and follow the thread wherever it leads you.”
“Oh, how delightful!  It will lead me to you, Grandmother, I know!”
“Yes,” said the grandmother, “but, remember, it may seem to you a very roundabout way indeed, and you must not doubt the thread.  Of one thing you may be sure, that while you hold it, I hold it too.”  A few days later Irene is in bed, and goblins get into the house.  She hears them snarling out in the hallway, but she has the presence of mind to take off her ring and put it under her pillow.  And she begins to feel the thread, knowing that it’s going to take her to her grandmother and to safety.  But to her dismay, it takes her outside, and she realizes that it’s taking her right toward the cave of the goblins.
Inside the cave, the thread leads her up to a great heap of stones, a dead end.  “The thought struck her, that at least she could follow the thread backwards, and thus get out…But the instant she tried to feel it backwards, it vanished from her touch.”  The grandmother’s thread only worked forward, but forward it led into a heap of stones.  Irene “burst into a wailing cry,” but after crying she realizes that the only way to follow the thread is to tear down the wall of stones.  She begins tearing it down, stone by stone.  Though her fingers are soon bleeding, she pulls and pulls.
Suddenly she hears a voice.  It’s her friend Curdie, who has been trapped in the goblins’ cave!  Curdie is astounded and asks, “Why, however did you come here?”
Irene replies that her grandmother sent her, “and I think I’ve found why.”
After Irene has followed the thread and removed enough rocks to create an opening, Curdie starts to climb up out of the cave- but Irene keeps going deeper into the cave.  Curdie objects:  “Where are you going there?  That’s the way out.  That’s where I couldn’t get out.”
“I know that,” says Irene.  “But this is the way my thread goes, and I must follow it.”  And indeed the thread proves trustworthy, because her grandmother is trustworthy.

So many of you are texting, "How are you holding up?" Sometimes we feel like a strong tower and other times we feel like a pile of gravel. It is an emotionally depleting experience. But in all honesty, all we can do these days is follow the thread. We can't go backwards. Often times all this testing has looked like a dead end with no answers, but we do trust The Thread Holder is good and trustworthy. So we move forward. One hour at a time. Handling each challenge as it presents itself. Sometimes we stop to cry because having a child's life hang in the balance is as scary as it gets.  But no matter what, we carry on. Feeling our way through the dark and tearing down stone walls. We give everything, but up.

Friday, December 30, 2016

12-30-16 Update

Oliver's bladder test showed no signs of physical problems, but did reveal an enormous bladder. The x-ray inadvertently showed that Oliver is very constipated again, so we are going to get to work to try and help him with that ASAP. The VCUG test was incredibly painful for him and something we hope to never have to repeat. He had over 1 liter of contrast in his bladder at one time! Ouch!

Oliver's brain MRI is stable, as expected. No meaningful changes from his last one this summer.

The mTOR inhibitor is not an option for the constellation of symptoms we are seeing, so it is off the table. We don't think the side effects are worth the potential benefits right now. The neurologists' only other thought is to do blood work for genetic testing in case Oliver has an additional disorder. It will take at least a month for those results to come back. So in essence, neurology (at least here) has done what they think they can do.

Dr. Thiele and Dr. Wong have agreed that discontinuing Onfi could help with the constipation and/or urinary retention, so tonight we are discontinuing it. There is no better place to get off meds than the hospital; so if we have to be here, why not eliminate some variables?

Dr. Michelle White is the attending physician that is leading the team of hospitalists, and we are super impressed with her. She has been a terrific advocate and thoughtful clinician. She has determined it is not safe for us to go home until another video swallow study can be completed. We are worried Oliver may now be aspirating on food. We also need to make sure he can walk normally, and we get a bit more data on the desaturation events. If we were to leave and he had a significant aspiration and stopped breathing, the doctor said it could be "catastrophic". We obviously don't want that, so we'll be here until at least Tuesday and later if he will need a G-Tube (which is the only solution for a kid that is aspirating all liquids).

So the plan over the weekend is: meet with the G.I. docs to get more clarification on how to keep his bowels moving, meet with P.T. to address anything that could have changed with all these bed ridden days, and then perhaps meet with the supportive care team. We want to keep Oliver comfortable as he has seemed in some kind of pain for almost two straight weeks. Andrew and I will switch off spending the night here, and hope to get out a bit when people who know Oliver well come and visit. We got this. I am just bummed I left my confetti cannon at home for tomorrow night...

Morning Update 12-30-16

Morning Update: Oliver is having a VCUG to check his bladder function at 10:30 and a MRI of his brain (and maybe spine) this afternoon. After that we have to confirm he can drink and walk normally before we can leave. So right now I am thinking our best case scenario is leaving Saturday. Obviously, if they find anything significant with either test then we may have to stay. We hate to have another waiting filled holiday weekend in here, especially since he is struggling with it so much more now. BUT we don’t want to rush out of here and have to take an ambulance back. We are being trained on how to cath him (fun times!) and trying to decide about the oxygen needs once we return home. Your prayers for our stamina and clear thinking are appreciated. We are obviously driving many decisions and after 5 hospital stays and sleep deprivation for months we aren’t as sharp as normal. We’ll update this afternoon once we have results of the tests. Nurse John stayed last night and we stayed at a friend's house that is 4 minutes from the hospital. They have a little room off their basement that is quiet and private. We feel better having gotten 7 hours of sleep. John is a saint and Oliver did not have any significant desaturations last night, which is encouraging.  

Thursday, December 29, 2016

12-29-16 Update

Waiting on the MRI still...incredibly frustrating!

Back on the regular floor. Thank God. We were not super happy with the PICU experience. 

Waiting on a follow up swallow study. If it shows Oliver is aspirating on all liquids we can't leave until he gets a G-Tube. The study needs to happen tomorrow, because there is another holiday weekend coming up. Sigh. Happy New Year

Depending on what the MRI shows and what the neurologist says, there is a chance we could get out on Saturday...but we are facing some major challenges with Oliver's care being more complicated than it already is. 


So we are aggressively planning for getting all the tests we need to have done in the next 24 hours, since the hospital, in essence, goes into holiday mode yet again. We also need to figure out how we are going to deal with significant changes to Oliver's diet, food and drink prep, diapers, catheters, weekly colon clean outs, ongoing dehydration concerns, pulse oximeters and perhaps even oxygen. We are learning how to use the catheter on him ourselves, since we'll likely have to do this when we get home. Andrew and I have gotten some serious medical training this go round. 

At this point, most everyone is coming to a similar conclusion: what is going on is neurological. This is not good news. There are no easy fixes. 

Per the recommendation of one of the doctors I have laid all of this out visually to try and make sense of it all. Some friends came to see us and ran to Staples to get me some post-it notes that you stick on the wall. I think this could help all of us as we try to put together this puzzle. 

And side note: try not to get sick over the holidays, it not only stinks to be away from the fun festivities with friends and family, but you also will spend vast amounts of your time waiting. And waiting. And meeting the new residents that are young enough to be your children. Boo. 

So we will see what tomorrow holds. We are stressed and tired, we feel utterly overwhelmed at what we are probably going to have to do moving forward, but we are remaining a great team. Oliver has tolerated all of this SO well, but he is beginning to hit a wall. He is no longer smiling at every person that comes in and withdraws when someone reaches towards him. We are amazed at his resilience, but we all have our limits. 

Wednesday, December 28, 2016

Rules Outs & Updates

Yesterday right after our post, a rapid response team was called to our room. This is something you never want to experience. Alarms went off throughout he entire hospital, and around 20 people were called to our room over the loud speaker. Basically Oliver repeatedly desatted, which means his oxygen levels dropped. They dropped so low, 37 (normal range is 96-100) that his lips turned blue. Anything under 50 is hard to measure correctly, but you get the drift. For a moment we thought we may lose him. Thank God he soon perked back up and we avoided a ventilator...or worse. 

Ollie on the ipad and mama writing this blog post

Due to the breathing issues, we were rushed into the PICU. He has not needed oxygen and has been really stable the last 20 hours. We are SO thankful. Clearly the constipation, urinary retention, and aspiration are taking a backseat to the issues with breathing. His chest x-ray came back clear and renal ultrasound came back unchanged from his last one in June (kidneys are a big issue in TSC). I suppose we are happy about this, but we wanted a smoking gun; a clear reason for all this. Anyone with a medically fragile child, with a genetic disorder knows that answers are elusive. So today he will probably have a brain MRI (they are worried about the risk of aspirating while he is under sedation) and they will begin reading the data from the EEG that started yesterday afternoon.  We already know he has many brain tumors, some tiny, some larger. They are not cancerous, but 3 of them, called Subpendymal nodules, could be life threatening. However, we have been told that if they had been growing he would be vomiting, and that has not happened at all. At this time we have some things ruled out (lungs and kidneys), but no answers yet. 

After consulting with Dr. Greenwood (Pediatric Neurologist) we have a working theory that may piece all this together. A key part of this is the fact that for all of his life Oliver has stopped seizing when he is sick. He has not had his regular seizures for months and he has been sick for months now. Once they have done more research and we see the brain MRI we'll potentially know more. It is a ray of hope, but much is left to uncover. Basically, all this could relate to the way the mTOR pathway works with is especially connected with autonomic nervous system. We are confident in our team here. Y'all are so sweet and we appreciate everyone's thoughts and ideas about what is happening, but at this point I have to have over 50 texts or FB messages with a suggestion, test, diagnosis or article to read. I simply can not keep up with all of them and I thought you all may like to know all we've done and what we are potentially going to do. 

Done- Full spine MRI, it was clear
Done- Abdominal CT, it was clear 
Done- Kidney Ultrasound, it was stable
Done- Chest X-Ray, it was clear
Done- Swallow Study, he is aspirating thin liquids, we are currently on a nectar thick diet
Done- Blood work and urine samples (many times), all were within normal range 
Done- EEG in Wilmington in October, nothing unusual

Doing- EEG here in Chapel Hill, no seizure activity. Desaturation events are not related to any seizure activity. 

Getting his EEG placed

Possibly today: MRI of the brain 

Waiting until we know more and trying to determine if we need them at all: Endoscopy, Colonoscopy, Bladder Retention Test (that I can't remember the name of right now), pH probe, and a host of other ones I can't recall. 

We appreciate all of you so very much. We are especially grateful for our church community ever faithfully praying for us and encouraging us, our friends who have been walking through this with us for months, our family who has been with us from day one, and of course our Realtor family that continues to warm our hearts with their beautiful generosity. 

In short, your love holds us together when we want to fall apart. 

Tuesday, December 27, 2016

Hospital Admission #5 Update

Skip to the bottom if you want the most recent update for 12/27/16 at 10:30 AM 

Timeline of hospitalizations and ER trips since October.

ER Visit # 1
Oct 7th at New Hanover Regional Medical Center
Reason: Extreme aggression and seemed to be in significant pain
No physical exam
Head CT to rule out brain tumor growth or changes, it was stable
Potential of inpatient psychiatric stay was suggested

On the ER floor with mama

ER Visit #2
Oct 8th at Wake Forest Baptist Hospital
Reason: Extreme aggression and seemed to be in significant pain
No physical exam
Restraints needed and Haldol Shot given (this is a very serious medication to give a kid)
Inpatient Psychiatric stay seriously suggested after brief neurology consult with a doctor we do not usually see there. After finding out more about being "committed" including a ride in a cop car, handcuffs and placement anywhere in NC we declined and took him home.

ER Visit #3 and Admission #1
Oct 13th at NHRMC (3 days)
Reason: Extreme aggression and seemed to be in significant pain
Per Boston team had abdominal x-ray and confirmation of serious constipation. He was admitted for a colon clean out, which was done with a NG tube and GoLytely. 

Admission # 2
Oct 18 (10 days)
Reason: Extreme aggression and seemed to be in significant pain
Outpatient x-ray showed constipation again so readmitted for clean out #2
Extreme behaviors continued during admission. Oliver was biting through his tongue, tied to bed with restraints due to his extremely aggressive behavior and pulling out his NG tube. This was a horrific experience and traumatizing for all of us. After we asked for a CT scan to rule out other issues it was discovered Oliver had pneumonia in his lower left lobe (which would be hidden on an x-ray) and a massively distended bladder. Aspiration was first suspected after lung issues noted on CT scan. This was the first sign of urinary retention. At this time his pulse ox went into 60s. We were taken to PICU, given Precedex to sedate him, high flow oxygen, antibiotics, put in a catheter and fecal management system. Behaviors and pain subsided.

After this hospital stay his sleep was severely disrupted and Oliver clearly exhibited withdrawal symptoms for almost a week on Precedex.

We were told to do Miralax twice a day and increase fiber in diet upon discharge.

Home in time for Halloween. Are you tacoing about cute?!? 

ER Visit #4, Admission # 3
Dec. 9th (5 days)
Straight to PICU this time for clean out, Precedex started, another NG tube. Urinary retention was a problem again, but due to the catheter it was hard to tell how much of an issue it was.

Were told to do Miralax twice a day, maintain 30 grams of fiber a day in diet, and mini-clean out on weekends with five Miralax doses upon discharge.

Mr. Skinny in the playroom 

Swallow Study
Dec. 22nd
Aspiration is discovered, nectar thick liquids are needed moving forward.

ER Visit #5, Admission #4 to NHRMC and then transfer to UNC
Dec. 24th -TBD `
Straight to PICU for monitoring and team believed Ollie needed a G-Tube and perhaps reflux was at play. Desaturation happening intermittently and cause for concern, first seen in ER on 12/24 by ER physician. After one night transferred to UNC since Wilmington area specialist were not around until the first week of January. 12/25 brought to UNC via ambulance. UNC team to call Urology, GI, Dietitian & Speech Therapy to consult. Kidney ultrasound ordered. They were hesitant to rush into surgery and put in a G-Tube when Oliver has a known history with surgery infections and we fear he could easily pull it out.


We had a scary turn of events this morning. Thank God for mother's intuition. I asked for his pulse ox to be put back on, it was off all night and he began to desat again. At one point he got as low as 37 and his lips turned blue. This is currently continuing on and off. He has never had sleep apnea or any kind of seizure that caused him to stop breathing so everyone here is very worried. They are calling in Neurology to consult and plan to repeat his brain MRI tomorrow AM. Today he will have chest x-rays and a kidney ultrasound. We will possibly also have a video EEG. 

My gut is something is really wrong. Clearly the breathing problem is taking precedent right now over the other issues. We ask for your prayers. 

One of our many discharge days

We have spent 30% of the days since our first ER visit in the hospital. It is baffling to us that in less than 77 days we now have a child with serious constipation, urinary retention, aspiration and desaturation issues, when he has never had any issue with any of these four things in the past. What gives? We hope the team here at UNC can point us in the direction of health and happiness. Our brave and resilient boy has been through so much.