Sunday, July 31, 2011

Hand Surgery Complete

So we are home from the hospital after Macy's hand surgery.  It has been 2 days since her surgery on Friday and she already has the cast half-way off her arm.  I am going to have to call the Dr. tomorrow to find out what he wants to do, because it is not going to last too much longer.  We keep a pretty good watch during the day, but I think what is happening is at night when she is sleeping she rolls around and throws it in weird positions and ends up pulling out of it a little.  Hopefully it won't get too much worse before morning.

Backtracking to the surgery a little bit...we had to be at the hospital at 5:30am.  Her G tube must have gotten bumped weird or something because when we put the hospital gown on her her belly was all bloody.  That was strange because it has never bled before.  The nurse cleaned it up and put some gauze underneath and it never bled again so that is good.  They took her from us into preop at 8am; we didn't see her again until she was in recovery at 2:00pm.  6 was a long six hours.  When her hand surgeon met with us before the surgery he said one of the more serious complications that can happen is that that finger can actually die.  So the whole 6 hours of course I was freaking out.  When someone tells me that there is only a 1-2% chance of something bad happening; it doesn't make me feel better anymore.  We always seem to be that 1-2%.  But, the surgery went very well; no complications.  The poor thing though had the IV in her right hand so they splinted her right arm and taped it up so she could move or use her right hand, and the surgery was on the left so she couldn't move that because she is in a full arm cast.  Needless to say she woke up ticked; and rightfully so.  Luckily, she was drugged up on pain meds pretty good on Friday and Saturday at the hospital so she slept a lot.  At that time you could see the tip of her fingers and new thumb barely sticking out the end of her cast.  It looked nice and pink...good blood flow.  So we went home Saturday afternoon.  Yesterday we noticed her finger tips were not sticking out of the cast anymore but were about 1/2 inch down inside the cast (it is a full arm cast up to her shoulder...well, it started out that way anyways).  And today her finger tips are not visible at all.  I had to stick my finger down in the cast and when I felt them my index finger was completely inside the cast so they are about 2 inches down now.  We will see what her Dr. says tomorrow about what to do about that.

It also doesn't help that Macy wants to crawl sooooo bad.  She is always flipping over onto her belly and trying to figure out how to crawl with that huge cast on.  Not going to work, and she is suppose to keep pressure and weight off of it.

Macy has been sleeping pretty good through the night.  I am not sure if it's the drugs (she is still on some pain meds) or if she is just sleeping good.  We are back up to feeding her almost where we were before via tube; but she did puke 2 times today.

Macy does have 1 appt. this week.  She is getting an ultrasound done on her liver.  When I met with her GI Specialist last week I told him I wanted to keep a close eye on her GI tract, etc. because GI cancers are common in those with FA (usually not this young) but atleast we can get a good baseline of what her liver, etc. looks like now.

I called insurance last week Thursday and they said they DID receive the appeal that the Genetics Dept. re-faxed over last Wed. morning so that is good.  Since it is a pre-service appeal they have 15 days.  I am definitely not going to wait that long to call again.  I have learned my lesson of assuming competence at the insurance company, so I will call probably mid-week and every 2-3 days after to see the status.

take care, (and I will post pictures once I transfer them to my laptop)

Wednesday, July 27, 2011

Ode to Floppy Thumb

As we near the remaining 28 hours before Macy goes into surgery....I can't help but feel conflicted. She is getting surgery on her left hand where they will be removing her "floppy thumb" and moving her index finger over to create a working thumb from it.  This 3-4 hour surgery makes me incredibly nervous, and in many ways I am really going to miss Macy's floppy thumb.  It is a part of her, and just the thought of it getting cut off makes me sad.  I think Macy will miss it too.  She spends a decent amount of time yelling at it, smacking it around with her other hand, and chewing on it.  In a way, it has become one of her favorite "built-in" play toys.  However, I know in the long run (as long as everything goes as planned) that this surgery is what is best for her.  She will be able to grasp things with a pincer grasp, and will be able to hold things a lot better.  Having her thumbs the way they are has kind of put her a little bit behind in being able to pull herself up into a standing position.  She can't quite get a good enough grasp that she needs to do it, and hopefully after she gets her cast off she will be able to do so much better.  As I mentioned before I am a little worried this may challenge her learning to walk; but I am sure she will figure it out.  She is a laid-back happy girl, but she is also a fighter!  :)

I do have an update on our appeal, kinda.....the insurance company's 30 days to respond was up today so the Dr. office called them.  They claim to have never received it even though it was faxed AND mailed to them.  So it had to be sent again today....UGH!  I was livid!  The insurance company is such a huge stressor that I cannot stand dealing with sometimes.

Macy had an appt. today with a GI specialist.  We are trying to figure out how to help her reflux.  He assured me that the meds' she is on for her reflux is keeping it from damaging the esophagus at all.  That was my main concern since Macy is so prone to esophagus and GI cancers.  She is getting a liver ultrasound next week though to make sure she doesn't have any tumors growing on her liver.  We are going to try using one of those gel thickeners to see if it will help keep her formula in her tummy at night during her continuous feeds.

I would like to ask everyone to keep a little girl named Lucy and her family in their prayers.  Precious little Lucy also has fanconi anemia, and is already showing some bone marrow abnormalities (pre-leukemia).  She is only 8 months old, and her parents have already lost her sister at 2.5 years old to this disease.  They really need your prayers right now to get them through this really tough time.  I can't even imagine the immense grief, shock, and pain they must be feeling.  I pray that this family gets their miracle that they deserve to save their little angel.

take care,

Monday, July 25, 2011

Summer-winter and a matter of time

I just looked at the calendar for August, and for the first time in a long time Macy doesn't have too many appointments besides feeding therapy.  Most of her follow up's are in Sept. and Oct. right now so it will be nice to get some time off from the hospitals and Dr. office's after her hand surgery this Friday.  I am hoping we will not need to spend the night this time, because hospitals are soooo uncomfortable to sleep in at night.  And if you do manage to fall asleep you get woke up by machines going off every 2 minutes.  And every time Macy just falls asleep in comes the nurse to take her vitals.  I never understood why some hospitals are determined to take a rectal temperature at night while she is sleeping????  I love the hospitals that have the kind of thermometer that rolls over the forehead to the temple.  I wish they all had that kind.

Well it seems like Macy yo-yo's back and forth between doing okay at night and not.  Some nights she does great and doesn't wake up and cry during the feeds, and other nights it seems like she is crying half the night and I end up getting up at 3 or 4am and just turning off the machine because it's not worth it.  The good news is she is doing better and better eating her solids by mouth during the day.  I have her up to 3/4 of a container of a stage 1 fruit/veggie mix per feeding session.  A couple times last week she even opened her mouth happily to take bite after bite and ate almost like a normal kid.  It was amazing.  I am not sure how much a kid her age should be eating, but I am hoping if she continues to do well, and we keep increasing the volume; then hopefully in the next 6 months we can get her G tube out!  :)  She loves drinking water so we just have to get the amount of solids she eats up to par and we should be good.  She is also gaining decent weight.  We have an infant scale at home and I weighed her this morning and she weighed 16lbs. That is pretty good because she weighed 15lb. 2oz. 2 weeks ago.
Our smiley girl!

Macy playing on her laptop as she recovers from her G tube surgery!

Macy in her new bean bag that her Grandma Stewart got her! (look at those chubby thighs!)

Macy getting a tubby!

We got a call from a Transplant Coordinator that was assigned to us from our insurance company the other day.  They thought that Macy's appt. in Minnesota this October was for her to get her transplant.  Then we received a letter in the mail from our insurance saying it has been approved for her to get a consult for her transplant, etc.  I had to explain to them that her appt. is not for a transplant; she is not to that point yet but needs to be seen by them because they are the experts and can create a plan for our local hematologist/oncologist to work on with them, etc.  They approved that visit so atleast we are on the same page about that.  At first I was all excited because I thought the letter was approving our appeal; but we still have not heard anything about that.  According to our insurance website; they have 30 days to respond to our appeal.....that 30 days is up this Wednesday and I am not sure why they are waiting so long.  I am sure they will try to drag it out as much as they can.

We have a lot of fun stuff coming up yet this summer!  Camping, baby showers, weddings, anniversary parties, and Macy's birthday!  By the time you look at what is going on every weekend this summer; summer is over and we are into the end of October already.  Then we are going into the holidays and before we know it it is smack dab in the middle of winter already.  Time.  Such a powerful word.  I never thought about it as much, or in the same way as I do now.  Time.....such a small word with an important thing.  Speaking of; I have a few things I need to do before Macy wakes up from her nap.

take care,

Wednesday, July 20, 2011

Eating and another Surgery

Macy has really picked up eating the last few days!  Sometimes she starts out a little hesitant but by the end of the feeding session she is opening her mouth huge and leaning towards the spoon!  She is up to eating 1/2 to 3/4 of a stage 1 puree per feeding session so that is a huge improvement.  I even switched up some flavors because I ran out of bananas the other day.  I gave her prunes mixed with squash and she didn't seem to mind at all.  As for the tube feedings; she seems to be doing better with those too.  We backed off the ml/hr at night to 40ml/hr (she is supposed to get 50ml/hr); and found that it helps A LOT if we put her boppy in her crib for her to sleep in.  It is the cuddle U kind where there is a strap that comes up and straps her in so she cannot slide down.  She went from waking up from her reflux bothering her every hour or two; to only fussing a little bit maybe 1 time the whole night now.  It must put her at the angle she needs to keep her reflux at bay.  I really didn't want to have to do that because she loves rolling around in her crib at night and sleeping on her belly; but it is more important that she gets her nutrients.  We have a crib wedge (30 degree angle) in there, but she just doesn't stay on it.  She rolls off constantly so it doesn't work .  We also put her in the boppy during the day during her 3 bolus feeds; and if she stays in there for 15-20 min. after she won't puke.  Glad we got that figured out for now anyways.

So we are almost 1 week away from Macy's hand surgery.  It seems like we just got home from the hospital from her last surgery; but it has been 2 weeks.  I was nervous for the last one and that was only a 30 min. surgery.  This one is going to be 3-4 hours, and is very complex.  She will be in a full arm cast (from her shoulder to the tip of her fingers) for 4-8 weeks.  I am not looking forward to when she wakes up from anesthesia this time....especially when she discovers that she cannot move her arm.  2 weeks after that cast comes off she will have the other hand done and another full arm cast for 4-8 weeks.  Atleast she will be done with it all and have her casts off by the holidays!  I just hope it doesn't delay her in learning to walk...I can picture her now trying to balance with a big cast on.  I remember when one of my nephew's was learning to walk.  He would have to wave really fast as he walked to keep balance at was really cute!  Macy will have to figure something out; she's a fighter though so she will make due.  It is good for her to use her problem solving skills anyways, right?  :)

It has been HOT here this week.  Mid 90's atleast with a heat index that's higher.  We went to the lake a few times but it is too hot and muggy to stay too long.  We brought the paddle boat out this time, but haven't taken Macy on it yet because it is so hot.  Maybe in the fall when it gets a little cooler.

Sent out the invitations for Macy's 1st birthday party the other day!  Wow, she is getting so big!  I went and bought the decorations, etc. and decided on the Disney Princess theme (surprise surprise!).  She is our little princess so it is fitting.

take care,

Monday, July 18, 2011

A Heavy Heart

We received word today that another mother has lost her child to this horrible disease.  We do not know this family personally; but the FA community is a pretty close knit, and supportive group of FAmilies.  It is so sad to see another family go through this loss.  After reading their caringbridge page I couldn't help but be in tears.  The mom commented that while they were in the hospital getting his transplant they had seen 30 families lose their children.  It is so heartbreaking, and shows how much the odds are against us all.  Knowing that that is going to be us with Macy someday; and when the time comes praying that she is one of the few lucky one's that survives a little longer just kills me.

I hope that his mom and family can someday find some peace.  But I honestly don't know how a parent can get over something like this.  I know the day will come for us sometime.....but I can't bear to think about it.  It is truly unimaginable what they must be going through right now, and our thoughts and prayers are with them.

with a heavy heart,

Friday, July 15, 2011

Patience isn't always a virtue!

I've never been a very patient person.  This stems all the way back to the day I was born...when I jumped shipped before my mom even made it to the delivery room.  I am sure there have been many times in life that this characteristic has hurt me; but there are more important times that this has helped.  Most importantly with Macy and her disease.  My impatience has allowed her to be diagnosed with this disease.  Ever since she was born I have been going crazy researching all over the place what could have caused her "floppy thumb" and kidney issues.  I have this horrible urge to always do things myself.  I have to "know" everything myself; just incase someone else has missed something.  So I didn't rely on her Doctors or other people to find things out for me; I did it all myself.  After all, I don't have time to wait for someone else to get around to researching things on my child (there's that pesky impatience again!!)  I am sure this can be very annoying to Macy's Dr.'s but if it wasn't for my obsessed researching regarding this we may not know that she has this disease.  

I'm not saying everyone should be impatient; but I do think it is so important that parents are empowered to educate themselves on their children's health (and on their own).  Yes, Doctors are smart people; but that doesn't mean you have to sit in the sidelines.  You have to be your child's advocate; because if your not; who will be?  I encourage parents to speak up, and ask questions.  Lots and lots of questions.

You never know; what you find out could be the missing piece!

On a different note; Macy is doing pretty well in her recovery still.  However, she is not tolerating the feeds as well as she was in the beginning.  Her bolus feeds during the day are going okay; but he overnight feed she has been waking up crying a lot.  I noticed she is also refluxing quite a bit during the night from having food in her belly all the time.  Last night I set the machine to do interval feeds instead of continuous but that didn't seem to help.  I ended up unplugging her at 3am and let her be free of the feeding the rest of the night.  We do have an appt. with a GI Specialist on the 27th so we will look into what we can do to help her reflux.  I am hoping we don't have to end up getting the Nissen surgery; but I am afraid that may have to happen.  If she wasn't so prone to esophagus cancer I probably wouldn't worry too much.  But she is; so we need to find a way to reduce the reflux.  

However, on a good note; she did pretty well at her feeding therapy appt. yesterday.  It was quite the journey getting there though. I forgot about former first lady Betty Ford's funeral, and all of downtown was blocked off.  It was not easy finding a way to the hospital.  Then when we got there 15 min. late at 3:15pm.  They said her appt. was actually at 11am that morning.....I must have written it down wrong....UGH!  Luckily her therapist was kind enough to see her anyways; whew!  She did really good though, and today I even added some squash to her banana/plum/grape puree and she ate it fine!  I am hoping I can continue to sneak veggies in there!

take care,

Tuesday, July 12, 2011

No news is good news!

Things have been going pretty well here with Macy and her recovery!  She seems to be tolerating her feeds pretty well, and is starting to roll over onto her tummy again which tells me it is healing well.  We are getting use to her new routine, and I must is nice!  It seems like we have so much more time now to do things and play!  Her dad and I were commenting that we actually watched a movie together the other night for the very 1st time in almost 10 months!  Before, one of us would have to go to bed early to get up to feed her at 3:30am, and the other would have to stay up to feed her at midnight.  It is so nice not to have to worry about that anymore because the feeding pump feeds her all night! She is starting to get back into the swing of things with her feeding sessions too.  I tried a banana, plum, grape puree today and she seemed to like it.  She has a feeding therapy appt. on Thursday so hopefully she will continue to do well.  

We went down to the hospital today to get Macy's sutures taken out from her G tube site.  I was not looking forward to it, but she actually handled it pretty well.  She cried a little bit when they pulled them out, but then she was fine and played with her toys.  I was glad that it didn't seem too painful for her.

One thing that I absolutely love that she has started doing is whispering.  She loves to whisper the words, mama, yeah, and hi!  It is so funny, and she gets a big kick out of it too!

For the first time in a long time Macy has a week with NO appointments next week.  My family is going to be camping at the lake by our house for a week and a half so it will be nice to go out and visit them this weekend and throughout the week.  OMG!  I just realized it is 10 days until my birthday.  Usually I don't think twice about it but this year it is a big one.....30!  UGH! (totally random thought).  Anywho...

Still no word from the insurance company regarding our appeal....I am hoping no news is good news right now!  I'll keep my fingers crossed!

take care,

Friday, July 8, 2011

We're Home!

We are home now!  (yeah!).  We actually got home from the hospital around 10:00pm on Wednesday night, and it has taken a little bit to get use to the new routine.  Macy's surgery went well; no complications!  She was in a lot of pain when she woke up so they had to give her a couple doses of morphine....poor thing!  I have never seen her cry so much; it was sad to watch.  For the whole first day if she was awake she was crying.  And it was a hoarse sounding cry due to the breathing tube they had in during the surgery.  Here are her before and after pictures!  The first one is right before they took her into surgery.  She has a huge smile on her face and is waving at the camera.  The second one is in recovery right after she woke up.  She was so puffed up from the anesthesia it almost doesn't look like her.
Daddy & Macy right before surgery

Daddy & Macy right after surgery...neither look too excited!
Macy slept a lot the first day; but the second day she started feeling a bit better, and was getting back to her old self again.  Here is a picture of her trying to take off the little "hugs" tether on her ankle!  The purple thing is just the wrap to keep her IV in place so she doesn't pull it out.
We now have Macy on a slow, constant drip feed with the pump while she sleeps at night.  It stops about an hour before she wakes up, and she seems to be tolerating it well.  Then during the day I give her 3 bolus feeds during our meal times.  She did puke a little bit once; but seems to be handling them okay.  She had a feeding therapy appt. yesterday and was pretty wary of the therapist since she just got out of the hospital.  But she ended up eating some for her so that's good.  I am going to resume our typical "highchair" solid food eating sessions tomorrow probably so she doesn't lose her oral feeding progress we have made.  She goes in next week to get the sutures taken out that they put in during her surgery to hold the stomach and abdominal wall together.  After that she should be pretty much healed.  She only has the incision from where the G tube is; and in her belly button where they put the camera through to see in the tummy.

Here are some recent pictures from 4th of July camping, etc.  This one is Macy playing in the camper before bedtime!
 Macy's first ride in the boat!  She fell asleep right after we got out of the channel!
 Macy and Daddy after the boat ride!  She seemed to enjoy it even though she wasn't awake for long, but maybe she will stay awake longer next time!
                Macy posing for the picture with some left over food on her face!
                                So cute in her little flower headband!
                                      Rolling around on the bed in the camper!

So that's all the pictures for now!  She seems to be doing pretty well post surgery so hopefully that continues!  No sign of reflux yet....the Dr. said a G tube sometimes makes reflux worse due to the angle the stomach pulled up, and due to the fact the balloon takes up some room in the tummy.  Let's hope that doesn't happen, because that will cause a whole new set of problems.  Atleast we can be confident now that she will get all the nutrition she needs, and hopefully she won't have this tube in for too long.  In about 3 weeks we will have to do this all over again because she gets her first hand surgery....not looking forward to when she wakes up in recovery....that part was pretty awful.  But atleast when it's over; it's over!

Take care,

Monday, July 4, 2011

Happy 4th of July...and on to Surgery!

Hopefully everyone has a safe and happy 4th of July!  We had a great time camping at the lake!  We left last Thursday so we could spend a couple extra days out there.  The weather was hot; except there were storms the first night which woke Macy up around 1:30am.  I think that mixed with being in a new place kinda scared her because she woke up and wouldn't stop crying.  We ended up coming home to be courteous to the other campers (luckily we only live 10 min. away).  Other than that night; Macy did great!  She took her naps and went to bed great, and slept all night!  She also had a lot of fun taking walks, playing with her toys, sitting around the camp fire, and playing with her cousins that were there too.  

We also came back to the house yesterday and got our boat; so Macy had her very first boat ride!  She looked so cute in her little life jacket; and loved what she was awake for.  I think she fell asleep right after we got out of the channel!  I have some cute pictures that I will post later.

The great thing about camping for 4th of july weekend is not having to drive anywhere to see the fireworks.  They have their own fireworks over the lake so everyone walks down to the beach about 20 min. before they start and set up their chairs, etc.  Then when they are over you just go back to your fighting with traffic!!!!  Macy fell asleep before they started, but about halfway in she woke up, and just sat there and watched them quietly.  She loves lights, so I am pretty sure she liked watching the fireworks.  She did not seem afraid of the noise-factor at all!

So now we are home and getting ready for Macy's surgery in the morning.  I am nervous; but I am sure it will all go well.  I just hope we are making the right decision, and that the G tube doesn't cause any NEW puking; which I have read can happen.  We definitely don't need that.  So, here's to a successful surgery, no complications, a quick recovery, and having Macy tolerate the feeds well with no puking!

Take care,