Wednesday, March 25, 2015

The Hallway...

A woman who I knew through the church that we attended in California and who mentored many young women used to say "When God closes a door, He opens a window......but it sure can be hell in the hallway!"

Well, we haven't exactly had a closed door.  But we ARE in the hallway and it sure does feel a little bit "hellish."  The nurse from the Infectious Disease doc's office returned Robbie's call this morning to let us know that the testing that they ordered for him to determine if there are signs of fungal meningitis in the fluid from the lumbar puncture take a long time.  She said that it will likely by another week and very possibly longer before we have those results.  So..... 

Hallway.  What will open?  A door to finishing the year of anti-fungals and hopeful freedom from coccidioides or a window into a world of learning about a life-long diagnosis?

Robbie also is continuing to struggle with headaches off and on since the procedure last week.   It is possible that they are related to the puncture and that Robbie will need to return to Houston for another puncture to "patch" the hole in his spine from last week.  However, he isn't convinced that these are the same "spinal headaches" he was experiencing through Sunday.  He says that these feels differently and isn't sure if they are stress induced or from another cause.  This afternoon a friend reminded me that she is praying WISDOM for us to know whether or not to seek treatment for these headaches.  That was such a good reminder.  YES I just want the pain to go away.  But just as importantly, I appreciate your prayers that God guide us to make the best decisions about when or whether to seek treatment.

Again....  it sort of feels like a hallway.  Or at least standing in the hallway with a headache. 

Anyway, we continue to appreciate and feel so encouraged by your concern, love, messages and prayers.  As we hang out in the hallway, waiting for answers, we are blessed by you all peeking in on us!

Saturday, March 21, 2015

Bollywood and Dr. Painless

On Thursday of last week Robbie's lumbar puncture went off without a hitch.  The words "spinal tap" have likely earned their horrible reputation in our society, but we were blessed that for Robbie the procedure was planned and took place in a controlled environment, performed by a neuro-radiologist.  The doc who performed the procedure has been in practice for more than 40 years and when multiple staff people tell you "Oh, this is going to be easy - you've got Dr. Painless!" you figure that he must have well earned his reputation!

I was completely surprised that the brought me with them in to the procedure room.  Robbie just laid on his belly and the Technician took a few xray films of his back with a pair of surgical scissors laying across it.  When they found the lamina that they wanted to go between in relation to the scissors they marked it with a Sharpie marker and went ahead.  It was so much mind-over-matter; knowing where the needle was versus the fact that it sort of just looked like a blood draw externally.

Not only was Dr Painless very careful to keep Robbie physically comfortable, but once he learned about Robbie's profession and schooling he kept up a steady stream of conversation about all kinds of music -- but he was very open that his biggest musical interests lie in Bollywood, the Beatles and how a British band got their start in Hamburg.

Robbie's recovery has been so-so.  Lots of headaches, but nothing extreme and he has consistently had relief when he lays down.  We are monitoring it, but for now he is usually able to be up and about pain-free for several hours before the next headache comes on.

Obviously the most painful aspect of this is the waiting....  Now we wait for the results.  Robbie did call the doc's office on Friday and at that point they reported that nothing was in yet.  So hopefully early next week!  We continue to covet your prayers!

Wednesday, March 18, 2015

Spring Break Fun!

Despite all of the medical stuff it's actually been a fun and productive Spring Break.  We've planted our spring vegetable seeds, raked in our first batch of home composted fertilizer, made playdough, done science experiments, caught bugs (I stayed out of that business, but apparently Evie is an expert spider catcher), caught lizards (again, not my territory!), made the front driveway into a chalk mural and did the famous Pinterest cookie sheet of baking soda and eye dropper of colored vinegar activity.

Of course on Monday we also had the great fun of a colonoscopy.  We had a very early hospital report time of 6am which meant Robbie was scheduled first, but unfortunately one of our surgeon's admitted patients was not doing well and he had to rush her to surgery.  Our earnest prayers were with him and that patient's family as we waited.  Of course we wanted to get out of there but were thankful that we were healthy, comfortable and well as we waited!

When Robbie did get seen it was discovered that he has a "very redundant colon" essentially meaning that his large intestine is longer than it needs to or would be in a "normal" person.  What this translates in to is that he sort of has a "poo rollercoaster" (as our friends the Leslie's so eloquently put it)!  The Doc explained that there are lots of twists and turns, ups and downs in Robbie's colon that most people don't necessarily have.  While this isn't necessarily considered problematic, these twists and ups make lots of places for gas and waste to get trapped and cause pressure or pain.  The doctor feels that this was probably a condition present prior to the hernia surgery in August that started this "adventure" we are currently on.  While this likely was pre-existing, the sedentary condition that Robbie has been in between the ongoing pain, hospitalizations and work load trying to catch up at school between medical appointments has likely exacerbated that difficulties that can be caused by a redundant colon.

Sooooo.....  It was off to the chiropractor yesterday.  Robbie had been being seen and receiving physical therapy for a congenital back deformity in the spring of last year.  It isn't anything serious, but after years of back pain it was finally discovered that his lowest vertebra is fused to his pelvis and he is missing the disk that would normally be between the two.  The chiro was astounded by everything Robbie has been through medically the past 6 months and noticed pretty extensive changes in both his strength and range of motion upon testing.  So, lots of walking...  Back to physical therapy...  And home exercises...  Periodic adjustments...  We feel confident that now that the adhesions are gone he will be able to get back to an active lifestyle and a routine that includes more exercise to help decrease these issues.

Tomorrow.  Tomorrow is the big day.  The day of the Lumbar Puncture.  We covet your prayers that this come back negative for meningitis.  If it doesn't we WILL conquer it.  But.  We are tired.  And are having faith that this is NOT what is next for Robbie.  Please join us there!  We continue to be thankful for the many people in our lives who continue to ask about and pray for our situation.  We are grateful!

Saturday, March 14, 2015

Happy Birthday Seeeeeeezter!

"Hello Seezter!"

HAPPY BIRTHDAY!!!!  35?!?!  That's OLD!  I'm allowed to say that.  I'm still older than you.

I miss you.  How are the wheelchair wings?  Good thing there aren't any nasty people where you are because you could REALLY do some damage with that thing!

"Your" babies are good.  Better than good actually.  They're amazing.  Healthy, strong, hilarious -- I swear your namesake gets more of your sarcastic sense of humor everyday.  And your ability to do something that is ridiculous with a straight face.

They know you.  We talk about you often.  They always point you out in photos.  Violet tries so hard to remember you, and laughs and laughs and laughs about her baby self driving your chair into the microwave counter at Posada.  When we were talking about you this week (the girls were using your puppy as a pillow) Evie told me "Auntie not here.  Her gone......where her gone?  Her house?"

Yes.  Your house.  Your home.

I still miss you.  Just as much as the first moment you left.  It still hurts just as much, but maybe not as......often?  I tried to remember today to laugh at the things that you would have laughed at....let the girls have too much sugar the way you would have....

I love you.  Happy, happy birthday.  I can't wait to be crazy with you again!

Since I've only recently resurrected this blog to have a central place to share Robbie's health info, I'm sorry to have taken you down a rabbit trail.  In my blog's former life it was a place to hold thoughts and emotions like this tiny little bit you can read to get to know my "Seezter" better if you never had the honor of knowing her yourself.

Defcon 3

Yes, I named this post after the U.S.'s military defense readiness scale.  It seemed more catchy than "Here We Go Again."  And also, it forced me to research the scale and what the numbers mean.  So we are at 3 because "Armed forces readiness increased above normal levels; Air Force ready to mobilize in 15 minutes."

Yup.  Sounds like us.

First, I'd like to apologize for not updating immediately after surgery as was planned.  Robbie was discharged late the evening after the surgery.  We arrived home at about 930pm and after getting everyone else settled into bed I was headed to sleep myself (Did you READ my post from the night before?  The mistakes bothered me so much I had to go back and edit it.  I was WAAAAAAAAY too tired to have been writing!).  Just about 30 seconds before I would have climbed in to bed my phone began to ring.  I'm not going to be sharing details, but on the other end was a dear friend of ours headed to the hospital themselves.  So two hours after leaving the hospital I was headed back - and remained there until about 6am the next day.  What followed was a very traumatic week long hospital experience for our friends and I chose to direct all of my energy to reestablishing routine for our (patient, loving, amazing, flexible) children and loving on our friends rather than updating the blog.

Which brings us to last Sunday, March 8th.  A week and a half after hospital discharge we didn't expect Robbie to feel "normal" or to be at 100%.  His fatigue level had been extremely high but after 2 surgeries, 3 hospitalizations, major surgical complications, and a complex, unusual diagnosis in 6 months and nothing but fluids for 6 days during the hospitalization we weren't expecting him to run a marathon.  Or even a mile.  What we WERE expecting was for his recovery to continue on the trajectory it had been on for the first 10 days post-OP: a slow, steady improvement in mobility, energy and pain levels.

Instead, beginning on the 8th the pain began to increase, the tenderness returned and his belly began to blow back up.  When we saw his surgeon this past Thursday the distention and firmness of Robbie's abdomen were of pretty definite concern.  So.....  Congrats to him, Robbie gets to have his first colonoscopy a few years early!!  The surgeon feels confident that the small bowel isn't obstructed this time, but he is hoping to see what MIGHT be going on.

In the mean time, Robbie has also been very busy attempting to receive follow up care for the Valley Fever he was diagnosed with last December.  Robbie was hospitalized for almost a week last September after a soft-ball sized hole in his right lung was found by "accident" while he was undergoing a CT scan to follow up on the post-surgical abdominal pain.  The docs were beyond astounded that Robbie was functioning so well and had no respiratory issues with such a large cavity in his lung!  He was hospitalized while they ruled out Tuberculosis and we received word that the biopsies were negative for cancer by October, but it wasn't until December that we were informed that the biopsies did finally grown out the fungus coccidioides which causes what is commonly known as Valley Fever.  This fungus only grows in a very small area of the US, most concentrated in Arizona.  The vast majority of people who breathe in the fungus (which is pretty much EVERYONE who has ever lived in or visited the greater Tucson area) don't even realize that a short period of illness with flu like symptoms that they experienced at some point in time was caused by the fungus.  And then most of those folks never have another issue with coccidioides.  Then there are the weirdos.....which obviously brings us back to Robbie.  Some folks develop a long-term disease process where the fungus disseminates to other parts of the body or continues to cause nodules, inflammation and other complications for the patient.  

Robbie was finally able to be seen by an Infectious Disease doctor in Houston 3 days before his last hospitalization.  No one in this area is familiar with Valley Fever really at all, but this physician has received special training from the Valley Fever Center at the Uni of Arizona and is currently treating 2 other VF patients as well.  The ID doctor has him on a year-long course of high dose anti-fungal medication and is monitoring the hole in his lung.  However, he also let us know that there is an up to 50% rate of development of fungal meningitis when a patient has Valley Fever that has progressed to the point where Robbie's has.  This would change the trajectory of treatment greatly as there is no cure for this kind of meningitis and treatment would have to be life-long.

SO.......... next week Robbie has a PHENOMENAL line-up of activities planned for his Spring Break!!!!  His colonoscopy is scheduled for Monday and a lumbar puncture to test for the meningitis is on Thursday. He just figures if there was some way to fit a root-canal in there he would have the PERFECT break planned.  :)

Ever the Joker.

So....  Our biggest, hope, prayer, request right now is that the meningitis testing come back negative.  That would be (manageable but) life changing.  Secondarily we would REALLY appreciate the essentially constant pain and discomfort in his belly to finally be solved.  Forever.

We continue to appreciate your interest, prayers, concern, questions, meals, love, help, babysitting and comfort.  You guys rock!

Tuesday, February 24, 2015

Surgery Success!

Thank you all so much for your patience as I have processed, talked to both sets of parents, processed, helped take care of a very silly and confused Robbie, processed, watched Parenthood on the laptop in Robbie's room, gone out to transfer my kiddos from one friend's car to another and processed some more.

Surgery was actually fairly quick this afternoon, lasting just about an hour.  When the surgeon came out of the OR area he breezed right past me toward the exit and I thought that he was going to leave without talking to me!  So in my shameless way I stalked him down the hall...  Fortunately he was just talking to two other families before coming back to me.  Unfortunately, I'm pretty certain he noticed me skulking (an appropriate distance away) behind the artificial tree confirming any suspicions that he may have already had about my questionable mental status.

Here is where I warn you that if you are squeemish about seeing someone's insides TURN AWAY, TURN AWAY!

Alright.  For the two of you still here:

This is what the doc found when he got inside.  This is Robbie's abdominal wall.  See it?  Nope.  Me neither.

Until he showed me this.  This is what it is supposed to look like and what it did look like when he was done.  The area with the pattern to it is the mesh that they placed as part of the hernia repair.  All of that mesh was completely covered with adhesions.

Wikipedia explains adhesions much better than I could:  Adhesions are fibrous bands that form between tissues and organs, often as a result of injury during surgery. They may be thought of as internal scar tissue that connects tissues not normally connected.

Here you can see that healthy, integrated (that's what the doc called it) mesh in the top portion of the photo and the adhesion at the bottom as it was being peeled away.  Notice the stringy appearance where it is attached to the abdominal wall.  Ick!


So, the surgeon basically said that there were adhesions throughout the abdominal wall.  He said that he "cleaned them up" and likelihood of reoccurrence is low -- although the occurrence at all is relatively uncommon.   Imagine that.  Robbie have a rare medical issue?!?!  Anyway, as long as the adhesions don't reappear this should take care of that daily, constant, diffuse abdominal pain he's been having!  The surgeon also followed the entire length of Robbie's bowel and stated that he found 3 or 4 spots where it was adhesed together that he "snipped."  Which should help relieve/prevent from happening the bowel obstructions. 

So how did this all happen in the first place?  Well, we don't know.  Doc was explaining that when they place the mesh in the belly it creates an inflammatory response -- sort of like the body is trying to "reject" the mesh.  That is no longer happening here, but it may have immediately after the mesh was placed. Part of why reoccurrence is so low.  If new mesh isn't being placed then there isn't going to be that big inflammatory response from the surrounding tissue. Another thought that my mom had is that the Valley Fever that Robbie also currently has (another blog post explaining comes soon) causes inflammation throughout the body. So it is very possible that the Valley Fever inflammation helped in creating the "perfect environment" for adhesions to form.

So now we wait and heal and hopefully don't re-adhese.  We pray and eat and rest.  So far this recovery already feels to completely differently to last time.  But right now I keep falling asleep at the keyboard so I will go sleep and keep y'all posted tomorrow,

Abandoned blog turned medical journal

Hello Friends,

I just wanted to start by thanking everyone who has been praying, writing, calling, texting and loving us.  I know that we have been terrible at responding lately and I appreciate your understanding and grace as we continue on this medical journey. In our efforts to keep you all better informed and disseminate the latest info without burning me out, we decided to revitalize my old blog as a place to post info so it will be accessible for everyone who has been so kind and is thinking about us.

I am going to start with where we are right now, so for those of you who haven't been aware of Robbie's medical issues the past 7 months I will try to catch you up with posts in the next few days.  For the current issues to make sense though, it is important to know that Robbie unexpectedly woke up with an umbilical hernia while we were on vacation this summer.  A visit to urgent care and ER later we were assured that it was a small, uncomplicated hernia that could wait for repair until we got home to Texas. Three weeks later, when he was finally seen by a surgeon, the hernia was no longer so simple and needed urgent surgery.  Robbie spent 4 days on bed rest per the surgeon's orders while waiting a surgery spot. On August 20th the hernia repair with mesh was completed. It was a long day as the earlier surgery had ended up complicated and took 5 hours more than they'd planned.  But it was done and by 10pm that night I had a very groggy, pained husband home.  We were told recovery would be 3-5 days of light activity with full recovery in 6-8 weeks.  Unfortunately that has not been our experience.  It has been 6 months and Robbie is still experiencing daily pain or "soreness" at his side where the mesh was attached, increased severe pain anytime he walks any distance more than just to the mailbox and back, and completely inability to lift, carry or normally participate in his previous daily activities.

Robbie was admitted to the hospital this past Friday, February 20th at about 3am with a bowel obstruction.  It had been exactly 4 weeks since he was last admitted for his first bowel obstruction.  Needless to say, two obstructions in 4 weeks isn't normal or a good sign.

While he is doing somewhat better now than when admitted (pain is mostly resolved, nausea is almost nonexistent and he is no longer vomiting) he appears to still be obstructed....if you know what I mean.  :-/

Yesterday he had the pleasure of consuming some lovely radioactive juice (barium) and getting a series of about 12 CTs of his belly taken until the barium hit his colon - at which time they watched it "live" as it made its way down.  It had sounded while he was in there like they had noticed something, but the radiology report came back as "normals study" so today the surgeon will be taking him to OR for "Exploratory Laproscopic" surgery. Basically he is hoping to find a location(s) where Robbie's abdomen or colon developed adhesions in the process of healing from the last surgery. If he does, he is hoping that these are small enough that he can snip the adhered portions apart and that this  will free the colon so there are no further obstructions. He is also hoping that there are adhesions of  some kind at the mesh attachment points toward the sides of Robbie's abdomen that will explain the constant side pain and can be revised to improve that situation.

They had been hoping to fit Robbie in between two patients on this morning's schedule but at this point, I don't think that will happen.  So I'm guessing surgery will finally happen sometime late this afternoon.  Here's what we would love for you to do for us:

Please PRAY.  Pray for them to find SOMETHING to explain all of these issues.  Robbie literally has not had a pain free day since the surgery in August.  Pray that whatever they find is minor, easily addressed and successful.

Please pray for peace. For both of us.  Surgery recovery did not go well at all in August.  Robbie will easily admit that he is honestly afraid - not of surgery, but of the pain, frustration and potential for more adhesions involved in recovery.  Pray for me.  For those who know my family history, the surgical waiting room is not a good place for me.  I don't do well in there.  Pray that I can keep myself distracted, remained focused on positive memories and that I'm not in there for long!

Pray for our sweet babies and the amazing people who have taken care of them while we are here yet again. We were so blessed that Nana and How were in town the night we came to the hospital and while everyone wishes that visit would have been different, it was so reassuring to know our girls were safe, loved and having fun. So many other people from homeschool moms in our co-op, the Godparents and friends down the street have been amazing and enabled me to be with Robbie and talk with docs while our babies are playing and happy.  But it's taking a toll on the girls. Evie wakes me up in the middle of the night just to check "Dada still in hoss-a-pull?"  Pray for Robbie's parents who are so far and so worried and feel so helpless.

I'll post again when we have some news about the surgery time...