Eli Update

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!

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!

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

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

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!

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

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.