Usually, by this point in the year, Non was in her glory. She would get up early in the morning and work tirelessly…baking cookies. She would mix and stir and roll and cut until she had every square inch of her house holding boxes of cookies. I’m not even kidding. She would stuff her freezer with them, hide them in the attic, and store them in closets. All this preparation for the Christmas season. She presented families with plates of cookies for years, as a selfless act of love.

And heaven forbid if each cookie presented to us kids did not have the same amount of sprinkles on it…

This year is rough, I’m not going to lie. I miss her like crazy, and I am not sure how to go about moving without her. I mean, I’m still finding socks stuffed in casserole dishes from our last move!

And, much like my mother, and her mother before her…I love Christmas. I love to decorate. I love the smells. I love the food. I love the traditions.

I have a deep and abiding love for advent wreaths, chocolate Christmas countdown calendars, and snowmen.

This year is different. Everything I own is in storage. We think that we sold the Christmas tree at a yard sale last year, but none of us can truly remember if we did or not. I haven’t bought many Christmas presents, because I don’t know where I’m going to be living. I feel disjointed. And being the somewhat neurotic creature of organization and routine that I am, I then feel guilt. Guilt for not doing the right things or being the right mom…

Anyway, let’s not go there right now…I’ve got bigger fish to fry.

Friday, Jack had a procedure done to see what is going on with his g-tube. He’s been complaining that it hurts a lot, and I’ve had all sorts of trouble replacing it (which is not typical—I’m a super tube changing rock star!).

He wooed the nurses with his long eyelashes and dimpled grin. He took his IV like a champ, while we talked (and only one little tear escaped his eye) about his desire to grow up and be a StormTrooper. We kissed and whispered ”I love you” to each other over and over as the anesthetic took over his body.

Then I barfed in the waiting room (I’m sure you’re all super shocked by that).

Dr. GI came out and sat with me. We talked for a good while. He said his tube looks great. But the rest of his innards are a little wonky. He showed me places on Jack’s esophagus and stomach that have ulcerations (which he biopsied). He also biopsied a lesion in his small intestine. This was totally not at all what either of us expected—but Jack has always been our little enigma. If the answer is to be black or white, Jack will find a way to make it orange.

It’s a talent.

So, we now wait.

And I know, somehow, that in all this waiting—for the move, for the results, for my life to get back to “normal”—I am learning to be more faithful, more patient, more humble.

But, dang…it’s hard.

Today was our quarterly “meeting” with Dr. GI. Since the last visit, Jack’s been on the high calorie formula and tolerating it mostly well. However, he was also placed on the palliative care since the last visit, so I had to tell him all that.

(which, to tell you the truth, does not get easier over time…)

He’s gained a whopping 4 ounces.

We talked food, feeding, and football (we didn’t talk football,  but I needed another f word to counteract the one I’m about to tell you I dropped). He wants to try feeding therapy again (even though we got kicked out, AND the kid is still aspirating. You know, because he wants to feel like he’s doing something.) He talked to Jack about eating and Jack told him he likes circle crackers (Ritz) and plain toast. Which is sort of the extent of his diet at this point.

I mentioned that I am still  having trouble with the NoNo (g-tube). He tells us it hurts multiple times daily, and changing it requires all hands on deck, and a shot of tequilla (for me). I told him in January that there was something wrong. I called in April to tell him there’s something wrong. In July, I forgot to talk about it because I was too busy worrying about him losing weight.

He listens, and he fills the balloon up with water, and empties it. As if I didn’t do it right or something.

***This is the part of the story where you will read and see things that are not normal for me. I apologize in advance to Non, my Mom and to Jesus***

He tells me to get Jack up on the table.

Jack is no dummy. He has this figured out and yells, “NOT THE NONO!”

There are now 3 adults holding Jack down to take the NoNo out. Just take it out. This is not normal for my kid. He has been through so much, he usually just takes it like a champ, and we move on. It’s not like he’s not had the thing changed a few dozen times over his life.

He gets it out, and says he’s going to change it to a Mini instead of the Mic-Key (funny, right?).

So he starts…and he can’t get it in. He’s mashing on Jack, he’s trying really hard….

“hmmm, I see where this could be a problem, Heather.”

“You think?”

“Hang tight, Buddy…”

“WAHHHHHHHHHHHHHHHHHHHHHHHH!!!!”

“Momma will get you a pony, the police car at Toys ‘R Us, and the Real Death Star if you just hang on…”

“WAHHHHHHHHHHHHHHHHHHHHH! make him stop!”

(mom’s heart breaks…)

At this point, he puts some giant tool down Jack’s stoma to keep it open.

And I lost my ever-loving mind.

Jack is screaming bloody murder. My poor, sweet girl child is sitting in a chair in the corner looking like she may throw up or cry, or both.

“Get Your F-ing Hands OFF OF MY KID UNTIL YOU CAN DRUG HIM OR SOMETHING!”

“Heather, calm down.”

Well, when he said that, I sort of saw like a prism of color, and then someone else took over my body. I remember saying things like, “Fix this mess you made, RIGHT NOW!” and something to the effect of “I KNOW HOW TO GET TO THE  (bleepity bleeping) O.R FROM HERE!”

I guess my break with sanity caused him to pause, because he just up and left the room. I scooped up Jack and he was just broken. He was doing that sob where they literally shake and can’t catch their breaths. I was shaking too, but for other reasons.

In the end, we managed to get the original tube back in.

The plan is to get the Mini company to send their magical introducer (which is the fancy word for a paper clip that you shove inside the feeding tube to make it more rigid, which makes it easier to put in) so the doctor can replace his tube.

I stupidly asked what we would do if he can’t get it changed.

Surgery. They’ll put his tube in a different spot.

(which is when I had another break with reality, because OH MY GOSH why did we just go through all that instead of saying, “Gee, seems like this is a big issue, let’s schedule him for a little change in that site?”)

(Sorry Mom)

Today has brought some very painful things to the surface of our lives. Things that I don’t know how to verbalize appropriately—emotions I didn’t know I had.

The past 2 weeks, Jack has been struggling with his lungs. At first, it was thought to be strep..then pneumonia. Then, no one seemed able to figure anything out.

So, we were sent to see Dr. Lung. With our extensive history, she knows enough now to cut out the small talk and focus on the objective issues at hand.

After looking, listening, and reviewing, she sat down in the corner of her office. Her eyes softened (which I didn’t think was possible).

I knew the words coming forth were going to be things that I didn’t want to remember, but they would be important enough for me to never forget as well.

My anxiety was through the roof….truth be told, it still is.

She explained that there could basically be one of two things going on with my Jackpot. He could be aspirating his own saliva and every little bite of anything that he takes. He could possibly have some underlying condition that is causing his lungs to deteriorate which can be identified by some lab work.

Her true feelings are that this is an aspiration issue. We are trying some new medications to maybe help. One is to dry up his secretions, the other two are for aiding in lung function. She also ordered him a CPT vest. However, the long-term prognosis for his lungs is not good. We will most likely be having a bronchoscopy in early August for her to take a look at the lungs…and if he continues aspirating, he wins a trach. We have a referral for the ENT (the same one who did J’s ear surgery) to see what he thinks about all this.

So, I’m sitting there, sort of floating above my own body, and you know what I kept thinking?

Nothing.

I couldn’t even think. I was completely numb.

We left the office and headed to the lab to get his blood work done. It didn’t go well either. Jack kicked the lab tech. Several others were called in for back up. As I hed his flailing body so hard against my chest, feeling his tears run down my arms, I looked over to where J was sitting. She was trying to hide behind her book, because she, too, was sobbing. She was crying because she couldn’t stand watching her brother hurt.

My head is pounding. My heart is aching.

Yet, I am assured.

No matter what happens I know that Jack has been given a ton of love. I know that J will always be his advocate, friend, and biggest fan. I know that we will never give up hope. I know that this is still all a huge gift. I never asked to for perfection, but I believe that’s what I have.

Jack had his big bad Nissen test on Thursday.

Upon arrival, we were met with the usual—”There’s our man, Jack” and other such greetings. It’s really awesome that he’s so unforgettable, but I’m not a fan of him being Mayor of the hospital.

After we checked in, got his magical bracelet, and shuffled down to radiology, we got put in a room. They wanted me to change Jack in to a hospital gown, which was about as much fun as wrestling an alligator rubbed with Crisco. Once he had been appropriately reprimanded, threatened, and put in time out approximately 98 times, he was ready to start the test.

They loaded Barium Boy with his favorite element. And we watched the screen. Jack actually thought that part was cool. He liked seeing him tummy on TV!

Nothing happened.

We tickled him, rolled him around, bounced him—and then, there was a little regurgitation in to his esophagus. Just not enough to say his Nissen is failing. The radiologist looked at me, looked at Jack, and looked away.

We all knew this was not the news we wanted.

I mean, I wasn’t a huge fan of having him have another major surgery.

But, the fact that his Nissen hasn’t failed means only one thing: he’s aspirating on his own secretions.

He is so talented, dontcha think?!

This is actually really not a good thing.

No parent should have to choose between a decent quality of life or a longer quantity of life for their child.

Non hated–even hate isn’t a strong enough word–Jack’s feeding tube. She would ask me constantly if we could “get rid of that thing” yet.

This would hurt her heart.

It sure hurts mine.

Jack says “truck” by substituting the tr- sound with an f. My niece says “faucet” my making the c sound hard like a ck. And I say reflux, like it’s the worst word ever.

Because, it is.

Jack saw Dr. Lung this morning. His recent testing from last month shows us that he’s probably aspirating more than ever, and also that he’s refluxing. A lot.

Which means that his Nissen probably has given up the ghost.

Which means we have some decisions to make. Decisions that I don’t want to make. Decisions I wouldn’t wish on anyone.

Her big concern is that, not only is he refluxing, but she feels he’s aspirating on just his own saliva. Not good. Really not good.

Thursday, bright and early, we are heading to MoMo. They are going to do an upper GI and a barium study (he’s going to be so happy to eat barium! He just loves that stuff!). If it shows that his Nissen is failing, we have to choose to either re-do it, or let it be. If we let it be, he will probably be forced to only eat pudding thick liquid the rest of his life. If we choose the surgery, there is no guarantee that it will even work….again.

So..that’s where we stand. Today.

Hopefully, I will have a better attitude tomorrow…after some retail therapy. I mean, the kid has to look cute at the hospital!

Yes, we are home.

No, it did not go well.

Are you really surprised?

We arrived at our appointed time, and got checked in. We sat in the waiting room with this other lady who was going to the sleep center—only she had majorly stinky feet, and Jack kept subtly mentioning things like, “STIIIIIIIINKY,” throughout our wait.

We were taken to our specified cave by a legion of trolls. One had red, shiny, patent leather shoes, which I nearly stole a few hours later, to click together and scream “There’s No Place Like HOME!”.

Our appointed troll sent us to our room without any dinner and told me to prepare Jack. This required me to pick him out of the Wagon of Love and place him on the bed. It was tough, indeed!

Troll returned to tell me all about what happens during a sleep study. I must have looked funny to her because she laughed (and I caught her vampire teeth shining in the darkness…should have been the cardinal sign). She calmly went over the procedure, until I stopped her and said, “Troll, that’s not what we’re here for! We’re here for a Titration study to get the settings for our home CPAP.”

She then proceeded to argue with me.

I was less than happy, so I argued back.

She called her supervisor.

Her supervisor, Super Troll, came to talk to me. No, she came to patronize and condescend to me…which totally rubbed me the wrong way…which made me come unglued.

Super Troll told me that she didn’t have “orders” for a titration study, but she would be happy to have one of her licensed Trolls to call Dr. Lung and clarify the order.

I informed Super Troll that I, too, am a licensed (registered nurse) professional…but more importantly, I am Jack’s mother, which gives me veto power.

Super Troll dared to pat my hand and tell me to calm down, not to raise my blood pressure.

Perhaps that was a bit of foreshadowing of what the night was going to offer.

Troll reappeared and informed us all that, Golly-Gee-Yes-Indeedy, Dr. Lung did want the Titration study done, and oh-they-were-so-very-sorry-for-not-believing-me.

Troll made some small talk and left, telling me that she would return to hook Jack up to all the machines.

She returned and began the ugly task of placing glue all over Jack’s now bald head. She also hooked him up to ETCO2 , EKG, and a pulse oximeter.

She handed Jack the CPAP mask and allowed him to play with it. I had him putting it on his face in no time! I knew if they would bugger off, I could get him to do this for me.

Troll then left and told me to get him to relax and go to sleep, and then we would try to put the mask on him. I told her that was a dumb idea, because he would freak out. She ignored me.

So, I figured—let her deal with the wrath.

As soon as the monitor registered that Jack was starting to sleep, Troll returned, put the mask on him, and tightened it up. Jack sat straight up in the bed, screaming bloody murder.

Troll told me to hold him down.

Dude, that’s where I draw the line. The kid was screaming, flailing, ripping lines off left and right…he was shaking worse than if he’d started a seizure. There was no way under the sun that I was holding him down.

She tried her way several more times, to no avail.

By 5 AM, I was cranky, and told her we were going home. She told me by going home before my designated stop time, the doctor wouldn’t get sufficient information. I told her she could call Dr. Lung at that very minute and I’d tell her exactly what I thought of this whole situation.

Troll returned with discharge papers.

We left…the car read 22 degrees when I started it. Jack cried the whole way home “No dark. No stickers. No monsters!”

Why? WHY?

I can’t take much more. Seriously. I can’t handle having only one choice for specialists for Jack (unless of course, I want to drive 4 and a half hours away to Atlanta—which is totally do-able with Jack…sigh.).

I’m tired of health care professionals being afraid to stand up to the physician–for the sake of their patients. Isn’t that part of our oath? To advocate for the patient?

I’m done.

We came home and snuggled down in to our nice warm beds…and today, our neighbor’s decided to have a tree removed from their front yard at 7:30 A.M.

It’s so not my day.

I’m a list maker.

If I leave the house, chances are there is a list involved. Go here, stop by here, pick this up, etc.

So, our impromptu stay at MoMo tonight has thrown me in to super list making mode. However, I still feel like I’m forgetting something…

I’m asking for your help…what else am I forgetting?

ComputerPhone/chargeriPod/headphonesSweatshirtSocksExtra blanketsBunny Milk (Jack has to hold a bottle of strawberry Quik or else he won’t go to sleep)SnacksMedsApplesauceDiapersDependsWipesToys

I’ve just got this horrible feeling that I’m forgetting something major. What is it?

There is a lot that I want to write.

I want to tell you about Jack’s wedding debut.

About how beautiful my bestie, the bride, was (is).

But I can’t, because…

Once again, we have to drag Jack to the hospital! The doctor has known since October that he has central apnea and needs to be on CPAP at night…you know, to save his life?

As is the usual with this particular specialist, she did nothing. She doesn’t even return calls.

Today, she finally did something when we went to her office and got in her “bidness.”

Unfortunately, that means Jack goes to the hospital tomorrow night to trial run his CPAP overnight to get the settings correct. Isn’t it great that I had absolutely nothing else planned for the first Tuesday in January?

This also means, we’re shaving his head again tonight–the first for this year!

Fear not, dear friends, I shall return to tell the tales, as soon as I am done slaying the large dragon that occupies Dr Lung’s body.

Sigh.

(Who wants to stay up all night and talk with me..text? Twitter? Anyone?)

Yeah, so that earlier post—I lied.

Yep, I’ll be the new Internet hoax.

So, shortly after I hit “post,” Jack was complaining about his “no-no.” I looked at it, and it was rather inflammed and oozy and his tummy was all bruised.

Sebi decided that we should call the doctor. The doctor told us to get on our ponies and get to the MoMo, where he would be waiting for us***.

We literally walked in the door, signed consent, and Jack was whisked away. They put him in a room, and (held him down while he was screaming bloody murder) changed his feeding tube, investigated for any internal trauma, and handed him back to me.

Dr. R doesn’t mess around! He also may have mentioned that perhaps Jack should remember this, so he doesn’t do it again. heh.

There ends my day. From that point on, Jack’s been on top of me. I’ll take the love.

*** Interestingly enough, it turns out if the doctor is waiting for you, things move way more quickly than if, say, you are waiting on the doctor.

Sorry for lying. I didn’t mean it! xoxox

At some point, I was hoping that, somehow, our perpetual black cloud would stop hovering over our heads.

I’m often wrong.

Surgery. After a long night of little sleep, we arrived at our appointed time–to sit and wait forever. Jack did well and was easily entertained by a plethora of Wall-E stickers which were bestowed upon him by the Child Life Specialist (who, in my opinion, was way too mouthy. She sat in Jack’s room for, I kid you not, 20 minutes, telling us her life story and the stories of most of the other patients (hello HIPAA?)…she was given grace due to the stickers).

Around 10:30 AM they doped him up with some Versed to get him to the OR. The OR nurses and the Anesthesiologist came to take him from me and he freaked out. This made me happy…which is so wrong, but he hadn’t wanted anything to do with me, and suddenly he knew which side of the bread was buttered, and I was OK with it. Until I wasn’t. And I cried. Because he screamed. All the way to surgery.

Then, the Great Wait began. This is the part I despise. Sitting there. Nothing to do. Worrying. Thinking about the worst case scenario. Sebi had gone for my coffee, and Jack’s other surgeon stopped to talk to me.

Dr. Thorax: “Hey! Is Jack here again?”

Me: “Uh-huh. He’s in with Dr. Ear.”

Dr. Thorax: “I thought that was him….”

Me: “Him who? Dr. Ear, or Jack?”

Dr. Thorax: “Well, he was in the OR next to mine, and I was SURE I heard him screaming…”

Me: “You’re not making this better…”

Dr. Thorax: “Yeah, sorry…well, if you need anything….”

Me: “bye…”

We waited….comforted by the thought of my child screaming for me.

Around 11:42 (give or take a few seconds), they called to tell me he was done and they needed me. I, once again, heard him before I saw him. Only when I saw him, I didn’t know if I should laugh or cry. He was clawing and biting at the nurse, all while screaming “MAMAMAMAMAMAAAAAAAAAAAAAAA!”

I climbed in the bed with him and just held him. He was less than happy—and he hasn’t been since.

Dr. Ear came to talk to me while we were in the post-anesthesia area. He said the surgery went as well as it could have. Unfortunately, Jack had apnea while in the OR and PACU (post-anesthesia care unit)after his tonsils and adenoids were removed. He said that he feels that Jack’s apnea is more a direct link between his brain and his body, than it is from his tonsils/adenoids. Dr. Ear wants to help more on Jack’s case, and he offered to talk with Dr. Lung as well. He said that kids with CP (affecting the child’s mouth/swallowing) usually have trouble with breathing because of the low tone in their throat muscles. This could explain a lot, but at the same time, it doesn’t give anyone much optimism regarding our little man’s swallowing.

Dr. Ear sent us home–partly because he didn’t want Jack in Swine Flu Central, and partly because he has the G-Tube, so we can control what he takes in–even if he doesn’t want to drink his thickened stuff. Jack spent the afternoon drooling all over my chest–because God forbid I move a muscle. He also slept the night that way (I’m slowly regaining the feeling to my extremities).

But that’s OK. I held him. He wanted me. We needed each other.