This month has just flown by - actually, this entire year has flown by. Paitn's Christmas was fantastic. We had such a great month baking cookies, decorating the tree, dancing around to Christmas music and reading her new favorite book - a pop-up book that tells of different Christmas tales and how Christmas is celebrated around the world. Of course, Paitn just loves me to sing the 12 days of  Christmas the most... my Celine Dion voice and all (wink, wink)!

Paitn received TONS of presents: books, clothes, books, movies, and so much more. She was basically tuckered out by the end of her 4-foot stocking, but did plug away for the rest of the day. The best gift ever for James and I was waking up Christmas morning in our home... a home w/ our baby girl right next to us. It was beautiful; however, Paitn was kind of tired and fussy so around 6pm I checked her temperature and the poor little girl ended up getting an ear infection over Christmas! We stayed home because Tylenol would suffice and just waited until her biopsy on Monday (this past Monday).

It was a long day in Boston and basically because they will not automatically do a biopsy if you are running a fever. Most of the time they will cancel, but we ended up going through w/ it and Paitn came out around 1pm. Great pressures and ZERO REJECTION!! She is such a strong and precious little girl. We cannot imagine our lives w/out her and I am sure that most people who have met her feel the same exact way.

We are celebrating New Year's tonight w/ dinner out and the movies and dessert @ home - just a fun, family night! Her brother (half-brother) Jaydn is up for the first time in awhile and Paitn just loves to follow her 5 1/2 year old brother around. It's the cutest thing.

Thank you to Heath Cown and all the people in Skowhegan and throughout Class A girl's basketball for all that they have done for our family. We appreciate your kindness and generosity and although I am a Gardiner girl, good luck for the rest of your season.

I will update again soon. Merry Christmas to you all and thank you for helping us get through 2008. We are hoping for a safe and healthy 2009 and just normalcy w/ our baby girl.

Erin and Addie, Nikki and Alexis - we will get our girls together soon. Maybe starting the new year will bring healthy and happy babies and time for Mommy's to go out : ) And congrats Erin on the upcoming baby.

Somebody just called me and made a very good point - I have yet to inform everyone that Paitn is home. I am terribly sorry. James, Paitn and I got home around 4pm on Thanksgiving. Not the time we were hoping for, but if you have read the last updates about being discharged, you can understand why we never get home before 2pm.

Paitn basically had an asthma attach like Portland though (too bad we didn't stay there). Sometimes her Propranolol can do that, so now she is on Atunelol, which is better for her. Her saturation was not perfect Wednesday night, but it was a lot better and the extra steroids through Friday and nebulizer treatments should help open her airways.

Boston would like her to go back down tomorrow, but we are not quite sure why. If it is to hook her up to a saturation probe, we are hoping that they will allow us to go to Portland instead. We will most likely have to go down, which I am nervous they are going to want to keep her.

I guess I am just nervous all of the time. We are never 100% in the clear and I always feel as though something is going to just jump out at us again and again. The same person who reminded me I needed to post also asked how I was doing mentally - sometimes not well. You try to put on a good showing for your child, but when she starts saying "OW MAMA" and "Boo-boo" you know it is has been too much and life is utterly unfair.

Hopefully things will settle down and this new medication, plus the neb treatments will work and we can settle down into somewhat of a normal lifestyle. However, winter months are here and I am just guessing that we are in for more than just wet, slushy snow and people whining about cold weather.

Happy Thanksgiving!

Paitn was doing so well. Daycare was great, eating great, playing wonderful, and even Christmas wreath shopping and chocolate chip pankcake eating on Saturday w/ some family - great! And then WHAM! - we get hit from behind.

Paitn had a wonderful day just being normal on Saturday. We went wreath shopping w/ aunts and cousins and then had breakfast (where she was the Railway Cafe greeter and ate a HUGE breakfast). We went home and took a nap, which she slept really well. About 10 minutes after she woke up she started retracting and breathing heavy - sound like wheezing. So, James and I thought that she was having SVT again and we took her to... oh wait... Augusta ER! IDIOTS WE ARE... When are we going to stop!

Her heart was normal (no SVT), but her saturation level (which should be 98-100) was only in the 80's. They held her there for a bit and took some labs and then Portland came and got her. We arrived in Portland around midnight, exhausted and curious as to what was going on. They phoned Boston and we ended up going there around 10 am Sunday morning.

They checked for bacteria b/c her chest x-ray was again, not clear, but all was negative. RSV swab - negative, immunosuppressed - perfectly, nothing indicated there was something majorly wrong. So come to find out, she basically had an asthma attack. James has asthma, I have ecsema and my dad has hay fever or psoriasis - she is basically destined to have asthma. So for future want-to-be moms and dads, check out your partner beforehand (haha - just kidding).

Her SVT medication, Propranolol can also cause asthma-like symptoms so they are switching her to Atinolol (not sure how to spell that yet) and she will be on nebulizer treatments of some sort.

I am actually home and Paitn is in Boston. I know right, are you talking to the same mother? I had no choice - I have no time and James is not working right now so I had to leave my baby, for the first time, 300 miles away over night. Last night was the first time I've left her overnight anywhere w/ anyone. It sucks to be honest w/ you and I cursed the heavens and cried to baby stories off and on throughout the night . I think I've called James 10 times today - but I can't help it. I miss her so much.

She will hopefully be coming home tomorrow, but who knows. Our luck we'll be having Thanksgiving Boston style - HOORAY! Can you feel my enthusiasm?

So, please pray to whomever you pray to that this little girl can come home for Thanksgiving, because this year we all really have something to be thankful for.

Ash

James and I took Paitn to Boston on Tuesday, November 18th. We went down to have an ECHO, EKG, labs, clinic and a chest x-ray to see if that partial collapsed lung and check was @ all cleared up. We were please to see Dr. Blume, Dr. Almond, and Dr. Smooth, along w/ one of Paitn's fans - Steph, an echo-tech that loves to visit w/ Paitn and does her echo's for her.

Paitn's echo came back as normal function (great); EKG came back as normal rhythm (great); labs came back perfect (SUPER); and her chest x-ray came back as perfectly clear (AMAZING!). We are really excited to get a great once-over before the weather starts to really get cold and she headed back to daycare.

Paitn is doing great. She is talking up a storm lately. She says Mama, Dada, cracker, car, Bumpa, Grammie, Nanni, Papa, teeth, cheese, please (these three do sound different), "bye", and she loves to babble and sing. She tries to say almost anything and usually the effort comes through w/ at least her mother and father understanding what she says. She knows what noise a puppy makes and an elephant when you ask her (she puts her hand to her nose for the elephant and lifts her head up, like a trunk - too cute). She is just cruising right along and makes our lives so enjoyable.

Daycare is glad to have her back and she is definitely happy to be there - so happy that yesterday she was "rockin' out" in her crib, shakin' her booty, and was dancing so hard that she slipped or lost her balance and hit her face on a hard part of the pack-n-play. Our darling little red-head now has her first black eye (the right one) and is absolutely adorable. I feel bad, but she did it to herself and she could care less, she does not even know that it is there. Christmas pics should be precious!

Next appointment is down in Portland and then we head for her 9-month biopsy on December 29th. Let's hope for a nice and easy few weeks!!

First of all, thank you to GAT for putting an update on the website. At least it got some type of word out re: Paitn. Also, thanks to Auntie Nicole for emailing a bunch of folks in regards to what was going on... so, here is the official word about what happened in Boston - sorry it took me so long.

Paitn was doing great for two weeks - 10/14/08-11/1/08. Then she started coming down w/ HSV again and a fever. We took her to Augusta Pediatrics on Wednedsay, November 5th and they did not think she had HSV (which is somewhat upsetting considering this ist he 2nd time it has happened), but Dr. Kammerer listened to her heart and thought it sounded quite fast so he wanted James to take her to the ER to be put on a monitor for an hour or so.

Around 5:35 pm James called and asked me to leave work and head to the ER. When I got there, Paitn's heart rate was around 260 and James stated it had peaked @ 298. We were advised that this was due to SVT (Supraventricular Tachycardia http://www.sjm.com/conditions/condition.aspx?name=Supraventricular+Tachycardia+(SVT)). Basically, a different part of Paitn's heart was choosing to start the heart beat, which is way too fast. Please read up on it b/c it is hard to explain in writing.

Boston wanted her down there immediately, but needed Augusta to get the heart rate under control by IV medication. Paitn was going to be flown down by life-flight, but once again, weather was not being cooperative and she ended up going down w/ James in the ambulance (I drove).

Paitn's heart rate was immediately under control by IV medications in Boston and an Echo showed that her function is great and normal. She ended up switching over from an IV medication to an oral medication called Propranolol which is given 3x/day and could be for 6-12 months or longer. Eventually, Boston will try and take her off the medication or just let her body naturally grow out of the dose (as she gets bigger, if the dose stays the same she'll grow out of it) and see how she does. If the SVT continues to come back every time she is off the medication, they will "ZAP" the node that is creating this jumpstart. This is not done by open-heart surgery, all they will do is "zap" the part they need to (I do not have too many details on this part yet as it has not even been discussed as a resolution yet) when they go in and do a catheterization on a future biopsy. So... that brings you up to speed on SVT.

Next subject: HSV - Good thing I can diagnoze her now b/c it seems to be a difficult thing around these parts! HSV is very common for heart transplant patients to get. Paitn may have not been able to get rid of it the first time, so the Infectious Disease team down in Boston has her on a high dose of Val-Acyclovir (adults take this, and it is much better on the kidneys than Acyclovir and is better absorbed) for about a week, and then she will be put on a smaller dose as a preventitive for @ least 6-12 months.

Ear Infection: Paitn does NOT have an ear infection; however, it seemed as though she was starting to get one so they put her on Amoxicillan until Monday, Nov 17th and gave her a few doses of Suftryaxon (no clue about the spelling) by IV while we were @ CHB. She has not had a fever since Thursday.

Lungs/Viral: Paitn has a collapsed right lung, or partial collapsed lung, which basically just means that she has a lot of junk sitting in her upper-right lobe. They checked for anything w/ bacteria, but come to find out - she has the common cold. She has a runny nose and cough just like every other 18-month old around Maine. Fortunately, we were shown how to do chest PT (physical therapy where we pat her back rather hard - like burping) to move some of that crap around and given great advice about having her get fresh air, move around and play, and crying actually helps move the junk. Fresh air is not something we were able to have in the hospital, so thankfully they let us come home on Monday rather than waiting until Tuesday.

Paitn is staying home w/ Daddy this week and will hopefully return to daycare on Monday. Just to let everyone know, she goes to such a great daycare. I am assuming that not many daycare providers would want to take on a responsibility like Paitn, but Carol has and Paitn absolutely loves it there. The tough part is that Paitn is such a love-bug (kind of like a hippy child in 2008) that she does not know any better to stay out of another child's face, but Boston has assured us that she can go back to daycare just like older kids go to school. They also explained to us that these bumps in the road won't happen for ever, at least not as often and we will come out of this unscathed and w/ our little girl doing just fine. We just need to get past the 1-year mark - which is not too far away!! So... again, thank you daycare for caring about Paitn and allowing her parents to breathe easier during the day, knowing she is safe and loved and well taken care of.

So, Paitn is doing well. She is taking her new medications like a champ and has even slept in her crib a bit. The great thing about our little angel is she forgets about all the bad stuff and keeps pluggin' away.

Please, if anyone has any questions feel free to post them - hopefully I've covered all of my basis.

Wednesday afternoon, Paitn went to the Pediatrician’s office in Augusta, as she was running a fever.  Her doctor immediately had them go to the emergency room, followed them over to the hospital and got on the phone with Children’s Hospital, Boston.  Her heart was racing and her heart rate was up to 290 – should be around 110 – 120.  They gave her some medicine based on instructions from Boston trying to get her heart rate down, knowing she would have to be transported to Boston.  The first medicine got her rate down to 250, but wasn’t reducing the heart rate enough.  So in the mean time they called life flight to get that going.  Boston then had them try another medicine, which within 30 minutes her heart rate did get down to 150-160.  This is where they wanted it, so she could be transported.  Then life flight got cancelled due to high winds and rain in Boston, so she was transported via ambulance to the Children’s Hospital and admitted to the ICC on floor 8 - south.  

All we know is that the condition that is causing Paitn's heart rate to accellerate may require a corrective procedure some time in the future but for now nothing is planned for the immediate future.  In the meantime, Paitn will be on a new medication to help regulate her heart rate.  Paitn's HSV is back so that only adds to our little one's discomfort.

Please say some prayers – BIG HUGE PRAYERS. 

Calling All Angels!

GAT o/b/o Grammie Tess

I did not want to post anything prior to Halloween and jinx the whole thing... so now I can because we made it to--and through--Halloween.

Paitn is doing really well. She has been at daycare now for 3 weeks (minus the routine appointments to the pediatrician's for her 9-month immunizations, flu shot and Boston for a once-over) and she loves it. She eats and plays great, and it exhausts her so much that one night last week she slept in her crib almost the entire night!

Halloween was a blast. She was a little lamb "Baaa" is what we tried to teach her to say. She would do it once in awhile, but not if too many people were around. She did well in her little costume (hopefully pictures will be coming soon). The cutest part was a little tiny tail and floppy, soft ears. She is amazing.

She will have an appointment down in Boston as a routine Echo, Ekg, labs, etc. and then will hopefully not need to be seen until next year, when she will have her 9-month biopsy and catheterization.

We are in our house, just trying to get back to normalcy and get on somewhat of a routine. Paitn finally enjoys bath time, so that is another plus, and she loves spaghetti. 17 months!! WOW!

So, Paitn now has an ear infection w/ slight upper-right lob pneumonia. They wanted to hospitalize her last night; however, we took her home and her fever broke! They gave her a STRONG, STRONG antibiotic known as Suftraxon (I have no clue how to spell it) and that is supposed to take care of anything along the lines of infection.

Paitn went to the pediatrician's as a follow-up this morning. She is doing great, no fever and they sent her home on a step-up from Amoxicillin and she will go back for an 18-mo well-check on Friday.

We are hoping things slow down a bit. The poor girl had a great week @ daycare and moving into our new home, and then WHAM! Something else happens to her. I am just hoping she is able to enjoy Halloween.

Thanks to GAT and Uncle Nellie, and of course, Marissa for letting us live in their home these past few months. It was a huge sigh of relief to have our own space and a comfortable atmosphere for Paitn. So, love you and thank you.

Paitn was released from Portland last Thursday. She has been increasing her fluid intake as well as her yogurt/animal cracker intake (pretty much all she will eat right now). Her mouth is almost 100% cleared up (no new lesions), just a few blemishes that are left to disappear.

We were going to meet the life-flight crew that brought Paitn from Augusta to Portland tomorrow; however, an abnormal Echo on Tuesday down in Boston caused an alarm. So, James brought her back home Tuesday night and Paitn and I headed down to Boston for 7 a.m. on Wednesday. She had an EKG (normal), Echo (this one was normal), a catheterization, and biopsy.

Abnormal function (Tuesday was mild dysfunction) is what happened to Paitn before. Her heart was not squeezing well enough. So, of course James and I were majorly concerned.  The abnormal Echo may have been b/c she was moving around a lot, she has been getting over a viral infection, or b/c sometimes her heart just does not squeeze as tight as it should for a certain period of time. Dr. Singh stated that Paitn's echo's have shown this before - we have never been told this since her heart function normalized after the transplant. Anyway, the pressures in her heart (to show her dry-to-wet ratio) was 8 (they want it between 5-12) which is perfect! The pressures were better than ever. They took 7 little pieces from her heart for the biopsy to check for rejection (again, they go up thru a major artery in her groin) and all came back CLEAN! CLEAN! CLEAN!.

James and I, along w/ everyone else that knew she went down, are so relieved. We need this break. We need for Paitn's body to heal from all the bruises from lab work, IV's, mouth lesions, etc. She deserves a little normalcy in her life.

Hopefully nothing in Boston for a few weeks - but we will see.

By the way - Paitn is down to 4 medications. Her two immunosupressents (Tacro and CellCept), 1/2 tablet of baby aspirin, and 1x day Nystatin (which should be done very soon). Pretty exciting! It makes drawing up med-time a lot easier. : )

First, thanks GAT for making a quick post just to inform people that Paitn has been hospitalized. And, thank you for mentioning the golf tournament that so many people sponsored/participated in.

 The golf tournament for our daughter was overwhelming. James and I could not believe how many people came to support our little peanut and have a GREAT time in her honor. We feel very blessed to know that so many people have continued to follow Paitn's story and want to do anything to show their care and support for a miraculous little girl.

Paitn went to Augusta Sunday morning for what they thought was upper-right lobe pneumonia and Hand, Foot, Mouth Disease. We were discharged Monday night b/c Paitn was drinking/eating @ that point. Tuesday Paitn's mouth continued to blister and sores started their way down her and chin as well as a constant fever (higher above 101 F). James and I then brought her down to Portland.

Augusta was WRONG! She has HSV (Herpes Simplex Virus), which is NOT the same as the STD Herpes (just to clarify). Many heart transplant patients get this very easily b/c it is a virus and where they are so immunosuppressed, it is extremely hard to fight off.

Paitn's X-rays and ECHO's have all come back clean and clear. She has not had a temperature in days and her demeanor is slowly improving, along w/ the sores in and around her mouth. Paitn is hooked up to an IV for fluids b/c she has not drank or had anything to eat in days! Today though, she had several bites of yogurt and a sip of water - hopefully this is a good sign of improvement and she will be able to go home by the end of the week.

So, for now, we are just letting her rest and offering her anything and everything in hopes that she will want to start diving into those cheerios, yogurt, animal crackers, or anything else. Paitn is still clutching her cheerios container and uses it like a security blanket.

Thanks for all of the support! Again, the golf tournament was amazing and the volunteers who were there to help - THANK YOU! You all did a great job and looked so stylish in the volunteer t-shirts. It was a huge success and hopefully everyone had a fun and relaxing time.

Calling All Angels