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!

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

Smiling through it all.

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

We had another interesting day.   Landon in particular was even more lethargic today, ran a very cool temperature, and refused to eat until this evening.  I’ve been on the phone with home health, our pediatrician, our specialists, and our day care teacher.  We kept in touch, and between the entire group, I think we have a plan yet again.

We tested Landon’s CBC today.  His white blood count was good, helping us rule out Sepsis.  (Don’t google medical things when you are worried about your child.  Just don’t.)  They wanted a blood culture, but he was being too stingy!

We were very very glad it was not sepsis, but that left us without an answer.  I finally had a chance to talk directly to our neurologist this evening, and she agrees we are likely just seeing some sort of reaction to the medicine.  Tomorrow morning’s home health appointment will now include a check of both boys’ Topamax level, and electrolyte level.  Hopefully we’ll have a better understanding soon!

Sleeping Peacefully

In the meantime, we’re working hard at keeping them hydrated.  Landon drank 5 oz of pedialyte, his medicine, and 4 oz of milk this evening.  So we feel good about how the evening went.

I can’t wait to get him (them) back to normal.  But despite the multiple pokes, unsuccessful blood draws, lack of energy, and lingering cold, he keeps gracing us with a sweet smile from time to time.  Tough little boy(s).

Sometimes I wonder if half of what I say on here contradicts the other half.  Largely because what is true one day may not be true another.

For example – I’ve been talking about increased alert time, great appetites, and healthy weight gain.

But right now, for today, we’re struggling with all 3.  The boys have had a cold of some sort brewing.  Colds don’t scare me generally.  We’ve had our share of sniffles and overall, they have handled them very well.  This one always seemed different though.  Landon’s cough has been weak, puny from day 1.   They have been very very lethargic, especially Landon.  And their appetites have disappeared.

There are several reasons it is hard to know how to react.

• They don’t always let you know that they don’t feel well.
• We do NOT want to underreact to an illness, especially knowing their immune system is still down from the steroid. (That said…we may overreact.)
• They just finished up their steroid, so that could be the reason their appetite is changing.
• They have been ramping up on Topamax, and just hit their first day at the max dose today, so that could be a reason for their increased drowsiness, and also their decreased appetite.

All that said, Children’s on Wednesday knew we would be at our pediatrician on Thursday, and recommended a chest x-ray locally to check on the subtle rattle in Landon’s lungs.  The local pediatrician had the same plan.  Long story short, he does NOT have pneumonia, and he tested negative for RSV.  So the illness appears to just be a mild little cold that is hitting him hard.

So last week ended up with an expected day of appointments on Wednesday, a scheduled 12 month well baby visit, and an unexpected chest x-ray and lab tests.  And we still don’t know whether it is an illness or a combination of medicine changes causing the problem.  I suspect the latter.

I’m sneaking in extra calories where I can, and we are working hard to get them to drink what we can.  Hopefully this will pass soon, and they’ll be back to eating like champs in no time!  In the meantime, we’ll just wait and see what tomorrow brings!