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!
Wednesday, March 25, 2015
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!
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!
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!
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!
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