You know, I am not usually up on current events or pop news. I catch bits and pieces of Good Morning, America occasionally between getting children up, moving, and ready for their day. The only reason I know anything else is because A got me a subscription to Us magazine for Christmas. I’m currently still reading April’s first issue.
Yet, I heard about the new fad diet to help brides get skinny for their Big Day. They have a feeding tube inserted through their nose and they carry around their 1000 calories of liquid nutrition for 10 days to lose weight.
Take a deep breath, and absorb that…
Believe me, I am totally against this type of reckless behavior. As a nurse, I can only imagine the detriment this could possibly be doing to multiple systems of the body (and quite frankly, I think the doctor who is willing to do this…ugh!). As a mother, I am irritated that our daughters are being taught, once again, that you cannot be beautiful unless you are pencil thin, with big boobs, and lots of junk in your trunk.
What the news media fails to mention, or remember, is that…
I thank God every single day for the feeding tube diet.
My son survives because of this “wacky” diet. Without that tube giving him the sustenance he needs (plus vitamins and minerals), he would not be walking this earth. He has to sleep in a special bed with the head raised to a specific height. He has to sleep with a plastic tube running from an IV type pump to his stomach. If he rolls over, it pulls on the tube causing pain. If he pulls the tube out…he could damage himself permanently. He receives every medication through his feeding tube. It has to be covered when he plays so that he doesn’t pull it out, and so that nothing foreign could get near it causing infection. He can’t ride many rides at theme parks, because the bar to hold him in would rub his tube. He can’t play like other kids, because he might pull the tube out.
Every pound he loses will take weeks or months for him to regain.
So, sure, it sounds like a great way to shed pounds fast (can you hear my eyes roll?).
Please, put some more stigma on my kid while you’re at it too.
Is this optimal for Jack, no.
Is this the way I pictured my life, no.
When we were faced with having Jack’s tube placed, I agonized. I researched. I cried. I begged God to miraculously touch my son and heal his brain so he could swallow. I sat with speech therapists and cried. I talked to other moms…and cried. And when I held my tiny, 13 pound, 8 month old son when he came back from surgery, I cried. I cried because I knew his life was saved. Even though that was the hardest decision I had ever made.
That was almost 5 years ago.
I thank God for the feeding tube diet, because every day I have to wake up at 4 AM to silence the beeping from that $^%&*&#(* pump, means that I have another day with Jack.
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….”
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.
This whole sleep apnea thing is getting old. I was so much better not knowing…Now, I stare at him wondering when he’s going to stop breathing. When I do think he’s stopped breathing, I touch him, which makes him mad, and he’s then awake with me, which isn’t good (do you see where I’m going with this? Probably not, because I’m incoherent and surviving on coffee and coca cola!)…
Yesterday, he went to see Dr. Ear with Janson. She is OK. Her surgical site hasn’t quite healed properly, so she’s on another month of antibiotics. Jack is having surgery next week. I guess they don’t like to mess with apnea, because he wanted it done as soon as humanly possible (Humanly possible in medicine is usually measured in weeks. Jack, however, appears to be a special case: he gets admitted. Dr. Ear evidently doesn’t trust Jack’s wimpy lungs, so he’s admitting him for 24 hours of observation after the surgery).
I called upon the Schmoopie and the Calvary. The Schmoopie is my oldest and dearest friend–and I really do call her Schmoopie! She has a real name, but I won’t share that, because it’s more fun to call her Schmoopie. Well, Schmoopie has a husband who has to be out of town, so she can’t come to help with the surgery. So, then I called the Calvary (um, my sister in law and nieces…)who are overjoyed (sarcasm?) to drive up here for the third time in a month…it’s times like this where I wish we lived closer to family.
In the midst of all this, someone has thrown down the gauntlet regarding my family. This person has basically spit in our faces. And you know, I try to be really strong. Yet, when someone messes with my kids, I’m the stinking Yeti. I get this Superhuman strength that comes from heaven, I suppose! I just don’t get it. Adoption is such a blessing, and has made us such different people, and I guess there are some that don’t accept the fact that our family is not simply the blood that courses through our veins. And you know what, You Know Who, we win.
I know I have no right complaining. There are so many worse things in the world. Two such things are heavy on my heart right now, so I am going to ask you to send your good thoughts and prayers to 2 people who are really special to me. One is the mother of my other Orlando BFF: she got some unpleasant medical news and is dealing with the fallout. Secondly, is for the mother of my OLD (ha…laugh…) high school boyfriend. She is very, very ill, and the whole situation brings me to literal tears. I know that the Lord has plans, and they are in His time, but sometimes His timing throws me for a loop.
Tomorrow is the big day! The surgery center just called and said we need to arrive at MoMo by 6 for an 8 AM surgery. They moved her case to first due to her heart issues (incidentally, nothing has really been resolved there. They are hoping the medication works–she may have an arrhythmia, but it was hard to localize because she would move every time she felt funny and that makes lots of artifact (junk) on the print out). I will update via twitter (On the left hand side of the blog, scroll down until you see what I’m saying…that’s where you can look if you don’t Follow me).
Veronica and the girls are here to take care of Jack, so I feel fairly certain that we will be having an early night—full of baths and other assorted fun adventures—in preparation for tomorrow.
Keep the prayers and good thoughts coming…will let you know how it goes as we can!
…always get me down. (And being that today is both…)
Janson had her monthly follow up with Dr. Ear. We arrived, and the nurse practitioner came in to look at her ears. She said she thought it looked a tiny bit better, and wrote us a prescription for more ear antibiotics. We were all set to leave, and she stopped us– saying to sit tight in case Dr. Ear wanted to look at it too.
This is when all heck broke loose!
Dr. Ear looked–and broke out the vacuum of doom! As soon as he turned it on Janson was hysterical! Subsequently, Jack became hysterical…No real vacuuming was accomplished. Dr. Ear decided to take her to another room and attempt to look at her ear under the Super Microscope 9000. He studied it and showed it to me—which was totally not necessary—and he referred to “the thing” as “beefy.”
Then, in a matter of minutes he was whisking my baby away to have a CT scan! I was on the verge of throwing up. He thinks that this thing has grown into the bone in her inner ear. This is bad. So while he’s telling me this stuff, I’m trying to forget that they have taken my girl to have her head scanned!
She returned to me happy to tell me all about how much fun it is to have a CT scan. She equated the situation to being “really” in Star Wars. Anyway, they are going to do surgery on September 16. She is definitely not very happy about the situation. She claims she is only happy because she will get to miss school for a few days.
Did I happen to mention that we are “supposed” to be having respite here?
All prayers are welcome…
from us: Cloudy, very cloudy…with a chance of downpours…Let’s go back to Monday. Oh, we had therapy, which was delightful as usual (sarcasm?)…and then we went to spend some quality time with Ella. Well, as soon as Jack stood up from his car seat, he fell over. Alissa scooped him up and tried to console him—and then yelled, “OH my gosh he’s bleeding!” So, I grabbed him to figure out where the bleeding was coming from. It was his mouth…he bit a huge chunk out of his tongue. I mean HUGE…we called to find out if they do stitches in the tongue..and guess what? THEY DO! So yesterday, we thought we might conquer Jack’s fear of the bath by letting him and Ella have a bath together. And for almost, like, 4 minutes (while Ella was in the tub alone), it totally did! However, as soon as Jack was (what’s the word for how we got him in the tub….anyway, put that word here _____) in the tub, there was screaming and flailing and more screaming….Alissa scooped up Ella and left (it was a really disturbing thing in all truthfulness)…and then you hear Ella saying, “Gack, shhhhhhhhhhhhh!” oh well…who needs a bath anyway?Shortly after the bath, I got a phone call from….you guessed it, Social Security! They wanted me to come down to sign some paper….I started to worry….(more about that in a minute).We also had an appointment with the surgeon. He saw the volcanoes, and said “well, they’re still there!” He doesn’t want to do surgery yet, because Jack has lost too much weight…so at least he has another month’s reprieve! Today…we had our yearly IFSP (it’s a big word that means planning) meeting with the Babies Can’t Wait lady. It went surprisingly better than I had anticipated. I think Sebi passed out after she figured out how much money we spent (not that the insurance covered, but how much was actually out of pocket) last year. Let’s just say, Jack could possibly look a lot like a new car if he was money…. he starts classes with his new teacher in 2 weeks. They started talking about autistic tendencies and stuff and I got really nervous…. they are going to pay for me to take sign language classes though, so that should be really good. So after she left, I was going to hook Jack up to eat and head to the Social Security office….well, Jack likes to chew on the feeding tube tubing. He chewed a hole through it and we only get one a month. So I had to call the medical supply place and beg for another one (they gave me 2) and explain that my child chewed through the other one! I finally get to the Social Security office…the guard recognizes me (nice, right?)! I get my number (today I was S75) and it says on my ticket my wait is approximately 14 minutes. Well, 49 minutes later, they called me. Which actually wasn’t too bad. So I go to see Lady #1. She gets all my information and tells me that I need to go back to the waiting room and wait some more until Lady #2 calls my name. (Jack is screaming at this point…I know, it’s surprising!) So like another 15 minutes goes by and Lady #2 calls my name. I go up and she says, “The state of Virginia needs you to sign this release to let them verify his birth certificate.” I almost pass out. What the heck!!!???? SO the state of VA makes you sign a paper so they can verify a birth certificate that THEY issued? I sign. I ask her when I should expect him to FINALLY have a number (keeping in mind that we are still waiting to file 2 years worth of taxes!!!)? She tells me that it takes 30 days for them to verify the birth certificate and then, and only then, will they file for him to get a number….so we should expect his number BY THE END OF THE SUMMER!!!!!! AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!can I cry now?
We re-visited the surgeon today regarding the large volcanos growing on Jack’s stomach. Truthfully, that’s exactly what they look like (and just because I love you, I’ll spare you the pictures). So we get to the office–where, of course they know us and treat us like family (Hey there’s Jack!! How ya doin’? Havin’ a good week?). It was unusually crowded on this fine day, and of course, I get stuck by the one person that WANTS to talk to me…and if you know me, you know how I am about talking in public. I don’t like it. I don’t like to be friendly. I just want to go in, get done, and go home. So this lady, who has 3 children—one is 2 and a half, one is 14 months and one is 3 months (she’s crazy). Do that math. Seriously, I was in shock. Anyway, she’s telling me that her baby wouldn’t eat and he has a feeding tube…blah blah blah….and then she asks, loud enough for probably the entire hospital to hear, “so what’s WRONG with him? I had a friend who had a baby who wouldn’t sleep right and that’s why he had a helmet…” SO I quietly told her that the helmet has nothing to do with the shape of his head, it has to do with his propensity to fall. Then they called her and I didn’t have to talk to her anymore…BUT, in her place sat this other lady. She told me she would pray for my baby–she even asked his name, and wrote it on her Bible(which I totally appreciated and thanked her for)–and then she told me how thankful she was that her kid was fine and healthy. Then they called us (thank you LORD!).
Dr C comes in, pops open Jack’s top, and goes “holy cow!”. Yes, that’s what I kept saying too! Then he says, “Holy #$%^, Heather, I saw these in med school, but I have never seen them as bad as this!” So I ask him, what THEY are…and I used my volcano analogy. He said they are granulomas. Which is a big fancy word that means a bunch of gunk around the sutures…an allergic reaction. Like what happens if you get a splinter and you don’t take it out. So, jokingly, I asked him when Mt. Vesuvius would erupt, and he said, he thought Mt. St. Jack would be the first one to erupt…and I almost choked! He was serious. He said they should erupt. However, he’s not 100% sure that they will, so we’re going back in a month. If they haven’t erupted, he’ll lance them. And the belly button is larger–he said there is no way around surgery for that one. He asked if I was getting more sleep…I said no. He’s still eating every 4 hours…but he told me I looked better. And MOTHER, YOU SHOULD READ THIS PART…he said that I’ll never get to 100 pounds if I can’t sleep through the night(then we talked about metabolism and stuff). So don’t worry about me. I eat. I consume large quantities of coffee. It’s all going to be OK.
Love the picture. Jack with his aptly dubbed “NoNo”! He thinks that’s its name since every time he pulls on the tubing we say, “No! No!”
Yesterday we had our first speech therapy since surgery…Jack, of course, walked in like he was the Pope and ruled the place. At least some things don’t change! After therapy, we had our follow-up with the wonderful surgeon (did I happen to mention that he is really tall and good looking….he could probably tell me to hang Jack upside down and I would!). So Dr Surgeon comes in and grabs Jack…he plays with him and giggles, and then he looks at me and says, “Heather, you’re doing a great job taking care of him.” Well, that was enough—I burst into tears. Seems to be a common thing lately. I told him to stop being nice because I can’t handle nice…I haven’t had enough sleep to handle nice! He laughed, and we talked a little about getting him off the every four hours and closer to every 6 hours, but it will take about a month. Then, he scooped up Jack and put him to look at his stitches and incisions. He opened his outfit and said his incisions look great! Then he says, “oooh”, and I say “HUH?” and he says, “looks like we might have one more surgery to do,” and I say “WHAT!!!???”Well, MY son, is allergic to his stitches, which caused where they went in through his belly button to swell (his belly button currently looks like a quarter) and it’s herniated! He IS MY SON! My little allergy-prone baby boy. I’m so proud! Only I could have a child who had allergies like me! So we go back in 6 weeks to see about more surgery–after we rub antibiotics on him to keep the swelling down! Isn’t that just lovely! We’re also going back to the doctor today because he’s been up since 4 screaming and wheezing. I think we need different meds because these ones aren’t doing the trick. It’s supposed to be Greening of the Fountain today too, but it’s pouring down rain. Mom and Dad are coming up today too, so watch for pictures of the Meems and Pops with us!
I’m so tired, I’m punchy! And especially funny! Yesterday, Jack returned to the doctor because he’s been coughing, had fever, and was generally miserable. Bless her heart, the doctor looked him over and turned around and told me that she felt so bad for all the stuff he has been through…which produced a torrent of rain from my very own eyes! Anyway, he’s down to 20 pounds (although some of that is to be expected after stomach surgery). We are also doing nebulizer treatments–as if my schedule wasn’t full enough before! Today, I decided to make my trek to the Social Security office again. Some of you may recall the last time I went there. Yes, the time that I was escorted out by security! Yes, me. Well, let’s just say that if Alissa hadn’t been with me, I’d probably be in jail. Here’s what transpired:Get in line and get a number so you can sit and wait forever (I happened to be E39 today).They finally call my number, after I got to sit by some of Savannah’s finest residents. I go to office #10 and the lady asks for his birth certificate and adoption decree, which I produce from my magic brown file. She then looks up at me and asks if I can provide proof of Jack’s identity. As if the adoption decree and birth certificates weren’t enough. So, I tell her that. She gives me another look. She then tells me that I need to show her Jack’s shot records in both of his names. (picture me like dying in my chair as I try to explain to Ms. Brilliance that the minute they put him in my arms he no longer had “that” name)So then she asks for his shot records again…I hand her every medical record I have from his birth; however, because there is not an updated shot record, she won’t accept ANY of his medical records, and she kicks me out. (at this point, Jack was walking around the hallway, and in typical Savannah-ese, I yell, “Hey ‘Liss, catch the baby, ‘cuz we’re gettin‘ kicked out!”)The Security Guard gives me the eye. I give it back. So it turn back to Brilliance and ask her if I have all these medical records what makes a shot record better than what I have—and trust me, when I go, I go with piles of stuff. Not to mention that Jack is wearing his braces and helmet–obviously, I am taking care of him. She handed me my kicked out papers and told me not to come back without the shot record…I walked out and cried. Let me tell you something else at this point. I love my friends! Seriously. A group of my friends from home (names not said to preserve their secret Purple Cow Identities) sent me a big box yesterday. Inside were a few little pressies for the kids, and some presents for me (complete with Backstreet Boys and Ricky Martin wrapping paper) and cards for each day. Yesterday I opened a candle and a sappy card. Today, I opened a rubber chicken and a card inducting me into the mafia. Maybe the mafia is my answer to the problems of my life! They might help me more than the stinking government does!!!