Friday, February 26, 2010

Afternoon coffee (because tea doesn't cut it)

Last night around 11 Victoria came down and said her throat hurt. I gave her some water and tylenol and back to bed she went. Mike got in from Austin around 12:30 with a speeding ticket in hand ($300!!!!) - he said he was not paying attention - uh, duh!. Men. Around 2 am Tomas woke up with diaper issues, around 4am Victoria came back downstairs with a sore throat again and a big sister who she dragged out of bed to accompany her through the dark and scary hallways. More tylenol, and at 4:15 I was laying a bunch of blankets on my floor so both girls could sleep in our room. At 5am Tomas wakes up for the day. At  7 Victoria wakes up crying, so I figure it is bad enough to take her to the doctor. Tomas had an eye appt. at 11:15 and Olivia had horesback riding lessons at 3. So at 8am I called the pediatrician, and he could see Victoria at 9. Ok, make poor Olivia get up and get dressed so she can watch Tomas, race to the shower , drag Victoria out of bed and quick change her clothes, throw a headband in her mop, grab some pancakes (I make a huge batch and store them in the fridge - and now you know why) and milk boxes and off we go. I can't leave the other two with Mike because he has to leave for Dallas to have laser surgery on his Type A eye disease.

I always laughed at the Army commercial that said "We do more before 8am then most people do all day." Hah!

Well, we made it through, and I think God took pity on me because when we got home the riding instructor said the weather was too bad for a lesson today. This means Olivia really got the short end of the stick today, but she's 9 and will recover, and I get to have an afternoon cup of coffee!

So here's the lowdown: Victoria has another sinus infection. That makes 6 in 10 months and is enough to win her a ticket to the ENT for an adenoid and tonsil checkup. Tomas caught a break and only has a slight wandering in the right eye and is just barely nearsighted. He doesn't have to go back for a year. That is one whole body part that I don't have to worry about or do anything about for one whole year!!! As for my husband (aka - Mr. Type A) if you don't already know he has Central Serous Retinopathy - a leak in the back of the retina which affects his vision - here is the description - CSR is a disease of the young to middle-aged. Men are more often affected than women by at least a 10:1 ratio. Type A personality (competitive drive, sense of urgency, aggressive nature, and hostile temperament) may be a risk factor for its development. And, as I wrote on FB this morning, he is driving himself to and from the appt! As I tell my dear friends all the time, he is soooo lucky I find him funny.

Wednesday, February 24, 2010


The office called this morning and the surgery is set for the 10th. It seems so soon. I knew it was going to be early/mid March but this is only 13 days away. Initially, the nurse set it for the 15th but then called back and said the surgeon wanted an assist on Tomas and that they needed to move it to the 10th to fit both schedules.

Pre-op is on the 9th. It will be a 3 hour procedure, and he's going to PICU afterwards. Expected stay is about a week. My mother in law is flying out to help. She is so wonderful. That means I don't have to worry about meals, or the girls, or the animals, or the house.

When this is all said and done Tomas should breathe better and eventually be able to eat by mouth. The hernia repair should enable the left lung to inflate properly (I still have no idea what is going on with that right lung and if it will even factor into any of this). The nissen repair and the gallbladder removal should enable him to have food in his stomach with no pain and no reflux.

Like I said I knew this was coming but the imminency of it makes my stomach hurt. I also know I will get back to my place of peace and put this all in God's hands. A little preparation and a lot of prayer and I will be ready.

Tuesday, February 23, 2010

Good news!

His platelets are back up, way back up, more than double what they were on the 15th. His RBCs are still slightly low but up from the last draw. The doctor said that he doesn't think anything is looming but he would check the smear and get back to me only if things weren't right.
Now for the typical pattern with my son, who likes to take two steps forward and one step backward. At least you can still make progress that way. His ANC is back down to moderate levels of Neutropenia. Since that has been bouncing around and with this last draw scare the doctor wants to go back to monitoring him once a month. I'll just keep cheching the insurance thing before each appt. until my time is up. He had been cleared to every six months, but honestly, I find this a good thing. I was happy when he was cleared but just so nervous about not having anyone check him. The doctor said he was too medically complicated. No kidding!

Thanks everyone for praying for him and me, it serves to remind me of where my mind SHOULD be.

We are a go!

The oncology group is going to stop taking Unicare in the future but for today we are a go. I will deal with the future when it gets here.  It has been a very long weekend.

On Friday I ended up taking Tomas to the pulmonologist because he was desatting like crazy. He looked so good though and was playing and not breathing hard or anything. She kept him on her monitor for a while and he was fine, she listened to him and he was fine. Initially she thought it was my machine, but as we were packing up to go she pulled the report from the chest x-ray on Wed.

He is still showing signs of chronic aspiration. The only thing left for him to aspirate on is his saliva. So with that info she thinks it was probably just a particularly bad aspiration episode and he then recovered from it. He is still on the med to dry up his secretions and other than that there isn't much to do for him except trach him. He is not nearly bad enough for that. He has a hard time every now and then, but on the whole manages ok.

There was something else on the report though. There is ALWAYS (ok maybe not ALWAYS but it sure feels like ALWAYS) something else. His right lung has trapped air and the lower lobe is expanded beyond the mediastinum (mid-point of the chest cavity) into the left lung space. She was going to pull the films from the hospital and then get back to me. She said it could be cysts, or emphysema. I asked how to fix it and she said "Well, let's talk about that later." That can't be good.

I was hoping to hear back from her yesterday, but no luck. Hopefully, today will be a day of answers. Limbo is never a good place to dwell.

Yesterday I was reminded of how much God will provide for us if we are open to Him. A dear friend, whom I have known for more years than I would like to think about, had all of her logistical prayers anwered. Her 5 year old son is going in for his second heart surgery, this one is an eight hour open heart. The hospital is 4 hours from her house. She was trying to find affordable lodging, pet care, and figure out how to pay for everything . She got a call from her church yesterday and one family has offered their condo near the hospital for them to stay in, another has offered to stock it with food, another has offered to care for her dogs. Her husband's boss is donating some of his vacation days to cover what shortage her husband had. God simply took their family and wrapped them tight in His providence. I so needed that reminder!

Monday, February 22, 2010

18 hours before I find out if my 13 month old is still free from the cancer that has been looming large in my brain for the last week and I get a phone message from the doctor's office telling me they no longer accept my insurance. I have to call in the morning to verify. If it is true than this is the second pediatric oncology group to drop our plan in just 5 months. And pediatric oncologists are not exactly a dime a dozen. At least not the good ones. Arrghh. God has a plan, God has a plan, God has a plan, God has a plan.

Thursday, February 18, 2010

Tomas gets encapsulated

Mike and I are still in waiting mode although we did hear from everyone yesterday.

The oncologist's office called and wants to see Tomas on Tuesday.  So that is it. In 5 days we'll go to the appt. and either his labs will be back up and this was just a fluke, or they won't and we will begin.

I also took Tomas to a GI appt. yesterday. The doctor said he wasn't too worried about the bile as we already know he has gallbladder issues, but he was concerned about the pump just randomly stopping. He ordered an x-ray. Last week when Tomas was at pulmonology she had asked for a chest x-ray if GI was going to do one. She didn't feel it was necessary enough to expose Tomas to more radiation, but if he was going in for GI than she wanted one. So off we went to the hospital for x-rays (GI doctor has offices in the hospital wing).

This is the first time they wanted one of him sitting up. I hope I can describe this contraption well because it really was something else. Imagine a hospital tray (the kind you roll up to the bed). Now, imagine a large circular hole cut out from the center. In the center of the hole is a baby sized bicycle seat. Tomas sits on the seat and his legs dangle through the hole. Then on both sides of him are two halves of a clear plexiglass cylinder. His arms get raised straight up and the two halves are brought together to contain him and keep him from moving. The whole thing is then velcroed together and just his little fingers are sticking out through the top of the cylinder. There is also a space where his face can stick out so he can breathe. The girls and I called it Tomas in a tube.

The tech warned me ahead of time that he would cry as it was meant to restrain him, but it doesn't hurt. He didn't cry, he blew raspberries and bah bah bahs and dah dah dahs the whole time. It was pretty funny. The tech was shocked and asked me if he ever cries. He does, he's just been through a lot worse than encapsulation before!

Anyway, I should hear back from GI today and pulmonology too.  Today he has an endocrinology appt. and than we are done with doctors for the week. Hooray!

Wednesday, February 17, 2010

Ash Wednesday

I haven't heard anything yet. I did actually sleep last night.  I always do, it is one of the graces God has sent my way. If I am having trouble falling asleep I grab my rosary and pretty soon I am resting in the arms of our Blessed Mother. I am feeling rather melancholy this morning. Watching baby Kelsey falter and waiting to hear what to do next about Tomas has left me rather drained, so I sat down with the computer and a blank posting page and I prayed. God undusted this for me from the very back of the attic of my brain. I used to love this prayer but it has been buried for so long I had to look it up to make sure I got it right:

The breast-plate of St. Patrick

I arise today
Through a mighty strength, the invocation of the Trinity,
Through the belief in the threeness,
Through confession of the oneness
Of the Creator of Creation.

I arise today
Through the strength of Christ's birth with his baptism,
Through the strength of his crucifixion with his burial,
Through the strength of his resurrection with his ascension,
Through the strength of his descent for the judgment of Doom.

I arise today
Through the strength of the love of Cherubim,
In obedience of angels,
In the service of archangels,
In hope of resurrection to meet with reward,
In prayers of patriarchs,
In predictions of prophets,
In preaching of apostles,
In faith of confessors,
In innocence of holy virgins,
In deeds of righteous men.

I arise today
Through the strength of heaven:
Light of sun,
Radiance of moon,
Splendor of fire,
Speed of lightning,
Swiftness of wind,
Depth of sea,
Stability of earth,
Firmness of rock.

I arise today
Through God's strength to pilot me:
God's might to uphold me,
God's wisdom to guide me,
God's eye to look before me,
God's ear to hear me,
God's word to speak for me,
God's hand to guard me,
God's way to lie before me,
God's shield to protect me,
God's host to save me
From snares of devils,
From temptations of vices,
From everyone who shall wish me ill,
Afar and anear,
Alone and in multitude.

I summon today all these powers between me and those evils,
Against every cruel merciless power that may oppose my body and soul,
Against incantations of false prophets,
Against black laws of pagandom
Against false laws of heretics,
Against craft of idolatry,
Against spells of witches and smiths and wizards,
Against every knowledge that corrupts man's body and soul.

Christ to shield me today
Against poison, against burning,
Against drowning, against wounding,
So that there may come to me abundance of reward.

Christ with me, Christ before me, Christ behind me,
Christ in me, Christ beneath me, Christ above me,
Christ on my right, Christ on my left,
Christ when I lie down, Christ when I sit down, Christ when I arise,
Christ in the heart of every man who thinks of me,
Christ in the mouth of everyone who speaks of me,
Christ in every eye that sees me,
Christ in every ear that hears me.

I arise today
Through a mighty strength, the invocation of the Trinity,
Through belief in the threeness,
Through confession of the oneness,
Of the Creator of Creation.

Today is going to be a great day!

Tuesday, February 16, 2010

What the doctor said

His ANC is back to normal BUT his platelets have dropped by over 100,000 in just 10 days. His hemaglobin is also on its way down. The doctor is faxing everything to oncology and I should hear something by the end of the day.
I am done worrying about neutrophils. Now I am waiting for someone to tell me this is not the beginning of the leukemia coming back.

Please pray for this little one

This family lives in the Dallas/Fort Worth area. I talked with them when Kelsey was first born as she and Tomas have many of the same issues. She is not pulling through well. Please pray for her and her family.

Waiting for the doctor's call....

Everyone remember the weekend before last when I was praying to keep Tomas out of the hospital because of low ANC and respiratory stuff?

Well, he did seem to bounce back for a few days and I really thought he was going to beat whatever was going on, but by Thursday of last week he was turning downhill again and had what looked like a sinus infection (gunk in eye and nostril). On Friday he had a standing appt. with his pulmonologist. She gave him his Synagis shot, started him on some antibiotics, said his lungs sounded great (thank God), and ran a culture on his sinus drainage.

Ok, still not too terrible. Most of the weekend passes without much changing, but by Sunday evening his petechiae (red spots) are getting worse and new patches are cropping up all over. I don't like those spots, they are never a good sign. He had been running a low fever but it started spiking Sunday night. He was still playful though, and his sats were good, so nothing severe enough to want to make me take him to ER.

Yesterday, I was going to take him to the pediatrician but he started the day out just fine, except for those petechiae and his heart rate was elevated even while he was resting.  So I just thought I'd watch and wait. Mid-day when I was ventingout his G port there was a clear bloody liquid and a lot of bile in his stomach, so I did end up bringing him in.

The nurse asked me what was going on. So I told her he has been on antibiotics for 3 days but is still running a low grade fever, his resting heart rate is climbing into the 140's, his petechiae are getting worse not better, his pump kept beeping clog in line even though there isn't one visible,and  I vented out about 15 cc of bile from his g port. She looked up at me and said "Hmm, so just your typical baby stuff." That made me laugh.

The poor pediatrician. I didn't know what specialist to bring Tomas to because he has the blood issues going on and the GI isssues going on, and I have no clue if they are related or not. So I told the doctor I would just start with him and let him figure it out. That made him laugh.

He spoke with the pulminologist and the GI and then came back to talk with me. GI wants to see him to figure out what is up with his tube. The pulminologist told him that Tomas' culture came back positive for the pseudomona bacteria, but it is responsive to the antibiotic he is on, so that is not likely the culprit. He ordered more lab work to recheck his ANC. He said there is something called neutropenic fever wich could account for the fevers, high heart rate and petechiae. He aslo said that with all those symptoms, if his ANC is still low we may have to hospitalize him until it passes.

Tomas slept poorly last night and was very fussy. Something was definitely bothering him. But this morning he is playing in his crib like normal. His heart rate is still getting up into the 140's though, it is so wierd. I am just waiting for the doctor to call and trying not to pre-worry (hah!).

I'll keep you all posted.

Thursday, February 11, 2010


I braved the weather for pulmonary appt.s for Tomas and Olivia this morning. The roads were actually fine and the scenery was beautiful. Olivia said it looked like Narnia. I'll catch everyone up on what all the doctors and therapists said this week, but for now just enjoy the snow. We could get up to 8 inches!

Tuesday, February 9, 2010


I met again with Tomas' surgeon today in order to review everything that is going to happen. I asked if it was possible to save the gall bladder. He said when it is symptomatic like this and has been problematic since birth it is better to remove the gallbladder because it is at a great risk for either continuing to be trouble or even to become infected and lead to liver damage.

I asked how he would be fed post surgery. The doctor said to try the g-tube straight away, once he is cleared to eat, so we can test it out while he is still in the hospital. In theory it should work since the surgeon is re-doing the Nissen, and removing the gallbladder. The reflux and gallstone pain are the two reasons we are not using the G now.

I asked if fixing the morgagni (liver) hernia would allow his left lung to inflate. He said it should with time. That, and fixing the reflux, should allow him to eventually come off the oxygen .

I asked if he would go to PICU post-op and got the answer "Oh yeah - and if they don't have a bed we'll cancel." And I found myself relaxing my shoulders and actually saying "oh, good."

Oh good?? It is so weird to be grateful that he will be in ICU, but I know the level of care is unmatched anywhere else in the hospital. I hate the thought of him being so high risk that he is defaulted to PICU. And why are we having this surgery anyway?

He is perfectly happy and healthy on the J feeds. He is gaining weight slowly, but steadily. Does it really matter if we can't put food in his belly?
I want to grab my baby and run far, far away.
I want to leave him attached to his feeding tube 21 hours a day.
I want 3 surgical scars across his abdomen to be enough.
I want to see smiles and hear giggles, not screams of pain while we wait for meds to take effect.
I want bright, alert eyes to meet mine. not the groggy sedated ones that come with the pain meds.

So why are we having this surgery?
For cake. A birthday one. For Tomas. For next year. That he can eat.
So when he grabs at our food we can give it to him and not try to distract him with some toy he doesn't want.
So at Thanksgiving dinner he can eat turkey.
So he can join his family at the dinner table for the rest of his life.

Monday, February 8, 2010

We made it through the weekend!

Hooray for Monday morning. Now. at  least there is one stop between him and the hospital. He actually has not got any worse. He isn't any better either, but I will DEFINITELY take not any worse. I'm thinking he's gonna beat it. We still have his low ANC to deal with, but that just means house/car arrest and lots of hand sanitizer until his numbers climb. Thanks everyone.

Sunday, February 7, 2010

Praying to stay out of the hospital

Friday Tomas had his one year check up. He had started breathing just a teenie bit harder than normal and sounded slightly congested. His doctor was not impressed with the symptoms, and really it was so slight it is pretty much the only mamma can tell the difference thing. However, beacuse Tomas has broken out with quite a few petechiae (small red spots that don't blanche under pressure) he ordered a CBC. The rash can be indicitive of a low platelet count, and since he has a history it was time to check.

His platelet count and RBC were both normal (yeah), but his ANC (infection fighting WBCs) was back down again, and his overall WBC was high. The pediatrician said that probably means he has a virus. He said they are seeing some other nasty stuff other than just RSV this year. To try to make it through the weekend and call if I needed anything.

Yesterday he was breathing harder than normal (even for those who are not his mommy), and bouncing his O2. I increased his neb treatments to every 3 hours and put him on O2 for the whole day. He ended up at 1 1/2 liters per minute. 2 Lpm is as high as I can go at home because he is still so little (16 lbs. 2 oz.  - he was born at 5 and we have fought for every ounce of those 11 pounds thank you very much!). This morning he had a coughing spell around 4 am (again, why do these things never happen at 4pm?????), but I suctioned him and he went back to sleep for a while. He is holding his own and I am hoping that just staying on top of his breathing treatments will be enough to help him fight this off. Today he has had periods of looking tired and out of it, but then will bounce back and be his playful happy self, so keep your fingers crossed!

Here is his rash - it is hard to see the redness with the camera but he looks a lot like Opie from Mayberry. The first time it happened I was really worried they would be permanent, but they fade after a little while.

Friday, February 5, 2010

Vacation re-cap and etc...

Ok, for the first time since we've been home I am sitting in front of my computer with a cup of coffee and more than 5 minutes of free time (there is also a chocolate chip cookie involved here, but shhh.... or the kids will think they can have one for their lunch too.)

The trip to FL was wonderful. It was so great to see friends and family and also to party at Disney for a few days. Victoria was tender from her fall for the first few days but recovered just fine. Tomas' biggest problem was a low fever for a few days, but an increase in neb treatments and a little more O2 support and all was well.

Starting out: My birthday boy is one!!!!

Miami:  visits with a Great-Aunt and lots of cousins, food, noise, and warm weather

Punta Gorda/Port Charlotte: more cousins, animals, dogs galore (my in laws have 6 - they live on a small farm). I wish I took more pictures of this part, but we were just so comfy and enjoying ourselves that I forgot.

Disney: not much to say when you are at the happiest place on earth. We had friends meet us there who stayed at the campground, and we were out from 9 in the morning until 10-11 at night every day. It was a huge accomplishment for me and means trouble for my husband now that I have figured out I CAN be fun and fancy free again.

Last day: A visit with friends from our old town. Again I wish I took more pictures but we were just having so much fun.

Back home: My darling Victoria turned 7 yesterday. She is a free spirit and challenges me at every turn. I can not begin to describe how intense a person she is. Every thing she does she does with her whole being. I think the story that sums her up best is from my sisters wedding. My dad had been in the ICU at the hospital battling throat and stomach cancer for the 4 months leading up to her wedding. He died just a 10 days before the ceremony. It was such a juxtaposition of events to have the funeral and then the wedding so close together. The wedding was at a beach and the weather was a light mist just starting to clear up. Everyone was somber and joyful at the same time. A few yards away from the wedding arch was a huge flock of seagulls resting on the sand. Olivia and Victoria were the flower girls. Olivia was dutifully paying attention to what was going on but Victoria was absolutely itching to chase those birds. She kept glancing back at me and a couple of times made like she was going to make a break for it, she was 5. It had become a bit of a distraction for me and my mom to keep her still. As soon as the ceremony was over and the pictures were over she looked at me and I nodded. She took off for those birds in a leaping gate. Of course the birds took flight and flew right over the whole wedding party. It was a magical moment. I turned to my mother and apologized. She told me in her tired, weary, I've been through too much voice, " Don't apologize for her. She is more alive than any of us." And that is my Victoria, more alive, more jubilant, more miserable, more whatever she is at the moment. Victoria is just more, and I love her dearly.

Monday, February 1, 2010

We made it! We had a fabulous time. Everyone stayed healthy. Family was awesome, friends were awesome, Disneyworld was awesome. I am so grateful for that time away. Pics and details are to come later. Thanks for all the prayers for a safe trip - they worked!