First an update. K is feeling much better. He can breathe without too much pain. I've gotten much better at the injections. He is still in a bit of denial, but we're just taking this one day at a time. He went to the office yesterday for a few hours (with the doctor's permission), jumped over to the Nats game for a few innings (ugh!) and was home by 4. I'm trying not to hover. As long as he doesn't run, jump, or get too physical the doctor says he's fine to get back to some normal. He's pretty sore at night still. The doctor says that it will take weeks for the pain to go away. His blood levels aren't in the therapeutic range yet, but are very close. We go back this afternoon for another appointment and blood draw. We're hoping that the injections can stop, although I'm a bit nervous about that since the doctor emphasized that they are what is keeping him safe right now. Floating in the back of our minds is a worry about why this happened since he doesn't fit any of the typical profiles. We talked cancer with the doctor. He admitted that it's worrisome because K is a young, relatively healthy, fit man.
The reactions from the kids have been mixed. E has been pretty dismissive and trying to act like nothing is going on. She did help when asked over the weekend, but was certainly not pro-active about chipping in. She didn't come to the hospital to visit him. I had lots of "me, me, me" texts. I'm trying not to over analyze her reaction.
M is being really weird. Since K got home, she's been complaining of phantom chest pains and producing a fake cough. I talked to her therapist. She too isn't quite sure what's going on, but did comment that she thought M looked under the weather. I have become pretty good at
reading M and figuring out whether her symptoms are actual or a
manifestation of her anxiety--her body language, acting normal and laughing
with the boys but changing when I walk in the room, the tone of her voice, the
insistence that nothing is going to make her feel better despite me giving her
options to relieve her symptoms. I do think when she feels bad she really
does, I just don’t think it’s an actual illness. I told her this morning
on the way to school that we were going to skip soccer practice today and just
come home and rest. If she continues to feel bad we’ll head to the doctor
tomorrow.
The boys have had a tough time. We tried to keep them busy all weekend as a distraction and, more importantly, allow me to be at the hospital with K. D finally broke down on Tuesday night. He had forgotten books for homework, admitted to doing poorly on a math test (not like him), messed up his science project, and did a bad job on a religion assignment. This turned into sobbing and refusing to eat. In between crying fits, the real reason came out. "How long will you give Daddy shots?" "Do they hurt?" "Is he okay?" Poor guy. I eventually got him calmed down and he seemed better yesterday.
L has been talking a lot about death. He's clinging to me. He keeps mimicking me and telling K, "No running Daddy!" I don't think he really understands what happened. We're trying to give him just enough information and reassure him that Daddy is fine.
My real worry is A. He's just so quiet and reserved with his feelings. On the way home from that terrible practice last week, K told him to call 911 on his cell phone if he had to stop the car. He looked terrified when they pulled up and K whispered to call 911. My poor, sensitive boy. I haven't really had the chance yet to sit down with him and talk about what happened. I'm going to try tonight and check in with him to make sure he's okay.
Our friends' and family's reactions have ranged from shock and doom and gloom to dismissal. Both our parents live in a bit of "la la" land and just want everything to be okay. K's parents aren't very confident in doctors in general and tend to ignore basic health issues. My dad argued with me this morning about whether or not K can eat spinach (doctor says no, my dad said "oh he'll be fine"). My parents in particular have focused all of their energy on the girls. That's hard to stomach. The boys are their grandchildren too.
And then there's me. I'd be lying if I didn't say that being on the medication hasn't been a very good thing through all of this. I am still nervous not being with him. We're hugging each other a lot. I'm not sleeping or eating very well. I thought I was going to have a full blown panic attack yesterday morning when he first went to work. I know he's tired of me saying, "Are you OK?" I am still very scared. I keep replaying that night in my head. It was horrible. I thought I was losing him. We have our marital challenges given the unbelievable stress we're under with the family, but at the end of the day he's still my best friend and I love him dearly.
I keep telling myself to take things one day at a time. I really like his doctor and feel like he's getting the best care he can. If we can just get through the next few weeks (girls' wedding to Indiana and anniversary of accident), I think we'll be okay. This is the hand we've been dealt and we'll get through it together.
I don't have much to say, except that I am thinking of you all.
ReplyDeleteThe urge to say "are you OK" is incredibly strong. It's impossible to not say it. Thinking of you all so much. I hope K continues to do well, and I hope that you can hang in there and take care of yourself in at least some small way.
ReplyDeleteDefinitely need to restrict those leafy greens and take it easy on the alcohol. Those will mess with his numbers.
ReplyDeleteWe had the same concerns with B. He was an otherwise healthy 33 year old man. What the heck?? Because they were being so thorough, they discovered his aortic aneurysm. I'm sure they'll get to the root of K's issues too. They're quite thorough when it comes to this.
I think E is being a typical self-absorbed teen and can't help but wonder if she was in self-preservation mode given the losses she's experienced. I wonder if she and M both are freaking a bit because you are their parents and it would be so awful to lose another one...
As for the boys, of COURSE they're wigging out! Lil had a terrible time with B in the hospital. She wouldn't go near him she was so scared. She was only 3 and I imagine it was so much harder for the older boys because they really did know what was going on.
I was thinking yesterday how grateful I was you were now medicated when going through this.
My father had PEs when he was in his early 20's and spent the rest of his life on blood thinners. While it wasn't wonderful, he led a very full and happy life. :o) You adjust and it's another new "normal". Do they know if K will be on the Coumadin for the long term or if it's only for six months? I'm guessing they're still looking for answers.
My prayers for your family continue. Hang in there.
Hugs
A few thoughts: First and foremost, I'm glad your husband is on the mend and I'm so sorry you have to go through this.
ReplyDeleteSecond, this post kind of highlights for me how much moms in particular are aware of and absorb all the nuances of everyone in a family. You laid out observations of everyone around you and gauged how they are handling things, and I'll bet you no one on that list could do the same. This is why your struggles with stress are so intense--you are carrying everyone's, not just your own.
Third, it makes perfect sense now why you were reluctant to tell your husband about your medication. If he and his family are so resistant to hospitals, etc., that's a tough crowd to convince. But I'm so glad if it's helped take some edge off your anxiety so that you can function better at this time.
Last, thinking of you and wishing you strength and calm.