Mommy’s Little Nurse

CIMG0229When we came back to the hospital on Thursday, Stephanie was confined to the bed for almost 3 days while they drained her fluid using the Ultra Filtration machine.  To bring her spirits up, Doctor B. ordered us to bring Chloe to the hospital—officially they have a “no children” policy, but since Steph was in the Cardiac Care Unit, the rooms are a bit more private and have private entrances, they made an exception for us.

We were a little bit concerned that Chloe wouldn’t do well, but she did great!  She loved staying at the hotel with Daddy, and really liked the popsicles that Steph got to quench her thirst (she’s on water restriction), especially when she got to share one.

She’s Mommy’s little nurse—she tells Steph not to drink water, and tells her what potty to use, to take her medicine, and to obey the nurses.  She’s very gentle and careful around Mommy, but she likes to go see the fish in the waiting room and jump on Daddy.

It has really lifted Stephanie’s spirits tremendously, and probably been her favorite time in the hospital.  It’s also shown us that when Steph finally gets to go home, she will be able to spend a lot of time with Chloe without her being too rough.

Chloe has been shy around the doctors, yet when I asked her what her favorite part was, she said that she liked the doctors the best.  She said that Mommy’s doctor was good, but Chloe liked Dr. Chia (Chloe’s pediatrician) better.

Happy Day

2 Milestones in this hospital adventure have been (1) Waking up on Sunday the 17th looking at pink nails. I haven’t had pink nails in over a year. I have been in denial & had more manicures just to cover it up, not to be prettier.  (2) Getting good results in the cath today – the surgery was successful and healing properly. No more immediate surgery!!  I read my pre-written verses and pushed the worst case scenario out of my mind. Jeremiah & Genesis state that nothing is too hard for God…I had to remind myself of that even when I felt the wires in my leg, when I had 2 big cameras in my face, when I had 10 people in the cath lab talking in some other kind of language I had to keep asking in groggy questions if things were good.

These 2 things compare to the overwhelming happiness of “getting the call” that we have a child waiting for us – the relief, happiness, the undeserved GRACE. Dr. Book is not completely satisfied because I am not home yet & we are treating complications. She is an incredible physician – she treat me like I am her only patient – I know she has 50 other active patients.  

I am overwhelmingly thankful and joyful today & want to have these feelings – remembering what God has done for me. 

Heart Cath

This morning at 8:00 AM, Stephanie had a heart catheterization.  The docs ordered a cath because they wanted to be sure that her low sodium level was not being caused by a problem with her heart, such as blockage or some failure of the reconstruction.  They wanted to check it out before it healed all of the way, as it is easier to fix problems before they scar over.

CIMG0222Steph and Mom before the heart cath

While we did not expect that anything was wrong from the surgery, we were concerned, because if they found something in the cath, it could mean opening her up and operating again.

Our prayers were answered, and the cath showed everything was functioning as it should, and the reconstruction and valve are functioning as they should.  It showed that the pressure was up, but that is just because of the extra fluid that she has.  We’re glad that they did the cath, because it is nice to know that she is healing well.

After the cath, Stephanie enjoyed some delicious popsicles.  She’s on fluid restriction as the fluid drains, so she really enjoys popsicles, because they quench her thirst without increasing her fluid levels.

CIMG0223

Cookies

butter, oil, vanilla, sugar, flour, baking soda, salt & a myriad of other junk.  Mixer, 2 bowls, 2 pans, spray, dish towels. Dirty kitchen, trash, flour on the floor, and now the overeating.  What do I do with 25-30 cookies & how do I limit how many Chloe has? Fro the next 3 days, I have to ration to her, but I eat extra when she is sleeping or at school.  Then the guilt, needing to work the calories off, bc I don’t want my stomach to be any uglier than it is. Why did I even make cookies at all? What a stupid idea & waste of time…I could have been doing housework or laundry, or cleaning out the garbage cans or base boards in the bathrooms. I could have been sweeping the porch, cleaning the front door, cleaning cobwebs in the garage.

Sitting in CCU, there’s no comparison what I would rather be doing.  Teaching Chloe measurements, how to stir, watch her stick her finger in the bowl at every ingredient, and smearing the batter on each other’s faces, laughing until we were choking, having 5 dirty dish cloths of fun. And a basket full of fun filled paper towels.  It’s sad I have to have IVs in each arm, oxygen supply, blood drawn every 2-4 hours, 5 leads monitoring my heart. . . I think it’s no comparison when I heal and get home. Cookies and laughing win over cleaning trash cans.

My Wife the Celebrity

One thing we have learned in our time at the hospital is that the normal finger mounted sensors used to monitor oxygen saturation do not work for people with congenitive heart defects. 

As a result, Stephanie is very popular with the company that manufactures this medical equipment—they are closely studying her and examining her results while she is in the hospital.  The reason is that they have never had another test case with a BT shunt, revised Fontane, artificial valve, marathon runner, and they are studying her to figure out how to make their equipment more accurate.

The way that they talk about her, I feel like I’m married to a famous celebrity.  I knew that she was one in a million, but now I know that she’s one in one hundred million.

We’re Back (at the hospital)

IMG00032 Stephanie has been re-admitted to the hospital.  Since getting discharged yesterday, the fluid in her chest has increased, and it is affecting her breathing capacity.  When she tries to lie down, her breathing is very labored, and her lips start to turn blue.  The doctors hoped that treating her with Lasix would take care of the fluid, but it didn’t work.  Also, her sodium level continued to drop. 

They are treating her with a more powerful diuretic that has to be administered via an IV drip.  This medicine is supposed to quickly reduce the fluid and also increase her sodium.  Once they get the fluid out they hope to maintain a healthy fluid level using steroids.

This is very common in people with Stephanie’s procedure—it takes the body to adjust to the new wiring.

Stephanie feels relieved to be in the hospital so she can get rid of the fluid pressure and breathe, but she also feels weary of having a bunch of IV’s hooked up to her and lab work every 3-4 hours.

Other than the fluid complications, Stephanie is healing very well.  Her incision and chest pain is much lower than it was a few days ago.

Homeward Bound (sort of)

Monday afternoon Stephanie was discharged from the hospital.  That’s the good news.  The bad news is we can’t come home quite yet. 

Tuesday we have to get checked out at the Coumadin Clinic (they were closed by the time we left the hospital).  Also, Wednesday morning the doctors want to follow up with Steph and see how she’s doing on her sodium level, so they didn’t want us to go too far yet.

Stephanie is happy to be out of the hospital, but last night was kind of overwhelming to her, sleeping in a normal bed and getting adjusted to normal life.  It’s nice to not hear people moaning or hacking during the night, or have nurses come in and turn on the lights to check blood pressure, but it is also a bit scary for Steph not to have the security of doctors and oxygen nearby right now.