Saturday, July 25, 2015

Saturday update- Day 11

Days go by here in the hospital slow and so fast at the same time. I look at the clock some days and it's 2pm and we're just able to get Teag out of bed or out of our tiny little room... The last few days have felt a bit like the movie 'Groundhog Day'- same characters, same setting and slightly different events... Nights are still sleepless with meds and vitals checks every 2-4 hours, and mornings are usually filled with pain for Teag until around noon when she feels up for a few visitors or a walk/ride in the wagon out of the room...

We did get some good news yesterday about her echo. The Dr.'s had been concerned about her heart function and connections they made during last week's surgery because her oxygen has remained so low without support and she's been struggling quite a bit. Everything on her echo looked great though and the surgery connections look fine- which is a relief! They're hoping that as Teag recovers a bit more, her chest tube can come out and she'll breathe better and raise her sats on her own... She still has her right chest tube and they don't want to pull it until she's eating full meals so they can make sure that the drainage won't pick up. Yesterday she ate more than she has in 10 days, and as a result her chest tube drainage increased quite a bit from the days before, so they want to wait a few more days at a minimum before they take it out. It is causing her massive pain which comes in waves, and usually when she moves or tries to walk. She can no longer ride the little tricycle because when she sits, it presses it up into her ribs more and is really painful. We're all hoping that when the tube finally comes out, that she'll have some relief and will take deeper breaths which will raise her oxygen. It's looking like we'll be here for a few more days to a week at a minimum...

Another bit of good news is that her digestive system is starting to work again. All of the meds they gave her over the last week decided to work Thursday/Friday and we spent most of those days helping her deal with the results of that. :(  She seems better today but still doesn't have much of an appetite after 10 days of not eating, so we're slowly working on getting more food in her a few bites at a time.

She has received a few fun packages and balloons from people and really loves getting mail! I'm not sure if we have an actual 'address' but it seems like any mail sent to the hospital and addressed in her name gets to her. We've had 2 more visits from grandma, nana and her brothers Gavin and Bode which she enjoyed, and also Nana Janie, Papa Gene, Reese and Hadley! Today was Grandma's birthday and we were able to give her our little gift and she brought us some homemade cheesecake, yum!

The plan for the next few days is just to keep her pain under control, get her moving as much as possible, eating as much as possible and using her lungs. After a few days of chest tube drainage getting less and less, they'll talk about removing it. After that, we'll just be waiting on her oxygen to improve before we're out of here! Progress is slow but moving forward bit by bit each day. I can't wait to get this sweet girl out of here and back home in her cozy bed!

Teag received a mega pack of bubble tape gum- yum!
 Having a rough morning... we usually try and let her sleep through the pain if she can.

 Having a good moment, and opening a little angel gift from Nana's church!
 Sleeping through more pain...
 Home sweet home, here's a look at our little hospital room. That little couch by the window is where Trent and I sleep at night, or I lay with Teag for a bit until she falls asleep.  We share it with another patient usually every other day for a few days.  They have the front half of the room near the door, separated by a small curtain. We've been lucky to have older roommates who only stay a night or two at a time and are usually quiet. The floor that we're on is cardiac and organ surgery so our roommates have had their spleens and gallbladders taken out. They're trying to pair us with short stay patients thankfully, and our roommate discharged today so we'll hopefully have a quiet night.
 We took Teag on a ride to the cafeteria yesterday to pick out an ice cream bar and some noodles. She loved getting out of our room and choosing some food for herself.
 This morning we washed and combed Teag's hair for the first time in 2 weeks... She can't get her chest or anything else wet, but they have a little salon chair/sink that worked perfectly. Combing her hair took about a half hour after all her bed head, but it looks so much better now!
 Child life at the hospital has been fantastic and Teag loves when Amie visits her to play. She brings games, talks to Teag about how she's feeling/what she's scared of and just hangs out and plays with her from time to time. I think Teag really enjoyed playing with someone else besides mom and dad for a bit!
 

5 comments:

Anonymous said...

She looks so cute in her swami towel, I'll bet it felt so good to have her hair washed! Thanks for all the pics. Still praying, love aunt Karen

Anonymous said...

We all have you and Teagan in our thoughts and prayers. Such a brave little trooper, and so beloved by so many. Gods blessings on you and your family, Trent and Susie. We're right there with you. Love, Jim and Jan Whipple

Anonymous said...

Trent and Susie, You and your precious family have been in my prayers. I'm glad Teagan was finally able to eliminate. That is such a painful condition even if she hadn't just had this major surgery. You and your family are beautiful inside and out.

Anonymous said...

Trent and Susie, I forgot to sign my posting. This is Marcia Butchart loving you and praying for you.

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