Monday was Labor Day. Tom and I took the boys to the pool. Harlie can't go because of the PICC line (which can't get wet) and of course, the insane amount of oxygen she's on.
|Cooper, Philip (our neighbor) and Murphy|
|Tom throwing Cooper.|
|Murphy, Philip, Kaden and Cooper.|
Anyway, I'm not sure where our current situation falls. The end of summer or the beginning of fall? Because if it's the beginning of fall, that's not a good sign.
Tuesday, September 3
The first day of school! Murphy rushed out the house to go get Philip, so I missed our photo of him under our tree. Darn it. So, Philip's mom and I followed them there. I carried Murphy's school supplies (since I forgot them the other night) and took photos.
|Philip and Murphy|
|Philip and Murphy. I don't know why Murphy|
has such a hard time with photos... grrrr.
|Murphy ignoring my request for a smile.|
Looks like he wanted to get serious about school.
I spent the morning making a bunch of phone calls and sending emails. And I scheduled an appointment with Harlie's pediatrician for 1pm. I sent Cooper to Bethany's house, and Terri and I took Harlie. As we were walking out the door, she realized where we were going, and started to cry. She really has so little energy and had no interest in getting off the couch. Then she signed "potty." Never fails. She cried and sat on the potty for a little while. It occurred to me that she could have been stalling. So, I told her that Dr. Derco was not going to hurt her. And she got off the potty and went into the car.
Her doctor said that she had pitting edema, which basically means that fluid was accumulating in her soft tissues. I guess her lungs were running out of room. She's also up four pounds from just three weeks ago. Anyway, he said she needed more Lasix (a diuretic to help her body move the fluid into her kidneys so she could pee it out). Unfortunately, her one daily dose was scheduled for 2:30, so it was going to be a while before we would be able to see a difference from adding a dose. He called her cardiologist and then her cardiologist called me a little while later. After her doc was done with his exam, I said, "See? No hurt. Remember when I told you that it wouldn't hurt?" I really want to get her to the place where she trusts what we say. What a difference that would make with her fears (and subsequent behaviors)!
We rushed home after the appointment because I really wanted to walk with Murphy home so he could tell me about his day. At about the time I was leaving to get him, Harlie's Medicaid case worker got to my house. She did an overall assessment of our situation and upped our nursing hours from 10 a day, to 16 a day. So, that's good. Luckily, the school was running late (first day and all) so I made it in time to chat with a few parents and then walk home with Murphy.
|Classmates after school.|
Then we went home and I spoke to Harlie's cardiologist. He wanted her to have IV Lasix instead of oral Lasix. So, I called the infusion company to see if they could provide the IV Lasix. The manager that I spoke with said it wouldn't be until Thursday till he could get it. And if she needs it, she can't wait that long. He also said that he wouldn't even be comfortable with us giving it to her at home. It lowers blood pressure, so he would rather her be monitored. I think the general thought was that if she needed it, she needed to be in the hospital. But, we are not the norm, and I have IV access (clearly not the norm) and I have a mini-ICU at my house. Maybe that makes me feel like I'm more capable than I really am to keep her home and nurse her through this. I don't know.
Yet I still made her come with us on a walk in the evening with the dog. She didn't want to go, but we put her in the jogging stroller with an oxygen tank and I think she enjoyed the fresh air. It's always so fun to see Rooney run his heart out!
Anyway, come bedtime I gave her a second dose of Lasix. After that she only peed once. Whereas the last time I gave her a second dose at bedtime (Saturday night) she peed twice. The night was rough and I had to get up several times to see why she was alarming. Now that she's on so much oxygen, if she alarms, I have to go in immediately to see why. Her tubing could be disconnected or something and without the oxygen, her sats sink in to the 60s in a matter of seconds. No exaggeration. Anyway, I was tired this morning for sure!
Wednesday, September 4
Once I was up and Murphy left for school, I emailed her cardiologist and pulmonologist to give them an update (and to tell her cardiologist that we couldn't get the IV Lasix). Dr. G. (cardiologist) emailed right back and after going back and forth a few times with more details, he said it would be best if I just brought her into the ER now. Her belly is distended and that might mean that oral Lasix wouldn't work as well, so she needs IV Lasix.
I was walking the dog with Cooper when I got that last email and was kinda far from the house. So, it took me a while to get back. But, that gave me some time to get Cooper squared away. My friend Michelle had just sent me a text telling me she was available, so I called her. Her and Sally came right over. They took Cooper to the park.
Then Cooper and Rooney went to Bethany's house for the rest of the day. And Murphy went there after school. Then the boys went across the street to Philip's house for dinner. His mom is making dinner for them tonight and tomorrow night. Oh, what would I do without my neighborhood??? Even though our life is kinda crazy, they are entertained, loved and well taken care of. So, thankful!!!
As we pulled into the parking lot of the hospital, Harlie saw where we were and yelled, "No!" from the backseat. Ugh.
So, we got to the ER and saw some old friends. A nurse that we had years ago was back! It was so good to see her! She went to a different department for four years and today was her second day back in the pediatric ER.
Then Dr. G. (her cardiologist) came by to see us. And they did an echo (ultrasound of her heart) just to make sure all the extra fluid wasn't negatively affecting her heart. Then they got a chest x-ray and an abdomen x-ray. Her chest x-ray definitely shows a lot of fluid - on her right side especially. And it's now in the chest cavity instead of just being in her lung tissue.
She's now been admitted into the PICU (last time we were in the progressive care unit, which is a step down from the ICU). Funny how you get comfortable somewhere. At first I hated the PPCU, but being in that room made it so much better. And I got to know the nurses and team. In the PICU, it's a whole different team. Of course, I'll get used to it here, too.
She's also doing a lot better than when we got here. And she immediately asked to sit in the chair, with the table and the computer. Of course, she's not been fed or had any water flushes since 10am. And apparently, you can be dry in some ways and fluid over-loaded at the same time. So, that makes getting her balanced easy. Not.
They have now started her on an IV Lasix drip. Her blood pressures have been low today, so they had to get some meds to have on hand just in case they need to give her something quickly to raise them.
We already had some visitors - Niki and Katherine - some of my running friends. I forgot to get a picture. Darn it.
It is now after 9pm. And I am pooped. We are about to give Harlie a bath, and put her to bed. Then I think I'll go home for the night and return early tomorrow.
Oh, one other thing... today at Harlie's school, a lot of the moms organized all the kids who had We heart Harlie t-shirts to wear them today to school. So sweet!