We are alive

I realize we haven’t posted in a while, we’ve been so busy getting the finishing touches of the nursery done and having the baby shower. We do have a post in our drafts that we will be publishing soon telling you all about it!! Babies are still hanging out in my tummy for the time being ūüôā

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My stay at Barrow Neurological Institute and my diagnosis of IIH/PTC

I have had headaches for years. They have been a part of my life since working at the cigar store, and my doctors have pretty much always blown them off. I had generally accepted them as something I would have to live with and get over. About a week and a half ago, I noticed that I was having trouble reading from¬†across¬†the bedroom. The TV guide was all blurry. I thought this was just exhaustion, so I just went to bed whenever it happened. A few days after that, I noticed that when I was talking to patients an work I would have a very hard time focusing on their faces. I decided to make an appointment with my PCP to talk about the vision loss, headaches and nausea ¬†I had been experiencing for a while. She was¬†concerned¬†and wanted me to have an MRI of my brain asap, and also wanted me to see an optometrist. ¬†I had already made an appointment to see an optometrist so I decided to have that done before anything else. At the appointment, the doctor kept saying “hmmmmmmmm” while looking at my eyes, and had me do the vision tests several times like he wasn’t sure they were accurate. He then asked me if I would consent to retinal scanning to take a closer look at my optic nerves. He told me that I have Papilledema, which is swelling of the optic nerves and discs. This was causing my burred vision. He said that he was concerned for two reasons. First, ¬†nothing he tried would correct my vision. It was not a refraction problem. Second, this was only caused by one thing, intracranial hypertension. The pressure in my head was too high and was pressing on my eyes from behind. He said that the only things he could think of that would cause this were a brain infection or brain tumor. He said that he wanted me to have an MRI ASAP to rule out a tumor. I called Ashley at this point to update her, and she was really upset. My PCP had thrown the possibility of a tumor out there as well, and we had both been thinking about that possibility a lot. She came home from work to go to the doctor with me.

I went back to my PCP to go over these findings, and he decided that he wanted to call a neurologist to see what they thought. He called the neurologist on call at Barrow, and he said that he wanted me to go into the ER ASAP, because they were concerned for my eyes. I was PISSED. I knew I would end up there all night, and I was just generally frustrated about the whole situation. They ended up getting us in very quickly, and told me that they wanted lots of imaging and a spinal tap to see that the pressure was. They got me back pretty quickly, took blood and got me back for a head CT. After the head CT, they put me into a little¬†procedure¬†room for an LP. I was very nervous about it, and I asked the dr if I could have a¬†Xanax¬†for the anxiety. He ended up ordering Versed, which is what they give for procedures like colonoscopies. It usually (when given in a high enough dose) causes sedation and amnesia. They put an IV in and gave me 2 of Versed, which didn’t even touch me. Then they asked Ashley to leave the room an I really started to panic. I could hear Ashley in the hallway yelling at the nurse, and the doctor leaned over me and asked me if I really needed her in there. I told her that I didn’t care if it was a sterile¬†procedure, she needed to be there with me.¬† I could hear Ashley telling the nurse “I have been with her for 7 years, YOUR germs are more dangerous to her than MINE ARE!!!” The doctor decided that since I was aware of the risk and consented to it, Ashley could come in and sit with me, which she did. The actual LP wasn’t bad. By the end I was laughing at myself for being so worried. The lidocane is the only part that hurt, the rest was just pressure. It’s more the idea of what they’re doing. My opening pressure was 45, which was high enough to admit me. Everyone kept telling me that my symptoms were consistent with a brain tumor, which did nothing to help my anxiety. They moved me upstairs, and the nurse immediately gave me 2 of morphine in my IV to calm me down and help with the back ¬†pain and headache from the LP. I fell asleep very quickly!

The next morning, after only a couple of hours of sleep, I went down for an MRI and MRV to rule out tumors,¬†aneurysms¬†and other structural abnormalities. I was exhausted, scared and in pain, so the nurse there decided to give me some “joy juice” (as she called it) which ended up being more Versed plus some fentanyl, which is stronger than morphine but shorter acting. Both scans were done within 45 minutes and we went back up to the room. When I got out of the MRI I could tell Ashley had been crying, which she denied. She later admitted to me that she had been crying on the phone with Lili the entire time I was back in MRI. This was a really weird time for us… we were doing this weird dance around each other. We were both mentally preparing for the worst. All I could think was “If it’s a tumor, is it cancer? Am I going to need LPs all the time to keep the pressure down? Will I have to shave my head? Will I die? What will Ashley do when I die? Will I ever get to be a nurse? Will I ever have children?” I was going through my life over and over in my head, and no matter how I looked at it, I just knew I hadn’t done everything I have to do. I was so afraid that my life was going to be cut short and I would never have the opportunity to do things that I had been taking for granted. Ashley admitted to me that she had imagined my funeral. Neither one of us shared these fears with¬†each other¬†.. it was too hard to think about, let alone talk about, but we knew. We knew what the other was thinking. 7 years might be all we ever get. It’s hard not to think that way when five neurologists, your PCP and your optometrist all say that they think you have a brain tumor.

Eric and my mom came to see me, and while they were there the nurses told me that I would be staying another night and I needed to have another LP. They said the doctor would come in and talk to me about the MRI results in the morning. Ashley and I both threw fits, because we didn’t want to wait ANOTHER 24 hours to find out if I had a tumor. I insisted that I talk to someone ASAP about the results. My nurse got one of the neurologists on the phone, and she told me that my MRI and MRV were both clear of structural abnormalities. NO TUMORS. NO¬†ANEURYSMS.9¬† She said they were keeping me because this now meant that the pressure was being caused by something else, and they wanted to know what it was. Brielle came to visit me after she got off work and we had a great time, quoting South Park and being way too loud for a hospital. It was nice to relax and laugh after being so scared that I was going to have cancer. The nurse came in to give me OxyIR to go to sleep and I got a full 10 hours that night.

The next day, the doctor came to do the LP. I asked my nurse to give me Ativan and Morphine because I was anxious, which she did. My doctor was saying the whole time how nervous he was, which didn’t help me at all. At one point he said “You know, they say that the area we put the needle is way below the spinal cord, but there is really no way to know that for sure.” He then said he was glad I still had the hole from the first one so he could use it as a guide. I just looked at my nurse and she pushed more morphine and ativan, I could tell she was just as horrified as I was that this guy clearly had no idea what he was doing. This of course blew the vein that my IV was in… so luckily that was the last IV push I needed during my stay. Right before sticking me the ¬†first time, he said “If I don’t get it in the first time, I don’t feel safe digging around in there…” He ended up sticking me twice, neither time had any fluid output. I asked him “If you’re putting that into my back and you should be getting fluid but aren’t, where does that mean the needle is?” He just said that he didn’t know for sure. Both times he stuck me were incredibly painful, he must have been hitting something he¬†shouldn’t¬†have. I had horrible pain that spread from my lower back into my butt and legs. After he took the needle out he told me I could sleep off the meds, go home and then come back to the clinic so they could do it with x-ray assistance. He also wanted me to see an Opthomologist ASAP to watch my eyes. My nurse then took the ¬†IV out, and I remember saying “That didn’t hurt at all!” and her replying “Devan! I just gave you 2 of morphine, Jesus Christ!!” She was so funny. I passed out, and woke up a few hours later when the nurse came in to go over discharge instructions with me.

My official diagnosis is Idiopathic Intracranial Hypertension or Pseudo Tumor Cerebrae. This basically means that I am presenting with the signs and symptoms of a brain tumor, but there is nothing there structurally to support that. Since they were only able to get one opening pressure from my LP (the 2nd was a huge disaster) I have to make an appointment at the Barrow Clinic for follow up and also to have another possible LP (I hope not!) IIH is usually caused by hormonal changes and weight. The best my doctors can guess, it is a result of my fertility treatments. I also took the antibiotic Doxycycline, which can cause intercranial hypertension. The key now is to get and keep my intercranial pressure LOW to avoid permanent vision loss. 10 to 25% of people with IIH have permanent and non-correctable damage to their vision. The doctors have me taking Diamox, which is  diuretic that can decrease the cerebrospinal fluid by up to 50%. Hopefully the successful LP and this medicine will keep my pressure low enough to reduce the risk to my eyes. If they find that my pressure stays too high,  I will have to have a shunt placed to drain the CSF permanently.

It’s been hard to judge my symptoms since leaving the hospital… I have had HORRIBLE headaches, which are most likely from the huge loss of CSF from the LP. My brain is resting right on my skull since there isn’t enough CSF for it to float in. This is the most uncomfortable part, and I’m treating that with tramadol, fioricet and tylenol. The Diamox upsets my stomach a little, so I’ve been nauseated. I’ve had blurred vision today along with the headache, but I think it’s due to the headache and not the¬†inflammation¬†in my eyes. I’m having lower back pain, which I think is from that asshole neurologist poking around blindly in my back… That has been OK with a heating pad. My arms are JACKED up… the nurses at work today were horrified… they said that for me to have that much bruising the phlebotomists there must need a refresher course.

I’m not sure exactly when I’ll be going in to the clinic for more testing, but it will be within the next week or two for sure. I also have to make an opthomologist appointment to check the swelling in my eyes.

I’m glad that I don’t have a tumor. A lot of people have been saying that they never thought I had one, and they knew I would be fine… and that is just great. It’s different when you have some of the top neurologists in the state standing in front of you telling you there is something wrong with your brain. Telling you that you might have a BRAIN TUMOR. This was the¬†scariest¬†weekend of my life.

That’s an update on me… It’s not necessarily related to our fertility but I thought it was still important! I was on so many narcotics, I’m afraid I wouldn’t be able to remember most of this. I wanted it down for my own posterity.

I will keep everyone updated as I keep going through this… while it’s possible that the pressure won’t return, it’s also possible that this will be a lifelong condition that will require a lot of hospital time and surgery. Let’s hope for the first one!

Devan

Crazy week, blood work, and a big leap ahead!

Ok, so it’s been a REALLY long time since I’ve updated anyone on what has been going on. It’s been a busy week!

We will start with Thursday of last week. I went in to have some of my STD testing done. My doctor decided that she wanted to do a pap along with the Gonorrhea and Mycoplasma cultures just to knock everything out of the way and make sure I’m good to go. She wasn’t sure if I would be able to get my blood work done there because the specific lab codes are very obscure. She did some poking around for me and found out that almost all of my tests are “screening codes” and we could get away with drawing the blood on her orders so my insurance will cover it all! There was only one test that they couldn’t do, so I will have to get that one done with Dr. Nemiro.¬† Not too shabby! I went back on Friday morning to have my blood drawn.

awesome.

Ok, so here is where shit gets crazy. I was driving around in Sun Lakes, seeing patients, when Ashley called me. She told me that she had just been laid off. She just started this new job 45 days previously, and we were so excited because of it. The company was a great one (so we thought) and the pay was really great. They had even brought in an expensive consultant on a Saturday and paid everyone overtime to come in and listen to him talk about sales tactics. As it turns out, the school was on probation, doing horribly financially and was forced to lay off 15 people that day. We were devastated. I spent a couple of hours crying between my patients, thinking about how unfair it was and how my dreams were once again being put on hold for things that I have no control over, and then I realized that I was just making it worse. I called Ashley and told her that I had decided to remain positive through this whole thing. I told her that sitting around feeling sorry for ourselves wasn’t going to do anything other than make us feel worse. It was a waste of time to think about what was lost. Long story short, within 48 business hours, Ashley had two great job offers (one of which, outside of the Education field, she accepted!) and a severance check that we didn’t need for our usual budget. It went straight to our savings/baby fund. We won’t even miss a paycheck.¬† What doesn’t get used for our fertility treatments will be money in the bank! There were definitely a couple of days of panic there, but we came though better off in the end.

Yesterday, Nicolas had a court date for his assault charge. Even though everyone agrees that the assault charge was bogus, the judge and PO decided that this was the perfect opportunity to throw the book at him and get him the help that he needs. He was arrested and will spend this weekend in jail. On Monday, CPS will pick him up from jail and interview him, then they will come here to the house to inspect it. Once the inspection is done, they will release him to us. The plan (and the court, CPS, and everyone in the family) knows that this is going to be a temporary arrangement, only until Nicolas and Traci are ready to live together again. We are feeling much more positive about this than we were last time, because Nicolas knows that we are his last option. If he fails his court ordered drug tests, does not attend his court ordered counseling or misbehaves at our home, CPS will send him to Canyon State Academy, a military style boy’s school. With that and more jail time hanging over his head, we are feeling good about how his attitude will be when he comes here. Of course, if things don’t go well, he will leave. Ashley and I talked about it, and if he is doing well we wouldn’t mind him being here indefinitely. I’m trying not to think too far into this or too far ahead, because we don’t know how he is going to be when he comes out of jail. I spent all day moving our old bed and bed frame down to his room and getting it cleaned and organized for when CPS comes on Monday. It’s actually a pretty sweet room! I can only hope that this goes well. No one seems to have faith in this kid, and I know that it’s hard to, but you have to do what you have to do for family.

So, after his court date, I got a call from my doctor telling me that all of my pap was normal and my cervical samples were negative. Just waiting for my blood work results. We should have them next week!

And here is the biggest news: I STARTED MY PERIOD TODAY! I called Dr. Nemiro today, and he said to come in Monday for an ultrasound and for a prescription for clomid. With clomid cycles, insemination occurs about 14 days after the start of the last period, and a pregnancy test is done about two weeks after that. So… we can assume that four weeks from today we will be finding out if we are pregnant or if we are going to do this all again. Fingers crossed for a pregnancy on the first try! ūüėÄ

Phew, what¬† a week… On top of all the stress, my last cigarette was at 10pm on Wednesday night. I’ve been cigarette free for 70.5 hours. I keep hearing people say that once you get through the third day, you’re good. I don’t know about that, but I sure hope so, because this shit sucks! While we were smoking our last cigarettes with Mommy Mom, Eddie, and Josh, I said “Now I have a reason to quit smoking.” Ashley said, “Like not getting cancer wasn’t a good enough reason?” My reply was, “Yeah, but now I’m not getting cancer… for my baby!” That’s the truth, too! I drive safer, I think more about all the things I put in my body… I got some prenatal vitamins today! I keep mentioning that change in worldview… and there it is again. I think of things for my baby before I think of them for myself… and I’ve been spending a shitload of time on Pinterest checking out newborn and pregnancy photography. I’m still doing lots of reading about natural birth and looking at my options for a midwife as opposed to an OB. There is still a lot to do, but we have time!

This is going to be a wild ride…

D

New car!!!

The only car that D has owned was the good ole’ 92 Honda Accord with a whopping 270,000 miles on it…this bad boy leaked oil, smelled like exhaust, and honestly just wasn’t a safe vehicle..

We’ve been looking at cars for a long time and went back and forth on whether we would buy an older car outright or finance a ¬†new car…

We decided to finance a new car because our little bundle of joy is coming and we want to have 2 safe & reliable cars!

The process started last weekend when we went to a Mazda dealership and stupidly purchased a 2007 Mazda 3 with 70k miles on it…luckily I had an upper hand on them and we were able to return the car with no issues!!! ūüôā

The past weekend we woke up bright and early to begin looking at cars. Devan was already exhausted with the process, and honestly I think she felt that because of her credit score she was never going to be able to get into a nice car. Thankfully we are surrounded by love/support and we were able to get help from my family so that we could  get a nice and reliable car!!

After about 3 hours of douche bag salesman and crappy overpriced cars we got to the Kia dealership. A few people in my family have had Kias and they highly recommend them! Once we got there I told the salesman what we were looking for and he said that it was likely to leave today with a brand new 2012 Kia Rio or Kia Soul!!! After looking at both of them we decided to get the Soul!!!! To Devan’s surprise we qualified to the Soul AND got a lower interest rate and similar monthly payment as we did with the Mazda!!!

Ready for the best part? This car is PERFECT for a carseat!! I can’t wait until my son (I keep saying my son, because I want a boy) is strapped in the back and I can sing him songs while we cruise around!!! The car also has a 9.5 safety rating…which is a HUGE plus for us!!! We’re both so excited about it and can’t wait to bring our baby home in our nice cars!!!! ūüėÄ

Here is Devan so happy about getting the car!!! She named him Padfoot!

Our Blog is Now Public!

Since my parents have now been told and our family/friends are all aware of our attempts to have a baby, I have made our blog public! I don’t plan on posting a link to FB or anything, but now you don’t have to be a WordPress member to see our blog. If you want to stay up to date, you can put your email address in on the right hand side of the page and you will get an email when we post new entries!

I am so excited! ūüėÄ