Friday, July 22, 2011

Another Diagnosis Means Hospital Life Continues

Yesterday was a long day.  Eli had his endocrine/adrenal testing.  It started with having to get an IV placed which is never an easy task with Eli.  Then he was given the first phase of meds.  They caused his blood sugars to go all over the place.  The second phase brought another medicine.  It messed up his blood sugar, dropped his blood pressure really low, made him sweaty, and put him to sleep.  He had to be fasting for this test and someone screwed up and didn't get fluids ordered.  By the time the test was done his body was bouncing back.  He wasn't peeing and ended up needing bladder ultrasounds and IV boluses.
Today began with lots of docs and checkins and such.  This afternoon was his team meeting.  There were 10 plus doctors there.  His endocrine tests came back showing a problem.  He has a growth hormone deficiency. The entire front half of his pituitary gland isn't working.  He will be started on growth hormone injections tonight.  Normally they do 5 a week but Eli requires them 7 days a week.  He will remain inpatient until the meds are started and going properly AND until they have all the approvals thru insurance and the meds ready to deliver.  So we have to soooo hope that there are no denials or appeals as that would mean we could be here for months.  His endocrinologist doesn't believe it is safe for him to be outside of the hospital without this medication. 
They believe that this issue is causing alot of the sweating, dehydration, fluid retention issues, inability to control his body temp, and even some of the fatigue.  The endocrinologist did caution us and all of the other doctors there to remember that Eli does have an underlying issue, Mitochondrial Disease, that is also contributing and may block the meds from being a "miracle cure".  Right now we are just hoping for some relief.
We have a long road ahead and everyone admits that.  There were alot of differing opinions and plans of care ideas at the meeting, but the difficult road ahead isn't one of them.  There was discussion about us not choosing this road we are on, but having to follow it.  How hard it is and how rough it is to see him suffer.  How there are no other options and how we simply have to do what we can.  I hate these kinds of conversations, and they are a real struggle to get thru.
We got moved to a more long term stay room with more space and a bathtub for little man tonight.  We also got moved to a new team that has residents and such available at all hours of day and night, as well as an attending available during the day.  We will see how it all goes.  Bob brought up the 4 older kids and we did pizza for dinner and now everyone is watching a movie.  Little man is exhausted but enjoying having time with his siblings.
We will update as we know more.  Right now we are as always trying to learn how to cope with all of this new information the last few days and how to continue to be as much of a family as possible while having Eli and I live inpatient.


Jamie Carin and Claudio Romano said...

I have been following your story on FB. I am praying for Eli and you and the family. I wish I had some words of wisdom or advice but I can't even imagine the magnitude of the stress right now for everyone. Keep that chin up!

amj523 said...

You are in our thoughts! Thanks given for an answer that explains more of Tiny's problems. Another piece of the amazingly beautiful puzzle that is Eli.

Anonymous said...

Is one of Eli's RN's Claire Ulowetz, by chance?

Heather Tomkins said...

No I don't know an RN with that name. Why?