Wednesday, June 30, 2010

On a whim

I used to jump in the car with the girls and head wherever my heart took us for the day. Sometimes even overnight since Mike travelled so much. That was pretty much quashed with the addition of someone special to our lives. Except for today.
I took him to pedi this morning and he had a bit of news but wasn't really able to decipher it for me. I have a feeling tomorrow's visit will be a long one, but we shall see. As we were driving home, I had this HUGE tug to go out into the world today. So we ran home packed up enough formula for Tomas and were off. I took them to a local amusement park I've been wanting to take them to forever. Since the weather was pretty decent today (low 90's instead of low 100's, hah!) and the small one was NOT nuetropenic yesterday, I gave in to the tug.
I promise I will post tomorrow but for now just enjoy the pictures:

Tuesday, June 29, 2010

ER today, Pedi tommorrow, Hem/Onc on Thursday...answers anyone?

I had to take the little man to ER this morning because he spiked a temp overnight, but his ANC is quite good so he got to come home. Honestly though, this whole "we don't know what's wrong with him" is draining me more than anything else we've dealt with so far. I really hope something turns up soon. If my husband tells me "That's why they call it PRACTICING medicine" one more time I may have to kill him, and then what would that do to my immortal soul? I would NEVER get all my questions answered!
Oh, and Stephanie - I told you so!

Sunday, June 27, 2010

Still home (yah!)

Tomas is hanging in there. He has been running 99.7-100 every day, but that is still low enough to keep him home. One of his lower incisions blistered and pussed up. This is 2 months after the surgery and the second incision to get a small infection. That all just makes me think that whatever is going on with his blood is not over, but darned if the doctors can find it. He has a few other minor things going on but not enough to make me want to go to the Drs office again. He has a follow up hem/onc appt. on Thursday and a few important test results should be in by then. I have been trying to dig out the laundry room as 10 days of no one doing the wash can get pretty impressive.
I've been spending time with the girls and leaving Tomas at home as much as Mike is able to watch him. Yesterday I did take him to Bath and Body works with us and sure enough a sweet woman came over and oohed and ahhed and then touched his head (ok) and then his hand (not ok). It is so hard, I can't figure out how to stop the movement without doing a quick yell to get the person's attention. Since I am ok with people talking to him or even touching his head it gets really weird to try to interrupt if they start to cross a line they have no idea even exists.  I have a sign on his stroller that says "Stop, please wash your hands before touching mine.", but some people are just oblivious. The alternative is to tell them to please not touch at all and then I have to go into an explanation of why. And just for kicks Victoria woke up sniffling, sneezing and coughing this morning. Really, unless we put him in a bubble it is just not a game we can win.
Please pray for my father in law, he is having quadruple bypass surgery on Tuesday. They only found out last week that he even had a blockage so this has come at them VERY fast and my MIL is a wreck.

Thursday, June 24, 2010

We are home. If he runs a temp of 100.4 I have to take him to ER. If his ANC is over 500 he can just get IV antibiotics, any lower than 500 and he gets admitted until he is fever free and ANC climbs. We are waiting for the chromosomal study on the biopsy which can show pre-leukemia activity and the anit-neutrophil antibody test results to come in. He has an appt. with hem/onc next Thursday and everything should be in by then.

Wednesday, June 23, 2010

Tuesday, June 22, 2010

The day we almost went home

Well, since his labs looked decent this morning (ANC of 700, Hgb of 11.4 and platelets of 381 - What? Are you sure that's my kid?) he was going to go home today. The doctor came in, said we could go, and was about to go over the maintenance plan while she was doing her exam. She said he felt warm. He was running pretty warm but his temps had all come up normal. She wasn't happy so she ordered a rectal temp and while we were waiting she watched his sats. He is tachycardic and his respiratory rate is slightly up. His nurse came in and said he looked paler than he did even an hour ago.  Everyone has taken his temp nine ways to Sunday and it is still coming up just over 99, BUT he feels really warm. Plus his heart rate and RR are still up, so here we remain. At this point I don't even want to go home. I want answers. There I said it. Even if it means being stuck here. What I don't want is to go home and then have to come back again like last time. He is also making a squeak sometimes when he inhales so she is going to see if ENT will look at him tomorrow, maybe the laryngomalacia is flairing up and has something to do with all this - who knows!  Every single viral and bacterial test so far has come back negative. The only puzzle pieces we have are a slightly cloudy chest x-ray and  low levels of IgM antibodies. It is not enough to get even a cloudy picture going. No one was really thinking that leukemia was the case anyway since he had started making platelets again, and while it is certainly nice to have that concrete answer we are no further along than before. And BTW he needed to be resucitated with the bag and an Atropine injection to boost his dropping heart rate after coming out of anesthesia yesterday.
I am very frustrated but please don't mistake that for ungrateful. Maybe tomorrow we will go home, and maybe we won't, and that's ok, because I want to take him home when it is safe to take him home.
ps - I have cute pictures and videos but my husband sent the wrong USB cord from home, so it will have to wait.

Monday, June 21, 2010

No leukemia for Tomas!!!

We don't have any other answers yet, but that is the best birthday present ever! And he may go home tomorrow!

Saturday, June 19, 2010

Holding Steady

I had a lovely day today with my girls. Mike brought them early and stayed at the hospital for the day while the 3 women of the house went to a tea party thrown by the Martha Stewart of N. Texas. Amazing lady, amazing hostess, and amazing party. 16 girls were giggling and screaming and mommies were giggling just from watching them. Filled my heart up with a warmth that will last many days.
Sadly, after the fun it was time for some errands but at least we were together and out of the hospital. Did some grocery shopping where the girls almost fell over from the stuff I said was ok. Like donuts, and Pop Tarts, and Little Debbie Cosmic Brownies. I never buy that stuff. Well, we do get Pop Tarts whenever we're on vacation but that is pretty much it. But this time I needed something my husband could prepare (i.e. - open) or that the girls could get for themselves. So breakfast, lunch, and dinner (at least he can grill the dinner meat) are taken care of for the week. The 3 of us drive home ready to put the groceries away and spend some time in the pool before we have to head back to the hospital. As I am pulling up in the driveway I realize I left my house key in the hospital room!!!!!! So I put all the frozen and refrigerator stuff in a cooler from the garage and left it there while we drove back so my husband could then just take the girls home for the night and rescue the groceries. Oh well, at least it was an adventure. We will try again tomorrow as the girls are taking me out to see Toy Story 3 for my birthday (they came up with that all by themselves - go figure!). My husband will spend Father's Day being the awesome father that he is.
Tomas is just hanging out, schmoozing with the nurses and RT people. His ANC was up a little today, but his WBC and RBC and Hgb were down a little today. All in all he is just rolling along. His Dr. said she likes to see the monocyte count between 20-30% and then knows a rebound is coming. His have been dancing between 3-6% so we still have a good couple of days of this at least. The care coordinator came in today to discuss Monday's transport, which brings me to my next point.
I have stayed, with Tomas and for other surgeries of my own, in 10 different hospitals. This one blows them all out of the water. It is like a hotel. I think the campus is only 5 years old, but it is more than that. Someone spent a lot of time thinking about what families need while they are here. The layout and design are just right and the ENTIRE staff is friendly if not downright super nice. They only began admitting oncology patients 3 months ago and there are only 6 kids on the floor now. Only 2 babies and both are in rooms right outside the nurses station. It makes such a huge difference in how well I cope, and I am so grateful he can stay here.
Funny story that highlights how much I need a vacation (or at the very least a blue martini!). Last week my friend said she had just finished her CAT testing and was so relieved. I said, "Oh my God, what's wrong?"
She looked at me a little confused and them smiled and said, "No, C. A. T. test - California Achievement Test". It is a standardized test homeschool moms can use to gage their child's school year. I tell you I may need help by the time this is all over!

Friday, June 18, 2010

The Details

Tomas' platelets are 79,000, his Hgb was 12.6 (it is the only line unaffected by this) and his WBCs are 3.1. The big trouble is with his ANC. It has been dropping steadily since Monday when it was 1100. Today it is 200. The biopsy has been pushed back until Monday the 21st as we are at a satellite campus of the children's hospital and anesthesia does not want to do it here since there is not an ICU. And my little 20lb ball of airway trouble always scares the pants off of the anesthesiologists, LOL. So on Monday morning he and I will be transported to the main hospital (in Dallas) and he'll have the biopsy. Providing all goes well, we can come back to Plano (much closer to home and my girls), if it doesn't go well, then we are where we need to be with the ICU. The NEW oncologist (muy, muy, long story I will have to write about another time - but we are at a different hospital from the one he was discharged from on Wed.) came in this morning and went over lots with me. She DOES NOT think this is leukemia, but of course needs the biopsy to rule it out. She thinks it is an autoimmune disorder which can range from benign to severe. If it is benign than we can go home, all she said about severe was "that would not be good". Only the biopsy will tell for sure. So we wait for Biopsy Monday (also known as my birthday!)
Tomas is back in the hospital. His blood counts are dangerously low and he is having a bone marrow biopsy in the morning. Right now they are thinking it is either his cancer coming back or his immune system has stopped working. We will know more after the biopsy.

Wednesday, June 16, 2010

He's home :)

He is thrombocytopenic, leukopenic, and neutropenic, but he's home. Whatever virus he has is supressing his bone marrow at the moment but his labs today were steady from yesterday, so hopefully this is the bottom. Everyone still thinks it is viral but they have tested for over 30 different ones and they are all negative. The sad truth is we may never know (I have a secret hope that God answers all your questions when you get to Heaven, so I'm sending this one upstairs and will have to be extra good to make sure I get there and get an answer!) He is under house arrest, but is supposed to start climbing soon. He has to see peds before the weekend and that Dr. will decide when to redraw. Oncology is still holding off on the bone marrow biopsy, they just don't feel the need to put him through another procedure. Thank you all for you prayers and messages.

Tuesday, June 15, 2010

Quick Update - Admitted

He was admitted Monday morning because he was still running a fever (15 days) and had a new and improved rash. During all the lab workups at the hospital the docs found his platelets have taken a nose dive and are way below normal, but not critical enough for a transfusion yet (that was the doctor's phrase - like that is supposed to make me feel better). Tonight his platelets were slightly up and no fever but the rash is way worse. Infectious disease is following him and so is oncology. The Oncologist doesn't think it is leukemia but is doing a special platelet test tonight and going to check the smear. The IDC doc thinks it is viral but so far all the tests have come back negative. He is mostly comfortable and doing well, we're just really waiting to get some information. He may get to go home tomorrow if he doesn't run anymore fevers and oncology gives his morning labs an all clear. Mike is staying with him tonight so I can go to a Dr appt. early tomorrow morning (that I had already rescheduled once because he was in the hosp - pretty ironic isn't it?)

Sunday, June 13, 2010


I like to know things. Always, I needed to know stuff. When I was little it was trivia and schoolbooks and such. When I was a young adult it was news and the Wall Street Journal and politics and such. When I was a new mother it was babies and milestones and developments and such.
Since the beginning of Tomas I needed to know. That is why I had the amnio, so I could know. I loved him since the pink plus sign showed up on the pregnancy test. It wasn't about that, it was about knowing. Whenever a new condition or diagnosis came up, I researched and knew. I wrapped my head around it, wrapped my heart around him, and held on to Jesus' cloak for the rest.
But last night while lying in bed talking with my husband it dawned on me that I don't know this time around. The doctors don't know either. FUO (Fever of Unknown Origin), that is what they are writing on their charts.You can't imagine how that grates against the very core of my spine.
And then the most annoying parable in all the Bible snuck it's way into my brain. The pruning of the vine. I've discussed this many times with a good friend, who is also being pruned, and we've both decided it stinks. Yes, it is nice to have lavish attention spent on you by the gardener, who only wants you to produce the most beautiful fruit. But gosh darn it those clippers hurt! I long ago gave over the future to God and let the worries of today suffice. But now, God is asking me to let go of the present. To not know, and to go on not knowing, and to do it graciously. And I don't want to.
I hate arguing with God, because you just KNOW you are going to lose. It hardly seems fair. But then another verse crept in, "To whom shall we go?" Where else is there to turn? Nowhere, so I can only hope that God is looking down on me with the tender, slight smile of a doting father who watches his daughter grumble her way out of the room and go and do what she was asked to do anyway.
Grumble, grumble....

Saturday, June 12, 2010

This is what happens when you kick boxes that you have sent to China...

You wake up the next morning to your baby with a lump on his neck.
I changed his diaper and brought him into bed with my husband and I for some snuggles and I looked at him and saw it.
"Honey, there's a lump on his neck!"
"Where, I don't see a lump."
"It's right there (pointing)."
"oh, well, what do you think it is?"
"Are you kidding me, how long have we been doing this - I think it's cancer babe. Until he is 5 and his risk goes back to normal I think anything that goes wrong with Tomas is cancer. Then when the doctors tell me it is not cancer I am a happy person."
At this point he looks at me like I've completely lost my mind, but he loves me anyway.
So I called the pediatrician and asked if it could be just from whatever else he has going on or if I needed to take him in. Of course they want to see him, so I bring him in for the second time this week.
The doctor said it is a swollen lymph node and that he also has several up under his chin. But the more pressing issue is why is he still running a fever and why are his lymph nodes now infected since we thought we had found the culprit with the whole HIV/HIB bacteria. That bacteria is responsive to the antibiotic he's on so it can't be that causing the trouble.
He called the infectious disease doctors down at the children's hospital and they are going to call me Monday with an appt. In the meantime they wanted the pedi to do a CBC, blood culture, urine culture and a Tuberculosis test. That is not for your standard TB, apparently there is a strain of TB you can get from being in the hospital.
So Tomas got cathed yesterday, but the nurses couldn't get any fluid out. So then they did the TB test, which is an injection of something under the skin with a needle, then he had to go to the lab for the culture and CBC. Since the nurses could not get any urine they sent me home with a clean catch bag and cup. I've never had any luck with the bags, they always spill all over the diaper. So last night I sat with the cup and waited for him to pee. Yup, and can you guess how long it took? You've all heard the stories (or lived the stories) about baby boys and once their diaper comes off and they feel the cold air. Not so. One HOUR later he peed. True.
All in all though he was doing rather well. Until this morning, when he woke up and I went to get him out of the crib and he was HOT. REALLY HOT. A temp of 103 hot, and lethargic, and just all around not happy. This makes 13 straight days of a fever, but it was the first time it went over 100.4. So off the the peds again (3 times now) and the doctor said she would switch his antibiotics to see if that would do it, but if by Monday he is still running a temp he would need to go to the hospital for a viral study. His CBC from yesterday came back and it is slightly indicative of a virus, but nothing jumps out. Good news on that front is his platelets DID bounce back up. Love those bounces up (see it's not cancer!).
His urine showed a small amount of blood in it and some ketones so she is sending it out for a culture, which should be back on Monday. The blood culture should also be back as well, and that is when they will read the TB test.  So, Monday morning it is!

Thursday, June 10, 2010

China is really far away, right?

Since Tomas' last x-ray wasn't so hot his pulm and SLT had a conference this morning and that was that. Give the oral feeds a break for a few months and have another swallow study before we re-attempt. I'm ok with it, I would definitely not feed him at the expense of his lungs, but it was really nice while it lasted (especially during meal times when we could give him a little something with us).
The worst part though is his Speech Therapist told me this morning that she feels like she is in over her head and that he would better be served at a feeding clinic in a medical setting. I really appreciate her honesty, but I am not ready to go that route yet. I do not want the intensity of a feeding program right now. He still has so much other medical stuff going on that I really can't add it on yet, and I do not want to devote that much time away from the rest of my family. YET. There will come a time when I am ready for that but it is not right now. He is still young (17 months) and I would like to give him more time on his own to see if things improve. Especially his tone.
I called my husband to have him try to cheer me up, but that is just never a good idea, you'd think after 20 years I'd know this. He couldn't understand why I was upset about it, and I didn't help by not being able to explain it, but you'd think after 20 years he'd be able to figure it out without me actually telling him. Not. So I got off the phone and really thought about what it was that was bothering me.
It wasn't losing the feeds, I really am ok with that because I really don't want to hurt him. And while the initial switch to tube feedings seemed large and traumatic, the fact that he needs the tube has become rather insignificant since.
It wasn't losing his therapist. Since I said I wasn't interested in a feeding clinic right now she said she's stay on and continue to do oral exercises and speech therapy.
I finally figured it out. It was her saying he needed medical intervention. He needed to be in a medical setting to proceed. One more thing that needed to be fixed. One more thing over the horizon. One. more. thing.
So I tucked it away. Actually, I folded it up, sealed it in an envelope, put the envelope in a box, and put the box on a slow boat to China (after I kicked it a few times - the box, not the boat).
And you know what? I feel better.

Wednesday, June 9, 2010

So the pulminologist called this morning...

I had about five minutes left before heading out for a GI appt. and the phone rings and it is the pulm. nurse. We have a pretty chatty relationship but all she said this morning was, "Mrs. Hernandez, can you please hold, Dr. so and so would like to speak to you." ALL know what that means. I was packing up Tomas' pump and backpack and figuring how many cc's of formula he would need to be gone for the day. Ounces are so a thing of the past in my house. Actually, in my house ounces never happened. It was nursing on demand or now this - ml's and cc's and short division in your head when somebody gives you medical orders in teaspoons or tablespoons as you silently chuckle at the script on the medicine bottle that reads "Give 1/2 tsp BY MOUTH twice daily". Anyway, I digress...
So I was busy with the packing and trying really hard to pay attention to both the task at hand and what the Dr. was saying and making sure my girls had on decent clothing and semi-brushed hair, and had brushed their teeth, and when, oh when, did this get so complicated?
She said he does have more infiltration in his lungs and she is sure he is still aspirating. A few posts back I gave a big hooray for a clean x-ray and no aspiration. Well here's my big BOOOO for more aspiration, grrr... She wants to add another med to dry up his lungs (again) but said there is no pneumonia. Well I sure as heck hope not! This also makes the second time that the radiologist from this particular imaging center gave my son's films an "all clear" when they were not. The only reason I went back after the first time is they are so darned convenient and quick. Bye, bye to you...
At the GI appt. I went over the dying spell Tomas had yesterday morning. I gave him his bolus feed, as I have been doing since Friday, but shortly after it was finished he started sputtering and gagging and then went limp in my arms. I vented him and let his food out and he recovered fine. I, however, still have the urge to crawl in the corner and suck my thumb. I hate those stupid spells, and live in fear of them almost constantly, especially since we are back to putting food in his stomach. Anyway, the GI re-arranged the feeding schedule and restated that it may be too many calories for Tomas and that is his body's way of rejecting them. He also asked if I thought to test Tomas' blood sugar during the episode. Umm, no, I was a little occupied. But that is what he wants me to do the next time it happens. Please note, he did not say "if" he said when. Ugghhh....
Olivia has been saving her allowance and with her recent birthday she got pushed over the amount she needed to buy an American Girl Doll she has been wanting for some time. So, since we were already halfway to Dallas we finished on and got her doll. If you have young girls and are ever in the DFW area, it is like Nirvana for them, but make sure all the grandparents give them money or you'll be broke! Digressing again, I know.
After the store I was changing Tomas' diaper and noticed that one of his incisions has a pea-sized blister on it, and it is filled with green puss. Just great, the surgery is a month old and NOW you are going to get an infection. So a call the the pediatrician and we have just enough time to grab some lunch before the appt. Once we get to the office and I take of his shirt I noticed the blister popped. Noooooo.  Why such a bad thing you ask? Well now the Dr. can't swab it. So she sent me home with the swab stick and said if it fills again just to collect a sample and bring it back. In the meantime, just put some antibiotic cream on it. The liquid antibiotics he's on do not work great for skin infections so we have to wait and see what it is before we can treat it.

Ohh, and by the way, she said his rash is "non-specific". Hah,hah,hah,hah,hah,hah.......

Tuesday, June 8, 2010

Ding, Ding, Ding - We Have a Winner (or should I say culprit?)

The pulminologist said he was pulling in just a tiny bit on the right side, but nothing major and not to change up his meds unless it progressed. She also wants another swallow study since it has been over 6 months since the last one.
BUT, on the way home my husband called and said the pediatrician's nurse called the house and said Tomas' nasal culture came back and he has HIV and to start the script for antibiotics that the doctor gave me the other day.

At least that was what I heard.

Since he was being so calm I was pretty damned sure he didn't really mean HIV, plus I doubt that Augmenten could fix THAT. So I asked if he was sure that was what the nurse said.

Him - long sigh..."yes honey, he has H-I-B, human influenza something something and use the augmentin, he has the flu."
Me - deep breath out and quick nod to God for the letters V and B sounding so alike "But hon, if it is the flu how is an antibiotic going to help?"

This was one too many questions for the man and he said he needed to go back to work and for me to call when I got home. Now here is the really funny part (I tell you he is so LUCKY he cracks me up)
I called the Dr and when the receptionist answered I told her who I was and that the nurse left a message with my husband but that he was not the best relayer of information in the world and she goes "Oh, sure - just a minute" As if saying, "Well of course he isn't sweetheart, haven't met one yet who is."
Turns out Tomas is growing H. Influenzae BACTERIA, not a flu, not a virus, hence the antibiotic. It is pretty much a sinus infection, but their are different types of that bacteria and depending on which one you have determines how sick you get. Tomas never got too sick so hopefully with a few doses of antibiotics it will turn around fast for him. As for my husband, he reached the point of no return a long time ago, but I love him anyway.

Sunday, June 6, 2010

Long, Lazy and Hot (weekend, that is)

Well, Tomas' temp never did break. It has hit at least 100 every day so far. I did not, however, end up taking him back in on Friday. I was just sick of going to the Drs', know what I mean? He wasn't miserable AND he has an appt. with the pulmonologist on Monday anyway. He is still running a temp even now, but it is not getting any worse or any better, and the rash is still there. It is so weird. My plan is to pick up the latest X-ray films before the pulm appt. so she can take a look at them, because even though the radiologist said they were all clear, maybe there is something there that can explain all this.
I also went ahead and switched from continuous feeds to bolus feeds on Friday because I felt like throwing one more thing into the mix and living dangerously. He has done great. I've upped it every other feed or so and he is now taking 4 1/2 ounces every 3 hours (it takes about 40 minutes to run in). It is SO NICE not to have him hooked up ALL THE TIME.  It is just him and me and nothing else. I can hold him and move him and lift him and cuddle him and not have to worry about pulling something. It is freedom and I am joyful for it.
We have had such a lazy weekend. Yesterday we cleaned and shopped for groceries and when the day should have been done we decided we should play a little. So at around 6 the girls made snow cones, Mike and I made, ummm, more mature drinks, and we all jumped in the pool. Mike grilled and we ate out by the pool, then the girls and Mike went dirtbike riding in the last bit of sunshine. They were out on a back pasture with a bunch of cows riding around and watching the sunset. Tomas and I strolled down to watch and, oh how I just love the feeling of the summertime evening warm air on my pool-cooled skin. It is second only to driving home from the beach with a slight sunburn, salty skin and the windows down in the car. I do think it was after 10 before all the kids were in bed.
Today was so HOT there was nothing to be done but Mass and swimming. My family isn't the only ones in our neighborhood enjoying our pool. The local insects are using it as a watering hole. We have been watching wasps and butterflies fly in, drink up, and fly away. At first the girls were afraid of the wasps, but they stay far from where the people are and are really only interested in getting the water. My kids still panic if one flies too close but really they have been remarkably unaggressive. The butterflies, on the other hand, are all over us. They must like the salty skin too. They land on our heads, backs, hands, anywhere they can fill their microscopic bellies with some salty sweet water. This has been most welcomed by the girls.
My week kicks off with a bang and stays strong with 2 Dr' appts. and 4 therapy appts so the weekend  could not have come at a better time. Funny how that works, isn't it?

Thursday, June 3, 2010

"That's an interesting rash."

Really?? Now I've heard the pedi say it is not your typical rash and the oncologist say it was interesting.  He ran the normal CBC w/diff and as far as the rash goes nothing there to explain it. He also recommended I take Tomas to a pediatric dermatologist. Only problem is we are switching insurance at the end of the month. Old one doesn't have a dr on our plan but the new one does. So he has an appt. on July 2nd. Not sure if I should be hoping for the rash to still be there or not.
Tomas' platelets have taken a nose dive since last week. He has some petechiae popping up here and there all over, but his levels are still just above normal.  But since they dropped so much in only 5 days, he needs to go back to hem/onc in 6 weeks instead of his normal 3 months, or sooner if the petechiae spread too much. He dropped like that in Feb. and it was a fluke and he bounced back a few weeks later, so here's to bouncing baby boys!
Monday he started running a low temp around 100. Yesterday it went up to 100.2. I am supposed to take him to ER if it gets to 100.4, so I split the difference and called the ped. Because, really, who wants to go to ER if they don't have to? Only in this really weird world of puzzling babies does a fever of 100.2 earn you a chest x-ray. But that is what he got. A nasal swab and a chest x-ray. By the time I got home the Dr. had left a message saying the x-ray was normal, no signs of aspiration (remember I started oral feeds about a month ago - so a great big hooray for no aspiration!). Further on in the message he said he would like to see the differential from yesterday and he definitely did not want Tomas running a fever for 5 days. I was laughing because how in the world are we going to stop the fever if no one knows what is causing it. But I did get the lab results from yesterday faxed to his office and he called me back late yesterday afternoon. Tomas' WBC make up 81% of his blood, normal for his age is around 50%. Tomas has always run high, sometimes as much as 95%. The ped said he'd like to know what the oncologist makes of it, and I'm thinking, well give him a call.  He also said that if by Friday he is still running a temp that I need to bring him back and he will do a blood culture and a urine culture (poor baby). He said he has looked in all usual places and now will really have to start hunting. I feel pretty bad for the Dr. right now. I know he is very involved in Tomas' care and would love to be able to figure out what is going on, but everything keeps coming back negative. So far today Tomas' temp has been 99.7 all day, so we'll see...
In other news the happy travelers came home yesterday. Oh, how I missed my baby girl (all right - and my husband but I'm used to him being gone)! They had a fantastic time, and more than anything enjoyed being with each other.  She had her picture taken with a lot of the races, got autographs, and they had great seats for the actual race. I know they can't wait to do it again next year.