There's no place like home!

Short, sweet, and to the point.  Isaac is HOME!!!!  After getting his wound vac taken off, a new dressing put on his incision, and discharge papers filled out, Isaac busted out of CMH at around 11:45a.m. on Thursday, Feb. 28th.

Isaac was pretty stoked to be going home and immediately told mommy to go on to work and that he would play with Eli and Jaime.  He smiled all day and all night (except for the two rather disgusting poops he had!) and was so nice and gentle with Eli it just made both of us smile.

Isaac has no restrictions on what he can and can't do and we are hopeful to get back into a normal routine here shortly.  So, this post will end with photos, cause that is more fun that text anyway right?  Isaac is home!!

Isaac giving Baby medicine this morning at breakfast. 

Throwing a snowball
2.27.2013

Taking the wagon for a wild ride down the ramp...
2.27.2013

Bedtime 2.27.2013
After he was on his tummy (first time since surgery), and sat up - said:
"I can sit up and my back doesn't hurt.
They fixed it!"

My name is Eli

Dear Isaac Admirers,

Hi, my name is Elias, and I just wanted everyone to know that I am doing fine!  No, seriously!  I have had so many people wondering how I was doing throughout my brother's long stay at the hospital that I  have swiped the computer and have decided to do my own update.  It's been awhile since I have been able to do this, so let me tell you a little bit about me.

Name:  Elias
Height: 2 ft 10 inches (but I can dunk on a 4ft rim!)
Weight: 23lbs (lay off people, I am eating okay!  Remember what they say, big things come in small packages)
Reach - 20 inches (in case I want to be a boxer!)
Favorite Color - Today - Blue (not pink!!!)  Usually I love green, purple, yellow, or any other color that makes me look cool.
Favorite animal - Depends on the day, tonight before I went to bed, I told daddy it was elephants.
Favorite food - Pasta right now.  I also love me a good beef taco with guacamole.  No cheese please!  It makes my tummy hurt.  I also have an affinity (yes, I have an awesome vocabulary) for tamales, chicken nuggets, and gorilla cereal.
Favorite person in the whole wide world - Isaac!  I talk about him all the time.  I know people are worried about him, but I called him the other night and he sounded fine to me, so quit worrying people.  I mean, anytime I make him mad, he just grabs me and pulls me down, so obviously he is Superman.   He is my brother, aint nothin happenin to him.
Favorite Activities - Jumping, running, playing with cars, reading my books, and generally doing anything that requires me to move around!  And yes, I do love the snow!  I also do torment Isaac occasionally but it is out of love.

Favorite Parent - Hahahahaha, you thought I was going to answer!
Favorite Word/Phrase - Pimp milk (though I may not say it anymore, I can't decide)
Favorite Train - Percy (hahahahahahahahaha)
Favorite Outing - The train station of course!!!  I also love riding the alligators (elevators) with Isaac and mommy and daddy.


Anyway, that is a little about me for all of you who may have forgotten.  I have been staying with Grandma and Grandpa some while Isaac has been in the hospital.  Gigi and Lisa have also helped take care of me, and of course I can't live without Jaime.

I just want everyone to know I am pulling for Isaac to get better as much as the rest of ya.  I can't wait to get my brother back home.  That way we can play together and mommy and daddy can get some rest!

I am going to add some pics to this post soon, but daddy can't figure out how to add them.  Silly daddy, I already know more about technology than he does.  

All done!

Isaac loves to say, "I all done." Also of note, "I not like this." Both of which we heard this morning, and while it breaks your heart to hear him say it - we were relieved to say, "Yes, you are all done."

We weren't sure what time Isaac was going to make it to the operating room this morning, as at 7am, we hadn't heard whether or not all of the doctors had made their way in to the hospital to meet our originally scheduled time. About 10 minutes later, two nurses from the operating room showed up to escort us down there. We quickly got Isaac his Valium so he would be much more relaxed and at ease. This has proven to work for him, keeps the anxiety levels down for him.

Isaac was delighted to see Dr. S and Buddy in the prep room - true signs that (1) he really likes his doctors and trusts them, and (2) he was under the influence!

Ryan and I were prepared for Dr. S to go ahead and close the incision, or, if things were not looking as healed as he wanted, we would have gone for yet another round. Luckily, Dr. S was impressed with what he saw, and was able to close the incision, after he cleaned it out again. Dr. S truly feels that we are going to be able to continue to treat the infection with long term antibiotics (6 months +). We met with Infectious Disease again, and that was their thought as well. There is dissension between the teams as to how long Isaac should stay on the antibiotic, and this is due to the fact that over time, the risk for the infection to come back decreases, but the only way to know for sure is to stop the antibiotics. From my understanding, an infection can live long term on foreign instruments that are in the body, such as his rods, so that is where the real risk would lie.

As most people know - today was the second round of snow storms we received in the last week. The first of which was on Thursday (which was surgery day #3), and then today. Both of these surgeries/procedures would have been bumped, had we not been inpatient at CMH, due to weather. We were one of only 9 scheduled OR cases today, and Dr S's only OR case.

God knows what he is doing - and reminds us of that. We had the option of using a long term wound vac and going home after surgery #2, but after all of the discussions, it was in Isaac's best interest to proceed the way we did. By staying here, he received all of the treatments he did, and will get to go home with no tubes, no drain, no wound vac, no nuthin!

If all goes as planned, we will be home on Thursday evening. We can't wait! - Actually, when Isaac woke up from anesthesia, and his subsequent nap, he asked (in his squeaky post op voice), "my back all better, we take this out (points to IV), take this off (points to O2 sensor), get in my car, go to Iz's house, and play with Eli."

Melt.my.heart.

Third (or fourth) time's a charm..

Isaac had his third surgery of his all-inclusive stay at CMH Thursday morning. Is was the same song, third verse, a little bit louder, but not worse! Actually, Dr. S was able to partially close the wound, leaving a smaller portion of the incision open. He estimates that the incision was about 10cm initially (don't you love the metric system?), and after he sutured up the upper portion, he thinks that left about 4-5cm that hasn't been closed.

The light up toy that Eli picked out for Isaac with Gigi and Lisa

The thought process was collaborative with all of us. We arrived at an option that we all feel is the very best for Isaac. Instead of closing the wound, and leaving a significant amount of dead space beneath the surface, we redid the wound VAC (3rd time), and will plan on yet one more surgery (1st case on the OR schedule for Tuesday morning), at which time Dr. S will plan to go ahead and close the wound at that point. This will allow the deep tissue to continue to generate and repair on its own, and his back heal from the inside out.

He did great and we are so proud of him for being brave. One more to go, little buddy!

Goofy smile

Funny things that Isaac has said, and others not so funny:

When his back starts to hurt, he asks for his "Orange Tyleprofen."

Isaac took a liking to one of the Ortho residents, Dr. B, and calls him Buddy. It was Dr. B that actually treated us in the ER on Valentines day, and that was when Buddy was coined. I was trying to have a conversation with him about Isaac's plan, and Isaac gradually got louder saying, "Buddy.... Buddy.... Buddy" until he was acknowledged. Then Isaac asked him, "Buddy, wanna go find me some ice cube chips?" Which, we then all erupted in laughter. Buddy has been by to see Isaac several times, and Isaac calls him both Buddy, and Dr. B.

Isaac's least favorite part of being at the hospital is his IV, hands down. He calls it his Hy-V, which is going to get confusing when he comes home, because the grocery store we go to is Hy-Vee. :) He absolutely hates to have it flushed, but some of the nurses have figured out several tricks to get him to not get as anxious.

I think that's about it for now! We're enjoying the weekend, and trying to rest up for next week.

Hugs to all!

#2, and no, we're not talking about poop

Isaac just went back for surgery number two of this hospital stay. Dr. S plans to go in and look at the open incision, ensure there is not any more infection, or unhealthy looking tissue, and then will redo the wound VAC. We're anxiously waiting to find out what he has to say after this one. We are still anticipating the next revision being done on Wednesday/Thursday, and being sent home a day or two afterwards.

The last two days have been pretty quiet overall. There have been some fun times, like when daddy decided he needed to enter and exit the room thru the laundry door. There is a half height door, that leads into a tiny vestibule that also has a bag in it for dirty linens, and then a door out into the hall from there. I would only assume this is so that laundry can be collected without bothering the patient and family. (So, why don't we also have trash chutes?) :) Since Ryan's debut trip thru the mini door, many more have followed. Mommy, Gigi, Aunt Lisa, Grandpa, Eli, and I think the list will continue to grow.

We've had a couple of setbacks - and they follow us anytime Isaac has anesthesia. So I guess I lied. I am going to talk about poop. Isaac always gets VERY stacked up (as someone I know would call it!), and we have a heck of a time getting him to go again. In our current situation, we do not have the luxury of time on our hands to let things begin to happen naturally. This is because it historically takes him about 5-6 days to get back on track, and during this stay, he's going back under anesthesia repeatedly within a week period. The other night he looked like the poor kid was going to pop. Our nurse suggested another dose of Miralax. We opted for an enema. We know our kid. He would have required just about a whole bottle of Miralax to get things going before the next surgery! Trust me, things got going, and he had instantaneous relief. He went ahead and ate dinner, which, with Isaac's history is very important that we keep him on track eating. Staying on top of discomfort and pain is very integral to him eating enough.

Today has been one of the tougher days for me. Watching Isaac ask, "Mommy, they not going to touch me?" when nurses and doctors come into the room. Hearing him scream when he sees the syringe that has the sterile water to flush his IV. I think that either seeing the person from Labs come into his room, or seeing the syringe of sterile water are a toss up as to which one causes him the most anxiety. It's hard to hear your child ask you to protect them, and not let "them give me an owie" - when you know the owie is what is going to help your child the most. My mind races to think - what is he going to remember? Is he going to think that mommy and daddy 'let' this happen to him? That we had a choice? Don't get me wrong - there have been great parts to the day, we got to spend lots of quality time and outside of the medical intervention, it was a pretty good day. It's just those parts that will help him the most, suck the most. I truly believe that God is in control, and he knows the bigger picture. Today is just one of those days I am having a really hard time seeing it.

Dr. S and "Buddy" (a resident that Isaac affectionately refers to as Buddy) -  just stopped by. He is out of surgery and is doing well. :) - That makes our hearts happy. We'll post another update with details in a bit.

Love and Hugs-

 

Infectious Isaac

Infectious describes Isaac in many ways, which, when he laughs, it is genuinely infectious! And then you have his lower incision today, which has a very deep infection. Let me bring you up to speed.

Thurs (2/14) - see previous post - spent some time in the ER - went home to sleep.

Friday (2/15)
On Friday, we got to CMH at about 1pm for an expected surgery time of 4pm. Eli went to spend the night with Grandma and Grandpa, and Gigi came up to the hospital to be with Isaac and mommy and daddy. (Pops is in San Francisco, where we heard he was having a lovely time, walking on the pier, hearing live music on the street, enjoying the warm weather... but I digress). :)

Isaac was quite visibly uncomfortable. By Thursday (2/14) night the incision had leaked some, which is what had prompted us to go to the ER. By the time we had arrived for surgery, the incision was puffed up about 2-3cm, and was nothing like I had ever seen before. (I know, I keep saying that, but each day has brought something else). We were just really anxious to get him into surgery, because we knew that was all that was going to make him better. After all of the pre-surgery business, he got some Versed, and once that took effect, he was whisked away into surgery.

We were prepared for everything from a very superficial infection that would basically just need to be cleaned out and sutured back up, to depending on how much infection, the possibility of needing to remove the rods and clamps we'd just had placed a month ago. As time went by when he was in surgery, I think we each got a feeling that this was more than just a superficial infection. Isaac ended up being in surgery for a little over an hour. The infection was indeed deeper than we'd hoped, and had opened up the superficial fascia, which had been sutured up very tightly after the surgery last month. So, Dr. S had to reopen the lower incision, which goes lengthwise from about the middle of his back to just just below the diaper line. Isaac did not have to have the rods and clamps removed, but just about everything short of that. He cleaned out the incision, all the way down to the rods, and instead of suturing him back up, he put a dressing on the wound, called a Wound V.A.C. (or negative pressure wound therapy) to assist with healing. There are many positives to using the Wound V.A.C., but one of the drawbacks is that it is very hard to manage at home. Couple that with the fact that the infection was deep enough that Dr. S anticipates taking Isaac back into the O.R. on Monday, and then again on Wednesday to clean the wound out again each time, and reapply the Wound V.A.C dressing.  This unfortunately means that we are here at CMH for at least a week.

Isaac did have a lot of anxiety once we got settled in his room, and was having difficulties with his breathing. He was retracting and breathing very shallow. He had an x-ray of his chest and abdomen, as he was (and still is) quite distended. It showed some mild atelectasis (small areas of his lungs that are inflating as much as they should), as well as lots of air in his abdomen, but no bowel obstructions, or fluid, or anything else of concern. The nurse put him on some oxygen, and we gave him some pain meds. He eventually settled down, and got a good nights sleep. He ended up doing quite well breathing, and came off of the oxygen during the night.

Saturday (2/16/13):
Isaac has been resting fairly comfortably for most of the day today. It takes a lot of rest for your body to heal, so he slept most of the day, off and on, and then has been very alert from about 4:30 on.  One of the biggest concerns we have right now (7:45pm) for Isaac is that his abdomen is incredibly distended and his stomach area is so huge right now a diaper barely is fitting on our little guy.  We are awaiting Dr. B to come and give a recommendation as to what to do for him.  Our guess is it will involve unfortunately an enema.  But (no pun intended) whatever is best for him is what we will do.

His culture from the wound infection came back positive for staphylococcus aureus (common staff infection - NOT MRSA).  This is a serious infection that will have to be treated with multiple antibiotics for several months.  The biggest concern is that we don't want the infection to contaminate the rods.  That is the reason we will have to do the antibiotics for so long.

Our little guy right now is in some pain, and that makes it hard for us.  But, we obviously hope he will be able to kind of turn the corner here and feel better throughout Sunday.  This healing will then be derailed again Monday when he will have to go back to the operating room again.  This is truly going to be a week of ups and downs.  We will give another update tomorrow as we prepare for surgery #2 of this stay on Monday.

And - Eli did get to spend the day with Grandma and Grandpa. He got to make a trip over to the beautiful metropolis of Manhattan, KS to help celebrate his Aunt Andrea's birthday, and to see his cousins, Tyler, Ian & Patrick. Oh, and of course, Uncle Rusty too! He was SO excited to get to go! He's camping out over at Grandma and Grandpas. They love having him (and Isaac when he's well), and the boys love spending time there too. 

Thanks again for all the support and love you all show us.  We couldn't be doing this without all of you.

Not as we'd expected

We're learning that not all things go as expected. As many know, I'd posted earlier on Facebook that Isaac was back at CMH with an infection in his lower incision. We'd fought off a superficial infection (or so we'd thought) about a couple of weeks ago, followed quickly by a UTI, and then all of the sudden today, there was oozing (gross) out of the lower incision. Because of everything that he has going on, it's hard to pinpoint when one thing started happening versus another. He's had a fever all week, and at one point was up to 104.4 under his arm. UTI? Infected incision? Geez.

So, we called to CMH, spoke with the on call ortho doc, who at Dr. S' instruction brought us in, and the plan was to be admitted and have surgery early in the morning. However, as Dr. S thought thru the whole plan, he decided that the best scenario is to have us spend the night at home (he has another large spine case, and it would be much cleaner to do that one first, and not expose that child to the risk of infection that there would be in the OR if Isaac had his surgery first), and then come back tomorrow for surgery to clean out the incision. They'll only go as far in as they need to determine the depth of the incision. Our prayers are for that to be as superficial as it can be, to keep them from having to go in very far.

We really hate that this is our update, but have to cling tight to knowing that this is all part of a bigger plan.

Happy Valentines Day!