Two days after Christmas, we packed up everything we owned and moved.
To tell you it was fun–well, it wasn’t.
However, in true Hopeful fashion, we’ve had some moments that will make you shake your head.
We have a chicken. Her name was going to be Attila the Hen, but she’s named Betsy…
On the day of the closing, S and I left the kids with P and headed to the lawyer. As we made small talk, she told us that she was really happy we were taking the chicken. (I’m thinking, “what?”). We started signing our lives over to the bank, and after giving us the keys, we were told to hang on for more instructions.
Instructions for what, you ask?
For Betsy the Chicken. We were told how to feed her and care for her and…I kid you not…how to talk her off of the fence so she doesn’t jump.
She’s been a constant source of amusement for all, and apparently she is well-known around the neighborhood (as evidenced by Neighbor 1 saying: “Did you decide to keep Betsy?”). Actually, she is well-known all around our town because when I went to the feed store for her food, the man working asked if I bought the house where Betsy lives.
Who knew I’d inherit a famous chicken?
The house itself is great. I love it. It’s home. We have family here. I couldn’t be more pleased if I tried.
Jack has seen a few of his new doctors.
To say I’m delighted would probably be the understatement of the year! His GI here is a lovely woman doctor…she is gentle, kind, and doesn’t think that I’m crazy! She agreed with the plan to not feed him orally more than what he is doing now as it’s a risk for aspiration. She was just fantastic and I really think she wants the best for all of us.
Today we saw the new pulmonologist–which went a little less wonderfully. Not because I didn’t like the doctor. No! The doctor was a total Rock Star! He and I talked and discussed a TON of stuff. He thinks that to combat Jack’s apnea, we should have him on some oxygen at night (since he won’t tolerate the C-PAP). I couldn’t agree more, but the pulmo in Savannah was not at all for that idea. He would prefer if we didn’t offer Jack anything orally for a while until he can fully assess his airway and how much damage has already been done.
So we’re sitting there, and he decides to do a random pulse oximetry (it measure the amount of oxygen in your blood) on Jack. It was 90. Then it was 87. Then it was 90. Then it was 88. Then I almost passed out because it’s supposed to be 99-100. In the hospital, we like to keep our patients above 92. So this wasn’t awesome.
Jack’s overachieving self earned us a trip to the hospital for chest x-rays. He’s also getting a referral to the cardiologist because Dr. Lung thinks that maybe he could be having some issues there too. You know, because Encyclopedia Jack isn’t thick enough yet. Or something.
We’re also doing another sleep study in a couple of weeks to see if the oxygen will help at night. I’m hoping that we are finally getting to a place where we can keep him comfy and hopefully not do any more damage to these fragile little lungs.
Unfortunately, he did agree that palliative care was our best option.
The only good thing about that is that we get to go to clinic on preemie day so everyone wears masks and no one touches him too much.
J is happy as a little clam. She’s thrilled to be near her cousins! She’s loving being outside all the time. She and the chicken are best friends–so much so that the chicken follows her around and keeps trying to get in the house. J can’t wait for the pool to be ready and to start swim team. She’s growing up–she saved all her money for a year to buy an aquarium. Now that she’s met that goal, she asked to open a bank account so she can save money to buy…a house.
Yep, a house.
“Because, Momma, it’s stupid to rent. You’re throwing money away!”
(My little miser!)
I’ve missed you. xoxo
Janson and I made up this song that we sing when Jack is indescribably unhappy.
PIDouble SDouble SY!
And, it’s kind of fitting that I have had that song in my head since yesterday. Perhaps it also describes my attitude currently. Heh.
Jack had an appointment with Dr. Lung (she’s lucky that I’m still calling her that here because I almost changed her name to another bad word!).
She came in and discussed the fact that Jack didn’t particularly enjoy his last sleep study.
Now, understand, Dr. Lung is of Eastern European descent (with a very strong accent)…she’s at least 6 feet tall, and kinda harsh around the edges.
She reported that Jack still has apnea (shocking, I know! *rolls eyes*)! She asked if I had a mask for him to practice with at home. I informed her that thanks to her prescription, we do breathing treatments several times daily, and he does quite thoroughly enjoy his mask (what I wanted to say was “Yo, lady, he loves the mask, he just doesn’t particularly enjoy having someone sneak a CPAP on him while he’s asleep!”)Because he’s afraid of the mask, right?
She continued on, we talked about the numbers and she said she wanted to do another try at the sleep study so we could try the CPAP again.
I flat out told her no.
She then got a little more ugly. This is the part when my head almost popped off my shoulders and exploded like a firecracker in mid air!
I asked calmly if she had spoken to Dr. P (the neurologist). She stated that a pulse ox overnight would be simply for my benefit, and wouldn’t do much for Jack.
Um…yeah, I know that. 1260-some-odd nights of no more than 4 hours of sleep per night starts to grate on a person!
She said “this is a chronic problem” and I’m just “going to have to relax and sleep!”
My kid stops breathing in his sleep.
What part of that makes one feel relaxed?
So I don’t know what to do now. We live in probably the worst place we could for Jack. There’s one specialist for each area…and no other choices unless you want to drive hours and hours. And I’m being quite literal here. I don’t know if it’s better to circumvent the system and talk to the ENT, or Dr. P, or even the pediatrician? or if it’s better to drive to somewhere else and try a new pulmonologist. I think she’s good at her job, but she has no concept of what parenting one of her patients is. I’m not expecting sympathy, but I most definitely expect empathy.
Stay tuned for the continual adventures of “As the Jack Breathes…or Not!”
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!”
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?
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.
We love October 6!
It’s Jackiversary!The day we got our 4 pound peanut! The day Janson became a big sister, and saw her brother for the first time!
There’s a part of me that thinks of today as Jack’s birthday–even though I know it’s not. I have always gotten him a shirt embroidered with “Jackiversary” on it, and we make a big deal about the day.
There’s a part of me that is tickled pink just thinking about it, and there’s part of me that hurts. Not really for myself, but because there were so many lies, and Jack is the innocent little guy suffering because of it.
On that happy note….
We went to the Dr. Lung to see about the sleep study. Turns out, Jack is an over-achiever! He has sleep apnea. He had 29 respiratory events in the 3 hours he slept(I think he just wanted to give me another reason not to sleep at night). He’s being seen by the ENT about getting his tonsils/adenoids removed tomorrow. The doctor feels that this is part of the problem, but she’s not confident that the surgery will fix the problem. Of. Course. Not. He also apparently doesn’t go into the REM phase of sleep (that’s the part where you actually rest). That could explain a lot. Bless his little heart!
We just got home. I’m fixing frozen pizza for dinner. And we’re celebrating Jack–for who he is today–because he’s perfect in our eyes.
No child (under the age of 30) should have to endure what Jack endured last night. I wouldn’t even subject the dog to that (and we all know how much I love animals currently).
The paperwork said we were to arrive at 7 to the sleep center. We arrived. The door was locked. Yet, there was a sign stating that the sleep center was on the second floor and how to get there. I called the phone number and the girl who answered laughed and said, “oops!” (Strike One)
We were escorted to what appeared to resemble a hotel room. Large bed, recliner, TV. Well, it resembled hotel fare except for the 900 wires and tubes sitting on the bedside table. The tech asked me what time he went to bed, and I explained that he would not sleep unless I medicated him. She looked a bit befuddled, so I figured it was a good a time as any to ask her where I should put his feeding tube set up, since, clearly, there was nowhere to hang it. I got the deer in the headlights look. She said nary a word, and shut the door. 10 minutes later, she returned, and did this:
I am not sure if you can tell or not, but she hung his feed to the curtain rod with oxygen tubing.
After that, she told me to medicate him so she could “get him going.”I did. And she arrived to do this:
He was happy.
But wait, it gets better. She then affixes sticky electrodes to his head, his face, his chest, his neck, and his legs.
I was livid, Jack was crying so hard he started gagging and choking. She kept telling me to try to get him to calm down so she could make sure the electrodes were on right. I begged to be set free. I was cuddling and holding Jack so tight on top of my chest to calm him down—he fell asleep. Go figure!
He was extremely restless. He slept on top of me for a good hour, and woke up doing that pitiful cry they do when they’ve cried themselves out—you know, when they breathe fast and then sigh? She came back in to inform me that he was exhibiting a ton of snoring (because I didn’t notice that while he was ON TOP OF ME!).
By 3 AM, I was done, and so was he. He had gotten maybe 2 hours of sleep. I told her we were leaving. And that’s exactly what we did.
Guess who’s still awake?