It's not very apt, but I'm renaming the man formerly known as Dr. Dickhead. His new name is Dr. Low Expectations--because he was so bad over the weekend, and totally improved his demeanor and candor and, well, his news! My life's motto is "low expectations are the key to happiness." In this case, I wish I had not had such low expectations as I did last Friday, when I honestly thought I might die or at least have a horrible life-threatening autoimmune disorder. If he'd told me last Friday that my thyroid was screwed and I would have to get tested every week and have thyroid surgery and be on high doses of steroids for 3 months, I would have thought that was pretty bad. But when you prepare someone for lupus or death, it doesn't sound so bad! Today he was all smiles and laughs and jokes and good news, so now I admit that I respect and appreciate him. He seems to have taken a special interest in me as a freak case of an extremely rare and little-documented side effect of a medication, and I will take it!
The end of the story on the thyroid is that yes, the CT scan did screw my thyroid, but it was probably the only option they had to see what was going on. The most likely scenario at that time was a pulmonary embolism, and the CT scan was the only way to rule that in or out. Now my thyroid may start going out of control but frankly I had already decided to have surgery after I was done breastfeeding. Now I might be able to have it a little sooner, which would be fine too. And then I won't ever have to worry about these anti-thyroid drugs again. Hooray!
Thursday, September 29, 2011
GOOD news
I just got back from my appointment with Dr. Dickhead, whose name really needs to be changed to reflect his new tone. How about Dr. Low Expectations?
The bottom line is that my labs are all in, and there is absolutely no sign of any autoimmune or generalized inflammation problems at all. In fact, I have a lower than normal amount of inflammation in my body. This pretty much conclusively rules out lupus, Waggoner's disease, Goodpastures disease and a bunch of other rheumatoid problems that I was especially worried about. The best guess they have at this point is that the hemorrhage was caused by the thyroid medication I have been on. Mine would be probably the one case in the country in a year caused by this drug. Dr. Low Expectations said he has seen two other cases this year of this (diffuse alveolar hemorrhage), both caused by a single drug (Plavix, in those cases). He said I performed better on my pulmonary function test than he does, and that my lungs are likely back to normal or near it already.
As for the steroids, he says that because this is such a rare occurrence (the hemorrhage), they do not have great data about what dose or length of steroid treatment will solve it, so he wants to make sure they are effectively treating the inflammation and solving the problem. I feel very comfortable with that explanation and ALSO with breastfeeding again, sooner rather than later. Dr. Low Expectations admitted today that he'd done some research and very very little of any of the medications I am on gets into breastmilk, and assumed that I would resume immediately. He answered all of my questions thoughtfully and completely, and Jeff's too. He took seriously my concerns and said "I don't know" fairly frequently, which I always appreciate. No one knows everything, and I'd rather a truthful "I don't know" than BS.
So now my biggest concerns are abnormal hair growth, insomnia, hyperness and irritability, and sweating, all possible side effects of the steroids. I'm sure we'll have some nursing hiccups as we get back in the swing of things after a week of bottles, too. But I don't care about any of that--we'll work through it. Just please don't make fun of my moustache and dampness. Truthfully I've always times when I've been an irritable hyper bitch, so good luck trying to sort that out. And may God help the person who says, "was she ALWAYS that hairy and sweaty, or is it just the steroids?"
I go back to see Dr. Low Expectations in five weeks for a new CT scan and pulmonary function test, at which time I will start weaning off the steroids. In the meantime, I'm watching Theo sleep on my dad and I'm going to nurse him when he wakes up. I can't wait.
The bottom line is that my labs are all in, and there is absolutely no sign of any autoimmune or generalized inflammation problems at all. In fact, I have a lower than normal amount of inflammation in my body. This pretty much conclusively rules out lupus, Waggoner's disease, Goodpastures disease and a bunch of other rheumatoid problems that I was especially worried about. The best guess they have at this point is that the hemorrhage was caused by the thyroid medication I have been on. Mine would be probably the one case in the country in a year caused by this drug. Dr. Low Expectations said he has seen two other cases this year of this (diffuse alveolar hemorrhage), both caused by a single drug (Plavix, in those cases). He said I performed better on my pulmonary function test than he does, and that my lungs are likely back to normal or near it already.
As for the steroids, he says that because this is such a rare occurrence (the hemorrhage), they do not have great data about what dose or length of steroid treatment will solve it, so he wants to make sure they are effectively treating the inflammation and solving the problem. I feel very comfortable with that explanation and ALSO with breastfeeding again, sooner rather than later. Dr. Low Expectations admitted today that he'd done some research and very very little of any of the medications I am on gets into breastmilk, and assumed that I would resume immediately. He answered all of my questions thoughtfully and completely, and Jeff's too. He took seriously my concerns and said "I don't know" fairly frequently, which I always appreciate. No one knows everything, and I'd rather a truthful "I don't know" than BS.
So now my biggest concerns are abnormal hair growth, insomnia, hyperness and irritability, and sweating, all possible side effects of the steroids. I'm sure we'll have some nursing hiccups as we get back in the swing of things after a week of bottles, too. But I don't care about any of that--we'll work through it. Just please don't make fun of my moustache and dampness. Truthfully I've always times when I've been an irritable hyper bitch, so good luck trying to sort that out. And may God help the person who says, "was she ALWAYS that hairy and sweaty, or is it just the steroids?"
I go back to see Dr. Low Expectations in five weeks for a new CT scan and pulmonary function test, at which time I will start weaning off the steroids. In the meantime, I'm watching Theo sleep on my dad and I'm going to nurse him when he wakes up. I can't wait.
Wednesday, September 28, 2011
Wednesday update
I did my pulmonary function test today and performed well on all the tests, which we think means that my lungs are back to normal in terms of their function. I feel like things are moving forward on several fronts but the uncertainty of what caused this, what the impact of the CT scan I received will be on my thyroid in the future, and what my next steps will be, is really weighing on me. There are so many possibilities of what could be going on and it seems overwhelming. Meanwhile I feel mostly fine and enjoy every minute with the boys and with our family, but the stress is really difficult to bear. I had more labs done today and suddenly have an appointment with Dr. Dickhead tomorrow afternoon, scheduled at 4:30 this afternoon, so I am wondering why this appointment has been scheduled when they told me at 3:30 that I would not meet with him for five weeks. The nurse who called said he wanted to give me an opportunity to ask any questions I had. I don't really know what that means but whatever it means, I would like to know what he knows and understand what his plan is for assembling more information and working toward making me healthy. I know that he and my endocrinologist spoke on the telephone for 45 minutes about me earlier today, but of course I have no idea what that conversation entailed. The point is, I don't know much more than I did at the beginning of the day. I feel better physically but I. just. want. to. know. more.
The boys are great and we're lucky we've had so much help with them--my mom has been here all week and Jeff's mom was here today. My dad is coming tomorrow and we may have other company as well. I think we may have a need for dinners for next week and I may also need more childcare during the day if I continue to have appointments for doctors and labs and procedures. If anyone can offer any help in those departments for next week, please let me know. We're taking it day by day but it would be great to know that someone might be available. I promise, the boys are angels and will crack you up!
Again, thanks for the calls and emails, the breastmilk and cookies and formula and everything else. They really do buoy my spirits and remind me that good things can happen when people spend time thinking, praying, and sending good vibes our way.
The boys are great and we're lucky we've had so much help with them--my mom has been here all week and Jeff's mom was here today. My dad is coming tomorrow and we may have other company as well. I think we may have a need for dinners for next week and I may also need more childcare during the day if I continue to have appointments for doctors and labs and procedures. If anyone can offer any help in those departments for next week, please let me know. We're taking it day by day but it would be great to know that someone might be available. I promise, the boys are angels and will crack you up!
Again, thanks for the calls and emails, the breastmilk and cookies and formula and everything else. They really do buoy my spirits and remind me that good things can happen when people spend time thinking, praying, and sending good vibes our way.
Some pictures to document how big and strong our gorgeous boys are getting! The upshot of all of this is that the grandparents have been spending lots of time with the boys, which is awesome for everyone. Theo and Beckett have been troupers throughout and are always full of smiles, laughs, and good spirit.
Tuesday, September 27, 2011
Getting there
Today was, finally, a good day. It started out with a phone call to my endocrinologist to find out my labs yesterday. Everything is fine, which is very reassuring. She also asked me if I wanted to try a colleague of hers who is a pulmonologist. I said yes, and she said, "I thought so--I already put in a call to him." Later she called me with his name and said his office would be getting in touch with me to set up an appointment in the next two weeks, even though it usually takes months to get in with him. I now have an appointment with him Friday to see where we are and where we go from here. She also suggested I try an anti-anxiety medication while I am on the steroids because it makes many people (example: me) hyper and irritable. I feel like if I had not been hyper and irritable before going to the hospital (which made me go, otherwise I would have gone to sleep), while I was in the hospital (where I kept telling everyone that I needed to see an endocrinologist and a lactation consultant), and since I have been home, I would have gotten much worse care than I did. So I think the extra anxiety is working for me right now, and I'm sticking with it.
I have to pick up copies of all my records from the hospital and get a specialized lung function test tomorrow but I think then the new pulmonologist will have all the information he needs. I may decide to go back to Dr. Dickhead from the hospital or I may choose to stay with the new guy, but I think a second opinion is good. Sara, who works at Upstate, confirmed that Dr. Dickhead is a brilliant doctor (never in doubt) but has too many things going on between teaching and various clinics and programs he directs, and also that he is super-arrogant. No kidding. I also do not feel comfortable with not seeing Dr. Dickhead for 6 weeks while I am on a super-high dose of steroids. I'm glad to have the lung test tomorrow and then talk to the doctor Friday. The dose continues to bug me, because everyone from the nurses at the hospital to the pediatrician to my primary care doctor to Dr. Dickhead's own nurse thinks it is a crazy high dose to be taking for three months. The Wegmans pharmacist actually called this morning to say he couldn't get through to Dr. Dickhead and that he continued to be very concerned about the high dose of steroids, so I think it is possible that my dose will be lowered by the new guy.
I also saw my primary care doctor this afternoon, which was great. She examined me and, as always, my heart and lungs sound great--as they did while I was actively hemorrhaging. My oxygen level was also great in the office. She gave the new pulmonologist a good recommendation and helped coordinate the lung function test. It feels good to have her on board, so that she can help oversee everything that's going on. She assured me that I am going to be fine. She also suggested anti-anxiety medication. I was like, I hear ya, lady, but this is working for me! And if you think I'm anxious, you should see my family! Do you think I would have gotten same-day appointments at my endocrinologist and primary care doctor and an appointment for the lung function test if I hadn't sounded crazy on the phone?
Now that I have an appointment set up with the new pulmonologist Friday and an appointment for the lung function test tomorrow, plus an appointment to get my thyroid levels tested next week and an appointment with my endocrinologist the week after next, and a plan to check in with my primary care doctor throughout, I feel much much calmer. I feel like I've done everything I can to get the best people working on this, and I'm overwhelmed with gratitude that I found such great doctors to help guide me through this process.
On that note, does anyone have any ideas for something I could do for these wonderful doctors? I made cookies for my touchy-feely OB at my 6-week post-partum visit, but that doesn't really seem appropriate for these people.
The best news of the day, though, is that our pediatrician has green-lighted resuming breastfeeding with the steroid dose that I am on. I have gotten great information from Adrienne and Claire and had felt comfortable but didn't want to go against the ped's advice. She called some medication/breastfeeding hotline at Strong Memorial Hospital in Rochester and recommended that I take the medication, then pump and dump at 3 and 6 hours or just 6 hours (if it's at night and the babies are still sleeping). I feel comfortable with taking these drugs and continuing to take care of my babies in the best way I can, so now I just have to figure out about whether the remainder of the drugs I received in the hospital are gone before I actually start nursing again. The most important thing is that I am not going to have to wait 3 months to start nursing again, and this hell of bottles and formula and washing bottles and pumping parts seemingly CONSTANTLY is going to abate somewhat, and more importantly, that I can go back to nursing my babies. When they are on bottles I feel like I don't really know what they need when I can't nurse, and that my best technique for just about any fussiness or upset, putting 'em on the boob, isn't available. They use my breasts as pacifiers and food, and without my breasts, they have to choose one or the other--or we do as we struggle to figure out what they want. The other amazing thing about feeding them with bottles, especially as they days have gone by since I have nursed, is that I realize the immense quantity they actually consume. I had no idea!
We have been extremely blessed to get breastmilk donations from dear friends Sara, Sarah and Kelly. It's made the (now temporary!) transition to formula much easier for me, emotionally, to know that our dear friends are making food for the babies. They have adapted super-well to the formula and the bottles (save one odd bottle) and the strangest discovery we made tonight was that it appears they have a more difficult time taking my milk from a bottle. They both fussed and got upset when given a bottle of my milk (we found a random one that had been lost in the freezer). My mom thinks that it's confusing to have my milk in a bottle because it doesn't belong in a bottle, whereas all that other stuff is fine to have in a bottle. I don't know, but it makes me wonder whether all of this breastmilk really tastes much different. Breast milk taste test, anyone? All I know is that mine is way fattier than any we have been donated, which I think indicates how much more fat I have in my diet than my healthier lactating friends.
After I talk to the pediatrician tomorrow I think I will feel fully comfortable with starting to nurse again. I haven't figured out if I will take the steroids at night and do a bottle at night, or whether I will take them in the morning and give bottles during the day. It's probably easier to give one bottle (or possibly none, depending on how long they sleep) at night and set an alarm to pump six hours after I take the medication, rather than dealing with mixing formula and washing bottles during the day while I'm by myself. I haven't had the insomnia that many people experience with steroids, so I hope it won't be a problem to move my dose to the evening and then go to sleep right away. We've decided to wait until I meet the new pulmonologist Friday because I think it's possible my dose is decreased after our meeting and my test results are back, so we'll do bottles in the meantime. But I sincerely hope I will be back to nursing within a week or so.
Thank you, everyone, for the food and the breastmilk and the formula and the calls and emails and all the prayers and thoughts. At difficult times in the last five days I have closed my eyes and thought of all the good vibes coming at us from literally all directions, and I have felt calmer. I feel so lucky to have you all in our lives.
I have to pick up copies of all my records from the hospital and get a specialized lung function test tomorrow but I think then the new pulmonologist will have all the information he needs. I may decide to go back to Dr. Dickhead from the hospital or I may choose to stay with the new guy, but I think a second opinion is good. Sara, who works at Upstate, confirmed that Dr. Dickhead is a brilliant doctor (never in doubt) but has too many things going on between teaching and various clinics and programs he directs, and also that he is super-arrogant. No kidding. I also do not feel comfortable with not seeing Dr. Dickhead for 6 weeks while I am on a super-high dose of steroids. I'm glad to have the lung test tomorrow and then talk to the doctor Friday. The dose continues to bug me, because everyone from the nurses at the hospital to the pediatrician to my primary care doctor to Dr. Dickhead's own nurse thinks it is a crazy high dose to be taking for three months. The Wegmans pharmacist actually called this morning to say he couldn't get through to Dr. Dickhead and that he continued to be very concerned about the high dose of steroids, so I think it is possible that my dose will be lowered by the new guy.
I also saw my primary care doctor this afternoon, which was great. She examined me and, as always, my heart and lungs sound great--as they did while I was actively hemorrhaging. My oxygen level was also great in the office. She gave the new pulmonologist a good recommendation and helped coordinate the lung function test. It feels good to have her on board, so that she can help oversee everything that's going on. She assured me that I am going to be fine. She also suggested anti-anxiety medication. I was like, I hear ya, lady, but this is working for me! And if you think I'm anxious, you should see my family! Do you think I would have gotten same-day appointments at my endocrinologist and primary care doctor and an appointment for the lung function test if I hadn't sounded crazy on the phone?
Now that I have an appointment set up with the new pulmonologist Friday and an appointment for the lung function test tomorrow, plus an appointment to get my thyroid levels tested next week and an appointment with my endocrinologist the week after next, and a plan to check in with my primary care doctor throughout, I feel much much calmer. I feel like I've done everything I can to get the best people working on this, and I'm overwhelmed with gratitude that I found such great doctors to help guide me through this process.
On that note, does anyone have any ideas for something I could do for these wonderful doctors? I made cookies for my touchy-feely OB at my 6-week post-partum visit, but that doesn't really seem appropriate for these people.
The best news of the day, though, is that our pediatrician has green-lighted resuming breastfeeding with the steroid dose that I am on. I have gotten great information from Adrienne and Claire and had felt comfortable but didn't want to go against the ped's advice. She called some medication/breastfeeding hotline at Strong Memorial Hospital in Rochester and recommended that I take the medication, then pump and dump at 3 and 6 hours or just 6 hours (if it's at night and the babies are still sleeping). I feel comfortable with taking these drugs and continuing to take care of my babies in the best way I can, so now I just have to figure out about whether the remainder of the drugs I received in the hospital are gone before I actually start nursing again. The most important thing is that I am not going to have to wait 3 months to start nursing again, and this hell of bottles and formula and washing bottles and pumping parts seemingly CONSTANTLY is going to abate somewhat, and more importantly, that I can go back to nursing my babies. When they are on bottles I feel like I don't really know what they need when I can't nurse, and that my best technique for just about any fussiness or upset, putting 'em on the boob, isn't available. They use my breasts as pacifiers and food, and without my breasts, they have to choose one or the other--or we do as we struggle to figure out what they want. The other amazing thing about feeding them with bottles, especially as they days have gone by since I have nursed, is that I realize the immense quantity they actually consume. I had no idea!
We have been extremely blessed to get breastmilk donations from dear friends Sara, Sarah and Kelly. It's made the (now temporary!) transition to formula much easier for me, emotionally, to know that our dear friends are making food for the babies. They have adapted super-well to the formula and the bottles (save one odd bottle) and the strangest discovery we made tonight was that it appears they have a more difficult time taking my milk from a bottle. They both fussed and got upset when given a bottle of my milk (we found a random one that had been lost in the freezer). My mom thinks that it's confusing to have my milk in a bottle because it doesn't belong in a bottle, whereas all that other stuff is fine to have in a bottle. I don't know, but it makes me wonder whether all of this breastmilk really tastes much different. Breast milk taste test, anyone? All I know is that mine is way fattier than any we have been donated, which I think indicates how much more fat I have in my diet than my healthier lactating friends.
After I talk to the pediatrician tomorrow I think I will feel fully comfortable with starting to nurse again. I haven't figured out if I will take the steroids at night and do a bottle at night, or whether I will take them in the morning and give bottles during the day. It's probably easier to give one bottle (or possibly none, depending on how long they sleep) at night and set an alarm to pump six hours after I take the medication, rather than dealing with mixing formula and washing bottles during the day while I'm by myself. I haven't had the insomnia that many people experience with steroids, so I hope it won't be a problem to move my dose to the evening and then go to sleep right away. We've decided to wait until I meet the new pulmonologist Friday because I think it's possible my dose is decreased after our meeting and my test results are back, so we'll do bottles in the meantime. But I sincerely hope I will be back to nursing within a week or so.
Thank you, everyone, for the food and the breastmilk and the formula and the calls and emails and all the prayers and thoughts. At difficult times in the last five days I have closed my eyes and thought of all the good vibes coming at us from literally all directions, and I have felt calmer. I feel so lucky to have you all in our lives.
Monday, September 26, 2011
and a little bit of good news...
After carefully watching Beck roll over again and again last week, Theo broke out the rolling over Friday, while I was at the hospital. Grandma Joanie was the only one who saw it and he took a few-day break from doing it again but I saw it today and it looks like he definitely has it down. No video yet (Theo, that's what happens when you develop a new skill when Mommy has some other things on her mind!) but nonetheless, we cheer his growth!
Another day
Today was my first full day back from the hospital. I didn't sleep great last night, I think because of the steroids, but the boys slept great and that's what counts. We're so lucky they've taken to bottles and formula so well; I know that doesn't always happen. They are happy and healthy as always and my mom's been taking great care of them today as I have spent time on the phone making appointments and talking to doctors and getting out to appointments. I was able to get in to see my endocrinologist this afternoon who gave me the pretty awful news that the radioactive iodine that was injected into my IV so that they could do the contrast CT scan early Friday morning would have been uptaked directly into my thyroid, which will now be used as fuel for my overactive thyroid to make thyroid hormone out of control. Which is a problem now that I can't take the medication I usually take to control my thyroid, and the permanent solutions are not possible so close to this scary episode--I can't have surgery because of the recent lung bleeding and can't do radioactive iodine treatment because my thyroid is already full of iodine. The only good thing is that the steroids for the lung hemorrhage are the exact same treatment I would get if my thyroid was out of control and couldn't take those medications, to shut off my immune function. So as long as I'm on the steroids, according to the endocrinologist, I'm safe for the thyroid. Ugh. I've learned so much more than I ever would have wanted to know about all of this.
I feel really good about the endocrinologist, though, and her whole staff was awesome and responsive. The doctor gave me a hug at the end. I feel like she's going to get to the bottom of this even if she has to break some legs to get there, and it's great to have her on my side. She is very angry at the pulmonologist and the hospital staff who did not even consider my thyroid condition (Graves disease) when giving me the CT scan and the radioactive iodine. She said she was going to call him and find out what's going on, and keep very on top of my thyroid in the meantime. She said she has never seen or heard of this kind of reaction to the thyroid medication, though she did not rule it out. It was a little stressful getting my blood drawn because my veins have been totally destroyed by so many days in the hospital and all the blood sucked out of me, but the phlebotomist did a great job and was very sweet to me.
I also had a great conversation with our pediatrician this evening. She was very concerned about my health and just kept assuring me that the boys have gotten awesome breastmilk for four months and that formula will be just fine if that's what we decide to do. She's going to call some breastfeeding/medication hotline at Strong in Rochester for me to find out if the alternative steroid (prednisilone) would be better than what has been prescribed to me (prednisone) or at what levels it would be safe in breastmilk. She was just very kind and very caring, and I felt immensely relieved after talking to her. We also had a very funny conversation about the kids' vaccines. I had decided about two weeks ago, after conversations with Claire and Adrienne and other people I really trust, that I was going to vaccinate the kids for everything at our next appointment in October. Now it is especially important to vaccinate the kids because my immune system is compromised, so I mentioned that. The pediatrician and I had previously had a conversation about spacing out the vaccines. She paused and said, "I promised myself I wasn't going to bring that up. You have too many other things on your mind. But, yes, now that you did, that is important." She's great, and I feel grateful to have her on my team.
I'm still undecided on the pulmonologist. I partially hate him because he so disregards my concerns about breastfeeding and questions about risks and alternative treatments. But on the other hand he did, kind of and in an understated way, admit when he discharged me that he had done some research and there are variations among how the steroids are leached into breastmilk and that it might be possible to breastfeed on even a high dose of steroids with some precautions. And I am grateful that he did the brachioscopy with no observed complications and (I hope) correctly diagnosed the problem. My biggest lingering concern is whether the dose of steroids I am on (60mg/day in one morning dose) is too high and for too long a time. When my mom picked up the meds from Wegmans this morning, the pharmacist came out to ask what they were for and why I had to take such a high dose, that he had never seen a dose so high for so long. When I told the endocrinologist that the pulmonologist's plan was to take them for 3 months, her eyebrows shot up and she said she had never heard of such a long dose. And when I called the pulmonologists' own nurse today to ask about scheduling a pulmonary function test that was supposed to be done at the hospital but they didn't have anyone there to do it all weekend, the nurse said, "for six WEEKS??" His own nurse. I also begged her to help me work with him on the breastfeeding issue, and when I told her that he had told me that I had to stop breastfeeding and that formula was the same thing, she paused for a VERY long time and then kind of harumphed and said she would page him right away. She did not get back to me today, though, so I guess my day tomorrow will again be calling around and trying to get people to get back to me. I also have an appointment tomorrow with my primary care doctor, who I am hoping will help me sort through all of this and make sense of the whole picture.
My attitude today is, I need to get healthy. Above all else. The breastfeeding is a distant second priority until I make sure I'm on the right track to be healthy. I'm continuing to pump and dump to keep up my supply but may slow that down a bit to preserve my strength. I lost 10 pounds between Friday in the hospital and today at my endocrinologist, and I think my body's working really hard just to keep it together. Pumping a half gallon of milk a day has to stress my reserves. I just want to try, if I can, to keep the milk machine running in case I am able to restart it up again at some point in the future. For the moment I'm thinking that will be no earlier than a week or so from now, and much more likely several months. I'm just going to take it day by day. I feel better about the people on my team, my endocrinologist and our pediatrician. I also really want to have the pulmonary function test to confirm that my lungs are in better shape now.
We are so lucky to have had Jeff's parents here for the weekend. My mom is staying indefinitely and Jeff's mom is coming up Wednesday. I felt like I was just barely managing everything (taking care of the babies, laundry, diapers, nursing, naps, groceries, meals) before this happened, and now I definitely can't manage it all without a lot of help. Bottle feeding and pumping is exponentially more difficult than just nursing. I DID appreciate nursing when I could do it, but I certainly appreciate it now. I miss it SO MUCH.
I'm overwhelmed with gratitude and appreciation for all the wonderful emails and phone calls I've gotten from so many of you. Thank you so very very much. They mean so much to me. I was so busy today with getting appointments and putting out feelers to my doctors and all of that I didn't get back to almost anyone. I probably won't be for a while. Please know that I appreciate all of it and I'm sorry that I can't be as diligent and responsive as I would like to be. I also appreciate all the offers of help. For now I'm trying to be very cautious about having people in the house around me and the babies, because the steroids so diminish my immune system and it would be very dangerous for me to get sick. So we can't have a lot of people over, as much as I would love the help and the company. We may take people up on offers of food or grocery shopping or other errands as I get more organized and can plan more than a day or two in advance. Thank you for the offers--I will take you up on it when I feel like it's safe.
I feel really good about the endocrinologist, though, and her whole staff was awesome and responsive. The doctor gave me a hug at the end. I feel like she's going to get to the bottom of this even if she has to break some legs to get there, and it's great to have her on my side. She is very angry at the pulmonologist and the hospital staff who did not even consider my thyroid condition (Graves disease) when giving me the CT scan and the radioactive iodine. She said she was going to call him and find out what's going on, and keep very on top of my thyroid in the meantime. She said she has never seen or heard of this kind of reaction to the thyroid medication, though she did not rule it out. It was a little stressful getting my blood drawn because my veins have been totally destroyed by so many days in the hospital and all the blood sucked out of me, but the phlebotomist did a great job and was very sweet to me.
I also had a great conversation with our pediatrician this evening. She was very concerned about my health and just kept assuring me that the boys have gotten awesome breastmilk for four months and that formula will be just fine if that's what we decide to do. She's going to call some breastfeeding/medication hotline at Strong in Rochester for me to find out if the alternative steroid (prednisilone) would be better than what has been prescribed to me (prednisone) or at what levels it would be safe in breastmilk. She was just very kind and very caring, and I felt immensely relieved after talking to her. We also had a very funny conversation about the kids' vaccines. I had decided about two weeks ago, after conversations with Claire and Adrienne and other people I really trust, that I was going to vaccinate the kids for everything at our next appointment in October. Now it is especially important to vaccinate the kids because my immune system is compromised, so I mentioned that. The pediatrician and I had previously had a conversation about spacing out the vaccines. She paused and said, "I promised myself I wasn't going to bring that up. You have too many other things on your mind. But, yes, now that you did, that is important." She's great, and I feel grateful to have her on my team.
I'm still undecided on the pulmonologist. I partially hate him because he so disregards my concerns about breastfeeding and questions about risks and alternative treatments. But on the other hand he did, kind of and in an understated way, admit when he discharged me that he had done some research and there are variations among how the steroids are leached into breastmilk and that it might be possible to breastfeed on even a high dose of steroids with some precautions. And I am grateful that he did the brachioscopy with no observed complications and (I hope) correctly diagnosed the problem. My biggest lingering concern is whether the dose of steroids I am on (60mg/day in one morning dose) is too high and for too long a time. When my mom picked up the meds from Wegmans this morning, the pharmacist came out to ask what they were for and why I had to take such a high dose, that he had never seen a dose so high for so long. When I told the endocrinologist that the pulmonologist's plan was to take them for 3 months, her eyebrows shot up and she said she had never heard of such a long dose. And when I called the pulmonologists' own nurse today to ask about scheduling a pulmonary function test that was supposed to be done at the hospital but they didn't have anyone there to do it all weekend, the nurse said, "for six WEEKS??" His own nurse. I also begged her to help me work with him on the breastfeeding issue, and when I told her that he had told me that I had to stop breastfeeding and that formula was the same thing, she paused for a VERY long time and then kind of harumphed and said she would page him right away. She did not get back to me today, though, so I guess my day tomorrow will again be calling around and trying to get people to get back to me. I also have an appointment tomorrow with my primary care doctor, who I am hoping will help me sort through all of this and make sense of the whole picture.
My attitude today is, I need to get healthy. Above all else. The breastfeeding is a distant second priority until I make sure I'm on the right track to be healthy. I'm continuing to pump and dump to keep up my supply but may slow that down a bit to preserve my strength. I lost 10 pounds between Friday in the hospital and today at my endocrinologist, and I think my body's working really hard just to keep it together. Pumping a half gallon of milk a day has to stress my reserves. I just want to try, if I can, to keep the milk machine running in case I am able to restart it up again at some point in the future. For the moment I'm thinking that will be no earlier than a week or so from now, and much more likely several months. I'm just going to take it day by day. I feel better about the people on my team, my endocrinologist and our pediatrician. I also really want to have the pulmonary function test to confirm that my lungs are in better shape now.
We are so lucky to have had Jeff's parents here for the weekend. My mom is staying indefinitely and Jeff's mom is coming up Wednesday. I felt like I was just barely managing everything (taking care of the babies, laundry, diapers, nursing, naps, groceries, meals) before this happened, and now I definitely can't manage it all without a lot of help. Bottle feeding and pumping is exponentially more difficult than just nursing. I DID appreciate nursing when I could do it, but I certainly appreciate it now. I miss it SO MUCH.
I'm overwhelmed with gratitude and appreciation for all the wonderful emails and phone calls I've gotten from so many of you. Thank you so very very much. They mean so much to me. I was so busy today with getting appointments and putting out feelers to my doctors and all of that I didn't get back to almost anyone. I probably won't be for a while. Please know that I appreciate all of it and I'm sorry that I can't be as diligent and responsive as I would like to be. I also appreciate all the offers of help. For now I'm trying to be very cautious about having people in the house around me and the babies, because the steroids so diminish my immune system and it would be very dangerous for me to get sick. So we can't have a lot of people over, as much as I would love the help and the company. We may take people up on offers of food or grocery shopping or other errands as I get more organized and can plan more than a day or two in advance. Thank you for the offers--I will take you up on it when I feel like it's safe.
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