Living in a hospital, I don't let a lot of things get to me. When the docs and nurses tell me {potentially} bad news, I don't freak out. I don't over analyse when they give me {things to look for}. So when I meet hypochondriacs or parents who subconsciously look for things wrong with their kids, it really gets to me. One reason being: Why on Earth would you EVER want this life for you and your child??? I mean, yeah most kids are afraid of shots, but for the most part they either grow out of it, or learn how to deal with it when there are needles. Dominic not only screams BLOODY MURDER, but he has night terrors about people and needles and there's nothing fun about driving to 300 miles for a doctors appointment. The second being: Docs and nurses can't always tell a hypochondriac apart from a concerned parent. Therefore, when we do voice our concerns, they don't always get addressed. This leads me to my story.
It was Saturday night. I remembered one of the cardiologists reminding me of things to look for after surgery, and what to do if they happen to occur. One of the signs to look for was a swelling face and a swollen belly. Of course part of me was trying to just over look it also. Maybe I'm seeing things. Maybe he has just been crying a lot.... maybe I should still say something. I told the nurse that his face looked puffy to me. (even though I tried my hardest to deny it. I even mentioned out loud that he has eaten salty foods, and has been crying a lot... bla bla bla) So the nurse said that we would chart his in-put and out-put and see where that leads us. Good idea!! She didn't seem too worried about it, so I was trying not to be also. The next morning, we got a new nurse. She mentioned to me that the puffiness was relayed in report and that she was going to continue to watch him. At about 10:30am I called the nurse back in to ask if cardiology had been called. She told me no. She also said that on Sundays, the docs kind of mosey in at whatever time, and when he got there, she would let him know, and it would be his job to do what needed to be done, whether that meant calling cardiology or whatever. I kept track of every drop of fluid that went through that little boy. I was determined to get this extra fluid off of him. I was determined to see that this was just me, freaking out over nothing. (Those of you who know me, know that when it comes to Dominic's health, I don't usually freak out over anything) At noon, I paged the nurse for some Tylenol, because Dude was uncomfortable and he really needed to take a nap. Our nurse didn't get to us until 45 minutes later. 45 MINUTES!! I realized right then and there that I had to do more than what I was doing to get some answers.
I immediately got online and emailed Dr. Armsby's team. I let them know what Julie (the Nurse Practitioner for Cardiology) had told me and what I was seeing. I also told them that I felt as if no one thought that it was important enough to get a hold of anyone for me so I needed some help.
He finally laid down for a nap at 1:30, and so did Aaron and I. We all slept a good two hours and it was beautiful; EXCEPT for one thing, Dominic looked even puffier to me. You know, sometimes in a hospital, things get a little hectic. I get that. Shoot, I'm there more and longer than any of those nurses are. I see and have seen day in and day out how sometimes those poor nurses will have all 5 of their patients buzzing at them all at once. I get it, and I pride myself for being understanding. If I don't need anything, I'm not going to bother you, however, 5 o'clock rolled around and Dominic's meds were an hour late. The floor was quiet. I buzzed and told the nurse manager what was going on and my nurse walked in and said, "Oh, you read my mind! I was just bringing these in here". I think Aaron saw the steam coming out of my ears because I was getting more and more frustrated. I then asked her if maybe we had missed the doctor when we were sleeping and she said no, he didn't come in today.
---Okay, my opinion is this: I understand that your expertise ISN'T cardiology. I understand that there is no therapy on Sunday, therefore you probably don't need to come in every single week. HOWEVER, if you have a concerned mom on the unit, you need to be there, even if it's just to tell her that it's going to be okay.
Remember how I told you about the wonderful Dr. Armsby?? Well, I am so greatful for her for so many reasons, and this is one of them. She is {involved} with her patients and their families. She gave me her email address before I left with a note that said, if I needed anything, even just to talk, to please use this. I dug it out of my purse and I emailed her. I was scared that he was just going to get looked over and to please tell me if I'm being ridiculous but, as of now, I'm freaking out. She got back to me very quickly and told me that she just thought that we needed to play around with his meds, but would like to see him tomorrow. She would have her scheduling nurse call me in the morning.
I'm sure my nurse could tell that I was angry, because she came back in with a new order of meds and a scale. She said she had called the doc {finally} and he uped Dominic's diuretics. He also said that we should just start weighing Dude to get a better idea of what's going on. So we did. He was up by over 2 kilograms. That's over 5 lbs in 4 days!!!!!!!
-in my head I'm saying {HELLO!!! Dominic hasn't gained weight for over 3 years and all of a sudden he is gaining 5 lbs a week?!?!?! RED FLAG RED FLAG!}
Every time I looked at him, I seemed to notice something different. I thought, gosh, either I really need some sleep, or something is wrong. Before we went to bed that night, I noticed that it was hard for Dude to breath. He acted like his chest was heavy and when I asked him to cough, he couldn't. I told the nurse. We went to bed.
Monday morning finally rolls around and I got dude ready for "school" or physical therapy. He is the happiest kid. He's laughing and carrying on, but there's still something there. He's still swollen. He's still struggling to breath. I sent him down with a water bottle to keep things moving, but I was afraid it wasn't enough. At around 10:45 am I got a call from Cardiology. It was Jean, the scheduling nurse. Dr. Armsby wanted to see us that day at noon. Of course I asked the question, are you responding to me, or did the docs call you..... she was responding to me. No one had called Doernbecher yet. YET. It had been two days of me asking question after question, voicing concern after concern and they STILL hadn't called!
We got there and had a ton of tests to do. Chest Xray was first, then labs, an echo cardiogram and then we would meet with Laurie Armsby. Well when we got to the echo, I had some familiar faces in the room. I had the amazing Emilio, who had taken care of us before we left, and our echo tech named Whitney. Dominic was so uncomfortable that she called in the doctor who was going to be reading the echo to come in and try it out. He was also a familiar face from the peds ICU. As he was looking at the echo, I was asking lots of questions. The doctor filled me in on what he was looking at and showed me a big pocket where fluid was collecting. The options were, put in chest tubes and let it drain, or drastically change his diuretics and see where it takes us. When Laurie caught wind of what was going on, she admitted us instead of seeing us in clinic, and we had an appointment the next day for chest tubes. Of course there was a chance that he would pee out enough that we wouldn't need them, but the chances were slim.
The next day, Dominic went into the
cath lab, and she "tapped" his lungs. (Basically, just pulled the fluid out) She got a good amount of fluid. 300cc's from the right lung (that's about 10oz's) and 27cc's from the left (about 1 oz). He was drowning in his own body! I wasn't freaking out for no reason.
Now today is Thursday and we are still here at Doernbecher. While we will need to get back to Emanuel for rehab therapy, but the cardiologists here want to monitor him a little longer. His lungs haven't quit collecting fluid just yet, but they aren't surprised either. They have increased diuretics and if over the weekend things don't get better, back to the cath lab we will go.
As far as how this ties into hypochondriac parents goes; if it weren't for them, those docs might have taken my worries seriously. They might have actually thought that when I said I was nervous, something was wrong.
Dude has the best attitude! He can't stop laughing and making fun of people. (He get's that from his Papa, not me at all!) He is eating like a champ, even better than before surgery. His therapy progress is unbelievable, he's almost sitting up on his own! He is learning how to control his left arm and leg, and as soon as his brain will let him, the right will come as well. He got a splint for his right arm today and it's already helping what I call "stroke arm". (A lot of people who have a stroke will have an arm that looks like his) As for me, I'm a little more paranoid for the time being. Mostly because I had a decent scare.
The best medical advice I could give anyone is this: Build a relationship with your staff! Befriend your nurses and your doctors. Talk with them about things other than medical things. I'll tell you what, if and when you have a choice to help someone, you are more likely going to help someone you care about before someone you consider a job. Thank goodness I learned that early on. If I didn't have the relationship I do with my team, I wouldn't be here now. Shoot, I probably wouldn't have felt comfortable emailing them when I did.
Everything is going to be okay! We are over coming just one more bump in our road. We can't wait to come home, but better yet, tomorrow we get to see Toren, Alaina, and Aaron. We are both SO excited. Tia is coming up too. :) We are going to make it through this yet again and no one is going to stop us or even hold us back. Thank you God for everything you have taught us.
-whit
