The Un-update

So I know we had mentioned that we would have details today about a game plan and some thoughts from what was seen in the tests Isaac had done last Friday.

We don't.  We have more questions and thoughts,  but no concrete answers.  We are waiting on study group opinions,  low molecular weight heparin levels, full review and consult of studies from Friday and the list goes on. 

There is a sense of frustration. But, we are also thankful. We have had invaluable discussions with some of Isaac's doctors that have led us to see opinions of the study group. Not only that, but it has been a cause for a pause before this next surgery,  which is huge.  It is allowing us to get all of our questions answered (or at least asked). If none of this had happened,  we would be right on the eve of Isaac's biggest surgery.  I would much rather be experiencing this clot post Angiogram than post 14 hour spine surgery. 

That said,  we are still in at CMH, & we are waiting to hear what the game plan is on going home.  Please pray that it is soon.

Hugs!
Murdock's

Surprises... #2

Isaac did very well during his CT, Myelogram & Angiogram yesterday. We won't know all the results and recommendations until Tuesday, due to timing of the doctors & radiologists reviewing and having time to consult with each other and then communicate to us.

As the title would indicate, Isaac has another surprise (if you can call it that). The Angiogram requires a longer stay in recovery for observation, to ensure that there is no bleeding from where the catheter was inserted into the femoral artery. It was about 3 hours into being in observation, that the nurse noticed that his right leg was cooler to the touch than his left and the pulse was hard to palpate in his right foot. A bit more time went by, and the color in his right leg started to change to grey, and we were sent on our way to have an ultrasound of his leg to check for a clot.

It was determined pretty quickly that he had developed a decent sized clot in his right femoral artery, and that he would need to be admitted and put on some anticoagulants. So, he won at least a 3 day/3 night stay in the PICU at CMH! How lucky! (And, while you may sense some sarcasm, we are truly thankful that this was discovered before we went home, and that we are most definitely in the right place to get this taken care of). And, with the luck Isaac has, we'll have him pick our next lottery ticket numbers.

We're still waiting on news on how long they think we'll be here, and what the longer term course of treatment is for Isaac, and how that will affect any surgery timeline that we have.

He is in pretty good spirits, watching Mickey Mouse, and trying to get some rest. We've seen a few smiles too!

Eli is having fun staying with Grandma and Grandpa, helping with chores (he LOVES helping Grandpa with trash (imagine that), feeding the birds, helps grandma with his dishes, and many other things. He also got to go to dinner with Grandma, his cousin Patrick and Aunt Andrea last night too. While Isaac was having his tests done on Friday, Eli got to go to the gym with our nanny Jaime, and several of his friends. He is FINALLY tall enough to climb up the kids rock wall and do the big slide. I think he took an extra long nap afterwards! I can't wait to take him there to see him do all of the big kid stuff too!

As always, we sure appreciate all of the prayers and thoughts. Please pray that Isaac doesn't have a 3rd surprise up his sleeve!

Hugs-

CT Scan

We did finally get word that Isaac's CT scan got moved up to... tomorrow. So we will arrive at CMH bright and early in the morning. 

Thank you for all of your thoughts and prayers as we had down this road seeking answers for Isaac. 

Love, 
The Murdock's

Surprises.

Surprises come in all shapes and sizes. Some surprises are good, and some, well, not so much. We’re (Isaac) facing one that isn’t so much fun.

This was just the other day - when KSU fell to Iowa State in the Big 12 Tourney.

You see, Ryan and I both had the same mindset on Isaac’s surgeries this past fall. We thought, “He just has to make it through these, and we’ll be smooth sailing. Yearly rod-lengthening surgeries, and we’ll figure out how to time those, and all of this will just be a distant memory of the hugeness of these surgeries.”

Fast forward several months, and we’ve been noticing that Isaac’s legs have become more rigid. He ‘crawls’ with his legs straight out behind him, kind of in a plank position. When he tries to pull himself up into a chair, he can make it up high enough, but can’t communicate to his legs to tell them to relax so he can maneuver into the chair. Then there are times when his legs are relaxed, and he can do some of these things. But, the progression has been that this has been happening with more frequency. When his legs are relaxed, we notice that his club foot is starting to recur because of the increased tone and rigidity or spasticity. It has culminated enough that Isaac will be having a CT Myelogram and Angiogram done to see if Dr. S & Dr. I can determine what precisely is causing this.

3.15.14 at the park close to Gigi's house

The initial thought is that there is a ‘gibbus’ or a knuckle like form of bone underneath where they relieved much of the pressure this past fall. This is right below where his spinal cord thins to several small fibers. The problem is that the gibbus is between the two growth plates there, and the hypothesis is that instead of growing lengthwise, perhaps it is growing outward and putting pressure on his spinal cord. Isaac will have a CT Myelogram to see if this is the case.

The CT Myelogram is where they will inject contrast into the fluid in Isaac’s spine so the CT will show defined pictures of the bones as well as the fluid-filled space between the bones in the spine, in hopes to help to pinpoint the cause of this increased rigidity/spasticity that Isaac is showing. 

The Angiogram will look at the blood flow to the suspected affected area of the spine. This will help the doctors determine the best plan of action, should we be faced with another surgery (which we are trying to mentally prepare for). It will be very important for them to know precisely where all of the blood flows that supplies the spine in that area. One of the biggest risks of Isaac’s spine surgeries is negatively affecting the blood flow to the spinal cord while trying to alleviate the problem at hand.

At this point, we are waiting to hear from the CMH to let us know if they are able to squeeze Isaac in sooner than next Thursday (27^th March) for this test to be done. Because we are seeing progressive changes in him, everyone feels that expediting the CT/Myelogram/Angiogram is the prudent thing to do.

With all of the technical stuff out of the way, I’d be lying if I said this wasn’t one of the more challenging things we’ve been faced with. Right now, the uncertainty of what is causing this as well as the uncertainty of what we will find out is difficult. Knowing that as Isaac gets older, this gets harder. He can question now – why do we have to do this? He is so aware of everything that is going on, we do our best to keep everything else very ‘normal’ for him and Eli (we'll let you define normal!).

Eli and his jelly 'stache

We’ll update again when we know when his test is going to be scheduled, assuming we’ll get in sooner than the 27^th. Otherwise, that’s the date we’re scheduled for.

Thanks for all of the thoughts and prayers!