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.