Before today, we have been struggling with reaching our fluid goals each day. We rarely reach our goal or even come close. I swing somewhere between concern over not getting enough liquids in her and not giving her too much so that it causes her to vomit. Last week she vomited as a result of feeding more than usual. We saw her Pediatrician on Tuesday. I mentioned my concerns over feedings and she thought we should get some labs to check her electrolytes, even though she looks good and does not appear to by dehydrated. I got a call from the Doc on Wednesday saying she had bad news. Oh great...her sodium levels were 10 points above the highest acceptable level, meaning she was dehydrated, and she wanted us to get to the hospital. Ugh...not what we wanted to hear! She said we could not ignore it or we could see increased seizure activity or even coma. You know I got the bag packed right away!
So, we got here and long story short, her sodium levels are back to normal. We had a swallow study today that showed she is not aspirating and is protecting her airway when she swallows. Good news. But that does not help our problem of not being able to get enough fluids in her each day. Tomorrow we will pow-wow with the Peds, Dietician, and the Speech Therapist to come up with a plan. Although we are praying for no tube, we are sure God will give the docs and us wisdom and peace as we move forward with this decision.
Interestingly, since she has been well hydrated she has had fewer seizures and no fevers! Hmmm...we shall see how this all plays out.
I am so grateful for my sweet girl. She is such a trooper, so much tougher than I am. Although I hate being in the H and miss the rest of our family at home, it is a blessing to have some special time alone with my sweetie. I wish I were as sweet and content as she is!
My other trooper, Mario, is home with the girls. They all came to visit in our tiny room today. So fun to give them all hugs and kisses. Olivia asked, "How do you sleep on that bed, Mommy?" Yes, it's a little small. Daddy is taking good care of his girls. Although it is not easy on his own, he is serious about keeping things normal for them and taking care of them himself.:)
I'm so grateful for the visitors, the calls, texts, emails, offers for help. I am touched and so thankful for wonderful family and friends. It means so much.