FINALLY....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 60ish 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 catherization in a few weeks....how fustrating.... 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 "da da" 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...

Samantha Update

Another 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.

Long Overdue Update

Sorry for the delay in updating on Samantha....my husband had to leave, so I have been here alone with her and I don't leave her, especially since we had two very bad experiences in the past 3 days...so I don't leave her alone at all. Samantha is doing better....her platelet level is back up to 120,000 - not near the 256,000 mark as she was before, but much better...they still don't know why this happened....On Monday they are going to put in her g tube....between the incision on her side from the heart surgery, the stitches from the chest tube, the stitches on her wrist and now the stomache surgery, I don't even know how the heck I am going to be able to pick her up without hurting her, as she is so small, there are no places on her small body to pick her up without hitting her incisions. I spoke with one of her surgeon's team members and it was expressed that they have talked about Samantha repeatedly in the past week since her surgery and the overall impression that my husband and I are getting from them is that they don't hold much hope that her pulmonary collaterals will grow....I am having a really hard time with this and can't accept that there may be nothing noone can do....I feel really lost, sad, angry, etc... Everyone keeps saying hold on to my faith, my prayers, etc...but that is really hard to do when you know in your heart that you may lose your daughter.... I still can't get on facebook, so if someone could please let Dan and Kerry know that I am thinking of them and Ruby, I would truly appreciate it. I will try and update again by Tuesday....Hope everyone has a nice weekend.

Samantha had the best night so far....she is not eating very well, but it was the best night for her sleepwise. We are waiting to find out why she has hardly any voice, when the other day she had a voice....we are waiting to find out why she is congested and coughing (it sounds so horrible) and we are still waiting on the platelets and why they are soo low. So we wait and wait.....she is getting platelet transfusions and she seems to do good after them, but then after awhile the level goes down again...very frustrating......The brain and chest scan show no bleeding, which is good, but now they are suggesting what they refer to as "old people's disease", which is called HIT or HIP, which I have to research when I have time, but apprently what it is is that you develop life threatening blood clots that could kill her or cause her to loose limbs.....Why they think she would have the "old people's disease" is beyond my comprehension, however everything that happens to Samantha is beyond me! So now we wait for those results and if she has it, then we need to be trained on how to deal with that....Every time we go to the doctor's/hospital, they tell us she has something else.....it is so disheartening.....

Update...Samantha had a rough beginning last night - she went into an absolute anger fit and stopped breathing, they had to bag her...it was very scary.... My little girl has some temper on her...she didn't like the asprin they gave her and she started to raspberry and she got angrier and angrier and kept doing the raspberries...needless to say she went into a complete rage. She is showing all of us she is not giving up and she is going to fight until the fight is over. We are now dealing with the platelets still...waiting to see what is causing this problem...they have no clue and every test they are doing comes back negative...so we wait. They are keeping our little fighter sedated so as not to anger her....I will post again later after the doctors meet with us. Thank you again everyone for your prayers, thoughts and support...we truly do appreciate it. God Bless you.

Samantha's breathing is better...so we move one step forward, but yet take 2 steps back as her platelet level is suppose to be 150,000 but is now 12,000 and no one knows why...they checked to see if the blood thinners are causing it, but they are not, now they are doing a chest scan to rule that out and then onto a brain scan to see if is bleeding in the brain...if they rule all of the above out, we go from there....very frustrating....She is a fighter though....she got mad from being poked and prodded and even though she is out of it on painkillers, she managed to raspberry the nurse 3 times - lmao.

Thank you everyone for your support. I am having problems with facebook and cannot access it. Samantha had a horrible night...she keeps stopping breathing...the surgeon told us the pulmonary colleterals were so small and that he doesn't have much hope for going forward with the rest of the unifocilization....unless the colleterals grow,but he appeared to me that he didn't have much hope in that. The only other option is a heart, double lung and liver transplant, which he says that he doesn't believe would work for Samantha....so in essence, all my hope is shattered....I keep asking why we are putting her through this hell...to see her lying there in so much pain...for what? Because we can't let her go??? It's not fair to her...I wouldn't wish this hell on anyone....But, yet she is a fighter and I don't want her to think we gave up on her....I pray for a miracle, but I don't think God hears me.....

Samantha's Surgery

Samantha got into surgery later than expected today...the surgeon has decided that he cannot do the entire focilization today and the stenosis of the aortic valve in one surgery....he believes she won't make it through one surgery to do everything...so we are going to be doing a long drawn out process of multiple surgeries every 2 to 3 months until the focilization is done and then we will do the stenois.....Today they are going to do just the right side of her heart....the surgeon told us this morning that the pulmonary colleterals are extremely small and very narrow and although he is confident that this phase of the surgery will go well, he is worried that they won't grow or they will get more narrowed.....so my worry is okay if they get more narrow and don't grow, then what? If they started the unifocilization and they can't finish it...where does that leave Samantha? I can't believe that she has to do this 3 more times in the next 12 months....