To Twinfinity and Beyond

Home Again!

noreply@blogger.com (Unknown) — Wed, 08 Jul 2015 03:32:00 +0000

Isaac made his grand exit from CMH about 48 hours after we arrived. That in and of itself is amazing for what he had done. He got to enjoy the 4th of July here with our families. We had a great time with everyone. We sufficiently tuckered him out and he slept in on Sunday until 9am. Which, if you know our boys, anything after 6:30am is a blessing!

We are now a few days back into our 'normal' routine. Isaac is starting to get around some on his own both in his wheelchair and on the floor. He is now just on Ibuprofen only for pain management. He took a dose last night before bed, and then refused it all day long (and seemed to do alright). We did give him some tonight, as we needed to take his bandages off and redress the incisions after a bath.

He has two incisions that essentially go the length of his back, but there is about a 2 inch space in between the two incisions in the middle of his back, where the skin is intact.

Isaac is now at the age where he is asking a lot of questions about "how did those owies get there?" and so on. Those are hard discussions to have, yet we're being as candid and matter of fact as we can be, and still be age appropriate for him.

We are looking forward to putting this surgery behind us, and getting ready to have fun the rest of the summer before kindergarten starts! Yikes!

Surgery is over!

noreply@blogger.com (Unknown) — Thu, 02 Jul 2015 21:09:00 +0000

We just met with Dr. S and his nurse - surgery went very well. Isaac has his new hardware, and is in recovery. We'll be headed to see him very soon!

Dr. S did let us know that Isaac is very sensitive to the neuro-monitoring. He said that once they notice the monitoring start to fade, they can raise his blood pressure, and it will come back. Other times when this happened during the procedure they gave him a bolus of fluids, which also brought back the monitoring. This is significant, as we noticed about a month ago his legs started to get very spastic. After paying closer attention, he was also showing signs of dehydration. Once we got him full of fluids,t he spasticity diminished. So, my theory at that point has been proven. We'd linked the spasticity to the dehydrattion, and felt that it was a good hypothesis, but this pretty well proved it out (or at least Dr. S said that to make me feel smart!).

Hugs!

Surgery Update for Isaac

noreply@blogger.com (Unknown) — Thu, 02 Jul 2015 18:44:00 +0000

It was fitting as we woke up this morning and realized that it is the 5th anniversary of Isaac's first surgery (was less than 2 months old)! Today, Isaac is undergoing surgery to remove the current growth rods and screws that stabilize his spine and replace all of those things with new rods and screws. There are a couple of reasons for this procedure. First, Isaac has had multiple staph infections and it is believed the infection could be living on the rods or screws. We have been controlling this infection with long-term antibiotics, but he has now been on these medications for almost a year now. The doctors believe we need to try and get him off the antibiotics as soon as we can. Secondly, we are nearing the end of the length of the current rods and he was going to need to have them replaced with longer ones soon anyway. We decided with his doctor that getting this done over the summer, to allow Isaac to be fully recovered and back to 100% before school starts.

Isaac continues to be incredibly brave and strong through all of these procedures (this is surgery 13 we think). This morning, he didn’t cry, just a little quiver of his lip when we had to leave him. He was talking about what he wanted to eat afterwards (request was for Rice Chex!). We have ongoing discussions with him as he asks questions about his surgeries:

“Why don’t you come into the room where you don’t go?”

“How many nights am I going to stay at the hospital?”

“Will I get to stay in the super fun bed?”

“Will you buy me toys at the gift store?”

“What is Dr. Schwend going to do?”

As you can tell - some fun questions, and some questions, not as much fun to answer. But we are always upfront with him and answer honestly.

We hope that Isaac will only be here a couple of days, but we also know that things change, so we’ll roll with it! We have fireworks on standby at the house, and if he is here, we are hoping Crown Center is doing a display and he can watch from a window here at CMH. Thank you to everyone who continues to say prayers for a little guy and give our family strength and encouragement. Our support network is absolutely incredible and we couldn’t be more thankful.

Once Isaac is out of surgery and in his room, we will do another update. Thank you again. Isaac rocks!

Fever Free!

noreply@blogger.com (Unknown) — Sun, 07 Dec 2014 05:25:00 +0000

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...

noreply@blogger.com (Unknown) — Thu, 04 Dec 2014 05:01:00 +0000

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

noreply@blogger.com (Unknown) — Tue, 02 Dec 2014 12:23:00 +0000

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

noreply@blogger.com (Unknown) — Sun, 30 Nov 2014 23:57:00 +0000

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

noreply@blogger.com (Unknown) — Wed, 26 Mar 2014 05:45:00 +0000

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

noreply@blogger.com (Unknown) — Sat, 22 Mar 2014 14:55:00 +0000

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

noreply@blogger.com (Unknown) — Fri, 21 Mar 2014 05:57:00 +0000

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.

noreply@blogger.com (Unknown) — Tue, 18 Mar 2014 18:27:00 +0000

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!

Eli Update

noreply@blogger.com (Unknown) — Tue, 19 Nov 2013 21:00:00 +0000

While brother Isaac (known as IZ by the rest of the family, pronounced like Jay-Z, but I-Z) was in the hospital, Eli was very busy. For those of you that don't know Eli's favorite day of the week is Friday. However, the days of the week in our house go something a little like this: Sunday, Monday, Tuesday, Wednesday, Thursday, TRASH DAY, Saturday. Also, Saturday and Sunday are affectionately called "Mommy and Daddy Days" and the other days of the week are "Jaime Days."

So on Friday (the day after IZ's surgery), Eli was back at our house with Jaime, and we left him a little card to cheer up his day, since we weren't going to get to see him.

He reported that Grandma and Grandpa got him back to the house in time to see the recycle guy and the grass guy (yard waste). He was pretty excited about that. He also got to help Grandma and Grandpa put out their trash on Sunday night, which he was also pretty excited about.

Grandma also spent some time working with Eli on his domestic chores. See video...

Now is where the plot thickens. On Sunday morning, Grandma could tell that Eli didn't feel very well, and was coughing up a storm. Grandma and Grandpa took him to urgent care, where he was diagnosed with Asthma. We weren't overly surprised, as we were told when he was born with all of the treatments he required and with how small he was, he was at risk to develop it. At this point, it may be allergy induced asthma and it may not be. Either way, we have drugs to treat it.

Monday morning, Grandma still thought he didn't sound quite right (go nurse Grandma!), and took him back to our pediatrician. Alas, they decided he has community acquired pneumonia. He got some meds for that, and will be staying at camp Grandma and Grandpa until Wednesday to make sure he's been on antibiotics long enough so we all don't end up sick!

He's hanging in there, and will be better soon. I pray that our lives resume some sort of normalcy (whatever in the heck that means) by the end of the week!

More Hugs-

And we're out!

noreply@blogger.com (Unknown) — Mon, 18 Nov 2013 23:41:00 +0000

Isaac was discharged this morning, and I am so excited to tell you that this hospital stay was pretty uneventful. We have FINALLY figured out a good game plan for post surgery to keep everything moving, so we don't end up like we did in August. I feel like this is a boring post - but am so thankful that there isn't anything else to report for Isaac, other than he seems to be doing well.

We can't say it enough - we truly appreciate your prayers and positive thoughts for Isaac and the rest of our family.

Playing cars at home this afternoon. 11.18.13

Hugs -

And the marathon surgery is over!

noreply@blogger.com (Unknown) — Fri, 15 Nov 2013 00:01:00 +0000

Isaac is in recovery now, and we'll hopefully be reunited with him soon. Dr. S and Val have been by to see us, and we've gotten a chance to see what his spine looks like from his x-rays. Prior to surgery, the kyphosis in his spine was about a 40* curve, and now, with the new rods he is near a neutral position. Not quite straight, but about as close as he can be.

The neuro monitoring they conduct during surgery continued to show sensory signals in his legs, but no motor signals. In January, we had both signals strong at the end of his surgery, and it was the decompression surgery in August that we lost the motor function monitoring, and he had loss of use in his legs following. We will continue to still pray that some of this will continue to come back and he will continue to improve.

We pray that he has a restful night, as this has been a very long day for him. Prayers for him to eat, drink and poop. I am sure he'll want to go on walks tomorrow, so prayers for understanding that he will need to stay in his room (thank goodness for lots of crafts and maybe an episode of Mickey Mouse Clubhouse or two). Prayers that Eli continues to understand where Isaac is, and that we'll all be back under one roof soon. Prayers for the rest of our family, and their health. Prayers for safe travel for our families. Prayers for us to get adequate rest while providing comfort to Isaac and Eli. Thankful for our families and the support network they provide to us. Thankful for Grandma and Grandpa Murdock and our nanny Jaime for taking extra special care of Eli while we're here with Isaac.

This IS Halloween at the Murdock house - our trashmen.

With gratitude for your support, prayers and thoughts -

Surgery Continues

noreply@blogger.com (Unknown) — Thu, 14 Nov 2013 23:13:00 +0000

Isaac is still in surgery (4:45pm). Everything is still going well. Slow and steady wins the race (Dr. S's motto). The rods are going in as planned. They are using titanium rods (we were trying to remember which ones were used in January - we're thinking those were stainless steel). Isaac continues to be stable, and has had minimal blood loss. We are still anticipating him going straight to the floor, as at this point there is no indication of a PICU stay in our future this trip, so that's a plus. We are still following our traditional pattern here in the surgery waiting room - first family in, last family out :).

Dr. I (neuro) stopped by to see us a bit ago, and gave us a quick report on the MRI. The long and short of it is that we are still under the belief that he has a lengthy recovery still ahead of him from the surgery this past August. He continues to make improvements over the long term, so as long as we continue to see improvements over time, we'll take that! They feel the issue is that there is still a bit of pressure or contact to the spinal cord (no impingement, or kink, just isn't floating freely). On a normal person, your spinal cord has fluid all of the way around it. In Isaac, there is a place on his back where his spine is kyphotic, and at that juncture, the spinal cord actually rests on the underlying spinal structure. So if you can follow my muddled description, there isn't an acute problem that needs to be addressed, because there really isn't anything that can be done for that (where the benefits outweigh the risks). We are keeping our fingers crossed that these new rods as they are straightening out his spine a bit more, may relieve some of the underlying pressure, and we'll see some improvement. This is a long shot, but we can hope and pray, right?

No, this isn't halloween. Just a regular evening at the Murdock house.

And in the time it has taken me to type this - we are officially the last family in the waiting room! Go us!

Just waiting to hear that he is in recovery. Hopefully that will be soon.

Love and Hugs -

Out of MRI

noreply@blogger.com (Unknown) — Thu, 14 Nov 2013 20:03:00 +0000

Isaac is out of his 'mid surgery' MRI. They got it started later than they'd initially thought. As of right now, we don't know what the MRI showed (or didn't show). The intent was to get a good picture of his spine since the last surgery with the loss of function he has experienced in his legs. The MRI may give us some answers, and it may not.

We just got the call that they had him back up in the OR, and will be opening the incisions back up (that they used to remove the rods, loops & screws), and put all of his hardware back in.

The only thing that has been done that we weren't expecting is Dr. S ended up deciding to replace all of his hardware. It makes total sense to me. If he was already planning on taking the rods & nylon loops out, it would make total sense to take the screws out that were in to hold the lower parts of the rods in as well. This will alleviate most of our questions and/or concerns about any remaining infection from the ordeal in February. If you don't recall - that was a lovely 2 week all-inclusive stay with 4 or 5 surgical procedures to get that all cleaned up. So, we're actually a bit relieved to know that all hardware that was a part of that infection is out, and new is going to be in. It will be a 'bit' more invasive than originally planned, but not materially.

Isaac is looking at being in surgery another 2-3 hours to get the hardware placed and sutured back up.

Isaac 'flying' in his superhero cape.

Thank you all again for ALL of your support. We've been blessed with so many prayers and support today. Please continue to pray for Isaac and the rest of our family as we work thru the recovery process.

Hugs & Love!

Surgery underway!

noreply@blogger.com (Unknown) — Thu, 14 Nov 2013 17:10:00 +0000

Surgery is underway (as of around 10:30 or so), and is going as expected. We expect another update in another hour and a half or so. He is 'scheduled' to be having his MRI right now.

Another Round for Isaac

noreply@blogger.com (Unknown) — Tue, 12 Nov 2013 04:33:00 +0000

Well, unfortunately, Isaac’s next surgery date is upon us. This will make 8 operations in this calendar year for our little Isaac, but we are hopeful this will be the last one for almost a year. This surgery is on Nov. 14^th and we will be lengthening the rods in his back among other things.

After Isaac’s last surgery, he had lost about 95% of the use he had previously in his legs and has been slowly relearning how to use them. We still don’t know if he will ever regain his old movements like before, but we continue to be hopeful. They had told us to give him 6-9 months of recovery before making any ‘assumptions’ on how much use of his legs he has. We have to keep reminding ourselves of this, and the fact that it has only been a little over 3 months since that surgery.

This surgery will accomplish two things. First, Dr. S & Dr. I will insert chest tubes over the rods that are in his back to hold their position, and they will then remove the rods and leave the tubes in the place. This will allow them to get an MRI without any metal to interfere, so they can get a very good picture of his spinal cord. There is not an MRI in the OR, so they will actually have to close him up to take him to get his MRI, and then bring him back to the OR, reopen the sutures, and then at that time, they will replace the fasteners holding his growth rods on his collarbone with metal hooks instead of the nylon straps that currently hold the rods in place. They will also lengthen the rods slightly to allow for growth.

We are anticipating the surgery lasting 6 to 8 hours and then IZ will be at CMH for 4-5 days before coming home. It is our hope that this will only cause a minor delay in his overall recovery. They will only have to open the upper incision, so his healing time will hopefully be shorter. We remain as hopeful and optimistic as possible.

Thank you to everyone for all the support, prayers, and kind words as Isaac continues this lifelong road of progressing as much as possible. We sincerely appreciate it.

As always, we’ll keep the blog up to date as we receive updates during the procedure, as best we can. Love to you all.

Bedtime Prayers

noreply@blogger.com (Unknown) — Thu, 05 Sep 2013 02:17:00 +0000

Tonight, as we were tucking the boys into bed, we always talk about all of the upcoming events. Whether or not tomorrow is trash day, how many more days until trash day, is it going to be a Jaime day or a Mommy & Daddy day. You know, all of the important things. Tonight, we talked about it was one more day until trash day, and two more days, and Gigi and Pops are going to come for a quick visit before their vacation.

Here is the conversation that ensued:

Isaac: Awr Gigi and Pops going on a 'cation in a big van?
Me: Nope, they're going in an airplane
Eli: Maybe they'll wave to us and we'd see 'em
Isaac: If they wave at us out the window, it might swing their fingers off. Dat wouldn't be good. (Head shakes for emphasis)
Eli: And if they stick their heads out of the window of the plane to see us, it might blow their hairs off.
Isaac: Dat isn't a good idea (head still shaking)
Isaac: Mommy, we still need a say our pwayers
Me: What should we pray for?
Isaac: Ralphie. And Roxy. But Ralphie firwst.
Eli: For all a da people (meaning our entire family - extended too). And Gigi and Pops on their 'acation.

A Dad's Dream

noreply@blogger.com (Unknown) — Fri, 30 Aug 2013 21:55:00 +0000

Long ago I thought about all the things I would get to do as a dad. I thought about all the things my dad did with me. I admired him for all the time he spent with my brother and I (and I still to this day consider my dad to be my hero). Don't get me wrong, I love my mom but as others can attest, there is something special between a father and son.

When I found out I was going to have twin boys, I dreamt big. Days of playing soccer, baseball, and golf danced in my head. Lazy Saturdays watching college football and then playing catch outside. Riding bikes or just running around the house were all things to look forward to. And now? Do I feel like I have been cheated? Nope. Not in the least. It took me awhile to get over the idea that it wasn't fair. It took me awhile to embrace the idea of being a parent of a special needs (which I don't necessarily like that phrase) child. But I am there. I have arrived. I don't think anyone would question the love Kristi and I have for our kids. Isaac and Elias Murdock. Our boys. We love them unconditionally. Today is my 36th birthday. I am thankful for so many things. But at this moment I am most thankful for being given the gift of patience and the gift of an open mind.

Here's why. Below is a poem that was written quite some time ago. But it sums up my experience so far as a dad. I can't wait to see what is next.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

He's got legs... and he knows how to use them!

noreply@blogger.com (Unknown) — Wed, 14 Aug 2013 22:00:00 +0000

Have we ever mentioned that Isaac does things in his own time, in his own way? Because if anyone does things to the beat of their own drum, it's that kid.

When he was just out of surgery, and waking up from anesthesia, Dr. I (neurosurgeon) asked Isaac to move his legs, Isaac couldn't. Then he asked him to move his toes, and Isaac got super frustrated and said "I CAN'T. I DO IT WHEN I GET HOME." We quickly moved on, stayed optimistic and asked the poor kid 9 gagillion more times over the course of his 12 day, all-inclusive stay at CMH, if he could move his legs or his feet. Each time seemed to frustrate him more.

Ryan and I went through lots of emotions processing all of this. On one hand, if we had opted to not do surgery, he would lose function of his legs at some unknown point in time, because it was made clear to us that where the spinal cord was compressed, the bone would eventually grow closed, essentially severing his cord. Ryan was the first to say that we needed to think of it this way - we are no worse of than if we had chosen to not go forward with surgery, either way, there was a chance of this happening (one had the immediate chance (surgery), and the other was 100% chance of it happening, just not knowing when).

Then we brought him home from the hospital - talk about gut wrenching. I set him on the floor to play, and he quickly tried to do his usual crawl to play, and quickly realized that his legs did not work. He let out such a desperation cry - and in such a sad voice 'I can't do it.'

The guilt - oh the guilt. This is something that I did to him by having the surgery. Then the quick move to the thought of we made the decision to move forward to give him the best chance possible at retaining everything he had. I told myself over and over that we couldn't second guess this decision (and really - in retrospect - I honestly still feel that this was done at the most optimum time). Ryan came home from soccer, and then went through many of the same emotions. I'd reminded him of what he'd told me about We've shed tears, had mini melt downs, many hugs, but know that we have to be strong for Isaac.

So take a quick second and think of ALL of those emotions. Then we go to put the boys to bed on Monday night. Isaac had a quick bath to wash the incision, and Eli was taking a shower. I was doing a lotion massage on Isaac's legs, as we'd been shown to do, and all of the sudden - I felt him flex his quads. I yelled for Ryan. I stepped back, and he flexed his legs on his own a few more times, not in reflex to anything. He even flicked his feet a bit! Oh.My.Goodness. We were seeing the hope that Isaac needs to start rebuilding the communication in the motor pathway of his spinal cord. Hope that we'd thought might possibly be lost. Commence tears of joy. Hugs. High-fives! You should have seen the smile on Isaac's face!

We don't know how much he will regain in his legs, if it will be more or less than what he had before. We have him in physical therapy (which he calls exercise class), we'll be working with him multiple times a day, and doing everything in our power to give him the best chances possible to do whatever it is he wants to do! What we do know is that it's going to be a long road for him, and it will be 6-9 months before we know where he 'stands' (no pun intended!), with what motor skills he will have in his legs. But for now - we'll keep our optimism and keep praying!

Thanks for your continued prayers and following our family's journey!

Hugs to everyone!

And... We're Home!

noreply@blogger.com (Unknown) — Tue, 13 Aug 2013 03:40:00 +0000

While I am a bit surprised, based on what we were dealing with just two days ago, we are all under one roof tonight, sleeping in our own beds. We couldn't be more thankful!

Road to Recovery

noreply@blogger.com (Unknown) — Sat, 10 Aug 2013 16:37:00 +0000

Whew. The last few days have been intense! Now that he has been moved out to the floor, no more heavy duty pain meds, and mainly off the IV - he is nothing short of high maintenance! Isaac was moved out to the floor on Sunday afternoon, and started out wonderfully. He ate well, and drank about as well as Isaac drinks. His output however, waned considerably. Which brought us to Tuesday night. His stomach was so incredibly distended, we were all in pain on his behalf. He required quite a bit of intervention to get some relief, and we are still working on that. Last night, Dr. S ordered an indepth xray, which showed a large amount of stool in his bowel. He's had some treatments for relief, but unfortunately while he has been able to rid himself of some of the stool, his poor tummy continues to swell. Isaac has had multiple xrays to try and solve this bowel issue. We will continue to monitor it closely but it is heartbreaking as you can tell he is in obvious pain.

He has done an AMAZING trick - proving that the sensory pathway to his legs is intact. He still cannot move his legs or his feet, so we still are praying that in the days to come he will show some improvement in the motor pathway but for now we are encouraged by his sensation but obviously concerned about the lack of motor ability. One of the offshoots of this problem is without the ability to feel his legs, he has considerable problems sitting up. This means it is difficult for him to be active, which in turn would help his legs. Ultimately this just means he is kind of in a catch 22.

So, to kind of recap, we are now on day 10 in the hospital, the surgery was successful on most fronts, but terribly concerning is the loss of motor skills in his legs and the increasing problems with his bowels, a problem that should have been dissappating by this point, not increasing. The original plan was to go home on Monday, though we actually were hoping for Sunday night. With the GI concerns, that discharge date is certainly up in the air. We can only hope this little guys insides start working properly.

Thank you again for all the support. When we know more we will do another blog post, sorry for the delay on this one!

Elias Steals the Show

noreply@blogger.com (Unknown) — Tue, 06 Aug 2013 03:37:00 +0000

Eli came to visit Isaac last night at CMH, and this was his exciting performance!

Continued Progress

noreply@blogger.com (Unknown) — Sat, 03 Aug 2013 20:44:00 +0000

Let me first start by saying that we continue to be thankful for the care and expertise that we have received. We have been blessed by truly wonderful medical team that we wouldn't trade for the world.

Isaac continues to make progress, and is moving his arms with much precision (read: sucking his thumb and trying to keep his nurses from messing with his IV). The doctors continue to be cautiously optimistic about movement in his legs. He responds to being pinched and poked, but still has not moved them spontaneously on his own. Because of the reactions we have seen, we know that the pathway from his legs to brain are there, which is where the cautious optimism comes into play. If he has those pathways, it is very hopeful that his ability prior to surgery will return. This is where our biggest prayer request is at this point - that wee continue to see marked improvement in his legs. He also needs to continue to eat well and drink so that we keep everyone else happy with his diet too :).

To help facilitate the best and quickest recovery possible, Isaac is still in the PICU. They are able to keep a very close eye on his blood pressure by keeping his arterial line in. They are trying to keep his Mean Arterial Number (MAP, or the bottom number of your blood pressure number) right around 70. The reasoning to keep it elevated is that this will help keep his spinal cord well perfused, which will give it blood flow that it needs to help these neuro connections work. He can't go out to a regular room as long as he still has his ART line, so we will stay in the PICU as long as we need to.

As for Eli, he is doing well. He has had a couple of play dates this past week thanks to our nanny, Jaime; and has made a road trip with his grandparents to go see his cousins. He got to have a slumber party in his room with Pops too! Tonight he is hanging out with Ryan... I think they're headed out to Sporting KC for his first soccer game! I bet he can't wait!

Thanks to all of our friends and families for all of the support you have given us. We can't thank you enough for all of the meals, prayers, thoughts, calls and texts. They mean so much to us!

Hugs from us!