In February, I woke in the middle of the night with intense pain in my lower abdomen. After it persisted for several days, I made an appointment with my ob-gyn to see what was going on. We held off because I am uninsured and have a history of difficult lady problems, so I was hoping it would just go away.
Dr. Killeen saw me for a great discount, not charging me for the ultrasound that he performed but just for the office visit which was also severely discounted. I had a massive ovarian cyst inside my right ovary. I needed to have surgery to have it removed, but our options were limited because of my lack of insurance. We decided to try to minimize the cyst with estrogen based birth control (I was previously on a progesterone based implant); if the cyst was the result of ovulation, the birth control would get rid of it. If it was pathological, I would have to figure out how to do a surgery.
For a couple of weeks, the pain slowly diminished. I was so hopeful! I had to go back two months after the initial visit. But more on that later.
Gabriel turned 4 years old in February. I did not feel much up to planning a birthday party, so I jokingly told my mom to do it. She readily agreed, with the caveat that the party obviously had to be held in Abilene where she lived if she was planning it. All I had to do was show up? Done.
Mom planned a trip to the Abilene Zoo with family--low-key is the ticket for Gabriel, and more so, the focus not being on him. At the Zoo, he was able to ride the train and ride around in the wagon, looking at each exhibit as long as he pleased. I got him a long snake stuffed animal and a root beer to drink; he didn't get to feed the giraffes because the fatties were all ready full, but we went and threw food pellets to the ducks. Uncle Jarrod studies birds, so he was able to tell us what each type of duck was by their distinguishing marks.
We were hoping to go to an enclosed park for cupcakes afterwards, but it was too cold and kids were starting to droop with exhaustion, so we went back to Jarrod and Julia's house. Aunt Amber and Oma made orange dreamsicle cupcakes, as well as some chocolate cupcake that I don't quite remember. Gabriel had one of each and thought that was just the greatest.
He had less than zero interest in opening his presents; he was more or less clocked out of being social at this point, so we set the presents on the floor and let all the other kids open them for him. He liked that.
All in all, it was a perfect birthday for him. Lots of moving around outside, no one watching him, pleasantly paced day.
Michael was having the best months at work, selling more than he had historically. He was worried sick about me, ready to take off any minute if I needed him--he hates sitting behind a desk while I am at home. I couldn't drive comfortably, I couldn't pick up my kids without much pain (none of my kids being what one would call "dainty"), and I was more tired and weak than I had ever remembered feeling. When there is a cyst, your body can confuse it with pregnancy and give you the full compliment of associated symptoms, including (but not limited to): nausea, vomiting, exhaustion, breast tenderness, lower back pain, and headaches.
Luckily, Emerald and Gabriel were safely at school for most of the week. Gabriel had made good progress up until December; then abruptly, he reverted back to complete indifference and difficulty in school. Full hand-over-hand was required for every activity, he would not attend any task in the classroom, and participation had come to a full stop. His teachers and I were at a complete loss for why or how this could have happened, but I asked his speech therapist at home and she had some surprising insight:
Gabriel's class at the start of the year was five boys including himself. Throughout the year, more boys were added as they graduated from ECI and transferred into PPCD or moved to the PS school district, so that by the end of the school year, Gabriel's class had bloomed to 12 boys. That is quite a change, and every time they got a new student, he had to readjust all over again. I am not positive this is the definitive answer, but it does add up.
As for Emerald, she was still struggling in the school atmosphere. She was getting in a good deal of trouble at school, especially and consistently in gym with Coach Cole, and I got nearly daily reports of outbursts, arguments, and fights with teachers and other students. When she got home, she was generally sweet tempered, but all she wanted to do was lay in bed from the moment she got home until it was time for dinner. The only thing she would get up for is to go to the bathroom or refill her water bottle.
Like the mean tyrant mommy that I am, whenever the weather was permitting, I would make the children play outside. Of course, the weather has been so weird this year--the cold persisted well into May, which then abruptly gave way to scorching and unbearable heat. Inexplicable. Gabriel and Emerald both fought me being outside. While Benjamin would happily tottle about, Emerald would find a spot in the sun to lay down and Gabriel would sneak around trying to find entrance back into the house.
All in all, we were still functioning just fine--the weeks were passing by and we were managing.
Rhonda taught me how to crochet a fashionably popular ruffled scarf; I took off with it, crocheting them all like a mad woman. When the pharmacist saw and offered to buy the scarf right off my neck, I realized I might be able to start bringing some money in for the family by making and selling these scarves. Calling them "sweetheart scarves", I did reasonably well, selling enough to support my yarn-y hobbies.
For the kids' spring break, I sold enough scarves to get down to Abilene and see my family. My daddy had had a scare the month before, when his kidney numbers showed signs of failure. Miraculously, they were "fixed" and started functioning just fine, but I was so upset at the thought of losing my Dad again that I needed to go out there and spend time with them. Jarrod and Julia were in Louisiana so I didn't get to see them at all, but Amber and Jud and I got to hang out; we stayed with Mom and Dad in their new apartment, trying new foods and playing with Mom's little jerk of a kitten, Maxine. It was so great to get away from the house and from my loneliness for a while, but not so long that I missed Michael horribly.
Michael's birthday was on April 6th. He got a spinning TARDIS for his desk, some new work clothes, and a Sonic Screwdriver; we fell in love with Doctor Who in this past year, if you can't tell. We had our "bread lady" (the woman that makes and sells loaves of fresh bread at Michael's work) make him a giant Oreo cake. It turned out fantastically.
As the time for my two month appointment approached, I started to feel abruptly much, much worse. For weeks I had been improving and I was so encouraged that I wouldn't have to have surgery, when I began to rapidly decline. Though I had spent the bulk of last year dieting to reach my ideal weight, my abdomen was bloated and distended so much that I looked like I was with child. The pain and discomfort was constant; before I had been able to tolerate driving and lifting children on occasion, but then I could no longer handle it. I fell into anemia, so weak and trembling that I was unable to lift a folding chair. Constantly sick to my stomach, unable to eat...I was baffled. Could one little (well, it was rather big) cyst do all of this?
I went back in for my check-up, hoping for the best. My prayers had been answered!! My cyst was completely gone!
Remind me to be more specific in my prayers for the future.
The sonogram revealed a rather large mass that had formed in between my cervix and my uterus. Dr Killeen was unable to identify it himself, so he referred me to a radiologist who was better equipped at reading the scans. (As Dr Killeen put it: "I am just a ob. I can tell you if it's a baby or not...not a baby!")
We went to the radiologist that afternoon who preformed a few scans and called the nurse with his findings, which were basically: heck if I know.
On his report, he wrote "cannot rule out malignancy", which subjected me to the rather unpleasant biopsy. I will not go into much detail on that rather than to say...ow.
Biopsy came back as just blood tissue. We put me on heavy doses of progesterone to see if it could flush the mass out, and we discussed the super unfavorable option of a hysterectomy.
Most people reassured me: you are 25! You all ready have three beautiful kids; you don't need any more. You will feel so much better after it is done and taken out, you won't have periods any more. It really is for the best.
They meant well, and all of them had very good points...but I am just so, so against it. My mother got her tubes tied after she had me at the age of 21; when she remarried, they wanted more kids but were unable to because of the tubal ligation. I cannot imagine making a life time sterility decision at this point in my life unless we have exhausted every other option. Who knows how I will feel in five or ten years? I can always opt to have my uterus removed, but once I make that decision, there is no going back--I am to live with it for the rest of my life.
Pragmatically, a hysterectomy is also a non-option from a fiscal and physical standpoint. Hospitals routinely work with uninsured patients to make necessary surgeries happen, but we are talking around a $10,000 procedure, of which I will have to front $2,000-$5,000. That is some serious debt to be undertaking. But even if I had the best insurance in the world, it couldn't save me from the fact that I can't have the procedure done laparoscopically. Because of my three Caesarean section births, my scarred uterus is too fragile; I would have to have the complete abdominal surgery. The recovery time is harsh--there is a big empty void where an organ used to be, and I will be in a great amount of pain. I won't be able to lift my babies for six weeks; drive for over a month. Which of course causes a problem because I am a stay-at-home Mom. My job pretty much consists of picking kids up and driving them around.
Kind of wandered off there for a minute. Do apologize.
I reach out to my church class friends, who are so amazing. They brought us meals for weeks while I was incapacitated, called and texted and sent Facebook messages to reassure and uplift me. It really was so astounding and so heartwarming; I am proud that we are part of this community.
Daddy came out and stayed for a long weekend to help me. I so love having my daddy around--he is such a big help, and Gabriel has never responded to anyone like he has to his Grandpop. Anything Dad does is just great to Gabe, who hangs on his every word. Dad stayed for about four days before he missed mom too much and had to head back home; the day after he left was one of the worst for Gabriel that we have ever had. He was beside himself, biting his arms until they bled, having poop accidents, unable to settle to anything...he was traumatized, and I felt so horrible for the poor guy.
One day, Michael picked Emerald up from school. My parents had come into town to help out, keep me company. I was rather pitiful. Michael and Emerald ran a few errands, but by the time she came home, she looked exhausted, overheated, and generally sick. I sent her to bed to rest.
At dinner, she complained that it was too hard for her throat and asked for softer food. We were eating baked pasta--I told her there really wasn't a softer food for her to eat than baked noodles, so she cleaned up her uneaten dinner and went to bed.
That night, she was up frequently vomiting. Michael and I agreed she must have a stomach bug because she didn't have a fever. We sat up with her, and figured it would pass the next day. She stayed home from school to rest, though she hadn't vomited in hours, just laying in bed watching movies and resting. This was Wednesday.
Mom and I ran some errands that needed to be done while Dad and Michael stayed at home with Benjamin and a sick Emerald (Gabriel had gone off to school). When we got home from lunch, Emerald was...well, it sounded like she was hyperventilating. I thought she was being dramatic (not an uncommon occurrence for her). I couldn't prompt her to eat, and she wouldn't take more than a few sips of anything. I took her onto the porch to sit in my lap and try and nibble at a cracker, but she was so weak and lethargic. It was noon so I couldn't call the doctor's office for an hour, but we figured: if she is having trouble breathing, that is a trip to the emergency room. Her cheeks and eyes were sunken into her skull, dark rings around her eyes. Her chest heaved with every attempted breath. Her arms and legs were completely mottled, and her hands and feet were cracked with dehydration.
Michael and Daddy stayed home with Benjamin and to meet Gabriel's bus when he got home from school; I drove us to the Children's ER at Covenant.
By the time we reached the hospital, Emerald was lolling about, barely conscious and on the brink of passing out. Her skin, normally so fair, was white. I carried her in, despite the struggle of her size and my own problems (oh, how trivial and ridiculous they seemed now!).
Keeping calm is usually pretty easy for me--I mean, sure I get mad and flustered like anyone else, but sick babies are my strength; it's where I shine. In my head, I have more or less decided that she was probably just very dehydrated from being sick and the heat. I am taken aback when the hospital staff starts sniffing her breath, but more or less dismiss it.
The nurses hook her up to an IV, pretty standard procedure for ER patients so that they can be given fluids and medicines as quickly as possible. Michael asks for an update, so I try and get a picture of her lying on the gurney, but she has lost consciousness--she is so ghostly and pale that she looks like a corpse, and I can't send it to Michael.
The doctor comes in much more quickly that usual, when I reflect on it. I think, "Oh, slow day". In retrospect, it took me an embarrassingly long time to put all the pieces together and figure this out. I mean, hadn't I been worried about this since she was a baby?! But I was intensely focused on the moment that it had never occurred to me, never crossed my mind.
He had tested Emerald's blood sugar; it was 485.
Normal blood sugar usually stays between 70 and 150, with the occasional outliers. Emerald was Type-I diabetic.
I snuck out into the hallway to call Michael; in the room I was perfectly calm and collected, but as soon as I was out of earshot, I started crying. By his tone of voice, he was just as taken aback as I was. Shocked--pure and simple, ground right out from under us, shocked. That is the only way I can describe it.
Emerald presented with "classic symptoms of DKA", which is usually the first indicator of Type-I diabetes. DKA, or diabetic ketoacidosis, is where the body is short on insulin to use the sugars gleaned from the foods we eat to give energy to the body. In order to keep functioning, the body begins to break down fatty acids for energy, which produces acidic ketones that lace the blood. It makes the blood too acidic, resulting in nausea, vomiting, increased thirst, excessive urination, abdominal pain, labored or gasping breathing, lethargy, stupor...and an oddly sweet breath. Now I understood why the nurses had been sniffing at her mouth!
She presented with significant dehydration which meant she needed to be admitted to Pediatric ICU in order to gradually re-hydrate her as well as to get her blood sugars and ketones back within normal ranges. Michael stayed at home with the boys and Ken and Rhonda came up the hospital for moral support. The ICU doctor explained that even though she would be very thirsty and ask for drinks, we couldn't give her anything because her organs and brain had been shriveled without adequate fluids--if we gave her fluids too quickly, her brain would swell and it would cause seizures, coma, or death.
It was hard listening to her asking for water and only being able to run a wetted sponge on her lips. My phone was incessant with texts and calls, most of which I was unable to attend to--I was completely focused on my little girl.
Michael came up to visit and Emerald wanted Daddy to stay...looking back, that was the best option for everyone for Michael to stay, but it was not the option I could have lived with. Michael was more capable of lifting her limp body for using the bed pan or moving blankets and sheets, and the boys were going to sleep better with mommy nearby; it is just a fact. But I could not leave her side. While my child is sick, I have to be there, even as weak and useless as I can be.
Rhonda stayed up there that night too. I slept in the bed next to Emerald, careful of all the wires and tubes that were connected to her. They had monitors for her blood pressure, oxygen levels, and heart rate, as well as three separate IVs--one for her insulin, one for fluids, and one for drawing blood to test her glucose so they wouldn't have to repeatedly stick her all night. She had an accident in her panties which was the only pair we had, so she slept naked. She thought that was pretty great.
For most of the night, Emerald was more or less out of it. I would be surprised if she remembered anything from that night. She would wait until her bladder was hard and painfully distended before she would pee; we would all but have to push it out of her because I didn't want her to need a catheter. It was a long, long night. The night before I had been up with her while she was sick; now I was nearly delirious with exhaustion, and I had neglected to take the pain pills which would quiet the intense pain from the uterine mass because I wanted to be coherent and available to Emerald.
Even the longest nights end, and Michael came up there looking fresh and wonderful (though he had gotten less sleep than even I had managed because the boys were distressed all night without mom home), relieving me so that I could head home and take a shower before my own doctor's appointment.
Dr. Killeen's nurse is just one of the greatest people in the world. I explained about Emerald and everything, and when they ran the scan, the mass had not budged even in the slightest. Renay (the nurse) disappeared for a few minutes, then came back and told me that the surgical center had agreed to work out a payment plan with me without any money down so that I could have a D&C the next morning to remove the mass.
A Dilation and Curettage (D&C) is a procedure where you are sedated, the doctor progressively dilates your cervix and scrapes out whatever foreign or offending yuck is inside your uterus. It was a quick, inexpensive procedure that would get me back on my feet and get rid of that mass that was really ruining my every day life.
The best part was that it is an outpatient procedure--I would be in the surgical center for about three hours, but then I would be right back on my feet, ready to go back and take care of Emerald.
Mom and I went and did all the pre-surgery paperwork and blood work, then I grabbed some balloons and went back up to see Emerald. Oh, what a difference a day made! She was up in bed, eating an apple and a ham and cheese sandwich and drinking as much milk as the nurses would allow her. When I had left in the morning, she was about to brave her first cup of sugar-free jello to see if she could keep it down, and now she was on solid foods! Her and Daddy had a great time, watching movies and hanging out; she wants me when she is "sick", but boy when that girl is well, she is Daddy's inside and out.
She had all ready had lots of visitors, and her spirit was back tenfold. She is just the sweetest thing when she is getting all the attention, and she is basking in being lavished in gifts and love. Aunt Amber and Grayson drove up to be with us, and Uncle Jarrod, Aunt Julia, and Andrew, and Beth and David were planning on being there that weekend. Family and friends and church were surrounding us, supporting us. It was overwhelming and wonderful.
We decided that Michael would stay at the hospital that night with Emerald so that I could try and get some sleep before my procedure. After I left, they moved a now stabilized Emerald into a "regular" room and out of ICU.
Ben and Gabe were so beyond relieved to see me. Gabriel hadn't seen me since he had gotten on the school bus the day before; Ben had gotten a brief time with me when I took my shower before my doctor's appointment, but he was furious when I turned around and headed back out.
Bright and early at 6 am the next morning, Mom and I show up at the surgical center, first in line for a pre-work surgery. Mom and I joked back and forth; we have a weird, but happy, relationship. I was nervous, but they gave me a "forget-me-now" medicine that made everything a wonderful blur. It took about 15 minutes, half the time it would normally. Dr. Killeen is just really very, very good. A D&C can be dangerous for women that have had multiple c-sections because the uterus could rupture along the scar lines, but Killeen is too gentle and careful for that. He told mom (and me, later) that there was too much gunk to scrape out; he ended up having to suction it out like you would have to with a miscarriage, and there was a lot of it. It was sent off to pathology and I was sent to recovery.
The first phase didn't last all that long because I was impatient to be moved home. I asked to be moved to second phase, which they did willingly--said I could leave as soon as I could move around and eat something without throwing up. So Mom laughed her butt off at me as I danced around with my IV eating a muffin to prove that I could leave. Even drowsy and feeling confused and "off", I felt empty. At first that saddened me--it was the feeling of physical emptiness that I had after they removed my sweet babies--but then I realized..I am not swollen with painful mess anymore! The almost immediate relief just astonished me.
Barely an hour and a half after we had gotten there, I was on my way home, my head and feet hanging out the window because I was pretty sure I was going to be sick and the early morning air helped.
The doctor told me to rest for at least a day to avoid any complications, which was hard for me. I was so full of anxiety and fear; the reality of my life was setting in, a future of having a insulin-dependent diabetic child AND a severely autistic, non-verbal child...it was terrifying. I was sick to my stomach, my chest felt tight so that I could barely breathe...I couldn't sleep, even though I was so, so tired. Eventually I relaxed watching "Grey's Anatomy"--it is always easier to forget your own problems when you are watching someone else's.
Amber came in to take care of me. Most of that day for me was spent moving from one place to another to lay down. I was sore but otherwise okay, and I missed and fretted over Emerald. Michael kept me updated--he was now administering her insulin shots, which she was so nervous about at first but then Grannymom held her and soothed her and she was okay. He was doing her finger prick glucose tests, and was feeling pretty confident. The next day the diabetic consultant would be coming in to talk to us about counting carbs and novalog and lantis...it felt all over our head and so scary.
My procedure was on Friday; by Saturday, I was up there for breakfast to spend time with Emerald and talk to the specialists.
The endocrinologist explained diabetes to us: it is an auto-immune disease; her body was predisposed to this condition. She would have gotten sick with some nothing sickness, which would cause her body to attack her pancreas's beta cells--the cells that control the production of insulin. By the time we got her to the hospital, usually the pancreas beta cell function is down to about 10-20%; by the end of the year, it will be down to 0% functioning where she is completely dependent on her insulin.
Counting carbohydrates is...I wouldn't say "easy" for me, but I picked it up quickly. I had gestational diabetes all three pregnancies, so I was used to counting carbs and building meals. What I was completely unsure and uncomfortable with was the insulin shots--I didn't want to poke my baby girl! Luckily, however, Michael was absolutely fearless; he was confident and picked up the shots so naturally. We made the perfect pair! Between the two of us, we were able to handle the carb counting, covering it with insulin, shots, and finger pokes.
A kind of quick mini course on carb counting (which they couldn't have made sound more confusing if they tried): one carbohydrate is 15 carbs, which is like an apple, a slice of bread, a glass of milk. She needs 45-60 carbs (or 3-4 carbohyrdates) for every meal, and 15-30 (1-2) for every snack. She does not get insulin for snacks as they are just to keep her blood sugar high enough to get her to the next meal. After each meal (or before, doesn't really matter when as long as you are careful and watching it), she gets 1 unit of novalog for every 2 carbohydrates/30 carbs, plus 1 unit for every 100 over 150 her blood sugar is. Which means with well controlled blood sugar, we are generally looking at around 2 units of novalog. We can go over the 60 carbs at a meal as long as we cover it with the insulin.
The lantis stays the same regardless--it is always 7 units, every night at 8 pm. It is to make up for the baseline insulin the liver secretes everyday to keep the body going.
Confusing, right? After a while, you start memorizing what frequently eaten foods are and so it isn't as much of a struggle, but I am still looking up a lot of things.
My family mostly took care of the boys and the house while Emerald was in the hospital--they pruned the rose bushes, hung shelves in the living room, Emerald's room, and the boy's room, did laundry, cleaned the house front to back, manned all the meals and the dishes, went shopping, and basically kept themselves very busy. No one in my family sits still for long, lol. Michael's family helped with Emerald--staying up there with her when I couldn't, doing the kids' laundry, watching Benjamin when my mom needed to be with me...we are so lucky to have so much family to help!!
Saturday, Beth and David and Andrew Bevill came up to visit us at the hospital; after Dr. Beck (the endocrinologist) met with us, she said that Michael, Emerald, and I were an exemplary family--we had picked everything up so quickly and they were all confident that we would be more than capable of handling Emerald's diabetes. We could go home that day!
Ummm....NO?!
We aren't ready!! We were expecting a week long hospital stay!! And while it would be convenient to have all my little ducklings in one place again, we were petrified to be sent home with this sick, fragile (fragile? Ha!) life in our hands. What if we messed up her blood sugars? What if she went into DKA again? What if we accidentally overdosed her insulin?! No, no, no--she can stay right here with the doctors and the nurses and everyone telling us what to do, thank you very much!
Obviously you can't say that. For one thing, hospital visits are costly and insurance doesn't pay for extra days just because we are scared. Emerald could be there for four days or for forty and we would still be terrified to bring her home. It is normal to be scared, or I'd like to think it is. It was time to start living our life again.
By that afternoon we had her back home. I had accidentally let the Medicaid for Emerald lapse because it didn't automatically renew like Gabriel's does, so we had to pay for insulin out of pocket...ouch! Nearly $600. We were blessed to have it available when most months we are lucky to have two coins to rub together, but it was still a hefty and unexpected cost. (For those of you who are worried, Medicaid will cover the hospital stay because we got them back covered and they cover up to three months of unpaid medical bills.)
The one hiccup after she came home: I gave Emerald her banana as a snack; but then she got in line for a cereal bar with her brothers and cousins, so Uncle Jarrod (unthinkingly) handed her one too. He felt so horrible, he took her outside and ran her from one end of the street to the other, and her blood sugar came out just fine before the next meal, so no harm done :)
This is much longer than I intended or wanted it to be so I am going to go rest my now very scrunched shoulders and cramping fingers. I don't see how people stay on the computer all day!!
I know that this is focused a lot on me--my perceptions and feelings and perspectives--but that's because hey, I wrote it. Maybe we can see if Michael would be willing to do a guest spot on the blog and write his take on all of this.
Have a fantabulous day and look for more updates soon (hopefully)!
--Andie
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