First off, delivery went well from my standpoint, I didn't need anything afterward for the pain, but took Ibuprofen for the inflammation. This where I am going to give a little bit of a pain history backstory. In January of 2010, I went to the doctor thinking I had pneumonia. It had hurt to breathe and I had been sick with a bit of a cold for a couple of weeks. When I went in, they couldn't find anything on the x-ray, and put me on antibiotics and pain meds. After a week, the pain was worse, I went back in, and they upped my antibiotics to a z-pack, and gave me something for the pain. Another 2 weeks of pain, and I was referred to a pain specialist. From there, I was treated for everything from a torn muscle in my chest, to a possible rheumatological condition (Ehler's Danlos syndrome), to referred pain from a car accident from when I was 15. I had an MRI, a CT scan, several blood tests, an EKG, a few X-rays, a musculo-skeletal ultrasound, but they found nothing concrete. My doctor finally decided that I had a connective tissue disorder and costal-chondritis, or tears in the cartilage that connects my ribs to my sternum, and doesn't heal in a normal amount of time due to lack of blood flow to the cartilage joints. Because of this, I have had pain managment issues the entire time. When I found out I was pregnant, I was on a cocktail of Naprocen, Nucynta, and an opiod pain patch called Butrans. I dropped all of them on the same day (which I later learned I wasn't supposed to do) and went through about 4 days of withdrawls. I was shaking, cold, sweating, and vomiting. It was the worst thing I'd ever been through, until I had to deal with the pain without meds.
I gave up on meds through my entire pregnancy except for 5 or 10 Norco total, which my OB prescribed in my 3rd trimester. Instead, for therapy, my pain specialist did injections of sugar water into my costo-sternal joints every other week, to elicite an inflammatory response, in hopes that my body would prioritize the area and heal itself. I was in constant pain, always at a 5 or 6 on the pain scale, and often would go higher at night. Because of this, I was on a leave of absence from my job at T-Mobile from July to January. In January, I came back on a part-time basis, because my disability insurance had denied my claim, and we were unable to afford our bills on Trevor's checks alone. It didn't last long. I was unable to even put in the 30 hours a week that I had requested to come back to, and by the first week of February, was back on leave.
After having Oakley, I was going to be able to go back on a pain managment regimen that was supposed to allow me to go back to working full time, and I was anxious to get back to work and feeling like a contributing member of society. After having Oakley, I was a little unsure of how the return to work would go. I contacted my HR department after he was born, to see if I could come back to work before my maternity leave was over, and use the leave after Oakley got to come home from the hospital (thinking he would only be there a month or two). They told me that wasn't an option, so I took my full maternity leave...I was scheduled to go back to work on June 2nd.
On May 31st, Trevor and I were able to stay in one of the rooming in rooms at the NICU. I was in some pain, and since it was after 10 pm, we went downstairs to the ER to see what was causing it. It was my regular costo-chondritis, but also in my backside of my ribs. The doc examined me, and told me I had a muscle spasm, and prescribed me Naproxen. They didn't have any on hand, so they were going to just send it up to our rooming in room when it came in. Walking back to the NICU, I knew it was worse than just a muscle spasm. I was freaking out, because I could barely inhale without my body jerking and causing me a huge amount of pain. We tried to go to sleep, but I couldn't lay down. Everytime I went to lay down, I couldn't breathe, and I started to panic. I went into a panic attack, and couldn't breathe, felt hot, and couldn't talk because I was too overwhelmed. About an hour after they sent the Naproxen up, I was so out of it that Trevor decided to call the NICU nurses to take me down to the ER. Once there, they shot me full of dilaudid so that I could calm down and talk. When I told them what was going on, they sent me for a chest x-ray and did an EKG. A nurse came in to the room after a while and started hanging antibiotics. I asked her why, and she told me that I had a UTI. I asked her if they found that from the bloodwork they had done, since I hadn't peed in a cup and she stopped and went to double check. When she came back, she told me that the UTI was next door, and that I actually had pneumonia! I told her I'd rather have the UTI, but they sent me home with the diagnosis of bronchial-pneumonia in my left lung, along with a week's prescription of antibiotics and an order to stay out of the NICU for 48 hours. They stuck a nebulizer on me for a dose of break-up-the-crap-in-your-lungs. I was pretty confused about having pneumonia, since I hadn't had a cold or cough or anything for over 6 months. I finished the antibiotics, and still felt awful, so I went to a doc in the box. I insisted that they do another x-ray, so that I could see this pneumonia for myself. The pneumonia was now in both lungs, not just the left one. He sent me home with another prescription, this time for a different anti-biotic, and a refill in case I still didn't feel up to par after the first course.
By now, we had gotten Oakley's diagnosis, and were planning to come to Seattle Children's, we just didn't know when. With my medical issues, this extended my leave of absence through July. I never ended up coughing, other than after the nebulizer, and still never got a cold. I had two days left on my refilled antibiotic, and was hurting more and more. I had been sleeping upright on the couch for a few nights, and couldn't even get comfortable that way. That night, I had almost passed out, and Oakley's nurse, Nichole, had told me to go down to the ER. I had Trevor come pick me up and take me home, but Trevor took me to the Emergency room again, this time at the hospital that was in Meridian (closer to our house than the hospital Oakley was staying in). They rushed me in (one of the benefits of pain in your chest is that you don't have to wait, you get moved to the front of triage) and did another EKG, and then an x-ray. Both came back normal; no pneumonia this time. The doctor was still concerned about my pain, so he ordered a CT scan. I hadn't gotten anything for the pain up to this point, they were able to do everything with me being upright. I told them I couldn't lay down, and they tried anyway. I freaked out, was screaming and crying, so they sedated me and did the CT. The doctor came back and told us he was admitting me. I asked what for, and he told me that I had 3 blood clots in my lungs. One smallish one in each lung, and then a large one in my left lung that had actually infarcted, and caused some tissue death. We asked to be transferred to the downtown location, to be closer to Oakley, and I got to go on my first ambulance ride ever. They drew a bunch of bloodwork on me once I was admitted, and found out that I had anti-phospholipid antibodies as well as systemic lupus erythrombosis (which has been debated between docs as to if this is lupus, or just the blood clotting disorder that people with lupus have). I was admitted for 5 days, sentenced to anti-coagulation therapy for life, and was told that I should have never been able to carry a child to term, that I should never get pregnant again, and that Oakley's infarcted placenta was very likely caused by my blood clotting disorder. Trevor has Factor 5 Leiden mutation, which is a blood clotting disorder, that was passed on to Oakley, and so now, all 3 of us have blood clotting disorders (Oakley has a blood clot in his left shoulder, Trevor had a blood clot in the thalamus region of his brain when he was 14, so we might as well be the blood clot gang). Trevor and I would now be unable to be bone marrow donors to Oakley, so the match would have to be from an unrelated donor. They made me watch a few movies that starred people in their "Golden Years" living on Coumadin (the anti-coagulation drug I'm on). One gentleman gave up riding his bike, and has taken up bridge! Yeah, right. So, they told me I'm not supposed to do anything that could possibly cause bruising. No skiing, riding bicycles, horse-back riding, softball, volleyball, floating the river, sleeping on the ground, wearing high heels, walking up or down stairs, shutting drawers, walking in rooms with doorknobs...yeah, like that is going to work.
Nonetheless, I'm supposed to be super careful, because if I cut myself, I might not stop bleeding. They also recommend I wear a medical alert bracelet, you know, so I can look cool and people will know I'm as fragile as a 70 year old man on blood thinners.
This stint warranted another leave of absence extension, I got released from the hospital on July 2nd. They got me worried about every little thing, and told me if anything seemed off, or if I had any symptoms of anything, that I needed to come in to the ER. My wrist swelled up and my ankle did too, I came in to the ER, they told me I probably have blood clots there, but since I'm already on blood thinners, there's nothing more they could do. After that, I figured that anything that happened was going to be attributed to my PEs (Pulmonary Embolism or Emboli for plural) so there was no point in going in unless I was bleeding out.
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| an awful picture of me, but I was in so much pain, I didn't even care |
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| I'm on telemonitors, but visiting Oakley while we're both patients |
In August, I started having more and more pain, which I attributed to the PEs. It was in the same area, and I had tons of pain killers that were prescribed to help with the pain from the PEs. I ended up getting a high fever, and throwing up from the pain one night. I called my doctor's office for an emergency appointment, and when I went in, my fever was gone, I was cold, and my fingers and toes were turning blue. She made me pee in a cup, and told me that I had a UTI (I'll take it over pneumonia, even if it never did hurt to pee!) and prescribed more antibiotics. She told me if the pain got worse, if my fever returned, or if I started vomiting again, to go into the ER though. We went across the street to visit Oakley, and an hour into our visit, all three started happening. I went downstairs to the ER, and after my usual EKG and chest x-ray, they admitted me, saying they weren't sure what was necessarily going on, but with my history, they wanted me in the hospital until they found out. The next morning, I got a CT scan with contrast, and we found out I had pylonephritis-basically a kidney infection- and that I was septic. They also found another blood clot, this time in my right iliac vein in my pelvis. They kept me on antibiotics and oxygen (my O2 sats were pretty low) until I was over my fever and breathing through the night without dropping my saturation levels. I got discharged with an order to see my doctor before I went to Seattle, and to make sure I found a doctor in Seattle as soon as possible, so they could get all of my medical records over.
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| hives from Vanc, breakout from paper tape |
When I went in to the doctor, I ended up seeing a different provider in the office, and she told me that my doctor thought my SLE blood test was a false positive. They said that I would have to wait 6 months and retest, but that it didn't matter. Well, it matters to me. If all these tests are false positives, then we have no idea why I'm clotting (by the way, when I went in to my doc in Seattle, she told me the lump in my vein in my wrist was another blood clot, which I shouldn't be able to get after being on blood thinners-I have developed it in the last month). I would really like to know for sure if Oakley is our last baby, or if I'll get the chance to have a baby in the future (we would have to do in-vitro to avoid passing the defective IPEX gene on) and actually get that bonding experience that Oakley and I missed out on, since I didn't even get to hold him for the first 3 days of his life.
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| hives from Vanc |
So for now, I'm just managing my PT/INR levels (my levels for coagulation time and checking my Coumadin level) and avoiding any bruising or bleeding I've developed allergies to paper tape, Morphine, Vancomycin, and Zithromax in the 10 days I've spent in the hospital. Poor Trevor has had to deal with his family being in the hospital in different rooms a couple of times now, and I'm trying to take good enough care of myself that he doesn't have to visit two different hospitals!
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