Monday, September 13, 2010

It's been one of those days.

I woke up at 6. More acurately I stopped trying to sleep at 6 and got out of bed to start the day. My husband made the coffee, God love him. I showered , got all my Tomas stuff together, and then got Tomas together. By a little after 7 we were on the road headed toward the imaging center for the liver ultrasound.
It takes about an hour to get there. About 45 minutes into it I get a call from the center saying that the tech can't make it today, but that they were going to call their backup tech and other imaging centers if need be; since I was driving so far and the docs wanted it asap. A few minutes later the receptionist called back and said the backup tech would be there in 45 minutes. I unload everything and head in, only to have her tell me that the backup tech can't make it. She starts calling all around and finally gets the children's hospital to take us in about an hour. Load everything back in and then drive to the hospital.
Tomas had the ultrasound and since the pediatrician has computer access to the children's hospital I called while driving home and left a message.
After I hung up my 10 year old called to ask if she can do a nebulizer treatment only 2 hours after doing her inhaler as she was wheezing and coughing. I tell her yes and then call the pulminologist as my daughter has now been wheezing/coughing for 12 hours and we can't get it under control with our usual stuff. I was just stepping down from the ultrasound stress and then get a call with my kid telling me she can't breath well! It was only 10 am!!!!
And I had only had 1 cup of coffee!
Later the pediatrician called me back to tell me that Tomas' liver looked really good. There were no signs of liver damage or of an enlarged liver. I was relieved but not relieved. It is such a hard feeling to discribe. Of course I don't want anything to be wrong with his liver but I also don't want to spend any more time NOT KNOWING what IS wrong! The doctor then went on to tell me all about the metabolic disorder he suspects as the root of our trouble. It is the same one the GI mentioned and one that I had found using google. It fits a lot of Tomas' symptoms but not all. It is the one the Fort Worth doctor said would be "inconsistent with Down syndrome." I am very happy that everyone is finally on the same page. Trouble is that the only way to definitively test for it is with a liver biopsy. So that's what is next. We will need to be at the Dallas campus of the children's hospital as it is the only one with an ICU. Since little man is airway trouble in a big way, it will be at least an overnight stay, and he'll need a platelet cogging time tested first. The pedi was going to consult with GI and the 2 of them are going to get it scheduled. I told the pedi I will save all my questions until we find out whether he really has it or not. They will be testing for Glycogen Storage Disease type 1b. You can read about it here: but I warn you it is heavy medical reading. I'll just wait until we know for sure before I worry too much.
Currently, Olivia is struggling. I have been on the phone with pulm twice today, and she has moved her to breathing treatments every hour for 5 hours to see if we can get it under control. So far we are 3 hours into it and it is a no go. The dr. also added on a 2nd antibiotic and oral steroids so hopefully by morning she will be showing improvement. Very soon I must spend some time and energy to figure out why she has so much trouble and we can't keep her asthma under control. She already takes a ton of preventative medication. Her lungs are so susceptable. I'm not sure I want to know.
I have come to the conclusion that although we love each other very much, my husband and I are a BAD genetic match!
One perfectly healthy child would've been nice!
As I was heading out this morning I saw the most beautiful sunrise I have seen in a long time, and certainly the prettiest one since we've been in TX. I just love moments like those. Big, glaring reminders of who's in charge and who created it all.


  1. What a crazy day! Why is there always payback after a nice vacation?

  2. Sometimes I wonder that too! That we may be a bad genetic match. I've never had a single medical problem, and Mondo, who looks like me, had asthma as a toddler but outgrew it. Then I have Tanner who is autistic and major asthma, Carter with major asthma, and then Jax, who is his own story!

  3. You know as I was reading your post, I thought to myself..."poor things to have multiple kids with such tough medical issues". And I was even thinking that maybe it has something to do with parental matches...and then you wrote that. No matter what the reasons, you are the perfect mom to deal with all of these things. You keep plugging on. Someday there will be respite for you...I am sure. Oh, and those TX mornings, how I miss them!!!

  4. The day in the life of a devoted mommy,just doing the best she can and doing it with grace and faith.

    I so get the genetic thing ... we joke that the gene pool was more and more depleted as each child arrived!The oldest,nothing and from there,all down hill,no pun intended of course!

    Seriously,I hold on tot he fact that god knew exactly what he was doing when he sent all these children to us ...I question what He saw in me that led Him to believe my capabilities but then again,maybe it was what He DIDN'T see in me ...

    Prayers as you continue your journey for answers and as a mom to 2 asthmatics .. i feel for you and certainly feel for Olivia.

  5. i don't know how you do it. of course when people tell me that i just look at them like "i have a choice?" lol. really, REALLY hope you get some answers soon. you guys have been hanging around in the unknown for way too long.

    thinking of you guys everyday and am amazed by tomas with every post. despite everything going on he's just chugging right along and do so many wonderful things!!