Let's Do That!!!!

Isaac has spent the last several days regaining strength, and just recovering from his intensive surgery from a week ago. We had been planning on coming home today for the majority of this hospital stay, and for the majority of the day today, we didn't think it was going to happen. We finally got discharged and were home late this evening. In the end - we are just very thankful to all be back under one roof.

Today was spent proving that Isaac can go to the bathroom on his own (and no, that doesn't mean potty trained - it means without a suppository or being catheterized all of the time). For the most part, he proved this, and also showed a much more intense interest in eating. I mean, to the point of hollering for his food. This is the kid who wouldn't eat before. This could have something to do with the fact that they upped his dosage of appetite stimulant, but either way, we'll take it.

Isaac got his dressing off, had some labs drawn, played in the toy room, ate and got checked out by neurology. This final check by neurology was kind of fun. Isaac showed us that he does indeed have some improved neurological function. AMAZING! I love it when Isaac makes the doctors perplexed.

We got everything packed up, and when we finally got Isaac into his wheelchair, he exclaimed "LETS DO THAT!" So we did. And we're at home. Home, sweet home.

Many prayers answered and blessings have been given to us. Love to you all!

Isaac's Recovery - Night 1/Day 2 Post Op

Last night was a loooong night! Isaac essentially did not sleep from about 10pm on surgery day (Jan 15th) until about 10pm last night. He was awake (for the most part) for 24 hours. He talked nonstop. Our topics of the evening were, "If I take a nap, I can have a straw," "Real big pieces of ice," and "She need-a go bye-bye," (generally referring to his nurse, and anyone else that came in the room to come close to him). Gigi stayed the night with us, and made sure that mommy got some sleep. I bet Gigi hasn't pulled an all nighter like that for quite some time!

The latter part of the day yesterday, we had a hard time keeping Isaac's pain under control, as well as the fact that he was pretty overstimulated from all of the activity and people. While he was in the PICU,  the nurses were in on average every 45 minutes, so it's pretty understandable that he didn't get a lot of sleep while he was there. Then, he had a pretty intensive breathing treatment, followed by sitting on the edge of the bed, then was transferred out to the general orthopedic floor, then the nurses would have to come and turn him, and so on and so forth. By the time the evening rolled around, he pretty much in no fewer words told everyone they needed to go home, grandparents included. At one point, while I (Kristi) was here by myself, he told me I needed to go home. Throughout all of this he was experiencing very high heartrate episodes (tachycardia) which was generally 155 - 180bpm's, low oxygen saturations (nothing too alarming, but in the 80's, so they put him back on oxygen - which they took him off of this morning), and the occasional rapid respiratory rate. By about 10pm, his night nurse came in to reposition him, gave him some additional pain meds, it was shortly after that he settled right down, and his heartrate came back down into the 115 - 125bpm range, his oxygen saturations sat at 98%, so all was well. I gave his nurse a huge hug, and shed a few tears. It was the best part of my day to see him resting peacefully.

Through the night Isaac started to swell, which is very common post surgery, although, looking at his little feet, all I could remember is how bad my feet hurt from all of the swelling after my c-section with them. I remember them burning, itching and feeling like if they came into contact with any sharp object, they would rupture! His poor little feet look just about the same way...

As for Eli, his is overall doing very well. However, yesterday, Jaime (the boys most wonderful nanny), let us know that Eli had a very runny nose... So, he will not be up here at CMH any time soon, in hopes that we can let him keep that cold to himself, and not share it with his brother. Other than that, Eli asks if Isaac is coming home to sleep and has had a few other questions. We showed him a picture of Isaac, similar to the one above, and he got a sad face, gave me a big hug, and then asked for more blueberries for dessert. He knows that Isaac is at the hospital to 'fix his back,' and that he's going to be here for a few days. Isaac hasn't asked much at all about Eli, other than asking to go home. I am sure that stems from being under anesthesia and heavy duty painkillers. :)

Eli has also gotten to go on several adventures this week with Jaime and her son Tristan. He was so excited to tell me about his playdate on Tuesday with Delaney. Jaime had sent us pictures of Eli playing with the toy baby carrier, stroller, wearing a Louis Vuitton purse and wearing a pink headband. He was very charming looking!

Today (Day 2, Post Op) - Isaac is resting very comfortably. Ryan got back to the hospital this morning around 7am, and the business began! We had the pain management team, respiratory therapy, physical therapy, and a whole slew of other people that I have no idea of what team they were part of.

Isaac has 'sat' up for about an hour today, although the entire time he was either sleeping or telling us to not talk, or to leave. He has been getting very hung up on wanting a drink of water, and then when we get the cup and straw over to him, saying "water all gone" and crying, without trying to take a drink. He is bound and determined to convince us that "all of the water is at Isaac's house." Poor kid!

Hopefully in the next day or two, he'll get unhooked from his IV's and we can wheel him to the playroom, or to one of his favorite places in the hospital, where he can push the buttons on the wall, and it makes the lights on the ceilings change colors. He also loves the cafeteria, so perhaps we'll make it down there with him one of these mealtimes before we're discharged.

Prayer requests: For Isaac's swelling to reduce, Eli to continue to feel better, Isaac's appetite (as he will be allowed to eat tonight, and we REALLY are pulling for him to have stronger appetite, as we do not want to end up with an NG tube), Isaac's incisions to heal, and for his body to not have any complications with any of the hardware that was used during his surgery.

We also want to sincerely thank our parents and Jaime, as they have really enabled us to care for Isaac as he needs to be cared for, as well as really keeping Eli's schedule as routine as we can. We are very lucky to have the people in our lives that we have. Much love to you all.

Love -

Isaac's Recovery - Day 1 Post Op

Well, we have made it to almost noon here on Day 2.  One night down, and 5 more  to go.  Here is a short update on Isaac's progress following his surgery.

The first night was a long one folks.  For Isaac, and for me (Ryan).  There were people in and out of Isaac's room all night long.  He had 2 different breathing treatments, he had x-rays, antibiotics, hourly temperature checks and every 90 minutes or so he would have to be turned from one side to the other.

Every time it seemed like he or I would get comfortable to get some sleep, someone else would be coming in the door.  Though, I will say, everyone last night was absolutely terrific.

Isaac initially had lost some feeling in his feet and fingers but that appears to be heading back to normal now.  He also had a very high fever for a short period of time last night (over 103) but that was brought under control very quickly as well.  All through the night we talked and he would make eye contact with me (as if he was just checking to be sure I was still sitting next to him, so sweet!).

This morning, all of his doctors made rounds and it has been determined he will be moved from the PICU to a general room for the remainder of his stay.  He has been able to get rid of his nasal cannula and his arterial line.  Both things were very annoying to him so I am very happy to see that he has been able to get a little more comfortable.

So, things are still going well and we are still on track to be able to leave on Monday.  Thanks again for everything and all the support and prayers, Isaac is one tough little man.

Gather your things... He's out of surgery!

We just finished meeting with Dr. S for a post-surgery consultation.

Wow. That is about all I have to say. Our meeting opened with Dr. S telling us that once the rods were placed and straightened, his neurological monitoring improved. Definitely not expected! The goal was to maintain his neurological function, and keep it from getting worse. So, clearly this was amazing news! The thought is that the straightening of his spine has relieved some of the pressure on the spinal cord, which apparently may have been affecting him. We will continue to watch him, however, we know that the way he is made is perfect for Isaac. I (Kristi) still maintain the stance that he will still get around like Isaac does, and likely won't walk unassisted, but we'll just have to wait and see. His pelvis is very discombobulated (the NICU doc's words from when he was born), so we know the likelihood is
low, but we'll definitely continue to let him develop as Isaac does - on his own timeline and to his own ability.

Back to the surgery - we also got to see the x-rays they took of Isaac after they got the rods placed. Another wow. He is likely a half an inch taller! Dr. S was able to straighten out a portion of the kyphosis (hump) in his back, and there is some hope (keep all fingers crossed), that this will help alleviate some of the strain on his stomach, and he will tolerate eating better, and we'll be on the road to recovery from both the surgery and back on track eating wise. Long shot, but it wouldn't be the first time he's surprised us. :)  Isaac will likely be at CMH until Monday will the goal of him gaining as much strength as possible before going home.  The surgery went so well that Isaac only lost about 50cc's of blood (a tablespoon and a half) and thus didn't require a blood transfusion.  He also will not need a breathing tube tonight as he did so well in surgery and going to the recovery room that it is not needed.  It really is amazing how well he did.  Dr. S was relieved to get the rods portion of the surgery done and get him stabilized.  There is now no real timetable for his second surgery, which might be pushed off a bit based on how he does these next few weeks.  Everyone agrees he needs to gain a little weight, and recover fully before proceeding with the next surgery.

We are so thankful for the doctors here at CMH (there were about 12 in the OR for this procedure).  Everyone has been great throughout.

We will update the blog one more time tonight, hopefully with a pic of our little guy and then will update over the next few days as we have any news.

Again, we can't express how much gratitude we have for all of the thoughts and prayers that have been offered up on Isaac's behalf. We feel your presence!

*** Gather your things - one of the staff people in the waiting room would continually call families that their kid's surgery was completed, and basically yell "Isaac's family ....  Gather Your Things..." It's time to go see your child! 

Surgery Update #2

One of our favorite people just came to update us - Dr. S's Nurse Practitioner. Between Dr. S and her, we have never doubted the great hands that Isaac is in.

She let us know that the incisions have been made, and they are placing the screws on the pelvis, and they will secure the rods on his upper ribs with a Zimmer Clamp.

I would 'assume' the shoelace like material will loop around the rib, and then as the picture shows, the clamp will fixate to the rod. The rod will be secured by screws/clamps at the pelvis. 

With this type of rod (of which, he will have one on either side of his spine), he will need lengthening surgeries periodically (likely once a year). We knew that going into the surgery, so we were prepared for that, depending on the type of rod they were going to use. 

He is doing great, and all monitoring is going as best as it can. 

Thank you all again for all of your thoughts and prayers. 

Until the next update - 

Surgery Update #1

Nothing to update other than surgery is going as expected. The Operating Room nurse called us to update, and we asked if they could let us know what part of the procedure was taking place. She responded that from her view, there are is a camera over the field, but the doctors heads were in the way... She did offer to interrupt to find out where they were in the procedure, but we quickly said that wasn't necessary. She did offer to have more of an update for the next call. :) We're all in good spirits, and we certainly appreciate all of your thoughts and prayers!

Until the next update -
 

Pre-Surgery Update

So far, as surgery goes - Isaac got a dose of Versed at about 7:30, and went back to the OR at about 7:45, so we are about 45 minutes to an hour behind schedule. He went back with a smile. Hopefully another update in a couple of hours or so.

 

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 

Phillipians 4:6-7

Say A Quick Prayer

Thank you to everyone who has sent us a kind note, email, text, phone call, etc.  We really appreciate all of the support from everyone.

Isaac's surgery will start early Tuesday morning, and we're hopeful that he'll be out of surgery by mid to late afternoon. We do plan on keeping the blog updated as we receive information, so feel free to check back for updates. We also plan on keeping our gathering at the hospital tomorrow small with our families.

Again, thanks, we will update as soon as we know the outcome or have any other pertinent details.

All we ask for everyone who knows about Isaac to say a quick prayer early Tuesday morning for him to be monitored easily, respond well to surgery, and to lift up his doctors and nurses to take care of Iz to the best of their ability.

Love to everyone -

Spinal Surgery Thoughts and Updates

Isaac had a full MRI and CT Scan back in May, to which the results were what we found to be astounding. Dr. S, his main Orthopedic Surgeon, positioned him in different ways to attempt to detect gross movement in Isaac's spine. We waited and waited on these test results. Finally, we received a call, and the most detailed information that we had was that "There is no gross movement in Isaacs spine. Dr. S is not recommending surgery urgently at this time."

To which we'd internally translated this to mean that Isaac would not need a spinal stabiliation surgery. However, that assumpton was just that, an assumption.

It was the first day of our summer vacation in late June/early July, when we received a call from Dr. S's nurse, letting us know that we'd need to set up a consultation with Neurosurgery and Orthopedics, to discuss the future path for Isaac, and his need for surgery. To say that we were taken aback would be an understatement. For those that have been following Isaac's story from the beginning know that we had been prepared for surgery from the very beginning, but it had always been pushed off. Initially, it was because of weight, then because he was functioning fine, and there were no presenting factors to warrant surgery, and then, after the last course of tests, we thought we'd "made it out of the woods" and were escaping the surgery altogether.

We scheduled our next appointment with Neurology, and Isaac 'performed' for the doctor, and was able to detect hot/cold correctly on his feet 8 out of 10 times. Based on other tests or quizzes the doc gave him, we were told that Isaac would 'likely' have control of his bladder and bowels. HALLELUJA! (Side note - we've had several victories lately in this realm - Isaac asked tonight "I go potty and get a sticker?" - Sure enough, SUCCESS!)

Isaac then had another MRI and CT this fall, and following that, we met with Dr. I from Neurosurgery and Dr. S from Orthopedics, and our course of action was set out before us. We had a very involved "family" meeting with Dr. S and Dr. I, as well as one of Isaac's First Step's providers, Nicole. We learned what we already knew by now. Isaac needed surgery, and it needed to be sooner rather than later. The surgery is now being proposed to be preformed in two steps, rather than one. The first surgery is scheduled to last about 5-6 hours, and involves placing titanium rods on either side of his spine, that will attach to his uppermost rib and down to his pelvis. This is for stabilization, and they will be lengthened each year (which means repeated surgeries). The second surgery, which is currently scheduled for later this spring, and it involves the resection of the spine. This is necessary, as Isaac's spinal column gets very narrow, and makes several turns, and in the same area, his spinal cord is thinned to a few fibers. The goal is for him to maintain the uses that Isaac has today, and to keep him from losing function. It is not out of the realm of possibilities for him to gain functionality, but that is not the goal of the surgery.

So, here we are, the night before surgery number 1. Very thankful, anxious, peaceful, humbled, amazed, prayerful, and many other descriptors.

A Note From Dad

A Note From Dad

It has been quite some time since I have posted to the blog as usually Kristi and I are making a post together or she has found time to write a few by herself (I have no idea how she finds the time, she is amazing that way).  Anyway, I really have been doing a ton of thinking here leading up to Isaac’s surgery on Tuesday and thought writing a blog post of all my random thoughts could be rather therapeutic.  It has been a long road to this point, and I really do believe that we are just now making a turn onto the highway.  And while going faster forward is good, there certainly seem to be more pitfalls to avoid. 

                  Kristi and I made the decision to go ahead with Isaac’s surgery for many different reasons, reasons I am not going to get into on a public blog, but suffice it to say, we had lengthy conversations on this topic, weighed the pros and cons, and ultimately decided this course of action was best for Isaac.  We know it will difficult for him, and I can only imagine the questions he will ultimately have about his condition, but I am confident we will be able to explain to him our rationale and that he will understand (even at this young age) that we are doing what all parties involved believe is the very best for him.

                  I worry about Isaac during surgery, I worry about Isaac after surgery and in the days and weeks he will be in recovery.  I worry about Eli missing his big brother, I worry about Eli and how he will react once Isaac is home.  I worry about my wife, who has done so much through all of this, I worry that she is pulling a heavier load than me, and I desperately want to shoulder more of the burden to help her out.  She needs that, but more importantly, she deserves that.  The number of times that she is able to remember things that need to be done for the boys (outside of their normal schedules) is truly astonishing.  I don’t know how she does it.  I really don’t.  Not only can she do all that, but she continues to plug away at work, sometimes working well into the night to try and get caught up so she can do something for our boys the next day.  I love her, she is inspiring. 

                  I worry about our families, who have been so good to us.  They continue to support us and we will never be able to repay them for this.  Tim, Laine, Roxy, John, Brett, Katie, and Duke have been absolutely awesome.  The number of times they have stepped in and allowed Kristi and I a break is off the charts.  Thank you.  My parents, Kevin and Debbie, who look after the boys whenever we need them too and who have spent countless hours having dinner with us we can never thank you enough.  The boys love the trains by the way!  To my brother and sister-in-law, Russ and Andrea, I am always amazed how you call at just the right time, or have something awesome to say just when we need it.  We sometimes don’t do a great job of keeping people updated, but you guys have always come through and we appreciate that so much.  We have to do better (meaning Kristi and I) of getting out to Manhattan cause we love hanging out at your place and letting the boys play.  To Lisa, you have absolutely terrific to us and we can’t ever say thank you enough.  You come over at a moment’s notice, and routinely spend time with the boys, especially when Kristi would have had to spend the night by herself due to me having soccer or basketball games.  Thank you.  To Dale and Sue and Cassie, you guys have never once waivered when we asked to drop them off so we could go to our church small group.  You have come to our when needed and it is always fun to have you around.  And even though there was a small issue, Colorado was absolutely a blast.  We had so much fun and it was so nice to get out and see you all there, we can’t thank you enough.  

                 To our extended family (and I will forget people here and I apologize) Lynne, Mike, Erica, Carrie, Paula, Monica, Kathy, Cathy J, and anyone else who has helped us through these first 3 years, thank you so much.  Our support network is unbelievable.  To our friends, Jennifer and Kenny, Casey and Abby, Marty and Meg, Cassie and Bryan, Hannah and Paul, Maureen, and anyone else who I am sure I am forgetting, thank you for being around when we either needed someone to talk to, or a fun night or day on the town.  We appreciate you all.  To our small group at church, you guys are invaluable, even though we don’t get there often enough.  We routinely think about you all, including those that aren’t with the group anymore.  Thank you all for helpful prayers, and for just asking, “how are you”?  We really do appreciate that so much.   Like I have said, I am sure I am leaving people out, and I don’t mean to.  

                But I want to finish by thanking our caretakers of Isaac and Eli.  Nicole, you are truly amazing and we are thankful for having you for this journey from the very beginning.  I know Isaac has given you fits, but he wouldn’t be where he is today without you.  To Jaci, you have always been so helpful in getting the equipment Isaac needs and for pushing him to do more.  Thank you for all your help.  To Sherri, thank you for helping with Isaac’s eating issues, we know we are quite done with this problem yet, but hopefully we continue to make progress.  To Amy, I am going to blame you (in a fun way!) for Isaac talking ALL THE TIME.  Thanks, I think!!!  J  To Dana, thanks for assuring us that Isaac can grow on his own curve, we continue to hope he can make strides and you routinely have had the answers that get him going again.  So, thank you so much for that.  And finally, thank you Jaime.  I would guess you didn’t sign up for all of these different complications that come up with Isaac and Elias.  But, you have done so much for them that it would be impossible to recount all the ways you have helped these boys.  We rely so heavily on you and you always come through.  Thank you so much.  We know these next couple of months will be taxing on everyone and we are thankful to have you to help us through them. 

               You know, Isaac and Eli are really amazing little guys.  They give each other hugs, they talk to one another all the time, and they are learning to play together (which is awesome to watch).  But more than that, sometimes I just take a step back and just smile (kinda to myself!) because these are our boys, MY boys, and they absolutely have a daddy who will go to the end of the earth for them.  I want them to have everything (within reason of course).  I want them to dream big, and I want them to always support one another.  I had someone at my school the other day tell me to not worry, the docs know what they are doing.  But I kindly responded it is my job to worry about my boys, and I don’t mind doing that.  No surgery is routine for a 2 ½ year old.  I don’t buy that, but I am confident in our medical team.  I want Isaac to get better, it is that simple.  Our definition of better is probably skewed a bit, but I do think this surgery will make him better.  I am so excited thinking about what the summer will look like in our household.   It is certainly true that Kristi and I have been getting a little more anxious as what we hoped would never have to happen will indeed occur.  However, maybe having this surgery and the subsequent one in February will be a blessing.  It will allow us to know that after it is done, this is our Isaac, and we can help him reach his full potential.  I am sure it will be a tough road, but I am looking forward to their 3^rd birthday and these next few months are hopefully just a speedbump until that party.  

  

Christmas Vacation, Christmas Vacation

We were so fortunate to get to take a quick get away between Christmas and New Year's with the boys and Gigi and Pops. We went out to Winter Park, CO and visited Ryan's Aunt and Uncle (affectionately referred to as Aunt Susie and Uncle Dale by the boys). We took a van and all 6 of us rode out there together. It was really nice to be together, get away for a few days and the boys got to go on "tay-cation" (as Eli referred to it)!

Ryan got to ski with Dale, Sue and Cassie, which was lots of fun for him. Ryan hasn't been skiing in several years, mainly due to the fact that the last time the two of us went skiing, one of us ended up needing an ACL repair, and lets just say it wasn't Ryan. He got to ski two days and traversed blue and black trails all over Winter Park and Mary Jane.  He did not fall one time (which apparently is more than can be said for Dale and Sue!  hehehe).  The weather was beautiful and it wasn't too cold to even take a couple of trips up the Panoramic Express lift to the true top of the mountain.  I've been a bit reluctant to hit up the slopes!

The boys and I bundled up one afternoon with Gigi and played outside in the snow. Much to my surprise, Isaac HATED being out in the cold, and we couldn't get Eli to come back in! Eli kept telling us "My hands wawrm. My hands weally wawrm."

First Trip to the Mountains 

Snow Angel Eli

Flying with Gigi! 

Isaac - much happier inside! 

The last evening we were there, we had an impromptu ladies night out, and went tubing. Yes, you read that right, us daredevils went tubing after dark. It was SO much fun!

Elaine and Kristi

Susan, Elaine, Kristi, Cassie and Emily

We did lots of celebrating while we were there. We had Dale's famous chili to celebrate my birthday, Gigi and Pops took us out to dinner to celebrate their anniversary, and we had a tremendous taco bar to celebrate Cassie's birthday.

We had lots of wonderful food, lots of fun, and so many memories. Family truly is the best, and so glad that we got to spend this time together.