Tomas' endocrinologist started the fasting test at 2pm. His sugars are being tested every hour. So far: 94-83-71-64. When he hits 60 the lab is called up to verify and when he hits 50 tons of tests are done, rescue sugar is administered and then we are done, and just have to wait for the results. The doctor authorized fasting up to 15 hours if needed, but it looks like he may hit 50 soon. It will be nice to get this over with, he has been lethargic and sleepy for the last 2 hours. Update: While I was typing another draw - 54!! We're almost done!
He has an IV in his arm, and they started another one in his other arm but it didn't take so he now has a third in his ankle. One is for rescue meds and the other it for drawing labs. Unfortunately neither one is drawing back blood. Stuff can go in, but not out. So he is still being stuck for the lab draws, not to mention the glucose tests.

I read this a few days ago in one of my kid's school books as I was preparing for the new school year (set to start Monday!!). God is so good, I read it, liked it and tucked it away, not knowing I would need it just a few days later.
2 Corinthians 12: "My grace is sufficient for you, for power is made perfect in weakness." I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. Therefore, I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.  

Blood work and just getting settled tonight. Had to come in through the ER, took 6 hours - don't get me started. Fasting study and more tests tomorrow.
The bad - many many sticks for Tomas in the near future.
The good - we get our own nurse with the study. Since sugar drops are so dangerouse someone will be here all the time.
The hope - ANSWERS!

Do you think this IV is Tomas proof?

Admitted

He's going in to Cook's Children 2 hours away. Pray for us for logistics. Will update when I can.

continued...

12. Tomas had a very scary hypoglycemia episode yesterday evening and scared mommy good.
13. After I brought him back up and he recovered (still working on me!) I moved him to continuous feeds to  buy us the evening.
14. Called pedi this morning, while I was on the phone I checked Tomas' sugars. 57 (too low) after only being off his continuous for 2 hours. Pedi said don't give him any breaks, keep the pump running until we figure out what is going on.
15. Pedi called back and wants to talk to GI - no longer thinks it is dumping but wants his opinion.
16. Pedi calls back, GI is on vacation, so now he wants to call current Endo.
17. Pedi calls back. He is waiting for call back from Endo, but GI called from vacation (love him!!!) and said it does not sound like dumping and the hypoglycemia is serious and get that baby checked out! (LOVE HIM!!!).
18. Pedi said the Endo group I am trying to get back into at Children's is not being very helpful (Dr. code for they are a bunch of jerks) and it would be better to stay with current endo. I like him but he is 1.5 hours away.
19. Pedi thinks he needs to get admitted to run tests and try different things. Both GI and pedi don't want any changes made at home - too risky. As if I want to repeat yesterday.
20. Just waiting on call back from current Endo, but it looks like he'll get admitted.
21. I used to think it was so weird to be in the postition of praying for doctors to find something wrong with my son, but now I realize there is something wrong, I am just praying for them to find it.
22. To be announced...

Blood sugars, toe sticks, and phones...Oh my!

Mr. Man crashed again the other day down to 31 so I started checking a whole lot more often and I am finding some huge spikes 1 hour after his bolus meals. Tomas' toes look awful as I am checking sometimes 12  a day so we can find a pattern. Thank God he doesn't mind. really, not a flinch or an eyebrow twitch or anything. After a rather large spike yesterday I took him to the pedi who orderd 100 tests (ok - just 11) one of which involves frozen urine. I swear, I couldn't make this stuff up if I wanted. The pedi called the endo clinic at childrens and they thought it might be dumping syndrome. I didn't think so since not all the symptoms match and then the pedi called GI to run it by him. He didn't think so either.  Actually here's the way it went down.
1. Trip to pedi.
2. pedi calls endo while I'm still there.
3. Endo too busy so I go home.
4. Pedi calls after talking to endo - sounds like dumping syndrome.
5. Pedi calls GI to discuss syndrome.
6. Pedi calls me back says GI doesn't agree, get labs done first thing in the morning.
7. Can't get labs done because  I forgot SLT was coming this am, will go tomorrow.
8. Tomas drops his sugar again today and needs juice to get it back up.
9. I call pedi and leave message.
10. Pedi calls back says well maybe it is dumping syndrome, or this or this or that.
11. Pedi calls GI to discuss again , wait on labs until they talk.
12. To be announced...

Various forms of baby torture

First, being forced to wear a pink hat by devilish sisters:

 

Second, the new improved version of CPT (chest physio therapy). It is like the old CPT (me tapping on his lungs) but on steroids! Luckily he seems to have found a way to enjoy it.

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.

All caught up!

On Monday of last week I noticed Tomas' mick-key button (for the feeding tube) was loose on his stomach and not fitting right. I checked the balloon that holds it in place and it had only 1ml of water (should have 5).
By Tuesday morning I would have to fill it before each feed so the weight of the extension set would not bend the button to far. But after about 3 hours it was back down to 1ml.

So I called the doctor and the nurse called me back at 4pm (argh - you all know where this is going) and said to take him to the ER. I asked if I could just take it out at home and put a G in since I haven't used the J part in 6 weeks. She said no because if something went wrong I would have no help.
Ok fine, I go to the ER, and ask them to take the tube out and put in a G. But they won't without speaking to the doctor first. Fine, the ER doc calls the GI (who is NOT associated with the children's hosp) and guess what? He is OUT OF TOWN for the night. The doc covering for him does not know Tomas' history and so everyone (except me) agrees that they should just put in what they are taking out. Which means a GJ.
Of course the radiologist has gone home (it was about 7 by then) so he can't do it until the morning. Ok, whatever, we'll go home and come back in the morning. NOT SO says the doc. The tube has been "compromised" and is not safe to feed through and since he has fasting hypoglycemia they need to keep him and run him on IV fluids through the night.
If I take him home it would be AMA, which my husband still wanted me to do. But I was afraid if I did that CPS would be at my door in the morning.
But wait it gets better. So the doc makes me stay and insists he be admitted for the night but the hospital is FULL. So we get to spend the night in the ER exam room. It is quite nice as far as ER rooms go but there is a bed, not a crib, with side rails that have slats wide enough for me to slide through much less a 20lb baby, and it has a chair. Not a chair that turns into a bed or even a rocker/recliner, but just a chair. So we spent the night with Tomas in the bed with 100 (exaggeration) blankets and pillows bumped up against the rails to keep him on the bed and me with the chair pushed up against the bed and my arm through the slat resting on him to "feel" where he was.
Around 3am the staff brought me a more comfy rocker and I did fall asleep from around 5-8 in the morning. His procedure was done at 10 and we were out by noon.
At 2pm that day Tomas had his annual ECI evaluation I've never had one before and it is quite something when all the therapists show up at the same time. I was exhausted and sick but it went very well. He is 18 months old and "scored" 7 months for physical and 10 months for cognitive/emotional. The numbers are nice to have but really they don't mean much. He is making forward progress and I am content with the amount/duration of therapy he gets and don't intend to push things to help him catch up. That is just not my way. It did drive home my "forever baby" feeling though. His infancy is not the fleeting, snapshots in time, breathing in the scent of their skin kind that I had with my girls. His infancy is the languid, lazy, winding path, breathing in the scent of his skin kind.
That night at the hospital I started running a temp and ended up with a UTI and kidney infection. Fevers and nausea for 3 days while the antibiotics did their thing and by Friday morning I was feeling somewhat better.
But that is when Olivia decided to start wheezing. She had been coughing and had the same cold that brought Tomas bronchitis the week before. Just a sidebar here but what is it with summer colds this year? So, off to the pulmonologist with her and SHE has bronchitis and is wheezing and her lung function is down by 50%. Great. More antibiotics (remember the pharmacists know me?) and more nebulizer treatments and hopefully we can kick it in the butt before it turns into pneumonia. The doctor wants to get to the bottom of why her lungs are so susceptible, which will mean more testing sometime down the road. Maybe I can piggyback onto some of Tomas' tests, hah!
The weekend brought a new rash for Tomas. I did not take him to the doctor yesterday because he is not running a temp and he has a Hem/Onc follow up on Thursday anyway. It really can drive a person (mainly me)crazy, though.

And that's it. I am now all caught up!

4th of July under the umbrella because it was drizzling.

Catching up

After the pulmonary visit on the 6th that Dr wanted to change his antibiotics. He had been on Augmentin since the 1st for the cellulitis around the G tube, but since he had yellow goop and was getting worse, clearly that was not covering for the respiratory infection. So she switched to Bactrim. She asked me to call Hem/Onc first because they had started him on the Augmentin and clear it with them. So I did. The nurse called me back and said it was fine with the docs to go ahead and switch.  So I went to the pharmacy (they know me, hee hee) and got the new script filled.
THE NEXT DAY Tomas had a hematology follow up and not his regular doctor walks in and the first thing out of his mouth is "Why is he on Bactrim?" So I explain but as it turns out Bactrim can suppress bone marrow production and he doesn't need any trouble in that area. So he wants to switch back to Augmentin even though I said his respiratory symptoms were getting worse while he was on it. His ANC is holding steady at 1000 and as far as this other doc knows it is still the plan to have Tomas start IvIG sometime soon.
After I got to the car (holding a script for 10 more days of Augmentin) I started to get angry. His pulmonolgist has worked VERY hard at getting his lungs healthy and she had good reasons for switching. It wasn't working and the Bactrim covers better for the psuedemona bacteria he grows. I call her office and the receptionist puts her on. She asks me "But, did you tell him this and this and that?"
"Yes, I did. "
"Well, ok, fine, then no Bactrim. Switch back to the Augmentin but we'll add in Zithromax, but for 10 days not 5"
Off to the pharmacy with 2 more antibiotic scripts...did I mention they know me?

THE DAY AFTER THAT Tomas had an endocrinology follow up and the doctor  talked about his thyroid (his dosage is fine) and also that the hypoglycemia episodes could be fasting or metabolic. He said he wasn't satisfied with the way that the other hospital ran the fasting test. They ran it for 8 hours, he said it needs to go longer, 12-24. He wanted to admit Tomas for 3 days and run it himself. I must have had a look of horror on my face because he stopped and sat down and asked me what I thought.
I said I really didn't want another hospital stay especially for something I'm pretty confident is fasting related.  The few times we've had trouble feeding him his sugars drop. Why they didn't in the hospital test I can't explain. He said I was probably right and the "chances of him having a metabolic disorder were very small and really how many things can one baby have?"
I wanted to slap him, really. Doesn't he know that is the kiss of death???? Here's the really funny part. I immediately licked my thumb and made the sign of the cross on Tomas' forehead. It was like my dead Italian grandmother was channeling through me. I've never done it before and haven't thought about it in decades. I laughed out loud the whole way home.
Well, that brings everyone up to date for last week. This week brought more but also brought an illness for me so I am trying to rest some more and will catch up again in a few days. In the meantime I'll be catching up on blogs and such.

My Brain is FULL (but at least there is chocolate cake)

Ok, remember a few posts back when I went on about how I like to know things? Well, it can stop now.
I have tiny bits and pieces of information bumper car-ing their way around in my head and the impacts are starting to hurt.

The hematologist called back last week and said they have given Tomas the working diagnosis of Autoimmune Cytopenia. His body is attacking (at various times and in various combos) all 3 cell lines, platelets, RBCs, and most especially, WBCs in the form of neutrophils. No one knows why he is doing it - that part still needs to be figured out. But here's what we know:
He has CD56 on his granulocytes and monocytes
He has decreased IgM antibodies.
He has slightly decreased B Lymphocytes.
He has a mother who had to look all that up before she knew what the heck anyone was talking about.

Before Hem/Onc begins IvIG therapy they wanted immunology to look him over and see if there was anything else to test for or look at. I just got a call from them that the 1st available is on Sept. 27th. Pretty funny. Tomas sees hem/onc tomorrow so I guess they will go ahead and start without waiting on Immunology.

Tomas still has the cellulitis around his G tube, and after a cough filled weekend with a trip to pulmonology this morning he also has bronchitis. Just for fun (not really) I took him to GI this afternoon to go over his feeding plan, find a formula to use when he is in the hospital, and have the Dr check his stoma.

While we were there the Dr asked me some questions and it turns out that night sweats and episodes of tachy/brady cardia are NOT normal! Who knew? Ok, I knew but I didn't want to admit it. It is a neuro-motor issue connected to the GI system and I should bring it up with Tomas' neurologist. Only prob? He doesn't have one. Thankfully, the GI doc said it wasn't a HUGE deal and did not need to be addressed right now. Great - back burner for that one.

Final stop for the day was the pharmacy. With new antibiotics and a new pulmonary drug that needs to be drawn out through a needle and added to his current regimen of neb treatments, which have been greatly increased due to the aforementioned bronchitis. And this might be a good time to throw in that his nursing hours ran out last month and I am waiting for the medicaid waiver to become effective before we get our nurse back.

Now everyone knows how funny I think my husband is (it is his saving grace), but  I am beginning to think that God shares his trait. Just this weekend we were talking about (what else?) Tomas and he said in an exasperated voice:
"What are we going to do about him?"
Me (I think this was brilliant on my part) "Love him."
"Well, I do, but God keeps trying to kill him."
Me (finding the humor in that) "Ok then, just do what I do and pray to find joy in everyday and all the little things."
He considered it for a moment but then went back to his pessimistic ways. BUT God was listening - stupid omniscient, omnipresent ears!

So my theory is that God is hiding joy in all the medical terms and jargon and doctor visits and therapy sessions and medications, and that I have now been challenged to find the joy in the mundane, and sometimes downright difficult. But that is ok, because I am winning.

Turns out joy was hiding in the chocolate cake I made on Sunday afternoon. I found it yesterday when I picked my girls up from camp and they came home and had a big slice of cake and a big glass of milk and talked non-stop about their day and their new friends.

Today it was an easy one. Joy was shining from a woman with (I think) CP. She and I shared an elevator ride up to the clinic and the spirit in her recognized the spirit in Tomas and the two of them electrified the entire cart load of people.

And always, always, there is joy in that smile. The one that draws people from across the room. The one that is more contagious than any disease in the world.  That smile is the reason I know I can't lose, and I am the better person for having seen it.

Heads or Tails

After 5 hours at the hem/onc clinic I'm not sure I can make much out of what I learned, but here goes.

1.He does not have leukemia. Not now and not in the near future. His chromosome analysis came back clean. I asked if this meant he was in the clear, it doesn't. Just not coming our way any time soon. It does not reduce his 30% risk. Bummer. Especially because we already knew he didn't have leukemia so hearing it today was like, "Ok, what else ya got?"
2. Although his labs on Tues. looked great, they did not today. His ANC is back down and on its way down further. He is neutropenic again.
3. His biopsy did show "CD56 expression on the granulocytes and monocytes". That can be associated with leukemia but since we know he doesn't have that (from the chromosome study) it can also be associated with autoimmune disease.
4. He has cellulitis around his GJ tube, which is now being treated with antibiotics. That MAY explain the fever from Tues., but not anything before that. Although, the Dr. pointed out he really OUGHT to be running a temp today due to the infection but isn't. This leads her to believe the infection isn't bad enough to warrant a fever and then that does not explain Tues.' temp.
5. His ANA (anti-neutrophil antibody test) is not back yet.
6.  A biopsy of some duodenal ulcers that he had done last year showed pooling of neutrophils around one of the ulcers.
7. His petechiae are unusual because his platelets are high enough that he should not have them. It could be a platelet disorder completely unrelated to everything else.
8.  The doctor said he was "interesting"


What that all means is that it is looking more than ever like it is a autoimmune disorder. The hem/onc called immunology to go over the labs and some history of Tomas' that I brought with me today. She felt like it was an important piece of the puzzle. It was all the bacteria he has grown in the past (which she said people don't typically grow) and that he was clinically diagnosed as septic at birth. Somehow all that bacteria points to something but I don't know what. She's not sure. but mentioned a few things, most of which I can't remember. The one I can is called HLL and she said it is not cancer but is treated like cancer because unless they get it in check it can destroy the healthy cells. Of course that's the one I remember. She would like to start treating him with IVIG infusions. She wants to run everything by immunology and then will call me tonight.
So I can't really make heads or tails of whether we have an answer or not.
P.S. - the bit of info I got yesterday was that he had CD56 show up on the biopsy but the pedi wasn't sure what it meant.