Saturday, May 25, 2013

1st birthday to PICU at Primary Childrens

Tatums birthday finally arrived.  I was thrilled because all along I wasn't sure if she would make it. For some reason it felt really important to me for her to reach that milestone. I would love for her to have 85 birthdays, but since I knew that wasn't the reality I set my wishes on that first birthday.  I had a lot of things that I wanted to do, but as usual I just decided to be flexible because generally things don't go the way you invasion in your mind. The main thing that I wanted for her to have for her birthday was the new gj tube in place. We had that and a picc line to boot!  We were sitting pretty.
Luckily my friends had taken charge of all of the birthday festivities. Someone made her a birthday sign that a few neighbors came and helped me hang. We had several visitors all day with cute outfits and books and balloons and cupcakes,  a cute birthday hat the list goes on and on. Truly we didn't need to do a thing.
Toward the evening I went and grabbed us some food.  When I got home we realized that they had forgot half of our order!  I drove all the way back and picked up the rest of our order.

Later that night I was checking on little Tate's and I noticed that her tube site was leaking and that her tummy felt a little bloated.  I wasn't sure what to do.  I knew that her GI doctor was on call and so I decided to call him and see what he thought.  Talking to him, he didn't seem alarmed and so I told him that I would probably watch her through the night and see if there were any changes by morning.  Then I called my nursing lifeline (my good friend in provo that is a pediatric nurse).  She wasn't sure about going up to Primary children's was necessary either. We just weren't sure what they would do at this point.
Tatum slept from probably 9pm until 1:30ish.  Then she was awake until about 5.  It was a weird night, but not totally unusual for her.  The morning was pretty normal.  We had turned down her feedings through the night to see if it would help with the leaking and it seemed to help a little. Her feet and tummy still seemed swollen in the morning but not any worse.  I got her up and ready for the day and then she went back to sleep.
While she slept I ran around like crazy to get some flowers planted that we bought the day before and painted two new planter pots for our front porch. It is always nice to be able to do a few normal things among our currently abnormal life.
When I went in around 1:00 I checked on her again and I just felt like things weren't getting better. Her tummy felt tights still and she still had a little bit of leakage. I called and left another message for  our GI doctor.
One of my friends stopped by and brought me lunch. While she was there Tatum was awake and so we were talking to her and I took a few pictures of her while she was awake. Her energy level is decreasing day by day and so I know that I have to seize opportunities when she is awake.
 I hurried and got showered because I had a feeling that we needed to go to the hospital.  I called Lance and told him to try and come home a little early so we could head up. I packed Tatum's things like Jammie's and such, but nothing for myself. I didn't want to jinx myself.  I was sure we would get there and they would have a simple solution and we could go home. Wrong!  

Since we came to the ER things have gone from bad to worse. They finally got us up to a room in the PICU.  Her labs are whacked and she is just really bloated. They are running tests and keeping her stable. Right now she is holding her own. We won't know any more until morning.  

I think we will bring the kids up to see her tomorrow. We need to start really preparing them and ourselves for the possibility that lies ahead.
I do not want to, but I must. It is really hard to watch her be so sick. She is such a little fighter. 

Sorry no spell check!


  1. Hang in there my sweet are in good hands! Happy Birthday Tater bug!!

  2. I am so sorry, my friend. Hang in there. Make sure you get to talk to a social worker up there. Even on the weekends, there will be one on call. Also, find out what hours the Parent Resource Center is open for food on Saturday. The social worker can give you vouchers for the cafeteria. Ask your nurse to make sure you hear when the breakfast cart comes around. It's not broadcast through the rooms in the PICU like the rest of the hospital, and can easily be missed. They have combs, toothbrushes, sweats, etc, that you might need. They're used to parents ending up there with no notice and nothing for themselves. And the sign outside that says "no food," don't worry about that. It's really for kids that would want to eat and can't. I've always brought food in and eaten bedside when Aaron's there. Sending you hugs and love. Happy Birthday, little Tater bug.

  3. Oh man! I am praying they find the issue and can solve it easily. Poor Tater bug...Praying for comfort! Love you guys!

  4. Our family is praying for your family to have peace, strength, and tender mercies!

  5. Prayers for you and every one of you, to find strength and peace. You are my hero Heather. Tatum, you are beyond a beautiful and lovely part of this world, and I am so grateful for the strength you show each and every one of us. (((Hugs)))

  6. Sorry. :( PICU is hard. If there is a parent room available, I'd recommend requesting one for a place to rest. We had the big talks about what was coming with our kids in the privacy of the parent rooms. Not sure they had those when Trevin was there so not sure you would know to request it?

  7. I'm sorry Tatum got that infection. Not fun for her or you. Praying you and your family will have the strength you need.