Back in the hospital

Whew!  I can't seem to keep this blog updated.  Harlie is a moving target lately.

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.

I took the last photo and posted it on Facebook.  After seeing so many happy pictures and status updates about how great summer was and how sad most people were that it was over, it made me think about how I felt about this summer.  My caption - Good effin' riddance Summer 2013!  I wish I could have hash tagged it (which I never do) as "worst summer ever" but - sigh - it's just too close to call a clear winner.  There was that one summer that I feared her death the whole season... so that sucked, too.

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.

Crazy.  

Murphy unpacking.  

Murphy ignoring my request for a smile.
Looks like he wanted to get serious about school.

Of course the bus came to the house for Harlie.  When they tried to reach me last week, I was in the hospital, so we never spoke.  The bus came and Tom had to go out there to tell the driver she would not be taking the bus for a while.  It made us both very sad.  To be surrounded by healthy children and know that one of yours isn't, is hard.  Living with grief every day....  And I've been feeling a lot more anger than usual in the past eight months.  I just feel like I'm running low on grace.  We have such an extreme situation in so many ways.  She's not textbook anything.  One problem complicates another problem's solution, etc.  And when things are bad for a while, I always start to wonder, is this the beginning of the end?  Is this going to be our new normal?  I hope not.

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.

He had a great day and likes his teacher, so that's awesome.

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!

This morning.

Thank you for all the wonderful support and love!!

Much love,
Christy xo

Another trip to the ER...

So, on Friday, we go to Harlie's follow-up appointment with her pediatrician. She is now on O2 continuously. When we put her on the scale to weigh her, we have to remove the mask (just for a second). Her color immediately changes. He sees her, doesn't like her color at all (even though her sats are in the 80s). He calls her cardiologist, they say come to the ER.

The plan is to admit her, tweak her meds, see what happens. So, off we go, back to the ER. Bummer.We get there and check in. There is a girl there who looks in the stroller. She says, "oh, she's got a trach?" That's interesting. No one ever says that. We said yes. She tells us that she had one when she was a baby - of course we both look at her neck and notice some scarring - but not from the stoma (hole). She said she was born without an esophagus. Wow. Then she said, "but I'm here!". How great is that?

Well, they take x-rays. Now she has pulmonary edema, which is fluid IN her lungs (whereas the chylothorax was fluid AROUND her lungs). Personally, I'm thrilled. That's understandable, really and an easy fix. A little over a week ago we stopped her diuretics (which helps your body get rid of extra fluid). They were concerned that she was getting dehydrated (because of the C-Diff), which would be very bad for her blood pressure, since her blood flow is passive.

Then, on Wednesday, when we went to the ER, since they were thinking dehydration, they gave her fluids through her IV. The fluids proved too much for her and now we have to put her back on the diuretics. A constant balancing act.

They wanted to give her the meds through an IV, since that works better. But, no such luck. Her veins are spent. They wanted to admit her and watch her for 24-48 hours after starting the meds again. But, I pleaded my case - saying that there is nothing that they will do at the hospital that I can't do at home. I will be able to watch for all the same things and will monitor her respirations, temperature, O2 requirement, etc. So... they let us take her home! YAY!

So, at midnight we get home with a very sleepy baby. I put her in the crib and next thing I know she is dancing! Both her arms are just flapping away, both legs are going crazy and she is smiling and her eyes are bright as day. You can not tell me that she isn't fully aware of what is going on! She was so happy to be home!

Then, she slept through the night just fine. I've given her 2 doses of her meds, and I haven't really noticed an improvement yet. Hopefully, we will soon. I am just so thankful that we aren't at the hospital!

Well, that's it for today. I hope you are all well. Talk to you later!

Take care,
Christy