Faith is doing AMAZING since getting her g-tube in!  It’s so great to see both cheeks and not have to annoy her with the tube and the tape…ahhh!  Faith was in the ICU on Thursday night but wasn’t under any sedation, she was just sleeping.  She had had late nights and early mornings all week so I guess she was just catching up on some needed sleep but I was to the point of threatening to poke her, she was taking so darn long to wake up.  She finally woke up enough around 8 PM for them to pull the breathing tube but she went right back to sleep and slept until Friday morning.  We had no issues over night, it was the easiest ICU night ever! 

Friday morning when the doctors were doing their rounds, Faith was sitting up in her bed, watching tv and talking.  The ICU doctor comes in and says “you don’t belong here” and laughed at her.  She looked so great!  She moved to the regular floor Friday around lunchtime and inhaled any food I put in front of her.  She was a little sore but not as grumpy as I had expected.  Saturday morning, things got moving to go home and we finally left at 2 and came home.  Woo hoo!  Faith got Pedialite overnight Thursday, Pediasure/water mix Friday, then we were back to the regular stuff Saturday night.

The tube is working out well so far.  It’s bigger then I had realized it would be.  It looks like an IV going into her tummy but then it has a long feeding tube coming out of it.  We have the tube taped so that it makes an arch to help it heal properly.  She’ll have the big long tube for 6 months or so but THEN things get MUCH easier and we switch over to just a little button (which from what I understand, looks kind of like a pool toy valve).  So unfortunately, we have this big thing for 6 months but it’s totally worth it already.  She’s doing fantastic.  She came home on Tylenol every 4 hours but today she hasn’t needed it at all.  The spot is a little red and it’s making crusties while it heals, but all in all things are looking good.  Faith is getting used to it and testing out what kind of pressure she’s comfortable with.  So far, so good!

Heart wise, Faith is doing fine as well.  Her blood work that they did Wednesday showed her liver function was a little high but not high enough to adjust the Gleevac.  We did get to talk with her cardiologist about when the Fontan would be and she said we’re looking at about 2-3 years from now.  Not the normal range for the Fontan but for Faith, it’s what they feel is best.  The plan is to make sure that her stenosis is being controlled before having the last heart surgery done.  They are still very confident that this plan we’re on is working and they said Faith is doing really great (which we already know of course!).  We go back up to Boston on March 17 for her next sedated echo and lung scan and for the GI people to take a peek at her tube to make sure it looks good.  I have three St. Patrick’s Day outfits for Faith and now have to figure out when to put them on her since she won’t be wearing them for most of the 17th….hmmmmm :):):)

Posted: March 9th, 2010 under Uncategorized.
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Faith has a g-tube!!!  No more tube in her nose!  Yay!!!  We have not seen her yet but the doctor said everything went well, they were able to do the less invasive of the surgeries which was what we were hoping, no bleeding at all, things went well.  The only “problem” is that the cardiac anestesialogist said they wanted her to stay on the breathing tube for a few hours after surgery so she will be going to the ICU.  They said the surgery is really short (she was done in about an hour) and that they like to give cardiac kids longer to recover so that it stresses the heart less.  So we’ll be heading to the ICU and then a few hours after surgery, they’ll pull the breathing tube. 

Ok, so this post is taking forever to get done….we are now with Faith in the ICU.  She’s sleeping, they will pull the tube when she starts to wake up.  She had a fever when she was in surgery but the nurse thinks it might have just been because of the OR temperature.  They have ice on her and gave her tylenol but it looks like she could be starting to catch the cold I’ve had the past few days.  Hopefully not :(. 

So that’s pretty much it for now.  She looks pretty good, pink.  It’s weird to see her post-op without the chest bandages :):):)

Posted: March 4th, 2010 under Uncategorized.
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Faith’s upper GI study was a success!  She is most likely eligible for the less invasive lyposcopic surgery which is what we were hoping for.  Yay!  We’re waiting for the doctor to call and confirm that this is the surgery they will be doing but the doctor that did the study says that’s his thought.  He’s just not the one making the final decision.  Woo hoo!

We got to Boston in our usual 3 hours and the GI appointment was very quick.  They took an x-ray and then injected dye (Barium) into her NG tube to check her anatomy.  They were looking to see if her GI track was normal or if there was any malformations.  The doctor told us on Wednesday that single-ventrical kids like Faith are often times mid-lined anatomy, meaning their bodies are not symetic and things are more in the middle.  If she’s more mid-line, Faith would need the standard operation but thankfully, her GI track looks normal.  Woo hoo!  Once again, Faith defied the expectation since they had told us they thought it was a 60% likelihood she’d need the standard surgery. 

We were in and out of the appointment within 15 minutes, then after feeding Faith a late lunch, we were back on the road to hit a ridiculous amount of traffic.  It took us more then 4 hours to get home which was terrible but thankfully Faith was really good about it (though she did keep grabbing Grammy’s sweatshirt to get her to take her out since Grammy was sitting in the back with her). 

Today, I got a letter in the mail saying Faith will be admitted on March 3.  I have to call Monday to find out if this is the surgery date or if they want her to come the night before (they said they might) but it looks like the countdown is on!!!!

Posted: February 21st, 2010 under Uncategorized.
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Finally some good news from Boston!  Woo hoo! 

Faith woke me up at 2 AM (alarm was set for 3) and spent the next hour poking me in the eyes, shoving her pacifier in my mouth, singing to me…she pulled out all the stops so that I wouldn’t sleep :).  This following three days of earlier and earlier wake ups.  Ugh, sleepy Mommy :). 

Anyway, we got to Boston and Faith was taken fairly quickly.  By 9 AM, she was sedated and the echo was started.  After almost 2 hours, Faith was done and we could see her.  She was still sleeping but came out of it fairly quickly and was insistant that either Mommy or Grammy hold her.  By noontime, she was pretty much awake and hungry and gobbled up a banana and was back to talking and being her almost her usual self.  She was a little grumpy and wanted nothing to do with sleep but she was definitely feeling a lot better. 

At 2 her cardiologist came to see us and said that the echo and lung scan showed 27% lung flow.  In December, she was at 33% but they’re not concerned and not really even considering it a decrease because she said that an IV going through the foot is not all that accurate so they consider the two to be the same.  An improvement would have been nice and was what we were hoping for but really, holding steady is just as good :). 

The only thing they’re concerned about at all is that vien by the band that was put in during Faith’s December surgery between the right and left pulmonary vein looks like it has some stenosis growing back.  It’s not much right now, not enough to do a cath, and they expect some stenosis to grow back so it’s not that big of a deal yet.  Hopefully it stays minor and Faith can hold off going to the cath lab for a few months. 

So Cardiologically speaking, Faith did great yesterday.  They were very happy with how quickly she recovered from being sick a few weeks ago (turns out it was RSV which can be VERY serious — they couldn’t believe she didn’t end up in the hospital and how quickly she bounced back) and said that she’s doing really well and that they’re very happy with her progress.  It was the perfect cardiology day

After meeting with her cardiologist at 2, we could have gone home but then we got involved with getting things moving for getting Faith a g-tube (surgically implanted feeding tube).  There are two different ways they can do the surgery — ideally they’ll do it lyposcopically and Faith will only be hospitalized for 2 or 3 days.  If it needs to be done by traditional surgery, then she’ll be hospitalized for about a week.  We go back to Boston tomorrow for an upper GI study to determine what her anatomy looks like and which surgery will be better for her.  Either way, it looks like surgery will be the first week of March.  Woo hoo!  I have mixed feelings on submitting her to another surgery but I am really excited over the g-tube and feel this is the best thing for her.  Fingers crossed for lyposcopic surgery!

Posted: February 19th, 2010 under Uncategorized.
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So we’re off to Boston again tomorrow for Faith’s sedated echo and lung scan.  This will determine how much blood flow is going to the right lung and if the surgery in December and the Gleevac are working.  They say kids usually have some reoccurance of the stenosis 4-8 that requires a catheterization to clear out the blockage.  The idea of the surgery and medicine is not so much to stop the stenosis all together as much as to slow it down and make it managable in the cath lab.  So needing a cath would not necessarily mean that things are not going well.  When we went up to Boston 3 weeks ago, I was confident that she did not have any reoccurance and would not need a cath.  This time, we’re 7 weeks post-op and I’m not as positive.  Hopeful, but not positive. 

I am hoping for an admittance this time though, not for a catheterization but for a G-tube placement.  I’ve had enough of the feeding tube in her nose (NG tube).  It’s making a mess of her face and she fights like it’s no one’s business when I try to put it in.  Plus she’s picking at it lately and I figure it’s only time before she pulls it out.  Her cheek is all red and raw, poor girl.  I am so excited for getting the g-tube even though it means being admitted for a few days.  Grammy and I are packed for Wednesday and Thursday night.  Hopefully we’ll be home by Friday!  Or maybe even tomorrow :):):)

Wish us luck tomorrow, I’ll post more as we know it.  Please keep the prayers coming!

Posted: February 17th, 2010 under Uncategorized.
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Take a look at the right side of your screen!  I’ve added a few new tabs lately if anyone is interested :):):).  I’m also thinking of renaming the blog.  Any suggestions??? :):):)

Posted: February 5th, 2010 under Uncategorized.
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Seriously, I’ve had enough of this whole winter thing.  Between this being a ridiculously cold winter and it being a germ filled one, I’ve had enough.  Faith is finally feeling better after this latest croup/cold.  She’s still a little snotted up and coughs periodically but for the most part, she’s over it.  Woo hoo!  Too bad the stomach bug has travelled through our family, hitting everyone in sight.  Thankfully Faithy only got sick once on Tuesday night when we were exiled to my parents house because Billy was sick.  I’m not sure if she actually was sick or just cough induced but it was only once and she’s all better now.

Faith and I have been looking for a playgroup or something to join for a while now.  I want to take her where she can meet some other kids but I don’t want to have to pay for a class or something because with her, I never know what we’re goin to be able to make or not make.  So I finally found one!  Yay!  I took Faith to a music class at the library the other day and she LOVED it!!!  she was just about the youngest in the class and just about the only non-walker but she was dancing and clapping and yelling along with everyone else.  She had a blast.  At one point they tried to give her a baby rattle.  Everyone else had a big rattle and Faith didn’t understand why she had this tiny one so she started doing her yelling and summoning of things to get herself a bigger one.  Yeah, she ended up with two :).  Hahahaha.  I can’t wait to take her back next week!

Next week we also return to Boston for a repeat attempt at last week’s testing.  Not sure what day yet but as long as Faith stays healthy (another reason winter has to go) we’ll be heading up there for another attempt :).

Posted: February 5th, 2010 under Uncategorized.
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Hospital world is like a big vortex, sucking you in and not wanting to let go.  Saturday morning Faith woke up with a really bad cough.  Sunday, it was worse so I called her pediatrian who said he would come see her (he came to my house which seriously, makes him the best doctor ever in my book).  He came by and said he thought her cough sounded croupy.  For those of you who don’t know what croup is, it’s basically a cold but has a really bad “seal” sounding cough.  He prescribed a steriod and said she should have just a cold by Thursday when we were going to Boston.  I called Boston to let them know, they said it was fine to bring her.  Monday she was a little better, then had a terrrible night Monday night, but then had a great day Tuesday, great night, then ehh day Wednesday, then terrible night Wednesday.  So I was a little nervous about our Boston trip but alas, we left at 4 AM for our day in Boston.

We got to Boston and entered the Vortex.  First stop:  sedated echo.  The nurse came out to tell me they were running behind (how when it was 730 AM), I said she had had croup, she said, oh, they won’t do the sedated echo.  Two hours later of back and forth, they scratch the sedated echo to try a regular.  Grammy and Mommy are in the room acting like fools, trying to get Faith to stop whining.  No dice.  Grumpy, grumpy baby giving everyone a headache.  They give up on the regular echo within about 10 minutes and we go to meet the doctor.

The doctor cancels this afternoon’s lung scan and orders an xray and more bloodwork.  She says she might need to be admitted because her cough sounds broncial (Vortex sucks us in further).  At this point, still very grumpy, whiny headache inducing baby.  Then we decide to get lunch and Faith gobbles down 90% of a hot dog and starts literally dancing.  Goodbye grumpy, whiney baby, hello happy laughing silly baby.  Woo hoo!  Thus marked the climb out of the Vortex.

First happy baby returned.  Then the xray came back better then they had expected (take that Vortex!).  Then bloodwork came back ok.  The dr. said it was up to us whether to go home with her or admit her.  She said that if we chose to take her home, there’s a chance she’ll end up back at Boston in a few days if she gets worse.  We decided to stay at a family housing place tonight so that if anything bad happens, we’re right here.  Main concerns:  not eating (obviously not an issue for Hot Dog Hog); labored breathing (doing ok so far), low O2 sats (knock on wood high 70s/low 80s); vomiting (Gleevac puked today but I think it was too much snot’s fault). 

So we took her out of the Vortex and brought her to the family house!  Tomorrow morning they want to see her just to make sure she’s doing well, especially because her lungs were a little wet (they upped her Lasix to help).  The hope here is that she’s at the worst of it and is now on an upward move.  If she’s not better by Monday, they want her back in Boston but I just know we’re not going to have to (especially since my birthday is still a secret to her).  We didn’t get what we came to Boston done for and will have to come back in two weeks or so to do the sedated echo and lung scan, but at least we are (today at least) Vortex free and confident that it’s just a virus. 

Take that Vortex!!!!!

Posted: January 29th, 2010 under Uncategorized.
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Things have been going really great with Faith since our last trip up to Boston.  She’s completely back to her usual self, pulling up on everything in sight.  I am going to start her with physical therapy to help her learn to walk and they’ve been out twice to get things set up.  I swear Faith knows whenever I’ve thought about doing this because she immediately starts doing what I am most concerned about.  In May, I was going to sign her up if she wasn’t sitting up by the end of the month.  May 31:  sitting up like a champ.  This time, I was concerned because she was pulling herself up before we went to Boston but then when we came back home, she wouldn’t do it anymore.  Last week when they evaluated her,  they said that she does it but that she should want to do it more at her age.  After they left, not only is she now pulling herself up all the time, she’s now also lifting her foot to try and climb on stuff.  Little does she know, I’m still planning on having them come and do the PT for a few months at least.  Maybe just the threat of it will get her walking by my personal goal of 18 months (she’ll be 16 months on the 30th).

We are going up to Boston this Thursday for Faith’s 4 week visit.  We have to be there at 8 AM Thursday morning with the sedated echo scheduled for 9 AM.  This is good.  Though it means leaving home very early, it gives Faith a lot of time to come out of the anestesia.  Best case:  we’d go home Thursday night.  If she doesn’t come out of the anestesia as well as they’d like, she’d be admitted overnight.  If they see reoccurance of her stenosis, then we’d be admitted and Faith would need a catheterization to balloon out the problem areas.  The doctor told us that most kids have had a reoccurance between 4 and 8 weeks so it’s definitely not out of the realm of possibility. 

So between starting PT and getting into routine with Faith’s medicines, we’ve been busy.  This is also the first weekend since we’ve been home from Boston that we have not celebrated Christmas (yeah, it’s almost the end of January :)).  We’ve moved into birthday mode.  Today is my neice’s 4th birthday, my own is on Saturday.  I’m not telling Faith it’s my birthday though because I don’t want her to one up me by making us stay in the hospital :):):)

Posted: January 24th, 2010 under Uncategorized.
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My mom and I took Faith up to Boston’s Children’s Hospital yesterday for her first follow up.  Initially, she was going to see her regular cardiologist this week but then the oncologist at Boston said he wanted her to get bloodwork done somewhere that she had an oncologist so off to Boston we went.  They really didn’t do much.  Just an EKG, an xray, bloodwork and a 7 minute meeting with the doctor.  They said they were really happy with her progress so far and that they were really impressed with her that she had a cold and it didn’t land her in the hospital.  It’s the little things that make us happy :):):).  Her bloodwork, EKG and xray are all normal which means her body is handling the medicines well.  Woo hoo!  That’s pretty much it.  We go back up to Boston on 1/28 for a sedated echo, lung scan and CT scan.  It should be just a one day event unless she doesn’t come out of the anestesia well.  If the anestesialogist is not happy with how she’s reacting after the procedure, she could be admitted for the night.  If they find that some of the stenosis (growth of cells) has come back then they might want to have a cath done which would mean we’d be admitted.  So we don’t know.  We’re going to pack a bag but are hoping for just a long day in Boston on the 28th….if we do get admitted because she needs a cath, we’d end up being in Boston on my birthday on the 30th.  We have been joking about being in the hospital on my birthday for the past few months because we were in for Billy’s in July (cath), in for Faith’s in September (pneumonia) so it would only be fair that we are in for mine as well….hopefully not though!!!  :):):)

Posted: January 13th, 2010 under Uncategorized.
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