What's been going on with Tomas

First, Olivia and her dad are having a bast. She had her picture taken with some of the racers, and got many autographs as well. He is remembering to feed her and keep her warm, and they are both enjoying themselves tremendously. Victoria has been successfully bribed and also made two new friends at a birthday party this weekend so is feeling much better about the whole thing.

Now, on to Tomas. He has a rash. Sounds simple enough, right? Those of you that know us well should not be surprised when I tell you that it "is not your typical rash" (direct quote). 3 weeks, 2 visits to the pedi, 2 lab draws, 1 fax to the oncologist and 1 appt. come Tues afternoon. For those of you that know the game, eosinophils are high and nuetrophils are low. At first the ped thought is was viral, but the rash pattern doesn't match, Tomas has had no fever, and it should have run its course by now. But he went ahead and tested him for all the common stuff  anyway, all negative. Then he thought it was an allergic reaction to something, but I can't figure out what it could be. We have been using the same everything forever around here (I am a creature of habit), and it can't be food. Even though he has started some oral feeds it is the same food I have been putting in his tube for months now. Also, again the pattern doesn't fit. No rash near his mouth or bottom, and there are those darn lab results to tie in.

So what is this mystery pattern? It is on his back. It started about mid torso and then slowly spread down to his tailbone, but no further. Then it slowly spread up his neck to his hairline and just a touch on the top of his shoulders. It has taken about 2 weeks to spread that much. It is small red bumps, and it fades and flairs and some of them fade to petechiae. Sometimes it looks very faded, as if it were from a month ago, other times it looks just as bright red as can be. I haven't been able to find  pattern at all. I thought maybe sweat, but sometimes when he's sweaty it is red, other times it is faded. And the Dr. said that wouldn't explain the lab results. At this point he thinks it is something systemic and has happily faxed everything off to the oncologist as he spent 20 mins on the phone with me Friday morning telling me in very professional language that he has know idea what it is. He then wanted me to get Tomas seen by a dermatologist that day.

Yeah right. On a FRIDAY before a HOLIDAY WEEKEND as a NEW PATIENT??? I called a few offices but of course the Dr's were out. Then I couldn't figure out what to do, so I did nothing (always a safe bet!). Plus, I knew Tomas already had the oncology check up on Tues., so I'm not worried.  My plan now is to see what Hem/Onc says and go from there. I'm hoping I don't have to add an 11th "ologist" to my list.

And they're off...

My husband and my oldest daughter (who just turned 10) are heading to Utah for a long weekend to watch some races at Miller Sports Park. They are driving 20+ hours each way. This is their first father daughter time away for more than a day. I'm trying not to be a nervous mother hen, but did remind my husband he does need to bring her home with him when he comes back.

I just can't believe she's 10. It flew by. Just a few minutes ago I was the one taking road trips with him; up the winding mountains to Big Bear, racing a hurricane that was going to close bridges and seal our only exit out of FL when we really needed to be in Atlanta (can't remember why!), and my favorite - heading from South FL up to Orlando and over to Kennedy Space Center. I remember loving the way you could look to the left and see the ocean and to the right and see the river. Little did I know that God would have us living there just a few years later. We lived in that town the longest we lived anywhere, and it still owns my heart.

But back to the present...my 2 happy travelers left early this morning and will be driving about 14 hours today. I sent a pillow and blanket in the car so Olivia can take a nap later. I spent last night and this morning going over a checklist of everything she packed and still had to call them back 2 minutes after they left because she forgot her sneakers.

My husband doesn't really do the meds in our house. He helps when I need it (and he's here) but it is definitely directed and dosed by me. I have sent a huge arsenal of stuff with them as she is my asthma queen. I am a little concerned because it is 95 here and it is only going to be in the 60's there. So I think the temp change my do its thing to her lungs. Hopefully not, but my husband will get a quick education if it does. Luckily, she is old enough to tell him when she is feeling bad. I made her bring a bag to take to the sports park with her to keep her inhaler close by, and thanks to some good friend, we have on loan a portable nebulizer that my husband is keeping in the car. See, no mother hen here! They have been gone 2 hours and I haven't called yet (unless you count the sneaker thing).

My little one is left alone at home and is pretty miserable. She has never spent any significant time away from her sister. She  could've gone but doesn't like loud noises, and motorcycle races are REALLY loud. So she is convinced this will be the worst week of her life. We have already bribed her with a build a bear that is going to be purchased tomorrow, and today she got a last minute invite to a birthday party this weekend so hopefully I can keep it as fun packed as possible to make the time go by.

10 Years ago...

today I was going to be a career woman. I spent 5 years in college earning a specialized degree and had an excellent job making tons of money. I wore pretty clothes everyday and everyone at work listened to me. They had to, I was in charge of my department. I was going to have my children, take my 3 month's maternity leave, find an excellent daycare and go back to work. But that was 10 years ago today.
Ten years ago tonight my first daughter was born. It was a horrible c-section and she aspirated on some fluid so I didn't get to see her for 4 hours after she was born. In that 4 hour window my world rocked, crumbled and reformed. I was not going to do anything ever again but be a mother. At that time I was making about 40% of our income, but I really didn't care. She was so little (I use that term realtively speaking as she was 9lbs 8 ozs) and no one else was going to care for her the way I could.
So my husband and I spent the next year slimming down our budget, and I have stayed home ever since. She is my utter delight. She is my soulmate- we are so alike, she challenges me to do the very best for all of my kids. She is smart, caring and is a peacemaker to the core of her being.

Happy, happy birthday my darling Olivia!

Since Tomas surgery went so well he has been cleared by pulm/GI/surgeon to try oral feeds with a honey or thicker consistency (he had 2 Swallow studies a while back and passed for honey).
He has always been interested in food and by the grace of God has zero oral aversion even though he has only been fed by mouth for 2 weeks out of his 16 months. It was a strange twist of fate to have a baby begging for food he wasn't allowed to have.
But not anymore! He loves when the little red bowl comes out and that bib gets snapped on - he is ready! So how is it going? A resounding so-so. He is interested just fine and has only grown tired a few times, most of the times I stop before he is done because he has a funny swallow. I am pretty darn sure he has aspirated or near aspirated or something akin to that at just about every attempt. His nurse was out last night and said she heard a small rasping in his upper left lung. Most of the time he will cough within a few minutes of what I think are the bad swallows, but sometimes not.  I just keep thinking he passed the study twice, but each time was only like 18-20 swallows. In order to sustain himself he'd have to swallow a whole lot more than that.
It took so so so so long (ok you get my point) to get his lungs healthy, I am overly cautious I'm sure.
This week he also switched from continuous J feeds to continous G feeds and has been running a fairly high residual. Between 45-65ml when he is only getting 45ml/hr. His GI reduced the rate slightly and said when you get a residual higher than the amount you are putting in an hour that's trouble. He said it could be he is getting to many calories for his body (he gets 752 a day), and his body is just not running through all his food because he doesn't need it, or it could be a motility issue. Easy way to find out is to reduce feeds for a little bit and see if that helps. Either way it means no bolus' in the near future at least.
Update: SLT was out today and she cut him back to 12 spoonfuls per attempt. When he can handle those 12 with no problems for a week we can up them. He is also battling some sort of allergic reaction as one of his blood counts are off. The doctor doesn't think it is environmental since he does not have a runny nose or watery eyes. It could be food, or something he is coming in contact with so I am now playing detective, and also drugging my boy with benadryl.

being goofy!

In the past 2 weeks since Tomas' surgery I've gotton several lovely packages in the mail to remind me of the goodness of the world.

I read a book a few years back called The Privilege to be Catholic by Father Oscar Lukefahr. The major tenet of the book is something called the sacramental principle. In a nutshell, that everything God created is good. Can someone be turned toward evil, or something be used in an evil way? Of course. But at it's core, the essence of the created world is good. I have so often though about how life's trials and tribulations are opportunities to witness that good. People rise to the occasion and bear fruit to the seed of something wonderful planted in us all at the dawn of creation.

So when a prayer group that has followed Tomas from the beginning sent a lovely card, and when my husband's friend sent a thinking of you card, and when my husband's company started a collection that snowballed into tremendously generous gifts for us; I smiled. Not just the happy, these are wonderful things and it is so nice that people are thinking of us smile, but the swelling smile that starts at the center of my body and radiates to the very edges of my skin. That smile is because someone's soul has reached out and touched mine, and it feels good.

Then , one day last week I got a package in the mail from a 7th grader. She made Tomas a card, and wrote a lovely letter, and her spirit shined from every perfectly formed word she wrote. How amazing is it that she remembered a blog her mom had read and wanted to do something for that baby. How humbling it is to know that she lives her faith in a way I never even knew existed when I was in the 7th grade.

There are so many things that have been done for Tomas and the rest of us, meals, cards, packages of clothes, toys, gift cards and others I can't think of right now. He is 16 months old and this has gone on the entire time. I have no words adequate to thank everyone for the kindness sent this way, except to say that God knows what you have done and though it may seem insignificant to you, it means everything to me.

Thank you lovely friends, near and far.

A great day

My very dear friend's 5 year old son was able to avoid a very long and complicated OHS today. He did have OHS but not the one they though he would need, his doctor was able to do a repair instead. Eventually, he will need the other, BUT NOT TODAY!!!!
You can read about them here:

http://www.caringbridge.org/visit/keeghanbrown

We (umm..I mean Tomas) have a nurse!

I asked for one waaayyy back when he had RSV and I was working around the clock to keep him home. It took this long to get approved, a home intake done, and someone to come out. But tonight she was here!
She is coming for the dinner rush (better known as the witching hour at my house) from 4-8 once a week. That means that one day a week things are calmer here at dinner. Usually, there are 3 meds to deliver in that 4 hour window, a breathing treatment, CPT, and at least one refill on the feeding pump. But tonight, I got to make dinner, do a load of laundry, clean the kitchen and bathe (wash hair) the girls. It was so nice. When the pump beeped, the nurse fixed it. When Tomas needed his diaper changed, the nurse did it. When Tomas scooted on top of his tubing and popped the med port open, the nurse cleaned it up and set him going again. Breathing treatment - nurse. Pill crushing/blending/blending/blending - nurse. Seriously, he has one med (synthroid) which is a bear to mix. Tonight I walked her through the bedtime routine of venting, then taping on the pulse-ox probe (he has considered it his personal challenge to get free from the red light on his toe), changing out the tender grips, putting the cannula on and then moving the pump from the backpack to the IV pole. Next week all I have to do is walk in and kiss him goodnight.
I felt a little weird about that until I realized that 6 nights a week it will still be me. Just one night a week I get a tiny respite. And it is not even for me, tonight I started a science experiment and made a cake (lemon pound - yum) with the girls.
I have only 16 hours of nursing time approved from the insurance company but the agency is working on getting it extended or finding another program that will cover it. With Mike being gone so much during the week it will be a huge blessing to get that covered.

A great Mother's Day Poem for ALL of you!

Happy Mothers Day - I came across this great poem on another site and wanted to pass it along. I wish I knew who wrote it, but I don't.

Mom's are the greatest in the world:

1) Because we never thought that "doing it all" would mean doing this
much. But we do do it all -- and then some

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT, nay saying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude
remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door
looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders and students. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat
chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our
families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/etc...

The scent of Jasmine

Since this blog is my therapy, my place of refuge, where my thoughts run free, I sure hope this works.

When we were leaving the hospital last week a thought hit me. The day was gorgeous, sunny,warm and a soft breeze that carried the sweet fragrance of a wall of blooming jasmine with it. My husband parked next to the jasmine and as we walked to the car I really noticed the beauty of the day. I buckled Tomas in and as I stood in the space between his car seat and the door, it hit me - He's fixed! Completely fixed! Since he was about 7 months old this surgery has been looming. The magnitude of it grew with every additional procedure they wanted to do at the same time. For months it has been in the back of our minds, and we would talk wistfully of the way things would be "after the surgery". As the time drew nearer the fear came closer and I spent the last several months in a relatively constant state of prayer, that I might be made strong enough to walk through the fire one more time. But here we were, on the other side, and with a surgery that went better than our wildest hopes.

I'm not sure I can successfully describe the elation of that moment. It was a lightness, a brighter, warmer, more fragrant day than it was just ten seconds before., and I drank it in. We drove home in a peaceful, restful silence, and it was lovely. Tomas' recovery continued to amaze everyone. He was sitting up after the 4th day and by Tuesday he was playful and happy and just his regular cute self.

Wednesday morning I was changing his diaper and I noticed a hard lump next to his lower incision. By the afternoon it had double in size so I called the surgeon's office. They didn't call back and on Thursday morning it was really hard, much larger than it had been, and was warm to the touch, so I called again. He was acting completely normal I must add. The nurse called back later in the morning and asked me a few questions, said she would page the doctor and get back to me. I was afraid he might have torn a stitch on the inside. She called me at 3:12 and said the doctor wanted to see Tomas, could I be there by 3:45. I couldn't as we live an hour away, so she said could I have the pedi look at it and then call the surgeon. So I called the pediatrician and off we went. After a phone conference between the two of them the surgeon thinks it is a hernia opening up again. There is also a hernia opening up below his belly button and the two are trying really hard to connect. I was so downhearted yesterday. No more fixed baby, no more nothing else waiting to get done, no more fragrant jasmine.

So, I re-adjust again, now there is one more surgery, somewhere down the line. I got a lovely email from a friend (thank you friend!) after a Crowning of Mary ceremony this morning reminding me to keep my chin up. The thing is I do, even if I don't always look it. I am so blessed to have this path. My eyes have been opened to miraculous things and wondrous people. I have moments where the sadness of what my baby has to go through yet again weighs heavy on my heart, but that is not the norm. He is such joy, and his smile touches everyone, that I can't help but smile with him.

Ordinary

Yesterday was so ordinary. I did 2 loads of laundry and got school done with my girls. I made lunch and a few phone calls and played a game in the afternoon with the girls. Later in the afternoon we walked to the playground and they met up with some neighborhood friends. They stayed outside playing until 8pm.. I didn't say no when they asked if they could go over to the friends backyard at 7pm. I didn't call them in for dinner. When they came in I fed them.
Yesterday there were no doctors appointments, no moaning uncomfortable baby, no girls who were too tired, no daughter who couldn't eat or drink because her throat hurt.
Yesterday everyone was healthy. The real kind of healthy, the kind you learn to grab onto around here. Grab it and run it into the ground even if it means playing outside right through dinner.
Today brings a GI appt., Tomas' liver and glucose levels still aren't right. Then later I meet with the nutritionist and dietitian to plan a diet now that his gallbladder is gone.
He is doing so well. NONE of the things I feared came to pass. From the small (losing ground physically) to the large (not going to say it out loud), it all stayed away.
I am very grateful, and overjoyed that the surgery is done and it was easy. But I would have been grateful had it not gone well. God blessed us with this baby, highs and lows, good and bad, and every day in between. That is why yesterday was an ordinary miracle. God, forgive me for all the ones I never noticed before!

Still here

He got moved up around 4 yesterday. He was cleared by surgery to go home to day but has enough minor stuff going on that the on floor ped wants to keep him at least one more night. His liver enzymes are still elevated, he has a rash that is spreading and unrelated to the gentamyacin allergic rash which he had yesterday morning but cleared up after they stopped the med. He is still running a low temp, and I just vented out about 40cc of cloudy liquid from his G. Not sure what that is all about. The nurse texted the Dr. and we'll see. He also needs a follow up chest x-ray because the one from yesterday morning showed....are you ready....that the para-esophageal hernia was still there! However, (wish I had a nickel for every time I used that word) the surgeon says it is just some leftover CO2 from when they inflate the chest cavity for the surgery. Good thing I like and trust him.
If all goes well we should be home tomorrow evening, which is still way earlier than planned for so I'll take it!