Let's Just Go Home

We are home.  After such a good day on Sunday, we were pretty optimistic about helping Tatum through this infection and getting her home for awhile longer.  On Monday morning she had a really long seizure and they had to give her some heavy medicine to stop it.  Then her labs came back and the numbers were not great.  The doctors just felt like everything they were doing for her was lasting for a bit and then her numbers were going right back down to abnormal.  They came in and suggested that one of our options was to take her home on the antibiotics and just treat her at home and stop giving her the blood products to try and correct some of her other issues, because they don't feel like they are going to resolve.  I agreed, and I just felt very strongly that we just needed to get her home.  She looks so sick.  Her tummy is still very bloated and her skin is very yellow from her liver failure.  I didn't want her to die in the hospital.  I want her to die in her home surrounded by her siblings and Lance and I.   So I called Lance and told him to come and get us.

This was not how I envisioned this Memorial Day.  Every Memorial Day we hike the Y mountain down by BYU in honor of our son Trevin's birthday.  We have done it every year since he died rain or shine.  I have been pregnant, we have hauled little babies and toddlers, encouraged grumpy teens and pre teens that it was fun, we have hiked through rain and mud and heat.  Last year Tatum was 3 or 4 days old when we went.  She was a little trooper and it was a great hike.  I was so set this year that we would go down as a family and if Tates was having an OK day we would hike her up in her stroller, if she was having a bad day I would sit at the bottom and wait for the rest of the family to finish.  Well, Tatum may have got wind of this plan and decided to foil it:)  She over shot her goal by a lot!  Lance and the kids ended up going up on Monday morning with out us to keep our tradition alive and to honor our perfect Trevin.  I was so glad.  It felt so weird to not soldier through and get to carry out this one very special tradition.

Lance came to the hospital around 1:00 or so and then we waited and waited and waited some more.  Our nurse was awesome, but it just took forever to get everything we needed to break out of there.  We were waiting on the super smart, but socially challenged, lab guys to tell us what antibiotic to send Tater bug home with.  We packed everything up and started out of the hospital.  I have never been so happy and yet so devastated to leave the hospital.  I was happy to leave but so sad that I knew it was the last time they would be able to help us.  We were taking her home for the last time.  I got just a little teary on the way out, and then I was able to gather myself.  I know this is just the process of helping our sweet baby to the other side.  And what an honor and privilege it is, but quite frankly it hurts like the dickens and it makes me really sad.

Tatum's Nurse for three days while we were on the PICU.  Deana:)

Tatum did super good on the way home.  Her breathing was  really good and she  had no seizure activity to
speak of.  I came home to some fun balloons and a clean house and cards on my bed from all of the kids and laundry going and a meal in the refrigerator.  It was so great.  The kids did fabulous.  Then we began the Tatum settling process.  I got her settled on her pillow bed, and started hooking her up to her monitors.  I switched her oxygen from the tank to the concentrator, then the SAT monitor to check her oxygen level.  It stalled at 44!  What the?  I tried not to panic but my first thought was "not on Trevin's birthday".  Then I started frantically checking things. After a minute, I switched her back to the tank and she immediately rebounded to the 90's.  There was a problem with the concentrator.  Lance turned it off and reinserted the humidifier part and then it was fine.  What is it with me and the oxygen?  I have problems with it and it is so scary whenever it goes screwy like that.  Heart palpitations.
We got settled and then we had visitors coming and going for a bit.  Then Lances family came down to give Tater bug a blessing.  It was nice for them to come and help us out.  Then we started the night time routine and then we realized that we missed a call from the hospice nurse that was supposed to have come at 7:00.  We called him back and it was about 9:00.  He thought he was supposed to come at 10:00.  So he came at 10:00pm after we had been in the hospital for 3 days.  That made perfect sense.  NOT.  We were not off to a good start.  Then he was a little too chatty for me.  For me!?  That seems impossible.  I think that I am usually good to keep things light, but I was truly exhausted.  I could not fake around with him.  He was totally not picking up on the social cues that would tell someone to speed things up, like tapping my fingers, sighing, short answers, getting up and doing things as he was talking.  Meanwhile Tatum's sat monitor kept alarming.  He just kept going, bla bla bla.  All I kept thinking was this is an hour and a half that I have lost sitting with Tater bug.  That was it!   Finally I just asked, about how much longer he thought this was going to take.  Then he finally clued in that maybe we were tired.  Well it was 11:30 for crying out loud!  He asked how frequently we would like him to come, but never wasn't one of the choices.  I said maybe just to do her dressing changes for her picc line.  I think that I have found someone else to do that now so maybe we won't need his help with that after all.

Finally at about midnight I was able to snuggle in with little Tates.  Poor dear.  To move her is just painful.  Once I get her settled in my arms she is OK, but it is heart breaking to think that she might be in pain.  How can we watch this much longer?  My heart is just sick.  I slept sitting up holding her and it was perfect.  How can I survive when I can't hold her anymore.  I know I will, it just hurts.
Our kids are grieving in their own way.  They are trying to participate in their activities, but it's hard for them too.  It is the last week of school, this is supposed to be a happy time.  Instead we are spending our last moments with our sweet baby girl.

Today (Tuesday) has been hard.  Her breathing is becoming more shallow, she is tolerating things less and she is soooo yellow and swollen.  I just don't know how much more her body can take.
When I was praying in the hospital to take her home, the angels confused which home.  I am so not ready to send her back.  I do not want to watch her suffer like this though, for that reason I have to pray that she can go quickly and peacefully.  I love her enough to let her go.  And so I will.