Thursday, July 22, 2010

I'm not sure exactly when this became a medical blog, but it did. I wish it wasn't, I really, really wish it wasn't.

Yesterday, I took Tomas in for his 18 month well baby and got him undressed for the exam and what was a few bumps of a tiny rash on his back had exploded into bumpy, pimply, marks all over his back. He also now has petechiae on his arms, back and chest. The Dr took one look and called the oncologist. That doc was unavailable but the pedi said that since Tomas' ANC was below 1000 last week he didn't feel comfortable vaccinating without a new CBC anyway.
So no shots. He also missed his 15 month well child because he was sick, so now he is officially behind on his vaccines, and the immunologist called the pedi after I left and said not to vaccinate until after she had seen him and tested him. That appt. isn't until the end of Sept. so no vaccines for a while.
When I left the peds office I took him to the lab and came home. I put him down for a nap, but after 3 hours he wasn't really stirring so I checked his blood sugars. Sure enough - they were low. It had only been 3 1/2 hours since his last feed. I've been mostly ignoring the low blood sugar because I thought it was only dropping after a long fast like 7-8 hours, but last night's were even lower than the afternoon, and today I let him go past 4 hours (with a timer so I would be sure to check and not forget) to see if he would recover or continue to slide down. At 4 hours after a feed he was at 60, 15 minutes later he was at 31. Needless to say I'm not doing that anymore. Thank heavens I had everything ready to go so I just hooked him up and pushed run. I checked again 10 minutes later and he was fine. Probably ignoring the blood sugar thing was a mistake on my part, ya think?
I just have to think there is a connection there somewhere. I just feel like the Drs are all missing something. Like there HAS to be this ONE THING that would explain everything. The rashes, the neutropenia, the fevers, the hypoglycemia - everything. I just can't believe that he could have that many different things wrong with him!
He had a follow up with hem/onc today but his Dr was on vacation, which I didn't find out until a different doctor walked into the room. I wasted 2 hours of driving time, an hour at the clinic and my $15 co-pay to have someone tell me he looked good and come back and see his regular doctor in a month. Good thing I'm not still peeved about it. Tomorrow I will have to call endo for the blood sugars and I have no idea how that is going to play out.

Ok - medical stuff is done, now for some mushy stuff. Some little man has figured out how to un-velcro his
diaper covers and this morning I found a half naked soaking wet baby in the crib. I stripped everything (including baby) and put it in the machine (not including baby), but nap time came around too soon. So I put him to sleep on my bed. No wires. No feeding tube (he had just been fed), no oxygen, and no monitor. I've never done it before. Then I decided something horrible was bound to happen if I left so I didn't. I crawled in and read while he napped. The girls were watching a movie. When he woke up we just snuggled, my face next to his. His hands on my nose and cheeks. So many things I took for granted with my first two babies. Just something so small like lying next to my sleeping son. I have moments of the other infancies that are frozen in my mind, where we were, what the baby was wearing, how she looked, and moved and smelled, and I just know that today was Tomas' moment. The one I'll remember long after his babyhood is over, the one that zooms me backwards in time to relive something wonderful over and over again.


  1. Sounds like a perfect way to sleep to me! I bet all those problems are connected in some way, if only they could figure it out! They need to pull out their textbooks and look at the not so common stuff!

  2. Ugh. That's a lot to process. Praying they find something SIMPLE, and Tomas feels better soon!

  3. Your precious time,all snuggled up with your little guy,is what you will draw strength from on days like today.

    For so long and in many ways still,Zoey's blog is a medical blog of sorts.Not all of it,not all the time but i find it difficult to believe we will ever get totally past the medical stuff,however I do think it has and will continue to,diminish.i have to believe that,otherwise I would go crazy.Same with you sweet momma.Same with your sweet Tomas.

    We continue to pray for answers.In the mean time we just keep snuggling and the rest will fall into place.

  4. Why do I keep reading your blog at work? Your precious moments with the kids keep me grabbing that Kleenex box. Hopefully someone will be able to put all of the pieces of the Tomas puzzle together--soon!

  5. Sounds like a great moment just cuddling and being with each other. Don't apologize for talking about medical stuff. That's just the way things are for NOW. I still love checking in on your blog. I am sure this will shift and rotate and you will in time be talking about other things. I fluctuate between a medical blog and a too tired mommy blog. Sending hugs to you and hoping for some awesome doc to come in and figure this all out.

  6. I'm just loving the second part of your post!! I don't want to think about the first part. It creates anxiety !! But I will say, though I know squat about all of the medical terms and what not, that it does seem that there is a missing piece to all of Tomas' issues. I will pray for the right doctor to say "A HA, That's it"!! I do believe you're right Dorathy. There must be a connection everyone is overlooking.