We had another blood draw this morning.  This one was to check their Topamax level to see if it is getting too high, or if they aren’t metabolizing it well. They were also checking electrolytes.  Home Health came bright and early so we got started at 6:30.  The boys are always tough customers.  Even in their NICU days, we usually ended up with the special team when an IV or draw came due.  Every ER visit so far has resulted in more than one poke.  It’s not the fault of the bearer of the needle…they are just difficult.  Today was no different.  Except that their very low temperatures made it even worse.  Long story short, we were able to get Nolan’s at the house, but we had to go back to the hospital lab for reinforcements with Landon.  This might have been a chance to get frustrated, but instead I felt thankful for people who are patient with my boys, and who care so much about taking good care of them.  Our home health nurse drove to the lab ahead of us and checked them in.  Then stayed to help and to hold Landon’s hand.  Our lab techs oohed and aahed over his smiles, and admired his strength and patience.  After our 3rd lab visit in 3 business days, and today’s 3 hour effort…I think they’ll recognize our names from now on.  🙂

I don’t have the results yet.  But in general, today was a better day.  Nolan’s cough is a little worse, and he is spitting up.  But he’s also drinking well enough, and had some good alert time.  Landon made good ground, and while he’s still not himself, he drank far better today.  They continue to have very low temps.  Today I dressed them in layers (like usual) but made sure one of the layers was long-sleeved.  They also had a second pair of socks, a hat, and a hoodie for backup.   Are the loss of appetite, lethargy, cold body temperatures, and cold symptoms even related?  Are we seeing a reaction to medicine?  An illness?  Or just random side effects caused by the Lisencephaly?  Who knows. I’m just glad today was a bit better.  And we hope the trend continues through the night.

I can’t say enough about how wonderful their caretakers are.  Home health, the lab tech, and especially the day care are all so caring.   I get it though.  It takes no time at all to fall head over heels for these guys.

Nolan working out!

Nolan working out!

Landon's first ounces after over 20 hours without fluids. (And a photo bomb by K.)

Landon’s first ounces after over 20 hours without fluids. (And a photo bomb by K.)

Smiling through it all.

Smiling through it all.

All hands on deck!  He knows how to get attention.  ;-)

All hands on deck! He knows how to get attention. 😉

 

Advertisements