TPN and Omegaven Again

Well we made it eight weeks to the day TPN and Omegaven free but we lost the battle with SBS…..this time.

Nora has been up and down so much the past 3 weeks and we think it finally caught up to her at the end of last week. On Thursday she became extremely lethargic and it got a bit scary. She seemed very, very sick so we requested for labs to be drawn and her lab numbers had went to crap showing that she was deficient in some nutrients and a low blood carbon dioxide level. So we made plans to hook her up to TPN the next day but as she usually does she made a night and day turn around Friday morning as soon as she heard the word TPN. After talking with her doctors we decided to wait it out over the weekend to give her one last chance to pull through on her own. Today she seems to be feeling much better (still waiting on today’s labs) but she lost all of the weight she had gained back from the past few weeks so we felt at this point we had no choice to but put her back on TPN to get her weight back up and give her some reserves. We are hoping this will be very short term and we can have her back off and line free in a month or less. We have learned a lot about how Nora processes food since she’s been off TPN and feel better prepared to take on the challenge of her nutrition the next time around.

So far today though Nora has done great with her IV’s and is being a very good girl (as usual) so we are hoping this will just be a smooth process and Nora will grow quickly. We have had a lot of IV anxiety because Nora is now a walking toddler whereas when she came off TPN two months ago she wasn’t yet walking. She had just gotten an IV backpack before we discontinued TPN last time so hopefully she will build her strength quickly and be able to wear it during the day. The backpack will be a lot safer and give her the independence to walk around without one of us having to follow her around with the pump.

As much as we hate that Nora has to rely on IV’s for her nutrition we are very thankful to have an alternative way to keep her healthy. We have a love/hate relationship with TPN, even with all of it’s horrible side effects it is what kept her alive at the beginning. And we are so thankful to have found Omegaven so we don’t have to worry about liver damage from the TPN. So for now we are watering our little Nora flower and will watch her grow.