Wednesday, December 1, 2010

In a funk

I can't believe it has been two weeks since I posted. Now it seems so long I can't imagine how I'll catch up, but I was just needing a break, and in a rather great funk, mostly thanks to one doctor.
Two weeks ago Tomas was at his hematology follow up and that doctor wanted to go ahead and start the IvIg treatments to boost Tomas' immune system. She went through everything involved with me and just wanted to check with the immunologist to see if there was anything she wanted done before we started.
A few days later I get a call from the pediatrician who told me that the immunologist called and wanted Tomas to get certain vaccines and the flu booster, but that she DID NOT think the IvIg was necessary, since he never had a case of pneumonia.
This left me in such an awkward place. I have worked so hard to keep him from getting pneumonia. Breathing treatments every 3 hours, including through the night, rushed visits to doctors and ER's; antibiotics after antibiotics, oral steroids when the inhaled weren't cutting it, and now to find out, if I had let it go a few times and fester into pneumonia we could be getting some help for his immune system this winter. I have not met with the hematologist again so I don't know if her plan is to still go forward, but I fear that the immunologist's opinion carries a lot of weight.
Tomas is sick again, he got sick right before Thanksgiving and is just not getting better. Before the immunology comments I would have had Tomas at the doctor on Friday morning, but since I felt like being aggressive in his short term care was actually being detrimental to his LONG TERM care I waited. He just had his typical stuff through the weekend and early part of this week. Barking cough, cruddy nose, yellow goop from the G tube, and increased d-sats at night.
This morning though he started pulling in on his left side, and something snapped inside me. What the hell am I doing? I'm waiting for my kid to get really sick before I go and do something about it? It's like those (otherwise healthy) kids you read about that die from the flu. Fever of 104 for days and parents were just waiting to see if the kid got better, and you think, why did they wait so long? That was me, I was letting this doctor get to me so much that it was compromising my son's health. Ugh...So I snapped out of it and took him to the doctor. He has a sinus infection, the croup, and needs an x-ray to see if he has pneumonia (the doctor doesn't think so - but something is causing the increased labor in breathing - he said there was some extra tissue or something after one of the surgeries and maybe that was inflamed by the infection - not quite clear on that one yet). The doctor did say this was the second time he had the croup in about 5 weeks - could you pass that on to the immunologist please?
He was able to get the vaccines that the immunologist wanted, she will check his titers in mid-December to see how well his immune system reacts to the vaccine. Those 5 shots combined with a finger prick, a toe prick, a heal prick, and a blood draw added up to 9 sticks for him today and he was not happy about any of them!
Also gumming up the works around here are those pesky liver enzymes. They were very elevated, moderately elevated, normal, mildly elevated and now back to moderately elevated. The liver MRI came back normal, which is great in that there is no visible liver damage but not great in that it leads us nowhere. The liver biopsy, was on, then off, then on, then off, and after a call from GI yesterday asking to bring Tomas in, it is back on again; that appointment is tomorrow. His liver enzymes with today's draw were higher than the last draw so they are trending back up again. Add to that dehydration on the last two lab draws (even though he gets plenty of fluids) and low protein levels (even though he gets plenty of protein) and you have a big bag of who-the-hell-knows.
That also means he will need a specialized platelet test that can only be done in Dallas before he can have the biopsy done. I was in Dallas yesterday for Olivia and could have had it done then, but the GI called yesterday while we were away. So one more trip back to the Big-D. And why, you may ask, was I in Dallas Children's for Olivia? Because she needs to have a cardiac ablation.
She has had heart palpitations on and off all her life (she's 10). About a month ago she had one that was pretty severe and lasted almost 40 minutes and would not resolve with any vagal maneuvers that she had been taught. Her heart was racing over 230bpm for most of that time (thank you Tomas' pulse ox). Mike and I were about to call EMS when it resolved. After a visit to the pediatrician and a pediatric cardiologist, we were referred to a pediatric electrophysiologist. Never heard of such a thing? Me neither. She is a specialized cardiologist who deals with the electrical impulses of the heart. Cute huh? Anyhow, the running theory is Olivia has SVT (supra ventricular tachycardia). She is on a halter monitor until we get an episode recorded and then it is off to the cath lab for her.  For a variety of reasons medication is not an option for Olivia, and the doctor's are all saying that the procedure is very safe. She will have to stay the night, because we live far from the Dallas hospital, just for monitoring. That makes me feel better anyway, I'd rather her be monitored that first night. I suppose if the starts align themselves properly we can have Tomas' biopsy and Olivia's ablation at the same time - a two for one night at the hospital. Stranger things have happened I'm sure.
It hasn't all been medical here though, we have managed to live a little. We are becomming regulars at a local motorcross park, and are getting pretty good at setting up a day camp. Overnight camp is definately in our future, we just need to work out the oxygen, charging the pump, and wait for it to not be 25 degrees at night before we give it a go.
So that is what I'll leave you with, some great pictures of a great day with a great family, who has a great God to keep them going when things aren't so great:


  1. Wow,you do have so much going on and who could blame you for being in a funk.Totally entitled to it.But then there you are,ending the post with the amazing faith that lifts you and carries you through moments like these.

    Sending prayers for all that lies ahead for not only Tomas but Olivia as well.

  2. I wouldn't blame you one bit for not posting very much. You have SO MUCH on your plate!!! But you seem to handle it all so well. I would be completely confused keeping up with everything that you do. But then I just look at Tomas' big smile and I see that it is worth every second that you spend dealing with his medical issues. I need your mailing address but I will send you a message on FB so it will be easier for you to respond privately. Take care of yourself!!

  3. I was just going to say SVT until you posted it. Sounds like that to me. Yikes! Hopefully you can catch it on the monitor and get it fixed!

  4. WOW!! You have so much going on. You know you can call me if you need to vent. Love your camp!

  5. Wow! What a lot to deal with. Always something and rarely any answers. Will keep praying for the whole family and for the doctors.