A Very Scary and Stressful Day

Justin stayed the night at the hospital last night, and when I got there this morning, I knew right away that something was wrong with Annie.  I rubbed her head like I always do and kissed her good morning, but I knew just by the way she looked and didn't respond to me that something was very wrong and she was very sick.  Justin reassured me that she was just tired, but I couldn't shake the feeling that something was very wrong.

A little bit later the doctors came on rounds.  We like to be involved in rounds to make sure everybody on the team is on the same page and that we all understand and agree with the plan.  Today's rounds were like every other morning... All of Annie's lab values were read from her routine morning blood draw, and they noted that Annie's sodium levels were elevated at 150 (normal range is 135-145, and levels over 160 can be fatal).

Right away, the resident commented that they would need to change her IV fluids to one that contains less sodium.  However, the hospitalist said he didn't want to change anything yet and that he would just check her sodium levels again tomorrow morning. A different resident asked if they should check Annie's levels earlier, sometime this afternoon, but again the doctor said no, just to check them in the morning.

However, also on rounds, they mentioned that her creatinine was still high, indicating that her kidneys have not recovered from the damage that the vancomycin has done.  So then the doctor ordered that her IV fluids be increased from 70cc/hr to 100cc/hr!!  Which only means an increase of her sodium levels even more!  I didn't know quite how concerned to be about that, but it didn't seem right to me.  It didn't make sense to me at the time, but since the hospitalist didn't seem concerned, I just trusted his opinion.

Annie continued to be incredibly lethargic all morning and started having twitching seizures and unusual movements in her arms.  I started getting very concerned about how she was acting, so I called my anesthesiologist father and told him her lab values and how they were continuing to pump IV fluids with sodium into Annie.  He told me to push to get the IV fluids changed or she was going to be in trouble, and said the high sodium was exactly why she was being so unresponsive.

I immediately told the nurse that I was really concerned about the amount of sodium in Annie's IV given her high sodium blood levels.  The nurse talked to the hospitalist and came back to tell me that he said that since the IV concentration was isotonic, that the IV fluids wouldn't increase the amount of sodium in Annie's blood.  That didn't make any sense--to be giving her lots of sodium when her sodium levels were already high!

So I finally left the room to go out to talk to the hospitalist myself, explaining to him that Annie is not acting right, she's very lethargic, and having twitches.  I asked him if he could at least order another blood draw to check her sodium levels again, anticipating her levels to be even higher.  He told me that lethargy only happens when sodium levels are too low (which isn't true) but agreed that we could check her level again.  I knew he was only doing it to amuse me and to get the crazy mom off his back.  And even after that, he never even came in to see Annie himself and see how she was acting!

As we expected, Annie's labs came back with an even higher sodium level of 155! My dad was telling me that as an anesthesiologist, he would never operate on someone with a sodium level that high--that it's too dangerous. Fortunately, the hospitalist finally realized he needed to change the concentration of Annie's IV.

I've been so frazzled and stressed today worrying about Annie and watching her struggle.  We are all still so stunned that it took so much work today to get someone to give her the care that she needed.  If we hadn't intervened, and if the doctor had just waited until tomorrow morning to check her levels again, Annie most likely would not have made it through the night.  Her levels increased from 150 -155 in just 8 hours, so waiting 15 hours more would have put her levels in ranges that would have been fatal.

We were hoping that they would give her quarter strength sodium fluids, but they only did half strength which surprised me again--seems like they would want to be more aggressive about getting her sodium levels normal, but at least they are taking steps in the right direction now.  I'm so relieved that we caught this today.  I can't imagine what might have happened otherwise.

I'm so grateful for a dad who has so much experience in the medical field.  One of the most important lessons I've learned in the last twelve years raising Annie is how important it is to be an advocate for your child.  I often have a hard time telling doctors that I don't agree with their ideas or plans.  I have no medical training other than what Annie has taught me--which is quite a bit, honestly--so sometimes I feel uncomfortable disagreeing with the doctors and telling them what I think needs to happen, but today I knew from the moment I saw her this morning that something was wrong.  This is the second time with this hospitalization that my mommy gut has been right about a problem with Annie.  I knew from the very beginning that something must be wrong with her back--I should have pushed harder for them to test that sooner.  At least today I was more successful as Annie's advocate. 

Annie is continuing to struggle tonight.  She is definitely not out of the woods yet.  They are about to check her sodium levels again since she is still very lethargic and vomiting.  We strongly suspect that she's getting too much fluid and is on fluid overload--too much input without enough output--which can be dangerous.  Please continue to keep her in your prayers that she can stabilize and that the doctors can be inspired to get on top of this and get Annie the help she needs.

8:30pm Update: Annie's sodium has increased again to 157!  Really hoping for some doctors to get on board with us soon!! Justin took some charge by shutting off her IV pump himself.  Going for a CT scan of her brain now.