Spina Bifida Clinic Appointment

Yesterday, Seth, James, and I went to San Francisco for Spina Bifida clinic. It was a LONG day. We left at 7am and we didn't get back home until 10:30pm! James did great, and was SO brave! He earned lots of quarters and other change for his piggy bank, which he is saving to go to "the movie store" again with Daddy (Best Buy) -- Which is where Seth took him the other day after he was brave for his haircut.

James had a routine ultrasound of his bladder and kidneys. His kidneys look great, but the muscle in his bladder wall is very thick, which means that it has been working too hard, so they are going to put him on ditropan, a medicine that will relax his bladder and help the muscle to thin out to be the way it is supposed to be. The ditropan will also help him to be dry between catheterizations, too. He also had blood work yesterday (yes, he had to be poked, but he was SUCH a big boy!) and it was to look closer at the health of his kidneys, and also to see if there was anything abnormal that would explain his recent high blood pressures. All of the blood work came back normal.

We talked at length with several doctors about James' autonomic dysreflexia and syrinx and headaches... The consensus is that a shunt revision is going to be the best first step in exploring what could be causing these headaches, and hopefully helping the flow of spinal fluid in James' whole body. I am still very skeptical that a shunt revision is going to provide any kind of dramatic improvements, but Seth and I agree that if we are going to move forward with how the doctors want to treat James, it makes the most sense to go ahead with the shunt revision. So that surgery will probably be in the next couple of weeks, maybe even before Thanksgiving!

One thing that the neurosurgery nurse practitioner said is that she doesn't think that a surgery to put a shunt in the syrinx has been completly ruled out, and that down the road, after the shunt revision, that option might be considered again, depending on the outcome of the shunt revision and its follow up scans. So, that was good news, and the news that I have been wanting to hear.

Dr. Houtrow, the physiatrist who is the head of SB clinic down there, spoke with us about how James' conditions could lead to emergency situations, and she explained what we should be looking for, and how we can be prepared. The things she said to us did not come as a shock to us, because they were things that we already knew, but she did give us some concrete guidelines, and went into more detail to make us feel more prepared..

She said that there are two potentially dangerous things going on. One is the high blood pressures associated with the autonomic dysreflexia. She said that prolonged and very high blood pressures can change the blood vessels in your body in a way that could cause a stroke. She said that it is a very rare thing, but it can happen, and if it does, it can be life-threatening. She said that if James' blood pressure is 140 or higher for a half-hour or longer, that is an emergency situation, and we should take him to our local emergency room. She said that if his blood pressure goes to 160 or higher for any amount of time, that is an emergency situation, and he should be taken to the emergency room. We were glad to have this information, because the nurses at daycare have been asking us for some guidelines for when to call 911. They know that James has a good potential for an emergency situation, and they watch him enough that they have to protect their own liability. Anyway, the clinic doctors are going to try to get a pediatric blood pressure cuff for us to have at home, which will be great because they are hard to find in the stores, and we have been relying on the school nurse and the nurses at playcare to keep a record of his blood pressures, and it would be better if we could keep track of that at home as well.

The other thing about James' health that is a potential for an emergency situation is his breathing. Dr. Houtrow said that since James has lost such significant function in his arms, even up to the shoulder area, and it happened so quickly (pretty much over night!), that the concern is that the nerves that control his arms are so close to the nerves that control his diaphragm, and if his diaphragm is affected, he could start to have difficulty breathing, and he could lose his ability completely to breathe on his own, and could need a ventilator. Dr. Houtrow said that it is difficult for them to know how likely it would be for this to happen, because the exact cause for his arm function loss is still somewhat unknown, and also because since James' complications in and around his spinal cord are so complex, it is really unpredictable. She also said that it is hard to say how fast it would happen. He could have difficulty breathing over the course of several hours, and we would start to see a change in behavior, or a refusal to fall asleep, and we then we would have time to get him to the ER, -OR - he could suddenly stop breathing, in which case we would need to do CPR and call 911. She said that she recommends that both Seth and I to take a refresher course on our CPR, and always keep that current in our heads, so that we would be able to help James breathe if we needed to, until an ambulance could come. James' voice and breathing already seem a little bit weaker to us than they used to before the function loss a couple of months ago. We are just going to have to pay close attention to that so that we can notice any changes.

All of this is a lot to take in, I know! It makes me think about James' care and how serious of a job it is to be the one responsible for caring for him. It makes me think how important it is going to be to have several home nurses in place, because leaving him with a regular babysitter is not really a great choice, for any long period of time, especially. Not just because of his catheter and pain issues, but also now because of these potentials for emergency. Anyone caring for James is going to have to be well informed and well prepared. I have a lot to do an a lot to think about.

We are going to be back down in SF a lot over the next several months for the shunt revision and follow up scans, and for a sleep study that they want to do to monitor his breathing overnight. Also, we have to go back to clinic in about a month or so to get a blood pressure cuff that we will take home for 24 hours, and it will automatically take James' blood pressure for 24 hours at home, so they can get a good idea of what kind of pressures his is having on a regular day. Also, the urologist wants to see him in about a month to see how he is doing on ditropan, and how his bowel program is going. WHEW!!

So, yeah we are all tired today! James slept in until like 9am this morning, which is really late for him!! It's raining outside and cold, so I am just getting paperwork done, and resting. I've been feeling tiny, tiny little twinges that I think might be the baby moving for me, but I know it's still really early -- so I guess I can't say for sure.

I know many of you blog-readers have been praying for us, and praying with your kids for James, and it is a blessing to me that you are reading this blog and trying to understand everything that is going on in James' little body. We are thankful for all of the ways that people have reached out to us and loved us. I love when mommies and daddies tell me that their kids have been asking about James and want to visit him because they have been praying for him.

It blesses me when I talk to friends who get it. Like when people understand why I haven't called them in months, why I have shut down a little bit, why a family trip to the pumpkin patch with no issues is such a thing to be pleasantly surprised by and thankful for! Why a day at home just cooking and cleaning and being normal is such a fun thing for me!

It blesses me that Josiah has his grandma and grandpa and Uncle Lance that he can be with on days like yesterday, and I know he is happy and secure and having a blast.

Seth ran into a friend - an acquaintance really - at Cal Java in Chico, on our way out of town yesterday morning, and told him where we were headed, and why. He came back into the coffee shop about a minute later with a check in his hand for $200. It was such a shock to us because we barely know these people, but they love Jesus, and they just have a heart for our family.

We are SO blessed, and God's grace really IS sufficient. If I could remember His love and heroism each moment of the day, and TRUST Him that He WILL come through for us (even though he DOES like to wait till the last stinkin' minute!!) - I would have more patient responses to the struggles, I would have a calmer heart in the face of the craziness. I would be a blessing and not a curse to my family!! Have mercy, Lord! Have mercy!