Fever Free!

Isaac has been fever free for well over 24 hours now. Let me back up and tell a bit of this saga. Early last week, Isaac had been doing well on the IV antibiotics and things were looking good. The docs said that once Isaac's IV went bad, then he'd transition to oral antibiotics. I 'think' that happened on Tuesday night. It didn't take long, and then the fevers started to resurface, and began getting worse again.Come Thursday morning, we were met with a rather startling meeting with the docs that spoke of the possibility of the removal of Isaac's hardware (titanium rods in his back). Don't worry, we quickly landed on the fact that Isaac's only current symptom was the fevers and some complaining of his back hurting. The docs came around and agreed (and our main doc was out of town), to leaving things be, going back on IV meds and seeing where the fevers landed. We started the IV antibiotics around lunch on Thursday, and have been fever free for over 24 hours. Yay!

Tomorrow, we hope to meet with our two main doctors that are coordinating care for this current situation, to see how we will proceed to ensure Isaac has the best possible chance at success, so we can avoid any surgical intervention at this point.

We're very happy to have had a very boring couple of days here, because that just means that things are moving in the right direction!

We'll keep ya posted!
Love -

It's the stay that never ends... it goes on and on my friends...

So, Isaac is on day 7 of his stay at CMH. He's still in pretty good spirits, and we try to keep him busy with activities (walks, coloring, painting, etc). And, when all else fails, and episode of Mickey Mouse Clubhouse.

What we do know:
- Isaac had an infection in his blood (Staph A) that has been controlled by IV antibiotics, and has now been switched to oral meds.
- Isaac is continuing to run fevers, of which we cannot come up with an obvious cause.

So, those pesky fevers - why are we having to stay? Many people are interested in what's the big deal if we're on antibiotics and are on the perceived right track. Here's the deal:

1. Staph A lives on 30% of the populations' skin. He was at an increased risk for this since he has had an infection previously w/ the same bacteria.

2. We've drawn blood/fluid from around the incision site for his rod lengthening, but those are coming back negative for any infection. This could be because he's already been on antibiotics OR because there really is no infection/abscess there. The main issue now, is that if there is a deep seeded infection,and we are discharged, then there is a possibility that if there is a small abscess there, that it could spread to the hardware, and then Isaac would be up a serious creek. At that point. we'd have to take out the hardware for a significant period of time, and he does not have enough stability to not have the hardware in. So, this is the crux of why it is imperative we find out the cause of the infection and treat it.


Isaac has had cards made by his classmates, pictures sent to him, and visits from friends & family. He wouldn't be in such good spirits w/o your holiday cheer. Please keep them coming!

Love -

Infectious

I think infectious is a great word to describe Isaac. He had an infectious laugh,  smile,  love, and the list goes on and on.

I know, I know. Everyone wants to know how Isaac is doing.  Everyone wants him to be well.  Trust me,  we are first in line on that train. However, we are still at a point that we don't know what caused the infection, as all cultures are coming back with no growth. The Infectious Disease docs were highly suspicious that it came from his most recent some surgery,  but all results from that area coming back as negative. His kidneys & bladder are also negative.

We also know that all blood cultures he had had since the initial ones have stayed negative as well.  At issue is that he is still spiking fevers every so often.  We will be here for another couple of days to ensure we have the fever truly under control.

He is in pretty good spirits around here.  Hopefully he can keep that up for another day or two & we can be on our way!

Catch up & Current Hospital Stay

I am struggling at where to start for this update. Isaac's blood clot resolved, and we remained on low-molecular weight heparin for some time. In the end, we were most thankful to what we alluded to in that last post - the blood clot prompted many conversations that ultimately led us to believe that at this point in time, the right thing to do for Isaac is to move forward with the rod lengthening, but no further extensive surgery plan to decompress the area. At this point the risks outweigh the benefits, and that's our story, and well, because this post is super late - we stuck to it.

November 6th, Isaac had his rod lengthening surgery. It was by far the quickest surgery, accompanied by the quickest recovery.

Fast forward to November 26th, and Isaac began to complain of stomach pains, and felt like he had a fever. He still had an appetite, so we dismissed it. On Thursday (Thanksgiving), he wasn't himself, still complaining of pain, which is unlike him. By dinnertime, he was trying to be himself, but just couldn't. So I took him to our house, to watch a Mickey Mouse, and get him some Tylenol. We went back over to Ryan's parent's house to pick up Ryan and Eli (they'd stayed there while Isaac and I went to our house). He was again, working really hard at being himself, and did a good job of it! Fooled me. After getting Eli & Ryan, we drove around and looked at Christmas lights, and both boys fell asleep. When we got home, Isaac woke up promptly, and when I had him up in his room, it was very apparent that something was very wrong. He was super hot to the touch, he looked scared, and just kept saying he didn't want to go to the doctor. When I asked him what hurt, he said (with huge teary eyes, "I think there is something broken inside." Break my heart. I asked him what he was scared of, and he said he was scared that he'd have to go to the doctor's and "go in the room where you don't come" - which is the OR. Ryan assured him we wouldn't have to go in there, and he was fine then with having to go to "the doctor." So Isaac and I headed out to CMH.

We got to the ER around 10:30 on Thursday night, and it was quickly determined that he had a high heart rate, respiratory rate and high fever. They drew blood to have cultured as well as sent urine off for culturing too.

Just about 24 hours after that, the blood was already growing bacteria, which usually the results aren't back for closer to 48 hours, which indicated that there was already a decent infection brewing. THey promptly started Isaac on 3 high powered IV antibiotics. There is no infection present in the bladder/kidneys/urine. So, all signs point to the incision from the most recent spine surgery to lengthen the rods. Perplexing so far as the sample that Dr. Schwend took from the surgical site, is not growing any bacteria at this point.

We know there is a chance we may never know the source of the infection. We'll likely have some further imaging done of the spine surgery area to see if they can see anything in there tomorrow (12/1).

So, where we are right now is that we DO know:
- the bacteria present in the blood is MSSA (the 'good' staph infection to have, if you're going to have one)
- this is the same strain of bacteria that was found during his previous infection that he had almost two years ago post surgery
- he is feeling better, but still feverish

We don't know more than that. We are meeting again tomorrow with our doctors to determine the course of action, assuming they've been able to determine for sure where the infection is brewing, and what the course of treatment should be.

Prayers/Thought requests:
1. That we caught this early enough that he won't have to go thru the multiple surgeries like he did when he was infected previously
2. Further - that the hardware (rods in his spine) are not compromised by this.
3. Speedy recovery
4. Peace and grace to understand that we are all doing the best we can with where we are and how we handle it.
5. Prayers for Eli. He's doing good, and has been up to visit Isaac several times. He is handling this the best he can.

Love & Hugs!

 

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!