Monday, April 29, 2013

WC Day 29: It’s Always Something…..

Hospital prep again!! Argh….why didn’t I make notes when getting Madison ready a couple of weeks ago?

This time, Chance is going inpatient.  Not sure if you all remember, but he and Abby had an appointment with our GI doctor when Madison was inpatient, and from that appointment, tomorrow’s admission is taking place. After some talk about where we go from here in dealing with Chance’s large bowel dysmotility, it was decided that we need to do Colonic Manometry again, and see exactly where things stand. So at least this admission is a little more “planned”, as if that somehow makes it less stressful, right!?

To do the Colonic Manometry, we need to admit him the day before and do a mega clean out while supporting him with IV fluids. Wednesday morning he will go under anesthesia and they will place the probes needed for the testing. Because anesthesia can slow intestines down, we then need to wait till the following morning (Thursday) before doing the testing. The testing Thursday will take a big chunk of the day, but then we should be discharged and head home.

This testing is not fun from start to finish…..clean outs suck; anesthesia makes Mom worry; laying flat on your back and not being able to get out of bed for the better part of 2 days has it’s issues (although I wouldn’t mind some forced bed rest sometimes); and getting through the testing itself is not pleasant.

I am proud of my son.

This was HIS decision, and he made it even knowing what it means. This will be his third time getting through the testing. He knows the information is invaluable, and that we need it to guide treatment decisions, so he is going into it with a good attitude.

He is a pretty awesome young man.

Now, in other news…..

Madison is continuing to heal like a (piggy) super star!! My mom (who is again saving our butt by being here with the rest of the kiddo’s while I am away) will bring Madison to me Wednesday for her 3 weeks post op check up. This latest dressing allows for us to see more of what is going on there, and as of Saturday, I swear it’s all but healed!! Our other big news on the Madi front is that my amazing daughter learned how to do her own dressing changes, even with some changes that made it a little more complicated, so she was able to go out with her siblings and visit my mom and dad for a few days!! I can and do a whole lot of medical care around here, and mostly with pleasure, but really do not like wound care. Not sure why, but it is one thing that will get to me faster than anything else…LOL. So for Miss Madison to be able to do it herself, just means it’s not all on me, and I like that….a lot!!

Miss Abby is my favorite child right now, with little drama (well the medical kind) and lots of hugs for her tired mom. She completed a painting for Wish Night last week and did an amazing job. We cannot wait to see how it does at the auction. I may have to pay her to keep being drama free for me ;-)

And finally, Michael, my love.

He, like Abby, is mostly drama free, medically speaking. Also like Abby, drama in general still sometimes happens. I still love him though ;-) He took a nice long ride yesterday with friends, and thoroughly enjoyed himself, even if the ride was cut a little short for him due to ostomy appliance issues. A dear friend wrote about the ride on bike forums and said it so well, I am going to quote him here…..

"The old worn out saw about a picture being worth 1000 words would apply to that photo above. I bet there are 1000 people who if they saw that picture would smile from ear to ear. All day. All week.

That's what courage looks like. I could never do that. Michael McNair can. He did. That takes some kind of special spirit to overcome adversity and soldier on. It was 11 months ago that through the large bay windows of Baylor's ICU unit that I looked down on the spot along the Wetland Cells near the Freedman's Town of Joppa, Texas where we were yesterday. Michael was on life support in the worst way, on a breathing machine and in a coma after being hit by a car while riding his bike. Month and a half in a coma. With all the noise of the machines keeping him alive, frankly I thought this day would never come. But it did. The sun never shown brighter. The wind never calmer. The wildflowers in full bloom."

It certainly made me smile from ear to ear…..thanks for sharing this, Ben.

So, a first ride back down to some his old stomping grounds. 

Another first since the accident happened over the weekend.....all three of our children were gone from home, overnight, at the same time, for the first time since last spring (at least). Yes, Michael and I enjoyed some child free time together!! 

Michael saw a new PT on Friday and should be starting some sessions with her soon. He see’s the orthopedic doc on Thursday, and barring anything unforeseen, we should be able to get the needed script from him then, and can get going with this. I have never had to work so hard getting something dealt with as I have this cramping issue with Michael’s shoulders. I am reminded sometimes how much more frustrating adult care is then pediatrics…..and that is sometimes saying an awful lot. I think we finally have something happening though, and will just be happy when it’s a done deal.

Okay…..dinner is waiting for me, so I am going to go eat and then start packing for tomorrow’s admission. As always, thanks for the thoughts and prayers.

Wednesday, April 24, 2013

WC Day 24: Our Guinea “Pig”

Madi Day 2 after surgery

Two weeks ago, Madison had surgery. As I shared here before, she had developed an abscess in her abdomen, around her g-tube (feeding tube) tract, back in September. Three weeks ago it flared again, for the third time, and this time it developed fistulas (small tracts going from the internal abscess to the surface of the skin). That it was reoccurring, and now producing fistula’s meant we were not actually killing off the infection, just calming it down, and our only resort was to do surgery.

The treatment for fistulas is rather barbaric (at least as far as I am concerned). They use a guide wire to locate the path of the fistula, then cut down to the wire……and then leave it open to heal from the inside out. It’s the only foolproof way to ensure the fistula closes, but ugh on open wounds, especially open wounds right by a g-tube site.

My biggest concerns, in no particular order, were 1. Pain….as much pain as the abscess caused, I was understandably concerned that an open incision was going to hurt. 2. Infection…..specifically staph, as the kids are all colonized with it, and it’s something we fight regularly, and it always involves an open wound. And 3. Healing…..because of Madison’s connective tissue issues, healing can be a challenge and always leaves nasty scars and such. I shared these with our surgeon, not totally sure he was taking it all as seriously as I considered it to be.

I was wrong.  He heard me

When the surgeon came to talk to me after the surgery, he shared that with Madison’s special issues in mind, he was trying something new with her. He said it was a product, interestingly enough, made out of pig bladder that was supposed to help healing happen more quickly and he was hopeful it might make a difference for our girl. With that, we were off to our room, where I spent some time trying to figure out what this stuff was. Google “pig bladder wound healing” and there are quite a few articles on it, all of which made it sound pretty stinking promising!! It was originally used on war veterans with wounds that were not healing as they should, and were frequently risking the limbs being salvageable. This “pixie Dust” as one of the soldiers took to calling it, is capable of facilitating the growth of not only skin, but muscle and nerve!! I was kind of excited about the prospect of what this might do for Miss Madison.

The following day I shared with the surgeon that I had read up on this “new” product (it’s actually been around for a little while now) and that I was excited by the prospect. He cautioned that he wasn’t really sure what it was going to be capable of doing, but that he liked the idea of leaving the site alone, and was remaining skeptical on the wound healing part of it till he saw it with his own eyes.

Apparently the company that makes “pixie dust” has been talking to him for some time about trying it, but Madison was the first patient he has had that he thought this might help. As he should have been, he was reserving judgment till he was able to see what it was capable of. With that, I didn’t get my hopes up too high, and we left the hospital with care instructions, and a 6-8 week timeline on healing. We also left with a kid that had essentially no pain at all from the site.

Care instructions really could not have been easier. Twice a day we remove a 3x3 split gauze that’s covered with tagaderm, and then reapply the same. There is no cleaning and no touching of the wound site. There is a thin wound covering that stays in place over the wound and is only removed and replaced when we see the surgeon or his nurse.

At the one week mark, we returned to the surgeon’s office to see how things were going. As soon as our surgeon saw the progress that had already been made, he was clearly impressed and started talking to the rep from the company about some other difficult patients he has. I knew then that it was apparently working better than expected, and was thrilled to hear it!! Looking at the site didn’t do much for me….I did not see it immediately after the surgery, so my ability to compare wasn’t good. But from the doctors response, it was clear a ton of progress had already been made.

What I could see that day made it difficult for me to be able to imagine how this was going to go. The fistula she had went directly into the g-tube tract, so to cut down to it meant we essentially lost one whole side of her g-tube tract. At this first visit, this was still very much the case, so rather than the circle usually there, it looked more like an ice cream cone, with a scoop of ice cream on top. The idea that this was going to somehow heal and leave us with an intact g-tube site was difficult to imagine.

As they did the day of surgery, another application of “pixie dust” was done at this first post surgery visit.

So what is this stuff?? In layman’s terms, it is pig bladder cells (any animal or organ can apparently produce something similar, but pig bladders are apparently cheap, so they are used) that become a matrix that encourages cell growth. It seems to be similar to what we hear is possible with stem cells, and from the reading I have done, it encourages whatever cell growth is needed where it is put. So if it’s muscle, nerves, skin, or all three, these are encouraged to grow where this matrix is introduced. It really is fascinating!!

So today was our second visit to see how things are going.  This time I had something to compare it to, and took a quick look at the picture I had taken last week so I could fully appreciate any progress that had been made. All I can say is WOW!!!!

One short week later she has a clear g-tube tract and there is not even that much healing left to take place going out from the site!!! Things looked so good, we did NOT need to do another application of pixie dust!!

We are TWO weeks out from a surgery that they expected to take 6-8 weeks to heal, and I won’t be shocked if it is almost there by next week. We have had no pain, no infection, and at least at this point, it looks like the healing is going to not only be faster than we could have ever hoped for, but “cleaner” and nicer looking than we could have hoped for!! This stuff really is amazing!!!

And now, our precious daughter will always be known as our guinea pig, or that she has a little piggy in her....LOL

For those that like details:
About MatriStem

MatriStem devices are comprised of naturally-occurring porcine urinary bladder matrix (UBM).  The bladder is harvested and processed to remove the muscle and submucosa tissue layers.  The product is disinfected, packaged, and sterilized via electron beam radiation.  The resulting product is a non-crosslinked, completely resorbable, acellular extracellular matrix scaffold with naturally-occurring collagens, featuring an intact epithelial basement membrane surface and tunica propria surface.


MatriStem contains a collection of proteins arranged in a three-dimensional structure not currently available in synthetic materials.  This ECM scaffold technology is recognized by its bimodal surface characteristics.  The intact basement membrane surface is hypothesized to contribute to epithelial and progenitor cell attachment and proliferation.  The lamina propria surface may be conducive for integration into the wound bed and host connective tissues.


The product completely incorporates into the surrounding tissue during the healing process and leaves new tissue where scar tissue formation is normally expected.  The result is constructively remodeled, site-specific tissue for a variety of medical procedures.

Monday, April 22, 2013

WC Day 22: The Role TV Plays, & Other Stuff

I have a love-hate relationship with TV.

Typically, as soon as Michael leaves in the morning, it’s turned off and isn’t looked at again till evening. Whereas, when he is here, it has to be on all the time…..enough to make me crazy at times.

I honestly have too many other things on my mind most of the time to get the enjoyment, or escape, that TV could provide me. And clearly, I am not one of those people that works/thinks better when there is some kind of background noise going on. It’s one of the greatest hindrances to me writing more…..I need peace and quiet to think, and let’s face it, neither of those two things happen much around here.

This last week has only increased my love-hate relationship with it.

I am grateful for the chance to know what is happening elsewhere, and watched the tragedies in Boston and West unfold, feeling the heartache I know we all did.

At the same time, I was reminded how saturating it can be. We have this insane ability now to be a part of every second of what is going on. It sometimes feels like it’s too much.

It reminded me of last year, immediately following Michael’s accident. I found that I simply could not watch television, and didn’t watch a thing till we were well into rehab. The shows felt frivolous, and the news was often too heavy for me.

Our Houston trips are my other escape. For one week, every other month, I am disconnected from it all…..and I LOVE it. I cherish the time of just not knowing. With no TV readily available, it’s easy to make that escape. I am still connected enough, via FB, etc, that I am going to know if there is something big going on, but for a handful of days, I get to ignore the sometimes overwhelming stream of information coming in.

And I like it.

Boston & West

Our hearts, thoughts and prayers are with everyone affected by these tragedies.

The Writing Challenge FAIL

I could make a handful of excuses, all quite valid, but instead I am going to look at what this challenge has done. I am writing again, feeling it even, and that is ultimately what I was hoping this challenge would provide me. I should have known better than to think I would, or could, manage to write daily. There are just too many distractions around here…..very worthy distractions, mind you, but distractions nonetheless. I am happy to share that my last post was number 100, and that I am feeling like the writers block has lifted. Not to give up on this challenge altogether, I am going to try for the rest of the month to get my one post in a day, but that depends on my family cooperating….LOL.

Madison Update

I want to share more about how my girls healing is coming along, but it’s kind of interesting and deserves it’s own post, so for now, I  just wanted to share that she is doing well and we are pleased with how things are coming along.

Watch for a post in the coming days about how my girl has a little “piggy” in her now ;-)

Wednesday, April 17, 2013

WC Day 16: Prayers for Boston

I have been watching some of the coverage from the tragic events of yesterday in Boston. These kinds of things always hit hard, but somehow they are harder for me now. The heroism is more glaring too though. 

I know this has been shared all over FB, but I also know it made me stop for a moment and find some peace in this tragedy.

Finding the helpers.

We can only watch so much, but I happened to catch one of the trauma surgeons speaking yesterday.  It took me back, and as I watched him answer questions, I thought of Michael’s trauma surgeons, and how incredible these doctors are.

I don’t know about anyone else, but before Michael’s accident I had no idea this specialty existed…..and I was pretty sure I knew just about every specialty that exists, and that we have seen almost all of them. I had, thankfully, never had the need to meet a trauma surgeon before.

All I can say is WOW. These doctors are amazing. They are on the front lines, making life and death decisions, over and over and over again. For more than a month I watched as they came in each day and pondered my husband and what he needed. Determined what tweaks could and should be made, contemplating all the different factors coming into play, and being prepared to make more changes at a moments notice. I had no idea that there was not a herd of specialists dealing with their own area, but that there was ONE doctor who had to know enough about everything to make split second decisions that could mean the difference between someone living and dying.

They are incredible doctors, doing a job I cannot even imagine.

My thoughts and prayers are with the trauma doctors there in Boston. They are with the ICU nurses caring for those critical patients. They are with each and every person that has been touched by the events of yesterday.

Thursday, April 11, 2013

WC Day 11: Surgery Update

She is comfy
While it was a really (really, really) long day, it could not have gone any better!!

So many people have to come together to make something like this go so smoothly. When several go above and beyond, the comfort it provides my soul is pretty amazing.

Our surgeon heard my concerns about Madison’s poor healing and was able to acquire a relatively new, and very exciting product to use in hopes that it would help. It’s previously been used on much larger wounds, but when he approached his supplier with our situation, they agreed that it would be worth a try. We are all anxious to see how this goes, and will have some idea next week when we see our surgeon again for follow up.

They were able to arrange it so that we had our pain specialist handle anesthesia, meaning we had a familiar face this morning, who knows Madison’s history, and even better yet, came here from our hospital in Houston, so she knows our mito protocol inside and out. It was the easiest part of our morning, and that is not always the case.

Our nurses, in pre-op, recovery, and since we have been on the floor, have been awesome.

Several of our friends came by for a visit, and the noise coming from this room; from laughter, to singing; has been something else much of the day.

My mom saved my butt and was able to get Chance and Abby over here this afternoon for an appointment they needed to make it to, and is at the house helping out on that end until Madi & I can get home and relieve her. We could not do all we do without her!!

Madison was a trooper, as always, and showed no fear going into this.

Then the prayers really kicked in……

The area that needed to be excised was more manageable than we could have hoped for!! From what the surgeon tells me, it is a little larger than a quarter, and filled with the “pixie dust” (new product I referred to earlier), and now we just have to wait for it to heal.

Madison tolerated the anesthesia well. She woke up insanely chatty, and it was adorable!! 
She overall looks pretty good….a little strain on her body is showing, but it’s been very manageable……She got some extra fluids via IV, and that always makes her feel better…..and most remarkable…..

She hasn’t had ANY pain all day.

I don’t get it, but I am NOT complaining.

We should be out of here sometime tomorrow morning, and will be so happy to be home. In the meantime….I need sleep!!!

WC Day 10: Our World…..& Surgery

In an ideal world, I would be sleeping right now. In an ideal world, I would not be busy prepping for Madison to have surgery in the morning, and packing for at least a few days inpatient (in order to ensure we are only there for one). In an ideal world, I would not be behind on my posting challenge here.

Ah, to live in an ideal world.

In our world….

I am up, but am hoping to get an hour or two of sleep before we have to head out.  A 3:15 wake up call comes WAY too early. Thankfully the parent beds at Cooks are actually pretty comfy, so I know I will sleep well tomorrow night.

I am trying to think of everything we need to take with us. Packing our clothes and toiletries is a no-brainer, but trying to make sure I have the medical supplies and equipment, some of which we will need, and some that we probably won’t but I need to have with us to be sure, is less straight forward. Very thankfully, we are not inpatient all that regularly, so I am rusty and worried I am forgetting something.

I have just finished updating summaries so I can make sure I can accurately go over Madison’s medication list, allergies, surgeries, etc and so on when we get there in the morning. Ya know, when I am going to be tired and need all the help I can get.

Included were summaries for Chance & Abby too, because they have an appointment with GI tomorrow. I will already be there, so we might as well keep the appointment!!  Besides, we have some stuff to talk to our favorite doctor about that really shouldn’t wait.

I have driven to Ft. Worth 5 times in the last 7 days, and am headed back in the morning.

No less than 6 different doctors on Madison’s team had to be contacted about the surgery tomorrow. Some with questions, and some to just let them know we would be there in case they are needed.

The call with anesthesiology lasted for almost an hour as we went over her history and I answered all their questions.

At the same time, in our world…..

I am grateful to be on the schedule first thing in the morning, even if it means little sleep and early wake up calls. First cases are rarely delayed; we can avoid fasting issues with Madison that otherwise might be a problem; and all are fresh and ready to go. It is always worth it to go this route for us.

I am insanely grateful that we are so seldom inpatient that I have to really think about what it is we need to take.

I am grateful that getting the kids summaries together and updated doesn’t take much time; and that I am able to accurately share the kid’s information because of them.

I am grateful for my mom, and all the help she gives us. If it were not for her, Chance & Abby would not be able to make it to their appointment tomorrow. She will be taking care of the crew at home for me, and I am so thankful!!

I am grateful for the doctors we were seeing the first three times we made the trek to Ft. Worth this last week; and that the other two times were so Chance and I could attend our advisory council meetings, and give back to this hospital that means so much to us.

I am grateful for all 6 of those doctors offices I called today. Each of them took the time to make sure we had what was needed, and to assure me they are there for us.

I am grateful for how thorough anesthesiology was today, and that they take the time to make sure they are safely caring for my child.

Our world…….it may not be “ideal”, but there is still an awful lot to be grateful for!!

Madison is on the schedule for surgery at 7:00am. I am off to finish up and get some sleep. I will update here tomorrow. Love & hugs to all!!

Monday, April 8, 2013

WC Day 8: Moving Past It

I wonder sometimes if you all ever think to yourselves that Michael's accident is mentioned too regularly, that perhaps its time to "move on", or even that I am "milking it" in some way (it's okay if you have), so I thought maybe I should share where I am with it.

I am SO ready for there to be a time when it somehow isn't a part of almost every day, and everything we do.

I am ready for the day when it doesn't somehow enter into conversation regularly; for the day when life events aren't remembered in the BC (before accident) and AC (after accident) mode; for the day when there are not memories I am having to share with Michael because he was unconscious when they happened; for the day when I feel the appropriate amount of concern for the day to day medical stuff here, and not that if it's not "ICU worthy", it's just not that big of a deal; for the day when we get to feel like it isn't necessarily our "defining moment"; and for the day when I am not caught off guard when I feel that catch in my throat as something (anything) triggers an emotional reaction I am not expecting. 

Not because these are all "bad" feelings to have because, Lord knows, they are keeping us grateful. But these things, I feel like, are keeping me from "moving on", what ever moving on is in a case like this.

At the same time, I don't ever want to not share how Michael is, or our story, with those that care or might gain some strength or faith from it; I don't want to ever lose the perspective that getting through this journey has given us; I don't want to forget the memories of what was happening when Michael was unconscious, because there was so much good during that time too; I don't want to ever forget that things could be so much worse, medically speaking, when going through something. Just need to find the balance with it all; I don't want to not be defined by this moment in time....we got through it with optimism, love, and a peace only God could provide, with the help of the amazing "village" we are blessed to be a part of; and I don't even want to not feel the emotions, just maybe not be so caught off guard by them.

How is that for a conundrum!!
PMTRC Spring Fling
Love those faces!!
Trauma is a weird thing. It permeates everything in some way. It took our world, turned it upside down, shook it around, and then dumped us out on the other side. I would have thought the fact that we dumped out on the other side relatively unscathed would have eased some of the emotional impact....and I am sure it has....but apparently there is still a trauma to work through.

Perhaps it's the insecurity that comes when something like this happens. It's like any other worry we all have about our loved ones, the one we keep tucked away because you cannot really live if your worried about someone you love dying. When your faced with one of those fears you have so carefully tucked away, it's difficult to not worry that one of those other ones you've allowed yourself to think only happens "to other people" isn't really something to worry about happening to you. It is, at it's base, facing mortality, really up close and personal.

In talking with the few I have allowed myself to share some of the feelings I am having with, it appears that at least some of these feelings are similar to what they went through when they lost a loved one. On the one hand, I get that "trauma is trauma" and perhaps these are normal (whatever normal is) feelings to have after one.....on the other hand, I did NOT lose Michael, and it bothers me (okay, it pisses me off) that, a) I am having to work my way through this emotional maze, and b) that I am even playing on the same field with others that have lost someone they love. It seems wrong, and even dare I say, presumptuous of me to think I have any right to, for lack of a better word, grieve alongside them.

Maybe these feeling are grieving the loss of innocence, as silly as that sounds. One would think I would have lost all "innocence" a long time ago!! 

The truth is, I don't know. I am working my way through it all as best I can, and having faith that it is going the way it is supposed to. Someday the balance will come. Right? 

The next month or so, as we approach  the one year anniversary of that day, I am anticipating some ups and downs, and more talk about it than anyone probably wants to hear. Forgive me ahead of time please. Skip over it if your ready to move on, and know I completely understand. 

Know though, our gratitude is immeasurable, and pervasive, and I pray, will never, ever lessen. Each moment we have together, every memory made, is priceless....even the difficult ones. 

We are blessed to have you all traveling this journey with us. 

Edited to add:
I realise now that I have written all this out that I am quite possibly projecting my own frustrations with myself onto others, which was not my intent. No one has said a word about how I am, or should be, handling all of this. Logic and emotions don't always go hand in hand, so while logically I know this is an individual journey and there is no right or wrong way to go about it, and that I would never be thinking these things about someone else's journey, emotionally I couldn't help but wonder if you all were as tired of it as I am. I feel better for having said it, for getting it off my chest, but not because it sent a message to someone else, more because it reminded me where I am and where I am headed.

WC Day 7: Defying the Odds

Michael had a CT scan and xrays done on Friday. He is having some issues with his shoulders cramping up, and we are checking to make sure it’s not a nerve issue. The radiologist remembered him and shared that the last time she saw him he was still in a wheelchair and in his c-collar. It’s been a while!!

She went on to share that in her 14 years of doing this she has seen a few with a broken scapula (shoulder blade), but he is the first she has ever seen with both broken. When he shared this with me, it reminded me what I had read about broken scapula’s and I asked him if I had shared why it’s so rare? Unbeknownst to me, it is really tough to break your scapulas, and is almost always associated with a significant blunt force injury. The radiologists don’t see them often because the associated injuries are so severe, not many survive.

Just another reminder of the odds we defied last summer.

Michael said something this weekend I thought illustrated it well…..

He said he sometimes felt like we should be buying a lottery ticket every single day…..and being happy as hell when we didn’t win.

We have already won the best lottery there is to win…


Saturday, April 6, 2013

WC Day 6: Walk for Wishes

9 years ago, my then 11 year old son spent a great deal of time thinking of ways that we could support Make A Wish. Each time we would go to visit the office, he would head straight for Berta’s office and begin sharing his ideas on ways to raise money for this organization that our family loves so much. Some were wild…..just ask Berta…..but others were pretty awesome and had some promise.  Berta was a SAINT for sitting and listening to my boy ramble on, and Michael and I love her for always giving the kids this time to share their ideas and thoughts.

On a particular occasion in 2005, my boy shared that he thought Make A Wish needed to have a walk of their own, not knowing it was something they had already started planning for the following year!! Erin, another precious part of our Make A Wish family, asked Chance to help plan it, and ultimately they chose my boy to be their first Wish Child Ambassador for the event!! I could not have been more proud watching my son speak publicly for the first time in front of hundreds of people the day of the walk. I am not sure there are many things he is more proud of either. It was an awesome day, and we continue to look forward to the walk each year.

We had a lovely morning supporting Make A Wish!!

 Seeing friends....

Walking with friends....

And celebrating our Wish Kids!!!
Wish Kids 2013

We were reminded, yet again, how blessed we are to have these people as family.

Madi Update

Madi meeting R5

We saw the surgeon, Dr. M, this afternoon and I was reminded how much I like him.  He did Abby & Chance’s Nissen Fundoplications and g-tube placements back in 2009, and it is clear why he is so respected by the other doctors at Cooks, and the parents I know who use him. He’s gentle with the kids, very kind, and explains things well. And he takes the bull by the horns and makes plans, even if they are not ideal. But then, when is it ever ideal to be discussing surgery on your child, right?

Dr. M took a look at things, shared that he had seen the pictures we shared with our GI, Dr. O, and had a pretty good idea what we are dealing with.  It’s something he has seen and worked on a couple of other times, which with as many surgeries he does, says a lot about how rare this kind of thing is. At least he has seen it, worked on it, and has apparently been successful repairing it. That gives me some peace.

So, his feeling is that Madison has developed fistula’s coming from somewhere internally to the skin around her g-tube site. Best case scenario, these fistulas are shallow (not going deeply), maybe going from the g-tube tract to the external skin, but it’s impossible to know till he gets in there. At the moment, he was able to clearly see 4 of them, but there could be more down inside the g-tube tract that we cannot see.

I am hoping I can explain the plan without being too graphic…..forgive me ahead of time if I fail, or if your not good about these kinds of things, perhaps jump past this next paragraph!!

Closing fistulas can be a real challenge, and there is really only one remedy for them, and that is to get them to heal from the inside out. What this means for our girl is that, while under anesthesia, they will thread wires into the fistulas to figure out where they go. Once they have the path figured out, they will cut down to the wire, wherever it may be, clean the infection out, and then leave these incisions open to heal from the inside out, however long that takes. Today’s count was four, so at this moment we are preparing for 4 open incisions that we have to try and keep healthy and get healed. They will change her feeding tube (a button type) out for a PEG (long tube) so we can avoid messing with the area of the incisions as much as possible, and hopefully keep the area cleaner.

Madison is handling it all like the rock star she is.

I, on the other hand, am feeling a little stressed about how we keep the staph monster away, and whether her connective tissue issues will impede the healing we need to take place, as quickly as possible. I have no doubt this is what needs to be done, but I would be lying if I said I wasn’t dreading it. Madi and I are both relieved to hear that he feels like he can save her g-tube site, and that while Madison presents him with some unique challenges, this remedy has worked in the past.

We will hear from Dr. M’s scheduler Monday, but he said this is not a long surgery, so it shouldn’t take long to get us on his schedule. I am actually hoping we get it done next week, but it could be the following one. We will be inpatient for at least one night, but we will dictate our stay on how Madison is doing overall.

In other news, the culture is still not really growing anything, so we are NOT on a new antibiotic. I am keeping the faith that this will not backfire, but we will watch her closely through the weekend, and perhaps, if something is going to grow, we will have more information on Monday. I didn’t hear anything on the lab work, so I am assuming all looked okay, but will get more definitive information next week.

Madi is maybe a little punier than usual, but since the pain eased as the abscess drained, she has looked so much better. We are headed out early tomorrow morning for the Walk for Wishes and are looking forward to seeing our MAW family!!

Thank you all for the continued prayers!!

Friday, April 5, 2013

WC Day 5: Slow Cooked Beef Fajitas

As promised, some of our Pinterest favorites......

Slow Cooked Beef Fajitas

Split between 2 bags, seal, mix, lay flat, freeze
Each bag serves 4-6

3 lb beef round steak cut into strips (across the grain)
2 8 oz cans diced tomatoes w/ chiles
1 large onion or 2 small
1 green pepper, cut into strips
1 red pepper, cut into strips
2 tsp cilantro, 2 cloves garlic, minced, 2 tsp chili powder , 2 tsp cumin, salt and pepper to taste
1 jalapeno chopped (optional, obviously not a good toddler choice)

Directions for Bags:
Cook on low 5-6 hours. Scoop with slotted spoon onto corn (or flour) tortillas. Garnish with sour cream, avocado, shredded cheese, pico de galo, etc

This has 5 stars with this family.....highest it can get!! It's SUPER easy, makes two meals at the same time, and tastes amazing!!!

PS.....We see the surgeon with Madi this afternoon and I will update when we get home.
PSS.....Prayers needed today are for clarity and wisdom with the surgeon, and that we can devise a plan; that we get results from the culture and sensitivities before the end of the day so we can start her on the right antibiotic, and don't end up with her uncovered all weekend; and that bloodwork comes back and doesn't show a systemic infection. Thanks friends!!

Thursday, April 4, 2013

WC Day 4: “Accomplished!!” & A Madi Update

 A few weeks back, Madison and I were talking.  Actually, I was sitting on the couch looking at my phone and sighed out loud.  When Madi asked me what was wrong, I shared that I wanted to just sit for a few minutes and veg, but was feeling guilty because I had so much I needed to do.

As we talked, I started ticking off all that I had gotten done that day and the day before. I had made some calls, gotten some laundry done, and as I continued Madison started pumping her fist in the air as she yelled “ACCOMPLISHED!!” after each one I said. By the end of my list, I was doing the fist pump too, and actually feeling a little better about taking the break!!

Granted, we then took it to the silly…..I ate breakfast – ACCOMPLISHED!! I took a shower – ACCOMPLISHED!! Etc and so on. If only it was as silly as it sounds….some days I really do feel like it’s a major accomplishment when I manage to get some of these things done!!

What I came away with though, beyond the realization that sometimes even the small things are big accomplishments, is that I really do feel better, even if I am only just thinking “ACCOMPLISHED!!” in my head. Sometimes I am getting more done than I even realize…..and sometimes I am not, but need to keep cheering myself on.

It really is awesome… should try it!!

Thanks for the prayers for today’s appointment for Madison.  We saw our wonderful GI doctor this afternoon and have a plan of sorts.

He got to see the much improved abscess, that is honestly still pretty gnarly. His feeling is that we have multiple “tracts” that are likely connecting with the g-tube tract and it’s a mess. He’s again concerned we may lose this g-tube site altogether. However, as I shared with him, on our last visit with surgery we were told they almost never lose sites and can do a lot to maintain what we have. We shall see. He took some pictures, and I shared the ones I had taken a few days ago, and he was off to talk with our favorite surgeon to see if we could get her in soon.

We also discussed continuing antibiotic coverage since she is still clearly infected even after a 7 day course of Keflex. Since we got the culture yesterday, we are going to wait for it to grow and get sensitivities before starting our next round….hopefully tomorrow. Hate that we are running into a weekend with this!! Prayers that we get the information needed by tomorrow and can get her back on something ASAP is appreciated.

Finally, he ordered some labs to see if there was any sign that the infection has become systemic at all. I won’t be surprised one way or the other… a child that just doesn’t run fevers anymore, it’s super hard to know. We should have those results by Monday and see where we go from there.

Dr. O jumped right on things, and by the time we made it home I had a message to contact surgery to get her an appointment. I wasn’t sure how long it might take, so was pleasantly surprised when they said Dr. M can see her tomorrow afternoon!!

Ultimately, it appears that surgery will definitely happen, question is whether it will be a total closure of this g-tube site and creating a new one, or somehow getting the area around this one cleared up. Knowing our surgeon, Dr. M, I suspect we will have a plan tomorrow before we leave his office.

Not feeling it totally, but I am going to say it anyway since it might make me feel better about it all…….

(with a less than enthusiastic fist pump)

Stay tuned for the next installment in the g-tube saga……..

Wednesday, April 3, 2013

WC Day 3: Infection and 50,000

Phew....just going to get this in under the wire!!

It’s been a long, dreary, cold day.  Where did spring go? Oh yeah, that’s right, we will hit 80 this weekend. Gotta love Texas weather.

Madison has another abscess around her g-tube tract…her third since September. Not good…not good at all. We spent hours with the pediatrician yesterday. That visit resulted in an urgent call to our GI by our ped, in part because not only was there an ugly abscess, but our girl wasn’t looking good in general. Our ped is not an alarmist and has a lot of medically complex kids, so when she gets concerned, well, I do too.

By this morning I was being asked to bring Madi to Cooks for an ultrasound and possible surgery to drain the abscess, and had started working in that direction before waking her.  When I did, thankfully, the abscess was… do I say this delicately….it was taking care of itself, if you will. With that, another call was made, knowing the ultrasound would be less than revealing, and we were not going to need “help” with draining the abscess after all.  Madi LOOKED better too, so I was feeling a little less concerned than I had been.

A little.

Problem is…she has already been on antibiotics for 6 days and while on them, the abscess continued to grow. We got to where we were yesterday while ON the antibiotics. All possible indications that maybe the antibiotic chosen wasn’t the best one for the infection…..or worse, that perhaps she is becoming resistant to this particular one (our options are already limited because of the mitochondrial disease)…..or (not sure if this is worse or not) there is a chance that the abscess is walled off enough that the oral antibiotics are having a hard time getting to the infection. Regardless of all that, she is due to be done with this course of antibiotics tomorrow and we have obviously not cleared the infection yet. Yes, it’s good that the abscess is draining on its own, but it’s not “all better” quite yet, and I am not sure stopping the antibiotics now is the best thing.

With all of that, we went over today and had a culture of the area done. While not ideal to do while on antibiotics, it might give us some useful information.  It’s probably staph….the kids are all colonized…..but maybe not. We might be able to see if it’s responsive to what she is on, or if there is something more effective.

Tomorrow we will head back over again to see our GI and talk things over. At this point I suspect we need to continue antibiotics for at least a few more days,  but we also need to try and determine why this keeps happening and how we might avoid it in the future. Clearly the infections take a toll on her, so avoiding ones that we can kind of see are going to happen again, well, those need some special attention. Praying for some wisdom for all involved!!

In other news……we officially hit 50,000 hits sometime today!! Thanks to all for reading and hanging in there with me!!

Tuesday, April 2, 2013

WC Day 2: The List

I am a list maker.

At times, I spend more time making the lists than actually working on the things that are listed.

However, without the list, I have no idea what I need to do or when.

The list is never ending and constantly being added to.  Sometimes at an overwhelming rate.

I have tried separating the lists…..medical, household, financial, etc and so on, in hopes of making the individual lists less overwhelming.

I never really feel like I make headway on the lists, even if I actually accomplish quite a bit.

Separated or together, there really is more to do than one person is capable of doing.  There are simply not enough hours in the day.

The lists are beckoning me…..making me tired….making me want to run away….and at the same time, making me want to sit down and start ticking things off the lists. 

I am working hard on LOTS of things, and failing at all of them to some degree.

I need to go…..the lists are calling.

Monday, April 1, 2013

WC Day 1: Ideas

Help!!  If you will……I need ideas on things to write. 

Is there something you have been wondering about and dying to ask but just haven’t had the chance, or maybe even haven’t quite known how to go about asking? Now is your opportunity. 

Is there something about our family you are interested in? An organization we are involved in that you would like to know more about? Questions about Mitochondrial disease or how it affects our kiddo’s? More information about Michael’s accident and the aftermath? Our experience being a medically complex family? Our experience being a wacky, weird family?

I cannot think of anything off limits, although I will (as always) run anything written about the kids by them just to make sure they are okay with the content.

Some ideas for things to write about on my list:

I finally went through all the recipes I have pinned on Pinterest and started making them!!  We are about a month into this experiment and I am happy to say almost all the dishes have been a success. I am contemplating sharing some of our favorites here at our house with all of you. Foody Friday sounds like a possibility!

Some updating on the kids and how they are doing is definitely in order.

Recounting some of the awesome adventures we had last year.  It was a rough year (obviously), but there are some stories and pics to share of the good times too.

Some special needs related posts….need your ideas on this one!! I always said, as I struggled through the process that is being a special needs parent, that it is all worth it if I can share with others and save them from having to go through the same struggles I endured. In some ways I am far enough removed from it all that I have a hard time knowing what I could share that might be helpful, but if there is something you can think of, let me know.

The Challenge

Photo by Madi McNair 2009

It’s time.

Time to get beyond this writer’s block I have and get this blog rolling again. 

We are fast approaching 50,000 hits (318 to go!!); we are closing in on the one year mark since Michael’s accident, and I suspect that will hold some significance (even if I am not totally sure in what ways yet); and, if I am to continue to claim that things are back to “McNair” normal, writing here, sharing our exceptional lives, continuing to document our days is important to that normalcy, for me at least.

I miss this commitment…..miss giving myself permission to come here and write down the things that are rambling around in my head (and sometimes my heart)…..miss sharing the blessing every day is for us.  So much from the last year continues to pop into my head as something I want to document, for me and for the kids, and for anyone else that might feel blessed by it.

So, with that, I am challenging myself.

A post a day for the month of April.

Something….anything…..but writing and sharing and moving onto this next stage of our lives together.

It’s time.

So bear with me. Not sure exactly how this goes, but I am committing myself to it. Please hold me accountable!!

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