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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Faith is doing GREAT! She’s getting back to her usual crazy self, crawling all over and getting into trouble. Her newest games are throwing things off the highchair (an oldie but a goodie she says) and putting her pacifier in backwards. She cracks herself up (and Mommy and Daddy too) :). She’s not puling herself up again yet but it will come. She goes to the pediatrian tomorrow morning and I am going to set her up with some physical therapy to help her get caught up. She’s doing really great but she’s a little behind, physically speaking, so we’re going to work on it :).
In exciting news…I spoke with the fellow that we’ve been working with at Boston and she says that as long as Faith’s oxygen levels stay above 75 she can go on just overnight oxygen. Woo hoo!!! I check her O2 levels once a day so cross your fingers they stay up! I think Faith will be much more comfortable without the nasal canula bugging her all the time. I think she heard me say we could take it out because all of a sudden she started trying to pull it out herself (she’d been leaving it more or less alone).
The fellow was also very happy to hear Faith is gaining weight so well. She lost 2 lbs in the hospital right after the surgery but then had gained a pound back and was discharged at 16 lbs, 9 oz. Yesterday the visiting home nurse came and weighed her at 18 lbs, 2 oz. That is one chunky baby! At this rate we’ll not only be ON the chart but we’ll be OFF the chart in the other direction! The fellow told me that weight gain could be an indicator that the surgery was a success and that her cardiologist will be really happy to hear it. She said the bigger Faith is the easier it will be for her body to fight the stenosis so bring on the chunk!!!
Posted: January 5th, 2010 under Uncategorized.
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We’re home!!! We were finally released on Friday morning and things have just been crazy since. We’re lucky we made it out when we did, I think they thought Faith was just too cute to let go. Thursday (New Years Eve) we thought we were going to get out and had my parents start the trek up. Then they told us Faith felt a little warm (though she had no where near a fever) and that they had a lot of paperwork to do to get us out and that it was snowing and that they thought we should probably just stay the night and leave on Friday. We were NOT happy but my parents were really not too crazy over travelling 3 hours each way in the snow to get us and they couldnt’ give us a time that she’d be out so we agreed to keep her until Friday.
At 7 they went to take two wires that Faith had in her stomach from the chest tube out. The first one came out with no issue. The second, not so much. The nurse went to pull the second one and it wouldnt’ come, she pulled more and it started to come and she thought it was just scab coming but then it just kept coming, this stringy piece of insides. So she stopped and called someone else who called the doctor on call who put enough gauze on it for a small country and called the surgeon on duty. At this point, it was after 8. We go back to Faith’s room and they’re talking about how she might need surgery to put it back in her, how they don’t know what it is, how we might not go home tomorrow….ahhh! Then at 10, the general surgeon on comes and looks at it and says it’s common, it’s just fat that got in the way of the chest tube, how she’s just going to put a knot in and tie it and cut it off, and then Faith will be all better and go home tomorrow. Woo hoo! She didnt’ end up coming until 1130 to do it and it literally took less then 5 minutes to cut it off but we were very concerned for a few hours there. Thankfully, it was nothing and we were back on track to go home but definitely not a minute too soon!
Friday came and they started getting Faith ready for discharge. Xrays, bloodwork, removing her IV and we were finally free at 11:30! Woo hoo! The SECOND we got in the car, Faith knew we were free and she perked up immediately. She was laughing for the first time in two weeks, smiling, talking up a storm, and sharing her pacifiers with Grammy and Mommy. She would NOT take a nap in the car for the first 2 hours (no matter how much Mommy wanted to take one herself) but it was soooo worth it. My little girl was pretty much back to herself within 5 minutes of leaving the hospital. She knew it as time to go home 
Friday afternoon and night we spent playing with our little Faithy and cleaning up. Saturday, a whole snowy day of cleaning until we went off to Grammy and Grandpa’s to see what Santa had brought us there. Faith’s cousins helped her open all her presents and test drove her new wagon—both give it two thumbs up :). Sunday brought us another snowy day of cleaning and visiting with a good friend.
Medically speaking, we’re just getting used to giving Faithy her new medicines. I feel like a mad scientist putting together her Gleevac. We have to wear gloves, and mix it with water and shaking it up and administering it….I am just missing the white coat. The other medicines are easy to do, she’s on 5 medicines right now but it’s managable :). We have to call on Monday to make an appointment with her pediatrian to get another blood cell count (CBC) because her white blood cell count was a little high last week. We have a million and one calls to make tomorrow to different places getting things settled for Faith but so far, so good. We are just so glad to have her home and she’s obviously happy to be home, feeling better and better every day. Today was the first day she was able to go Tylenol free and she’s pretty much back on her regular schedule.
We’re so proud of Faithy and how well she’s doing and just know she’s going to continue to get better and better! Thank you for all your prayers while Faith was in the hospital, it truly worked! We know 2010 is going to be a year of bumps and downs for us but we’re starting things off on a VERY positive note with the BEST baby in the whole wide world!!!!
Posted: January 4th, 2010 under Uncategorized.
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So things are going really great today so far. Faith’s feeling really restless. She’s having a hard time sleeping and is not happy in any position. We think she just wants to go home. She’s not the only one, we’re getting the go home itch ourselves! How great would it be to be home tonight, relaxing on our own couches, eating our own food (though I have none in the house), playing with our dog and baby….ahhhh perfect! Too bad Mother Nature is in SERIOUS disagreement to our New Years plans. This storm they are predicting for today is probably going to put a major damper on leaving. The weather says snow (varying levels) in CT all night, snow stopping in Boston around 6 PM. Faith wouldn’t be discharged until late this afternoon anyway so we’d be leaving after it stopped but….we don’t know. We’re considering renting a car if it makes sense and makes it easier to get home. Otherwise, we might be stuck here another night. I’m so frustrated. I KNOW what’s best for Faith is getting out of this place but I’m just not sure that’s going to happen….
We meet with the oncologist at 11:30 today to sign consent and to start Faith on the Gleevac. We’ve been working on getting things set up for the oxygen at home and are in the process of switching suppliers for Faith’s feeding stuff. Apparently with this other company we can get them to provide Pediasure for her overnight feeds which would save us a HUGE amount of money. The supply guy has been in and out, dropping off boxes and my sister has graciously agreed to sit at my house from 2-5 waiting for the oxygen man to show up with the home delivery stuff. She’s thrilled of course, but we really appreciate her help.
In other news, Faith’s CT scan yesterday shows that the veins are in fact working and that at this exact moment, the surgery appears to be a success. Woo hoo!!! This is FANTASTIC!!!! Now we just have to keep it that way :). And he said that she will only need the Plavex for 4-8 weeks which is also very exciting.
All in all, things are progressing well. Faith will be going home on 1/2 liter oxygen, 24/7. We are hoping that on Monday they will approve it being just overnight instead. We just want to get our little princess home and spoil her rotten!!!
Posted: December 31st, 2009 under Uncategorized.
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So the big topic of discussion: going home. They tell us either Thursday or Friday. Woo hoo! Oh bed how I’ve missed you :):):).
Today, Faith has had a great day! Her oxygen levels have been in the low to mid 80s which is great. She was even in the low 90s for over an hour. Now we’re not sure that’s accurate but we’re excited just the same. Hahaha. The echo and CT scan were uneventful (thank God). Faith was sedated from about 11:30 to about 2:30 which wasn’t terrible. Then she came out of it and wanted to sit up but kept falling over for the next 3 hours. Now she is napping. We’ll see what tonight brings :). Prior to the sedation, Faith was doing really well with her hand eye coordination and was playing and dancing and getting back to her usual self.
Tomorrow, we are meeting with the oncologist who will be prescribing the Gleevac at around 11:30. Once we meet with him and sign consent, they will give her the first dose and show me how to administer the medicine. After that, they are saying we could go home either a few hours later or on Friday. The biggest concern: the weather. Seriously, there’s going to be a snow storm the day we want to go home? Are you kidding me? Ridiculous.
For this weekend at least Faith will be going home on 24/7 oxygen. They are going to talk to her cardiologist here on Monday about just doing overnights or a pill form but for the short term at least, it’s going to be 24/7. Once Faith is feeling 100%, I worry it’s going to be a disaster. They want to increase air flow to the right lung as much as possible so it’s worth it but it’s just frustrating.
Posted: December 30th, 2009 under Uncategorized.
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Last night when we left Faith we thought the nurse was going to lower the oxygen and maybe even be off by morning. I called to check in around 11 and not only was it not down, it was raised. They said Faith’s oxygen levels went down into the 60s so they upped it. I was a little frustrated (ok, a LOT) because we truly believe the probes on the regular floor are terrible and misread. So I was discouraged today walking into her room. Thankfully, the discouragement was short lived.
Immediately Faith’s hand eye coordination seemed better. She’s still a little glassy eyed but she’s able to focus on things better and is acknowledging Mommy and Daddy. Unfortunately, tomorrow she’ll be sedated again for a CT scan and echo so we’ll take a step backwards in that area. We went to the playroom for a while today and Faith was actually engaged in some of the toys which is also a huge improvement. but the biggest news of all: they redid Faith’s lung scan today with an IV in her foot and it showed 33% lung function as opposed to 2%. Woo hoo!!!! This is HUGE! This is now her baseline and will be used to determine if things are getting better or worse over the next several months on the medicine.
Faith is going to be going home on a number of medicines: Lasix (pee medicine), Aspirin (blood thinner), Plavix (blood thinner), Gleevac (chemo), and an anti nausea medicine because of the Gleevac. They also want her to go on oxygen at home. We’re not sure yet if it’s going to be 24/7 or just at night or if there’s a possible pill instead (apparently Viagra might work). So they are looking into it for us over the next few days. She is also going to go home on Pedisure which is something she LOVES and is loaded with calories. They are working on getting all this stuff set up over the next day or two. Proposed go home day: Thursday or Friday (probably Friday). Wednesday: sedated CT and echo. Thursday: meet oncologist and start Gleevac. Friday: go home. The only thing that might screw this up is Faith’s white blood cell count was a little high today which could be just post-opretive or it could be a sign of infection. If it’s an infection then they would not start the Gleevac and we’d be stuck here a while longer. They don’t think it is an infection though because she has no fever but they will be testing her again tomorrow.
Posted: December 30th, 2009 under Uncategorized.
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