tag:blogger.com,1999:blog-59161279475497113412024-02-07T20:12:24.400-08:00Samantha's HeartSamanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.comBlogger31125tag:blogger.com,1999:blog-5916127947549711341.post-21515924749570909712010-06-16T17:25:00.001-07:002010-06-16T17:25:47.431-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIeHxRJzNrpfP-YTWCyY9hI44jT0EG4-PbqbeGLxfHbTBZYXDJMcDMX_f8TiRliGUxn8aPfPJesBZAi7ijL-4lsIvOLilvamjehte0tZnH_XEB0oriziA6QFNvYnY9GwcziIeFi3NGZr87/s1600/Swimming+Time.JPG"><img id="BLOGGER_PHOTO_ID_5483532170886035250" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIeHxRJzNrpfP-YTWCyY9hI44jT0EG4-PbqbeGLxfHbTBZYXDJMcDMX_f8TiRliGUxn8aPfPJesBZAi7ijL-4lsIvOLilvamjehte0tZnH_XEB0oriziA6QFNvYnY9GwcziIeFi3NGZr87/s320/Swimming+Time.JPG" border="0" /></a> SWIMMING TIME WITH MY BROTHER!!!<br /><div></div>Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com0tag:blogger.com,1999:blog-5916127947549711341.post-1782046719029171722010-06-16T17:24:00.000-07:002010-06-16T17:25:10.335-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidaThSlEe8kCKPAt_hW0nJA6g1DBRig4KoRvVjl9fgIQ2eEMR-P4hZYnbEPX8oQh6B9cFKb9CeFdOKnQillM0aPxkq_M1EKgmC3Y5i3VMpUqI4CbDyEzWklDj-lISUzyKR3wPDLZJjZPGf/s1600/Ice+Cream+Time.JPG"><img id="BLOGGER_PHOTO_ID_5483531980790097618" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidaThSlEe8kCKPAt_hW0nJA6g1DBRig4KoRvVjl9fgIQ2eEMR-P4hZYnbEPX8oQh6B9cFKb9CeFdOKnQillM0aPxkq_M1EKgmC3Y5i3VMpUqI4CbDyEzWklDj-lISUzyKR3wPDLZJjZPGf/s320/Ice+Cream+Time.JPG" border="0" /></a><br /><div></div><br />Frankie & Sammi sharing an ice cream sundae!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com0tag:blogger.com,1999:blog-5916127947549711341.post-65644612714796862282010-06-16T17:04:00.000-07:002010-06-16T17:10:33.891-07:00Growing up....Just a little update on Sammi....Sammi is walking from furniture to furniture and sometimes she tries to take off across the room and she makes it a little bit, but not too far before falling...but she tries really hard! She is starting to say more words and she loves to dance and sing, but most of all likes to do everything her big brother is doing (or at least tries to). She loves to play the Beatle Rock Band and DS with her brother, as well as the guitar and drums. Her laugh is as beautiful as she is! Sammi is getting ready for her next catherization next month to see if her first two surgeries have worked....so please pray for our little angel.....She still doesn't like to eat much solid foods, but she does like bannanas and frozen rasberry yogart and she absolutely loves chocolate (she tries to take Frankie's chocolate..lmao). We are enjoying every second with her....her smile brightens the room, her laughter is contagious....she has the best big brother in the world who doesn't every yell at her and gives her everything she wants...he even spends his christmas and birthday money on presents for her.....I have two awesome kids! We will keep you updated after her cath next month. Thank you everyone for your continued prayers, thoughts, text messages, emails, calls, letters, cards....they give us strength and they remind us that we are not alone and we have so many people pulling for Sammi - thank you, thank you!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com0tag:blogger.com,1999:blog-5916127947549711341.post-56163452443556153452010-05-12T17:51:00.001-07:002010-05-12T17:54:24.596-07:00Sammi update...I havent' had much time latley to update my blog and many people have been e-mailing asking me to just write a little note on how Samantha is doing....she is doing great. She has almost recovered 100% from her surgery. She is happy and is crawling all over the place. She is "cruising" from one piece of furniture to the next and any day now, we expect her to take off across the room! She is saying more words now and she is definitely daddy's little girl - temper and all! I am having trouble with downloading pictures of her, but once I figure it out, I will post some new pics....Sam's next surgery is in July and then we find out at that time what the next plan is...thank you everyone for thinking of her and praying for her....we so do appreciate it.Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-45370238645073505332010-04-11T09:46:00.000-07:002010-04-11T09:50:58.604-07:00Sugery 4/7Sorry I haven't posted an update on Samantha's surgery that took place last Wednesday, I have just been really busy. Samantha made it through the surgery - she is in a lot of pain and is not eating very well, but she is okay. We have to wait 12 weeks before she can have a catherization done to see if the surgery worked or not and then we wait...wait for her colleterals to grow so they can do the third part (open heart surgery) or as they told us, if they don't grow then there is nothing left to be done. Thank you everyone for your thoughts, prayers, text messages and messages, Bobby and I really appreciate all of the support and care for Samantha.Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com4tag:blogger.com,1999:blog-5916127947549711341.post-41469009391045829232010-03-28T06:08:00.000-07:002010-03-28T06:09:18.780-07:00Second Surgery Scheduled for 4/7I promised I would let everyone know when Sammi's second major heart surgery is scheduled and we just scheduled it for next Wednesday, April 7th....after this one, there is one more HUGE surgery to go this year and then we can breathe easy for 3 years before the next one's start...Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com3tag:blogger.com,1999:blog-5916127947549711341.post-16683980885967329982010-03-13T04:40:00.000-08:002010-03-13T04:47:26.249-08:00Going Ahead with 2nd heart surgerySammi's doctor called us yesterday and advised that the surgeon wants to go ahead with the second part of her heart surgery and that we should not be overly concerned with her aneurysm, as the aneurysm is surrendered by scar tissue. So we are now waiting for the call to set the date for her surgery, which they want to do within the next 3 weeks. After this surgery, she has one more that must be done before the end of the year and that is the huge one, where they will finish the unifocilization (making a pulmonary artery), put a coil on the aneurysm and fix the thickening of the walls of her heart. Then we can take a breather for a bit before the next round of surgeries start. <br /><br />Samantha is doing great and she now started crawling. She is a really happy baby - she loves spongebob square pants, yo gabba gabba, books, music and she especially loves playing with Frankie. <br /><br />As hard as this has been on her and all of us, she keeps fighting and she hasn't given up! She is definitely my inspiration!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-16175633834305076342010-03-03T06:32:00.000-08:002010-03-03T06:37:31.807-08:00Result of Sammi's cath on 3/1Sammi's catherization results were not as positive as we had hoped for. They found an aneurysm near her lungs, so now can not move forward with the 2nd part of the unifocilization (heart surgery) until they figure out what to do. Her stenosis of the aortic valve is also really bad. We are waiting for her cardiologist at CHOP and her surgeon to have a conference call with 35 to 40 top pediatric surgeons/cardilogists to discuss her case and see how they should proceed. Everything they are doing for Samantha is new and as they put it, "they are paving new grounds with her" as what she has is the worse case recorded. Nothing has been easy and for once I would just like the doctor's to come out and say they have good news and that never happens. We should know more next Wednesday. I just ask that you all pray for Samantha - our little fighter needs your prayers right now. Thank you! I will post again after I speak to the doctor next week!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com2tag:blogger.com,1999:blog-5916127947549711341.post-69016803932738220262010-02-04T09:06:00.000-08:002010-02-04T09:08:35.251-08:00Samantha's weightWELL ARE LITTLE FIGHTER IS STILL GOING STRONG AND PROVING ALL THE DOCTORS WRONG!!! SHE WEIGHS A LITTLE BIT OF 14 POUNDS NOW! SHE HAS SKIPPED CRAWLING, BUT IS TRYING TO WALK! HER NEXT CATHERIZATION IS MARCH 1ST AND THEN WITHIN 2 WEEKS AFTER THAT HER SECOND PART OF HER UNIFOCILAZATION.....SHE IS MY STRENGTH AND KEEPS ME FIGHTING! SHE NEVER GIVES UP!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-4207191151353181802010-01-23T04:23:00.001-08:002010-01-23T04:24:35.554-08:00Community Helps Our Daughter!We are so greatful to our community for helping us to help our daughter...below is a link to a newspaper article on how they are helping our daughter and another little girl! <br /><br /><a href="http://www.lohud.com/article/20100123/NEWS03/1230347/Stony-Point-Seals-get-ready-to-brave-cold?GID=w4rg51ZiH4uTBrQOvtgFmAalF3b2T/FUZXECQAoBFYA%3D">http://www.lohud.com/article/20100123/NEWS03/1230347/Stony-Point-Seals-get-ready-to-brave-cold?GID=w4rg51ZiH4uTBrQOvtgFmAalF3b2T/FUZXECQAoBFYA%3D</a>Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-28042179126388037392009-12-30T15:50:00.000-08:002009-12-30T16:04:36.646-08:002nd Surgery DelayedSamantha's second heart surgery that was suppose to be done in January has now been pushed back to March and she will have to have another catherization done prior to that surgery to make sure she is getting proficient blood to the lower part of the lung, to make sure that the stent that was placed on 12/4 is working and that the lower colleteral that was dialated did not collapse again..... I have been preparing myself mentally for this second surgery as I know how hard a time she had with the first one and now we have to wait another two months...ugh :-(<br /><br />On a MUCH brighter note...Samantha turned one on 12/19. She LOVED her cake!!! We had sooo much to celebrate that day....Samantha is beautiful, funny, loves music, loves to make faces, dances to spongebob square pants and all music, loves to play with Frankie....I truly don't know what I would do without her and my son....when I start to feel drained, like I can't fight anymore and am too tired...I just look at her and know that she hasn't given up, that she is still fighting and all my strength comes back.....she is definitely an angel!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-86700070655002251642009-12-04T12:38:00.001-08:002009-12-04T12:49:31.039-08:00Result of 12/4 CathSamantha had her follow-up catherization done today and even after all of the negative comments and thoughts from the doctors telling us that they didn't have high hopes that the first part of the unifocilization would work, Samantha PROVED THEM WRONG!!!! To quote the doctor "he is absolutely amazed" at how well she is doing and how the first part of the unifocilization worked!!!! She did unfortunately have to be balloned (dialated) and she did have to have a stent put in and again, unfortunately, they think she may have a blood clot, which means more shots at home of levonx, but that is nothing compared to the news that we can now go ahead to the next part of the unifocilization...... We will have to, once again, after the second part of the unifocilization go through this again where we have to wait to see if it worked so we can have the third and final surgery or if she will need the 4 organ transplant.... But for now, all looks good and my angel has proven everyone wrong.....just when I almost gave up, she showed me how to have faith again. She is definitely an angel sent from god!!!!! Mommy and Daddy are definitely going to give her one awesome first birthday party and Daddy wants to invite all those doctors who told us she wouldn't live and to take her home to die so Samantha can throw cake at them :-)Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com2tag:blogger.com,1999:blog-5916127947549711341.post-85781832646824770102009-11-23T03:49:00.000-08:002009-11-23T03:50:54.729-08:00Update.....12 days to Samantha's cath and finding out if we can move forward with the next surgery or if she will need a heart, double lung and liver transplant....waiting is driving me nuts, but finding out is making me sick to my stomache....Samantha also lost weight...went from 11.15 to 11.10...even though it is only 5 ounces, it is a step back that we didn't need....2009 sucked, hopefully 2010 will be better......Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-68397976073062335562009-11-12T13:12:00.000-08:002009-11-12T13:17:44.908-08:00Catherization delayed until 12/4<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj_D5yPQh_kF38W_-ecuY28SRq4_lNdVGx0QlrqL5yUKoMvyELWJIWvpoj3VSEnCF7GIK-73Cwk21i_nS78pgMszC958WbGznfcZarwgov2ZY9uMHTPELeErBZkpguUGs0ORIiBQ0dS4uT/s1600-h/Sammi+Pea.JPG"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjj_D5yPQh_kF38W_-ecuY28SRq4_lNdVGx0QlrqL5yUKoMvyELWJIWvpoj3VSEnCF7GIK-73Cwk21i_nS78pgMszC958WbGznfcZarwgov2ZY9uMHTPELeErBZkpguUGs0ORIiBQ0dS4uT/s320/Sammi+Pea.JPG" alt="" id="BLOGGER_PHOTO_ID_5403328995214051330" border="0" /></a><br />Sammi's catherization and ballon surgery was postponed until 12/4, as the little princess has bronchotis and they cannot do the procedure until she is at least 2 weeks off her antibodics and we are sure she is 100% well..... Now I am worried because her second H1N1 vaccine shot is on 11/30, only 4 days before the cath surgery and she got sick after the first H1N1 shot...ugh.... Samantha is now up to 11.12 pounds - !!!! She finally has chubby cheeks!!! It is awesome.... Here is a picture of my little angel from Halloween -Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com2tag:blogger.com,1999:blog-5916127947549711341.post-53168585595064050512009-10-28T16:17:00.000-07:002009-10-28T16:20:22.930-07:00Follow-up CatherizationSammi's follow-up catherization to check to see if the first part of the unifocilization worked is scheduled for November 11th...I am holding my breathe until then, as that is when we find out if the pulmonary colleterals that they tied together into the shunt have grown or not...her oxygen stats make me think that they have not, as they have gone pretty low since her surgery 9/11....I don't know what we will do or which direction to turn if the surgeon comes out and tells us they haven't grown.....I am really scared....really praying for that miracle that has yet to come....Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com4tag:blogger.com,1999:blog-5916127947549711341.post-64852821966516122412009-10-23T12:10:00.000-07:002009-10-23T12:11:08.675-07:00Cardiologist Visit UpdateAnd so goes the vicious cycle...we take a huge step forward with Samantha (her weight gain) to get slammed 10 feet back with her oxygen level...plummeted to 64 and is dropping.....now they are talking oxygen at home and for the rest of her life....I am so F*ing fed up and disgusted...praying for a miracle, but losing faith...Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com2tag:blogger.com,1999:blog-5916127947549711341.post-25927780945839103682009-10-22T08:05:00.000-07:002009-10-22T08:06:23.950-07:00Yeah Sammi!!!Sammi FINALLY weights in at 11.5 pounds...after 10 long months our little fighter finally broke the 11 pound barrier! YEAH!!!!!!!!!!!!!!!Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com0tag:blogger.com,1999:blog-5916127947549711341.post-78716508984116673992009-10-16T17:07:00.000-07:002009-10-16T17:15:37.479-07:00Doctor Visit...Went to CHOP yesterday...the cardiac appointment was not what we expected...Samantha's oxygen stats were low 60's when crying and high 60's when not crying....this is much worse than before the surgery....but we are not going to give up hope...Bobby and I feel that they were low because she had just got done crying and was still upset, however Sam's cardiologist was not as optimistic as we were....she will be getting a cath done next month to check the sugery they did, it may be that her pulmonary colleterals they tied to the shunt are clogged and need to be balloned...we just don't know, and will have to wait to see. Another month of waiting...I feel that is all we do is wait and wait and wait for one piece of good news...it is so fustrating and exhausting... On the flip side, her liver appears to be doing awesome and is amazing her Allageles (I am so tired, I don't even think I spelt that right) doctors....they are taking her off her formula and going to try this special formula for kids who have issues with gaining weight/don't like to eat....it has more calories, but unfortunately, it is just as expensive as the formula she was on.....but hopefully the more calories will help her gain weight. She only gained several ounces...she is not 10 pounds 14 ounces and according to the doctors she should be close to 20 pounds for her age.... On the bright side, Samantha said another new word "up". She is also on target neurologically, which is awesome. Will post new pics soon....Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-84402995426894877692009-10-13T15:27:00.000-07:002009-10-13T15:28:38.268-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1xbA6L-uwWwGrtfBSqBwB4E0DscGowXVwMy7Bm9otxBWPYTTRYyz2B2nI77pkZQSDTHjKxjcp8bkkO93scye_plfpMpcu-gnxZmYE51y6X6vHAzzc_QOxMDtohPcPedBJSnZbwBKyxYyc/s1600-h/Frank+and+Samantha.jpg"><img id="BLOGGER_PHOTO_ID_5392214886396847554" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 200px; CURSOR: hand; HEIGHT: 170px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1xbA6L-uwWwGrtfBSqBwB4E0DscGowXVwMy7Bm9otxBWPYTTRYyz2B2nI77pkZQSDTHjKxjcp8bkkO93scye_plfpMpcu-gnxZmYE51y6X6vHAzzc_QOxMDtohPcPedBJSnZbwBKyxYyc/s320/Frank+and+Samantha.jpg" border="0" /></a><br /><div>Samantha with her big brother, Frankie, at the hospital....Samantha just LOVES pulling Frankie's hair...she laughs and screams! LOL</div>Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-33703910265543544692009-10-13T15:17:00.000-07:002009-10-13T15:19:09.640-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRj-CnWJ2SiDcLu8e7hle0XLJsC9GoA0U5HRA2QgG5NqbhtV85yFeCe1N8XJX7gCBUgH43Z84IdgGhKaBBI4phpGJmO60X6kExh1bS0djyOkqyFJdpXHJJWr6Y0yD1lM4G4-KdQEbIn3DE/s1600-h/untitled.bmp"><img id="BLOGGER_PHOTO_ID_5392212607774513186" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 251px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRj-CnWJ2SiDcLu8e7hle0XLJsC9GoA0U5HRA2QgG5NqbhtV85yFeCe1N8XJX7gCBUgH43Z84IdgGhKaBBI4phpGJmO60X6kExh1bS0djyOkqyFJdpXHJJWr6Y0yD1lM4G4-KdQEbIn3DE/s320/untitled.bmp" border="0" /></a><br /><div></div><br />Mommy's little angel...pretty in pink.Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com0tag:blogger.com,1999:blog-5916127947549711341.post-36905498692665781562009-10-13T15:15:00.000-07:002009-10-13T15:16:18.610-07:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGvm3uolx_n4yASdmH-rV81ChrPCR0S6a2gvWI1eauKv3E5Gd7mUVHEVlNYpepJNvDaU5bgZwAnN0xyeGJmniUlPjX5dUSyD2mXwHcr3xVq0xX9-kctxSq3vhSZ-lJa29LNGNev0mBKrFW/s1600-h/downsize.jpg"><img id="BLOGGER_PHOTO_ID_5392211866056153730" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGvm3uolx_n4yASdmH-rV81ChrPCR0S6a2gvWI1eauKv3E5Gd7mUVHEVlNYpepJNvDaU5bgZwAnN0xyeGJmniUlPjX5dUSyD2mXwHcr3xVq0xX9-kctxSq3vhSZ-lJa29LNGNev0mBKrFW/s320/downsize.jpg" border="0" /></a><br /><div></div>Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-267563397099764682009-10-13T05:17:00.000-07:002009-10-13T05:24:27.401-07:00SamanthaSamantha has been doing very well as far as the heart surgery is concerned - which is awesome...we noticed that her fingernails are not as blue, and around her eyes are not as blue, which is just awesome....we hope that means the pulmonary colleterals are growing....we will see very soon, as this Thursday we go to CHOP and schedule her catherization for the end of October/beginning of November to see if they have grown or not. We keep praying! On the flipside, the g tube is a nightmare....absolutely horrible...I think it was the biggest mistake we ever made....how can she gain weight from it, if she is up all night screaming in pain from gas??? It just plain sucks..... However, thanks to Dan and Kerry, we now have information to take with us to the doctor's on Thursday to see if they can try a different way with the g tube...I hope they listen, as it seems to be working for Dan & Kerry's baby.... I can't believe that Samantha is going to be 10 months old in 6 days...almost a year has past since she was born and even though it has been a nightmare to see her go through all of this, I have enjoyed her so much...she is an angel...she makes me laugh when I feel like crying and when I feel like giving up because it is just so much, I look at her and see that she is fighting and she gives me strength to keep going.....I will post updated pictures on here of Samantha when I figure out how to do it....I keep trying, but can't get it...if anyone knows how, perhaps they can send me a quick note to explain to me how to do it, as everytime I try, it doesn't work - LOL.....Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com2tag:blogger.com,1999:blog-5916127947549711341.post-86916056605562191262009-10-03T18:04:00.000-07:002009-10-03T18:14:28.628-07:00Home....Finally being home with Samantha is awesome....staying home with my daughter and my son instead of working is priceless. Samantha is a lot of work, but I love being the one taking care of her....Samantha is having a lot of issues with the g-tube and not eating very well by mouth and it is truly fustrating, but we won't give up, we keep going forward. Her next appointment with the cardiologist at CHOP is on 10/15 and then we schedule her catherization...I feel so strung out waiting for this catherization, as that will tell us if her pulmonary colleterals have grown and what our next step is - the second part of the unifocilization or are the doctors going to "throw in the towel"..... If anyone can give me any insight or experiences in regards to a heart, double lung and liver transplant in infants, I would truly appreciate it....there really isn't too much available on line regarding a 3 organ transplant and I am trying to get as much information I can before the catherization in case the pulmonary colleterals haven't grown.....Thank you so much to everyone for everything....we truly do appreciate it.Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com1tag:blogger.com,1999:blog-5916127947549711341.post-16664432644083069762009-09-29T17:20:00.000-07:002009-09-29T17:34:45.066-07:00FINALLY....we brought Samantha home yesterday after arguing with the doctors, as they wanted to keep her because of her weight problem (failure to thrive)....she is (according to them) 10 to 11 pounds under weight....We wanted to bring her home, as we felt that being in her own home environment would help her to be comfortable and she would gain weight....at the hospital, she was stressed, constantly being poked and prodded, woken every 2 to 3 hours in the hospital at night...who could rest, heal and get better and gain weight under that stress? Her oxygen level before the surgery was 72 when calm and 60<span class="blsp-spelling-error" id="SPELLING_ERROR_0">ish</span> when upset...right after the surgery her oxygen level was 84 when calm and 77 when upset...they have now dropped down to 77 when calm and high 60s when upset....when I asked if that meant the surgery wasn't working, everyone gave us the run around and not a direct answer.....we were told we would have to wait until she had the <span class="blsp-spelling-error" id="SPELLING_ERROR_1">catherization</span> in a few weeks....how <span class="blsp-spelling-error" id="SPELLING_ERROR_2">fustrating</span>.... Then they tell us that we are doing all of this (which is not a permanent fix) so that she can live to be 10 - 15 years old..... I keep questioning if we are putting her through all this hell, just so we can have her for 10-15 years...how selfish are we???? Then other days I wake up and say we are doing this because she deserves a chance and who knows in 10 to 15 years what medical discovery they could make and that they could come up with something to help her live to 80 - 90 years old.... It feels like I am always questioning our decisions, questioning myself every day.... My daughter's first words were "<span class="blsp-spelling-error" id="SPELLING_ERROR_3">da</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_4">da</span>" and at the hospital she said her second words...."ow". Isn't that just great?? and that is said with much sarcasim....my little girl's second word was "ow" as she was crying in pain and looking at her daddy saying"da da ow ow".....she wanted her father to help her to stop hurting..... This just freaking sucks.... But I am so glad to be home...Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com2tag:blogger.com,1999:blog-5916127947549711341.post-6816554512839135222009-09-25T10:57:00.000-07:002009-09-25T11:06:11.365-07:00Samantha UpdateAnother longggg week is coming to an end at CHOP...Samantha had her g tube surgery on Monday and although the surgery went fine, she is having a lot of trouble with the g tube...it is producing a tremendous amount of gas and reflux everytime we use it.....at one point,she was in so much pain, that my angel actually pulled her hair out! We are trying to fine tune the feeding and the gas/reflux issue.....She is also having more than usual problems with her weight gain...down 6 ounces......In regards to her heart, she seems to be recovering fine from the surgery and in a couple of weeks she will have a catherization done to see if the pulmonary colleterals have grown..if not, then they don't see any reason to continue the surgeries and they state there is nothing to be done. I had a lot of doubts about continuing all of this after seeing everything that Samantha has gone through, the hurt, pain, crying...but Samantha is not willing to give up, so I won't either...if they say that is it, they can't help her, then I move on to my last hope...Dr. Hanley..... Right now, my angel is sleeping and my husband (who just came back after being gone all week) is with her, so I am going to go enjoy a nice long hot shower..... Thank you again everyone for everything....we are truly blessed with amazing friends and family...thank you.Samanthahttp://www.blogger.com/profile/10565754344680831903noreply@blogger.com3