posted
I woke up today and realized that it's October and Aerin's surgery is in 19 days. I haven't stopped freaking out since. I don't know why I'm having such a hard time dealing with this - I was never this bad when Aerin was in the NICU. I feel like I'm going to fly out of my skin and I have a desperately strong urge to cancel the surgery. I can hold it together when I'm around Aerin, but when I'm not, I'm a wreck. I can't even channel it into cleaning, which usually works for me. I do feel better when I pray, but I can't do that round the clock. I'm really surprised and disappointed in myself. I don't know how I'm going to get it together enough to do what I have to.
posted
I can't imagine not freaking out if my baby was going into surgery. I'm sure you have good doctors and she'll be fine though.
Posts: 1001 | Registered: Mar 2006
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I try to keep up on your blog and on Aerin's upcoming hemangioma surgery. I was glad to see you joined a group of others who have experience dealing with that sort of thing.
I'm not sure I understand all the possible risks -- is it really dangerous? I thought it would be pretty routine (not minor, but not something that is rare either).
Can you tell us more about why you are feeling panicked about it? What about it scaring you most? Is it because there are so many "unknowns" at this point?
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It actually helps me a lot to discuss it clinically - I can distance myself from it.
First, a hemangioma is a benign tumor of endothelial cells, which line the interior surface of blood vessels. These cells multiply at an abnormally rapid rate and form tightly-packed vascular channels, which become extra blood vessels. Most occur in the head and neck - only 15% occur in the arms or legs. Aerin's in on her right shoulder. It is both superficial and deep, which means that it occurs both above and below her skin. Most hemangiomas resolve themselves without any intervention. Those that don't go through a proliferative (growth) phase, followed by an involuting (shrinking) phase. Aerin's growth phase lasted for the first year of her life, which is quite long. The shrinking phase is very, very slow in general and particularly slow in Aerin's case. Additionally, it's been significantly ulcerated for most of the past 18 months, including one episode of hemmoraging, which ended with an ambulance ride to the ER. The specialists all estimate that Aerin's hemangioma would take approximately 7 years to fully involute and would leave a mass of fibro-fatty tissue on her shoulder. The hemangioma is pedunculated, which means that it has a stalk, like a mushroom.
Even though it's been in a shrinking phase for the past year, the MRA revealed that the hemangioma hasn't gotten any less vascular. This indicates that the vessels are abnormal, which will make surgery more difficult. There are 2 major risks with this surgery - anesthesia and bleeding. Aerin is a tiny former micro-preemie with some Bronchopulmonary Dysplasia (lung scarring) from being on a vent before her lungs were fully formed. This makes anesthesia particularly risky for her. It will also be a fairly long surgery, which ups the risk. Since the hemangioma is so vascular, bleeding is a big problem. The surgeons need to control the bleeding, which is especially difficult in a small toddler with abnormal vessels. Aerin will need at least 1 transfusion, possibly many more. In one of the worst case scenarios where they were having trouble controlling the bleeding, they would stop the surgery and temporarily close her (not stitch her - something where they could quickly open her back up - some sort of medical plastic wrap, I think). This would require keeping her sedated until she recovered enough for them to go back in. Our surgeons are developing a number of plans because, despite the MRA, they won't know which approach is best until they go in. I'm just terrified that she won't make it out of surgery.
Posts: 3037 | Registered: Jan 2002
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posted
You and Aerin have my prayers. You WILL get through this, I promise. Try giving yourself a set time and place every day to lose it. A friend suggested it to me once and it sounds crazy but it really works!
Posts: 2711 | Registered: Mar 2004
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posted
You are and will be in our family's prayers as well.
Remember that the surgeons have to come up with all the worst-case scenarios. They probably won't need them, but it's good that they've thought through them ahead just in case. (I know you know this, but if it were me, that's what I'd be reminding myself.)
Posts: 9866 | Registered: Apr 2002
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Your family is in my thoughts... can't imagine what you must be going through. Hopefully one day this will all just be an interesting story that turned out alright for everyone.
Posts: 12 | Registered: Sep 2007
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Oh, my cousin had a tiny one of these beneath her skin right in the middle of her forehead (like a unicorn stump). I just remembered it now reading your description, Mrs. M.
Best wishes for Aerin and family .
Posts: 8473 | Registered: Apr 2003
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I'm kind of on the other side of freaked out. Like I can't even must ther energy to express disbelief that it is October.
I remember feeling so concerned when my husband had surgery. Child surgery would be much more concerning.
Posts: 11017 | Registered: Apr 2003
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posted
Mrs.M, I wanted to ask you about something when I read about the expected transfusion(s), but I don't want to bring more stress into your life. I'll try to be careful -- let me know if it makes things worse, okay?
I think the blood supply we have is good to use. When I went in for surgery, I did not predonate or have anyone else predonate for me.
However, it occurs to me that if you have not thought about arranging a predonation (which isn't a recommendation, by the way, as I said ), it migth occur to you closer to the date, and that might be too late. This sort of thing has to be set up weeks in advance.
I don't want to bring up something for you to be obsessed about, and you likely have already considered it anyway (you certainly wouldn't have to tell us here!). But knowing how much you love and worry about her, I want to make sure you don't first think about it when the surgery is only days away.
Posts: 14017 | Registered: May 2000
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CT, there is some mention of blood donation on Aerin's blog (Mrs. M, I'll take this down if you are uncomfortable with this quote being on Hatrack)
quote:There is a strong possibility that Aeirn will need one or more blood transfusions during her surgery. Andrew will be tested in the next couple of weeks to see if he can do a directed donation (he and Aerin are both A+, I'm B-). Though they are the same blood type, Aerin has antibodies in her blood because I got so much Rhogam when I was pregnant with her. I'm not worried about this - they'll find a donor if Andrew isn't a good match. All of the blood from Aerin's 6 NICU transfusions came from the Virginia Blood Services and that's who we're using this time.
We've had many people offer to donate blood to Aerin. We can't thank y'all enough, but it has to be Andrew or an anonymous donor. VBS can't accept donations that aren't local and all directed donations require a doctor's prescription. If anyone would like to donate blood in honor of Aerin, that would mean so much to us.
posted
Thanks, y'all. I am feeling minutely better today. I won't really feel better until Aerin is home recovering. Her Halloween costume (she's going as a ladybug, same costume as last year in a bigger size - why mess with perfection) came in the mail today and I'm trying to focus on how much better her life is going to be after the surgery. Making plans helps to keep the anticipatory grief and fear somewhat at bay.
CT, I very much appreciate you bringing directed donation up. You're always so kind and diligent when it comes to things like this - I so admire that about you. If we hadn't already explored it, I would definitely want to be informed about it. I feel that you need to have and understand all the information about a medical situation so that you can make informed decisions. I have been very lucky in having doctors who agree and appreciate that and are always willing to discuss things in detail, using exact terminology. It also helps that we're very plugged into the Richmond medical community at this point.
AJ, I don't mind at all, but you're sweet to think of it.
Posts: 3037 | Registered: Jan 2002
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posted
I think it's perfectly understandable that you're freaking out about this. Does it help you to focus on the detailed research you've done and the good doctors who will be handling the situation? Does it help you to focus on (and really visualize) the positive outcome of the surgery? I can't imagine what you are going through (and am really at a loss for good ideas, much as I'd love to be able to help you in some way). I will thinking of and praying for you and Aerin (and Andrew). I hope your concerns will not overwhelm you and that you'll find a measure of peace. Posts: 5879 | Registered: Apr 2001
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My prayers are with you. I know how frightening this can be -- remember to take good care of you, Mrs. M., because you are the one Aerin relies on to advocate for her! Here's a gentle, loving hug.
Posts: 5609 | Registered: Jan 2003
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posted
I hit a new low - I started to cry in the Gymboree.
I was using my Gymbucks to get Aerin fall clothes. Aerin was home with Andrew, napping, and the saleslady asked after her in the sweetest way and told me that she's praying for her. I wasn't sobbing, but I was teary enough to be humiliated.
I also cried tears of rage during my SEVENTH call with the blood bank today. Our appointment has been changed 3 times and moved to 2 different locations. On the bright side, I think I freaked the lady out enough that she'll take care of it just so she doesn't have to deal with me anymore.
Posts: 3037 | Registered: Jan 2002
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posted
We're heading out to our Pre-Op anesthesia appointment and unit tour. I managed to sleep for almost 2 hours last night, which is more than I thought.
Posts: 3037 | Registered: Jan 2002
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It's going to be fine. I'm sure of it. My prayers are with you, Aerin, and the doctors that all will go well.
Posts: 14428 | Registered: Aug 2001
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We made it through pre-op day. I was okay through most of it, though I did get upset (on the inside) when they told me that they're setting aside 2 units of blood, in addition to Andrew's unit. That's enough to replace all of her blood. Twice. I know they have to be prepared, but it's hard not to imagine the worst case scenario when confronted wtih preparation for it.
I'm generally doing better than I was last week, though I may be in some kind of fugue state or in complete denial. I've been taking Aerin outside for little walks down our driveway and around the cul-de-sac, just so she can get outside. I'm going to have Andrew take her down to our lake, too. Our backyard slopes too much for me to feel comfortable carrying her and you have to cross our creek, which is currently a ditch due to the drought.
We've been hearing from so many people who love Aerin. My mother is actually getting most of the calls, probably because people don't know what to say to Andrew or me. That bothered me a lot when Aerin was in the NICU, but it doesn't bother me now. I have periods where I feel like I'll bawl if anyone is nice to me and I don't want to upset anyone.
Posts: 3037 | Registered: Jan 2002
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quote: I have periods where I feel like I'll bawl if anyone is nice to me and I don't want to upset anyone.
I purposely avoided all women at church yesterday who were at the women's Bible study on Thursday evening when I cried. I didn't want them to ask me how I was doing.
Posts: 399 | Registered: Sep 2002
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quote:I have periods where I feel like I'll bawl if anyone is nice to me and I don't want to upset anyone.
I know how that goes.
Uh-oh, I hope the note I sent doesn't make you cry. Maybe you want to read it when no one else is around...
Posts: 21182 | Registered: Sep 2004
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posted
Our surgeon just called. A transformer at the hospital exploded. They're on backup power. He's had to cancel 4 surgeries. We're on standby - he doesn't know if he'll be allowed to do non-emergency procedures by Friday. If not, we'll have to reschedule for 2 weeks from now.
I really don't know how I feel about this. Part of me is strangely relieved and part of me is upset.
Posts: 3037 | Registered: Jan 2002
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I'd be angry, personally, that things were not going as planned and that I had two more weeks of dread anticipation ahead.
Is there any possibility of moving to a different facility under the circumstances? Does he have staff privileges anywhere else?
Posts: 4515 | Registered: Jul 2004
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posted
Thankfully, no one was seriously injured. One man sustained non-life-threatening injuries and is being treated at the burn center there. No one else was hurt at all.
Our surgeon has privileges at other hospitals, but only MCV has the specialized equipment needed for Aerin's surgery. They also have bigger operating theaters - Aerin's team is quite large (4 surgeons, our pediatrician, anesthesiology team, phlebotomist, nurses) and needs the extra room.
My mother pointed out that we're lucky this didn't happen during Aerin's surgery or after. Not that anything would have happened - the backup power comes on immediately - but it would have been very scary.
Posts: 3037 | Registered: Jan 2002
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posted
Mrs. M, would you mind if I donated blood in Aerin's name after I get better(I'm dealing with some sinus/allergy stuff plus a cold right now, but should be fine in a few weeks)? I'd like to do whatever I can to help you feel better about this.
Posts: 1591 | Registered: Jul 2005
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