Tuesday, May 31, 2011

The Party Never Stops - Part 3- Great Strides!

J's recovery was going well enough that last Sunday, we decided to try taking him out for our Great Strides walk.  We decided that if he seemed at all uncomfortable or unhappy we would go home and knew everyone would understand.  

I had been so disappointed that many members of our team had cancelled on me, but was excited to see a lot of surprise supporters when we arrived at the walk site.  Jackson enjoyed the pinwheels his Grandpa brought and spent the whole time watching them spin in the wind with a goofy smile on his face.  

It was time for pain meds when we reached the finish line, so we didn't stay for the after-party or to hear the grand totals for our walk.  I found out tonight that the Ft Worth Chapter raised $305,000 this year!  Our national team has raised close to $7,000 so far this year, and will keep working to bring more funding to the CFF for research and patient programs.  When I talk about the programs, it's not just part of the fundraising spiel.  It's personal.  Jackson takes special vitamins that we couldn't get covered under Medicaid because they were considered a supplement rather than a prescribed drug.  Because of these 'patient programs' I'm always talking about he was able to get them.  THe same goes for his high calorie (and high dollar) formula. There are more programs to fund and more that I would like to see grow and be fruitful -(ahem, we should all have a vested interest in more adult care since we are working so hard to extend the lives of our CFers!)  So yes, when I give my speech about why I spend so much time and energy fundraising, it's not just because I don't have a day job.  

In other news, Jackson's first clinic appointment post-G Button surgery is on Friday.  I don't expect to see any huge gains in this short two weeks, especially with all of the quirks of recovery, but I think we will see something.  He looks different somehow already.  His color is better overall, his cheeks flush pink again.  It's impossible to tell if his moodiness before the surgery was just toddler changes or if he was feeling cranky because he was becoming malnourished- but he's his very bubbly, happy, silly self again. (with just a hint of familial opinionation).  

The steri-strips came off of his incision site and as I looked at and touched the fresh scar beneath, I silently bargained with fate.  "Make this worth it."  And now I'm holding my breath for some confirmation that all of this increased energy and vitality isn't in my head.  

And to answer the question at least half of everyone is just too polite to ask: No, I don't wish we had "just gone ahead and done it sooner."  Even if were a downright miraculous solution to the ever-present weight struggle, I do NOT wish we had done it sooner.  I know that I did everything I knew to do and then some and was out of options before I made a decision to permanently (& painfully) alter my child's body.  I'm as ok with it as anyone could be.  

Saturday, May 28, 2011

The Party Never Stops - Part 2- Recovery

The thing that made me the most anxious about Jackson's surgery was the recovery. I worried about the amount of pain he would be in and how it would be managed. I wondered how long it would take him to be comfortably mobile again, whether the pain meds would make him feel nauseous or affect his appetite, whether it would hurt his little belly to eat too much, etc, etc, etc. 2011-05-21 09.07.56

It was easy to manage his pain and movement in the hospital. Between the morphine and innate self protection, he was very still and cautious. I didn't even pick him up until the next day because I figured if he was comfortable, I didn't want to risk hurting him. The morning following surgery he was less than thrilled about getting his breathing treatments, so I decided to hold him like I do at home to see if that would help. Mike gingerly lifted him from the bed and handed him to me and he easily took his treatments. After we had finished and placed him carefully back in his bed, I was shocked to see him clumsily hauling himself up to sitting in his little codeine haze.

By the time we got home that night, he was insisting on standing up and walking again. By Monday morning we had transitioned to plain baby Tylenol (no codeine) and he was crawling on his belly to retrieve toys under his bed.

Each day the site is a little less tender, and after only a week I can freely change the dressing, clean the site, and turn the button (to prevent adhesions during the healing process) without having to restrain little arms and legs from protesting. In another week, he will have his first post-op weigh in, and will be able to take a regular bath again. The latter excites me very much- trying to keep a toddler reasonably clean via sponge bath is a world of challenges in and of itself.

It astounds me how adaptable we are, how quickly our minds and bodies can adjust to extreme changes in such little time. This time last week I was nervously trying to secure carseat restraints over a fresh wound with shaking hands. Since that day I have mastered enteral feeding pumps, the art of checking all components every two hours all night long, the subsequent art of 3am sheet and jammy changes when leaks happen, how to take cover from tornadoes with a child attached to a tube (takes some creativity) and begun to segue into yet another 'new normal'. Jackson has gone from a rambunctious toddler, to a very sore surgical patient, and back to a rambunctious toddler who sometimes pokes at the little nub beneath his onesie.

The experience is no longer looming over us like a black cloud, and there is great relief in that. We weren't able to avoid it, and there are still a few melancholy tears for that. But the time has come, as it always does, to move on. And so now we try to enjoy each moment between the last time we held our breath and the next, both getting and giving all we've got.

Great Strides 2012!

The Party Never Stops- Part 1- Surgery Day

What a week! So much has happened I have to break it down into parts.  I'll start with the day Jackson went in for surgery.2011-05-20 12.38.45

  Friday morning we shuttled Em off to school, threw a few things in our bag, and headed for Cooks.  We signed in and headed up to the surgical waiting room, then to the pre-op room for paperwork and a last minute once-over of the kidlet to make sure he was ready to go under the knife.

We also got to ask all of our questions, and talk to the anesthesiologist.  I was significantly less than thrilled to learn I wouldn't be able to be with Jacks until he was sedated.  They did say they could give him a little bit of inhaled Versed if I thought he would be scared to leave me.  To be honest, he's never shown any stranger anxiety, but he's also never been wheeled away from Mom on a stretcher by strange people in masks.  So for his comfort and my sanity, we chose to have a little pre-sedation chill-out meds.  

When it was time for him to go, we went to a room called "Induction".  ONly one parent was allowed, and I may owe my husband an apology for not even being willing to offer for him to go.  But he seemed to know this was something I needed to do and nodded for me to go.  The room was small, bustling with about 6 other patients, bustling with activity, yet deceptively quiet.  Because CF patients face additional respiratory challenges when undergoing anesthesia, Jackson got an extra breathing treatment while his nasal spray Versed kicked in.  He didn't suddenly get sleepy or limp, but he stayed very calm when his treatment was over.  He has his blanket and his buddy Danger Monkey with him.   

My heart raced when the OR nurse wheeled his little crib-sized gurney in to take him away. The surgeon came to touch base with me, as I watched him my baby wheel away a wave a panic threatened to break.  But as I saw him look up at his nurse and scrunch his nose and shoulders in his favorite flirtatious pose, it swept past, I thanked the surgeon, and went to fill in the anxious family and friends waiting for word.  

The surgery itself takes only about fifteen minutes, a total of close to 45 for sedation and prep.  My husband, brother in law, mother in law and I all sat in the waiting room wondering what people in these rooms did before wifi and cell phone apps.  I recognized several other parents from the induction room and felt a little boost of solidarity as we waited for word on our children.  There was one family that stood out- the ones with no bags, no gadgets, but carrying pained looks and heavy tears.  They weren't here because they planned to be, and I quietly counted my blessings.

After about an hour we were called back to a consultation room and met briefly with our surgeon, who informed us everything had been textbook, as expected, and Jackson would be able to take food by mouth by dinner time, and we would start using the button for overnight feeds by 8 pm.  

It took another hour for us to be called back into the Post Anesthesia Care Unit (PACU). I worried that he was having trouble waking up or having complications. We learned later that they had given him a breathing treatment and CPT and gotten some post-anesthesia mucus out of his lungs, which is very good.  When I saw him he was 'awake', very still and quiet, and with a glassy look in his eye that told me he was feeling no pain.  He had been given morphine for the pain and was comfortable.   Because it's the kind of person I am, I gingerly lifted the sheets and took a look at the button and incision beneath his tiny hospital gown.  I was surprised by how neat and clean the site was.  

Because the day was a wildly busy one at the hospital, it took a few hours to get to our room.  It was also a little strange (even though we have only had one other stay here so far) to be somewhere other than the CF floor.  The nurses weren't familiar with our routines and some of our medications, but to their credit, they went out of their way to ask us to make sure everything was right. This is why I love our hospital and care team!

Sure enough, by dinner time Jacks was ready to eat, in spite of the heavy duty pain meds keeping him comfortable, if sedated.  When Mike brought up a container of fries from the cafeteria, his little hands started to shake as he reached for them.  He devoured half the serving with no nausea or complications and was much happier with a little food in his belly.  Two hours later the nurse showed me how to prep the pump and set up the feeding, and then it was time.  I was intimidated at the idea of grasping the button firmly on either side to steady it, and wondered if I would be able to insert the extension set with the necessary pressure.  Mommy instincts say to be extra gentle with the little guy who's been poked and opened up, but smart mom also knows not to pussyfoot about and make it take longer and be more painful than necessary.  With the right attitude and a good teacher, it was much easier than I thought, and Jackson's first tube feeding was underway.  

Night meds were administered, J fell asleep, and Mike and I made up the sofa-bed we were so familiar with and gladly greeted the end of our very, very long day.

Wednesday, May 18, 2011

T- 36 Hours, and Counting

We met with our surgeon today, and all systems are go. I was quite pleased with his manner of being very informative and still treating us like we were capable of making the right decisions for our son. After a brief rundown of the different ways to perform the procedure and the different types of buttons, we made our decision.

We have opted to go for a traditional incision placement rather than a scope, due to the type of button used and a healing process optimum for our VERY active little guy. The Mini-One Balloon button isn't available to us, but the one we opted for is a lower profile model that is very similar, only it has a rounded plastic anchor rather than a water filled balloon to hold it in place. It is a bit more challenging to insert should it break or become dislodged, but we will be able to move to a Mic-Key or a Mini after the stoma heals in a couple of months.

Surgery is scheduled for Friday, most likely in the morning. Tomorrow the hospital will call with pre-op instructions, such as when to arrive and how long before we come in he should abstain from eating and drinking. If all goes well - and we have every reason to think it will- we will check in on Friday and out on Saturday. Things will be significantly easier without the addition of the Nissen surgery.

I thought I had worked through all of my emotions about this, but was hit with a little wave of unexpected sadness when we left the office today. In spite of all the reasons to do it, and the fact that we are ready to move forward for J's sake and our whole family's- it's still there.

I began to think about how sad it is when your baby goes under anesthesia and you have to leave them alone. I remembered how he cried when he saw me after coming out of his Fentanyl haze after his Bronch. I remembered the woman in the waiting room with us that day who sobbed uncontrollably the whole time we were sitting there and how I couldn't even imagine what her child was there for. I thought of the dozens upon dozens of needle sticks and how impossible it is to get an IV in J and how much he hates being held down. I thought of my dear friend whose daughter recently had her tube placed and how she says it pains her to have it tended to as it heals. I wondered sincerely how we will keep this thing from becoming a tangled, hazardous mess when he roly-polys around in his bed all night. I also thought of how he has now not gained weight for half of his lifetime. I remembered, most of all, that this is what CF is. A constant reminder of pain and mortality in the face of a happy toddler. A fight that is ingrained in who we are but we cannot let wholly define us. A reason to embrace every single minute pleasure we can glean from each other. A horrible thing that has brought people into our lives that I don't want to imagine life without (yes, you!).

And so for a moment, I finally let all of these things wash over me, and decided to share them. Ultimately, this is not about me. But as mama, I must make the call. And I am ready. And I am so grateful to live in a time and a place where things like G-Buttons are available to improve our quality of life, and all the people I connect to are available at the click of a mouse (or touch screen).

Monday, May 16, 2011

Prepping for the G Tube

Last Friday we had our Upper GI Study (aka Barium Swalllow) to determine whether it would benefit Jackson to have an additional procedure during his surgery to correct reflux. The great news is, no reflux was observed, and he doesn't exhibit traditional signs of reflux so we all decided that it wouldn't be prudent at this time to perform an additional operation. 2011-05-15 17.27.01

This morning we met with our CF Clinic team to discuss moving forward with the surgery. Although we understand that there will be some trial and error in finding what works best for Jackson, we have established a tentative plan for his post-op feeding plan. He will eat normally (hopefully) during the day, and will be hooked up to a continuous drip feed while he sleeps. I can't say I'm not a little nervous about his roly-poly sleep habits, and I may be spending a few days with his bed next to mine to make sure he doesn't gator-roll his tubing. That's another one of those things we will have to figure out as we go.

Wednedsay afternoon we will meet our surgeon. He will determine the best way to place the tube, (PEG, Laparoscopic, or Traditional incision type surgery procedure). Then we will schedule the surgery- the sooner the better. There's no reason to wait, we might as well get on with the healing process and ahead of the learning curve. It's possible we could be in surgery before the week is out, which would be my preference. The hospital stay after the surgery, ideally, is only a couple of days. Jackson can be released to go home once we have demonstrated competence with the equipment and J is tolerating feeds.

I am doing all I can to document the procedures and plan to put together an informational documentary- or at the very least slideshow- of our experiences. I also want to go back and explain in more detail what everything means, why we may decide to go one route instead of another, but right now the volume of things happening is greater than the time allowed to relay the information.

Like all facets of CF life, this affects not only Jackson and us, but his older sister as well. She's a worrier and a nurturer by nature and was very concerned about her brother having to have surgery and something put in his body to help him grow. After seeing another CF mom who had a baby doll with a g-tube for her child, I wrote AMT, the company that makes the Mic-Key & the Mini-One G Buttons to see if they would send us one for A doll for Emily. They very quickly and kindly obliged, and we picked out a special doll to be the G-Tube Baby. Em has become much more at ease now that she can manipulate and explore the very same device her brother will have. I have to say, it was also comforting to me to get some hands on time operating one before it's firmly implanted in my child.

I'll do my very best to update as we go, and promise a full recap after the fact. Obviously this isn't a position we would choose to find ourselves in, but as with all the less than ideal situations that can come with CF, I have high hopes our experience may help someone finding themselves where we are. Until there's a cure, or a treatment that makes CF treatable rather than fatal, it's the best we can do.

2011-05-06 15.49.03 Here's to hoping we soon see less of exposed spines, scapulas, sternums, and ribs.

Tuesday, May 3, 2011

You Can't Always Get What You Want...

So maybe it's not the most original title. But cross my heart, I woke up with that song in my head this morning and it won't quite go away. It's a good song. It captures the feeling of bitter melancholy without stopping to wallow in it, and that's exactly what I need to do.IMG_9401

Our CHIP (State insurance) kicked in on May 1. I was waiting to post the celebratory "We survived a month with Cystic FIbrosis without health insurance!" post until the smoke had cleared, because frankly, I don't care to tempt fate these days. We celebrated our little success by visiting the pharmacy to re-stock and leaving a couple hundred dollars in their pockets in our wake.

Yesterday we went to the CF clinic for the first time since our hiatus. I was nervous and oddly, a little excited to see how we had fared on our own.

I knew that it was curtains for us the moment J hit the scale.

How did I not SEE a 1 1/2 pound weight loss? When you only clock in at about 20lbs to begin with...HOW? And although I'm glad the rest of the appointment progressed sort of slowly and gave me time to swallow the lump in my throat, I knew in that moment what the outcome would be. Jackson is getting a G Tube.

I'm pretty good at handling these things without letting my emotions get the best of me now. I know that appointment time is the time to ask questions, not to cry. And so I did. It's always funny to me how you can carry on a whole conversation & your head can be having it's own separate inner dialogue. Mine was "I'm going to be really upset about this once I call the family, run errands, make dinner & get the kids into bed."

Plans were made. I unfortunately had to call Mike at work to break the news to him, but I'm very proud of how he took it. All parents were called & informed. I really feel like I should wait for the news to circulate through the family before posting it here, but with the size of my family that could take half a decade.

I know this is the time to move forward. I know we have done everything humanly possible to avoid this, and I know that if we were to go on any longer without doing it I would feel irresponsible. In the past 7 months we have had only one good weigh in. Weight for length has gone from steady to dropped off the charts. He puts every competetetive eater to shame with his appetite, and yet he still can't meet his needs. It's time. I'm certainly not happy about it...but it's time.

Where do we go from here? First we have to schedule a barium swallow to assess his level of acid reflux. If it's bad enough, they will also perform a procedure called a Nissen Fundoplication. About a week after that we will meet with our team, have a pre-surgical consultation, and schedule the surgery. We'll probably need a day or two inpatient at the hospital. We will learn how to administer feedings and care for the stoma at home, and hopefully be back in our own beds soon.

After that, we will pop open the little beach ball like valve on J's tummy every night and pump in the calories he can't get by mouth. Hopefully he will begin to gain the reserves he needs to stay strong & fight the things he needs to. G tubes are generally very well tolerated and effective, and we should see results pretty quickly. While I can't hypothesize about the long term need for the button, I hold out hope and will do everything possible to try to get him to a state of health where it's not necessary to have.

And finally, yes I'm ok. And yes, it sucks. And no, I don't want to talk about my feelings. But ultimately it doesn't matter how I feel about it because it needs to be done.