Monday, February 6, 2012

Dialysis, here we come!

Happy boy!
Theo has been off of dialysis for over 2 weeks now.  Pretty remarkable, considering he had to start dialysis when he was just 8 days old.  We're thankful for the time off of dialysis, since it has given us the ability to be more mobile with Theo and it has given the catheter more time to heal.

There was hope that Theo's lab results would hold in a somewhat "normal" range for a while longer so that we could bring him home and then come back to the hospital once he needed dialysis again.  In fact, the NICU staff had arranged for Nick and me to "room in" with Theo for the weekend, and had planned for a Monday discharge if labs on Wednesday and Friday continued to look good.  By Wednesday, though, the results had started to creep up, and then they moved even higher again on Friday.  As of now, it looks like dialysis will start again tomorrow morning.


Even though Theo will not be discharged tomorrow, we were fortunate to have the opportunity to room in with Theo on Friday night; it was a real treat.  That was the first night that we have spent with Theo, and it marked the first time that we've been able to lie down with him.  He slept great all night, too!  We're hoping he sleeps as well for us once he is home.

It was nice to have Theo totally unplugged from monitors, IVs, and dialysis for most of the week.  We made several trips outside, and walked around the NICU a bit.  I think Theo is getting a bit spoiled, though.  He loves to be held, loves to look around and does not enjoy being in his crib.  Several mornings this week I walked in to find Theo hanging out with one of the nurses in a different corner of the NICU.  He is definitely one loved little boy.

Also over the course of the week, Theo received his first round of immunizations and I learned to give him his epogen shot.  (Epogen is used to treat anemia in patients with kidney failure.  It is also the drug that cyclists are tested for during the Tour de France, because it is considered a performance-enhancing drug since it increases the number of red blood cells.  Needless to say, Theo won't be allowed to race in the Tour anytime soon.)  Theo is given the epo shot three times a week, and Nick and I will administer it when he comes home.  The first administration of the shot did not go so well for me.  I was shaking from head to toe by the time I was done, because I had to stick him three times before I actually gave the shot.  It is not easy to give a shot to an active baby!  Friday's shot was much smoother for mom and baby Theo, thank goodness.  Dad will get his first chance to administer the shot tomorrow.

T. Bruce meets E. Bruce 
The main highlight of the week occurred on Saturday.  First, Nick came home on Friday night after being at a conference since Tuesday.  We woke up with Theo in the room with us on Saturday, and were able to treasure some family time without any nurses or doctors around.  Then, Theo's great grandparents (my grandparents, and my mom's parents) drove down from Richmond and surprised us with a visit!  (Growing up, they would surprise us with visits out in California.  My mom once took us to Jack in the Box for a milkshake after school, and my grandpa was sitting at a table, peering through holes in a newspaper to surprise us.  Another time, he showed up in a costume and "Trick or Treated" on Halloween afternoon.  They decided to continue the tradition with Theo, and it was equally as exciting for me now as it was then.)  Theo was enamored with Great Pa and Great Ma from the moment we handed him over to Great Pa. Theo stared so intently at him, and smiled for minutes as Great Pa whistled to him.  Theo seemed equally intrigued with Great Ma.  We named Theo (aka T. Bruce) after my grandpa (E. Bruce), and I think I will always remember the first time that T. Bruce met E. Bruce.

Although we won't be bringing Theo home anytime soon, his progress has been great this week.  He has been eating well and growing well, and now weighs 10.5 pounds.  He has been smiling a ton, and cooing frequently.  He seems pretty happy!  As we start dialysis again, we are praying that Theo's catheter has healed properly (it still does not look great to me), that dialysis can ramp up quickly and uneventfully, and most importantly, that we will have no more bouts with infection.  I've already told the Infectious Disease team that we hope not to see them again.  They did not take it personally.

I'm a bit sick of the hospital by this point.  The nurses and doctors make it a fun place for us, though, and I  don't worry in the least that Theo is not getting loved when we are not able to be here.  In fact, Theo has created a bit of a rivalry between his main nurses.  Everyone wants to be his favorite nurse.  Here are a few shots to exhibit the competition:

Theo sporting his Nurse Tami bib
Nurse Tami is Theo's associate nurse on the day-shift.  Tami is so good to Theo; she has bought him his favorite toy, and she is able to soothe him so easily.  I'm taking lessons from her!  She is also quite crafty, and her craftiness has generated some fun for everyone in the NICU.

Nick posted the picture of Theo in his "Theo Loves Nurse Tami" bib to Facebook so that Theo's primary nurse, Stacie, would see it.  She was quite jealous!  Tami decided to make Nurse Stacie a bib, too...

... so Nurse Stacie found Theo sporting her bib when she came into work the next day.  She didn't like it, and apparently, neither did Theo.  They are buddies.  Everyone else in the NICU loved it, though.

We still need to take photos of Theo with his night shift nurses.  They are wonderful!  We are so lucky that we have nurses that love him, take such good care of him, and also take such good care of us.  They have been such a blessing in our lives, and I imagine that they will remain extremely important to us even after we leave the hospital, and well past the time that Theo receives a new kidney.

Thanks for all the continued prayers for Theo.  I have no doubt that they have worked and are working.  I hope you all have a great week!

Nurse Stacie and Theo are buddies





2 comments:

  1. What a sweet update, Natalie. As a parent who also has to administer shots...I can say that they do get easier with practice. Caroline even says "YAY" after hers now. :)

    ReplyDelete
  2. Its amazing to me how much you, your sisters, your mother AND your grandmother all look THE SAME!

    loving reading and praying

    ReplyDelete