Lost

Who watches Lost? Anyone? Everyone? Scott and I can't have much of a life outside of our home. We cannot commit to certain TV series because of our day to day chaos. Soooo we started renting series through Netflix. AWESOME! We actually started out watching 24 as our friends Nestor and Debbie got us totally addicted. We watched all 6 seasons and loved them all. Once it ended Scott and I didn't know what to do with ourselves. So we started renting Lost. We are only on the first season, but my god is it good! Don't tell me anything but I have 2 questions for those of you that watch it: 1) Is the show actually still running, what season?
2) Does it stay this good for the next few seasons to come? If you haven't seen it I recommend that you start renting it from season one. It will change your life!

What's Next!

SO now that we are home and settled in we are on to the next project. While we were in the hospital The Today Show did a segment on Cord Blood in-fusions with children with Cerebral Palsy. This has been around for a while but not in this country and not with a child's own cord blood. Duke University started doing this with a child's own cord blood. Of course as soon as we heard this and I mean with in the first 5 minutes Scott and his dad were on the phone with NBC, the reporter, the family they did the story on and Duke University. Everyone was so kind and accomodating especially the family. TO hear this news of a little boy with so many developmental delays (less than Sam) improve so much within the next 5 days after treatment added such a tremendous light of hope for us. I mean if it worked for this sweet little boy why can't it work for us too. Miracles happen everyday, why not to us. Even if this insfusion helps Sam swallow enough so that we don't have to worry about choking, or that it helps him move a little more, or talk, or wave, whatever... Anything will be a miracle. Of course I am hoping for The Cure! But I will take any improvements. The thing is we have nothing to loose. Scott and I decided to save the cord blood shortly after I became pregnant. If you can afford cable and a cell phone than you can afford to save your baby's cord blood. Regardless of what the research tells you about today, saving a child's cord blood can mean the difference between curing a devistating illness, paralysis, brain damage, etc... later in the future. The possibilities with cord blood in the future are endless.

SO the prayers for Sam certainly worked in the hospital and we are so grateful for all of them. Now I am asking to please pray that Duke even accepts us and that we will see tremendous improvement from this very safe non-invasive procedure. Here is the link to the story. http://www.msnbc.msn.com/id/23572206/

Correction...

Sorry if I misinformed people. Sam definitely had a stricture/ blockage where formula could not pass despite the type it was. After the stricture had subsided Sam continued to have difficulty but of a different kind. He was more bloated and gassy and pretty much uncomfortable. At that point we were only feeding him 15ccs/hr. We needed to get him up to 30 in order to get home, but because of his discomfort we could not advance and this was on Wed. Thursday I spoke with another mom, whom I wrote about, that mentioned the difference in absorption between my formula (Peptamin Jr. unflavored) and the formula the hospital gave us (Peptamin Jr. vanilla flavored). Once I went home to get my formula which was right after I spoke to her Sam immediately began to tolerate 30 ccs over a 12 hour period. That is why we got to go home Friday. Had we have given him the unflavored formula starting Tues. we probably could have gotten him home Wed. night. Either way it all worked out and everything is fine.

Home At Last!!!

Yup, we are HOME!!! So the reason it was taking so long to get Sam up to his nutrition mandate was because the formula the hospital was having us use (almost identical to our formula) was a bit different than the one we were using at home. Which means Sam was getting gassy and uncomfortable because his system wasn't digesting it properly. So how did I figure out that the key to getting us home earlier than Sat. or Sun depended on the formula? The doctors... no, the nurses...no, the nutritionist...no... The answer is another parent who has a son in a very similar situation and is so unbelievably knowledgeable. Who would have thought that one tiny little differnece in my son's formula would have had such an incredible impact on his system. When I told the doctors and nurses they said wow, never thought of that, it totally makes sense. So look we all learn something new every day. Glad to be home... Stay tuned for our next venture. We will let everyone know what is up our selves next for Sam. We we have an exact date then we will let everyone know what we are doing. Thanks you all so much for your prayers and well wishes! Happy Purim, Happy Easter.

Yeah We're Still Here

We are still in the hospital (sigh...). Sam is being fed through his stomach which is very good news. We are up to 22mls/hr. In order for us to get home he needs to be on at least 30. Hopefully we will be home on Sat./Sun. Sam is in much better spirits. We got him to laugh a bunch today. He has regressed physically quite a bit but we hope that when we get home and therapy starts again he should be back to his good ole self in no time.

Things have been taking so much time in the hospital because I feel that most professionals do not understand Sam's system. To be honest knowing what I know, reaching out to other families with similar situations, and continuously brainstorming with the doctors has helped us get to this point. Its interesting how little most people know about the body still. Anyway, I can't get into all the particulars but at the very least we are on a good upward path right now.

Now about that roommate situation... Our last roommate that actually left today was such an amazing family. Mom was a Hasidic women and the son who was admitted was
12. Very sweet and quiet boy. Mom however, was so strong, bright, and fascinating. She is a single mother of 10! Yeah, 10! I know, these women are amazing. She stayed at the hospital all day with her son, went home every night to cook and clean for Purim and to care for her other children, and is now having 40 people at her home tonight to celebrate Purim. This women smiles all of the time and she was so good with Sam. She sang to him, prayed over him and when they left she gave Sam a gift which is now his new favorite toy. She said something that really impressed me. She was talking about her husband that passed away 5 years ago (her youngest child at the time only 11 months)and she said that when her children would come to her grieving about the loss of their father she would say something like this... Some families don't have a car, some not a home, some not a father, this is all part of life and we have to deal with it the best way we can, some days we may feel pain more than others but we just have to get on with it. And the way she said this was so as a matter of fact,like with a shoulder shrug made. I actually laughed out loud and she did too. The best was watching her watch TV. Not sure if you peeps in cyber space know this but most ultra Orthodox/ Hasidim homes do not have televisions. So to watch this very religious women watch television was one of the funniest things I have ever seen. And I am sure all of you are thinking what the hell could this women possibly be watching. Guess... Jerry Springer and any court show (Judge Judy etc...). I swear... When I questioned why are you watching this. She said she just loves the courts. I not sure if she understood that what she was watching is staged or not. She was sooooo into this with her face literally pressed up against the screen, you would have thought that the Lubavitcher Rabbi arose out of the grave or something she was so enamoured. I told her it was a good thing she didn't have television at home or else she would never be able to take care of her household.

So how is my husband doing through all of this.... Hmmmm.... Well, for those of you that know Scott I am sure you can only imagine the havoc he is causing all of the nursing staff and doctors. The nurses actually ask me ahead of time who is spending the night me or my husband. When I tell them me they clap and give a little yeah... Scott actually threatened to push the hospital bed against the door of the room if they came in to check on the baby again. Scott does not like being woken up and he gets really nasty when he is. Ahhhh the trials and tribulations of being in the hospital... Well I am hopeful to be home soon. I just got a call from Scott saying that Sam just pooped on his own, which is HUGE news. Thus his system is finally working. Thank g-d. Thanks for checking in and writing words of encouragement. Peace to everyone...

PS Since our nice roommates left please continue to pray we come home this weekend and no crackhead roommates. Thanks :)

Hanging Tough...

We are still in the hospital :(. Sam is OK. He had the procedure to get his PIC line so he can be fed via IV. Sam seems to be in good spirits. Scott and I are keeping positive and happy as much as we can. Thank g-d we have a ton of support and help from family and friends. We have to wait and see what happens when Sam has another study to see the function of his upper GI tract. This will take place on Monday. Pray that the study goes well on Monday and that his stomach drains properly so that he can maintain nutrition through his G-tube and we can go home. In the meantime we are just keeping calm and hanging out in the hospital. Oh... Sam is off cootie patrol so we have to share our room now, booooooo... We had another family in our room for 2 nights. They were so nice and considerate so it was not bad at all. They left already and as of now we have the room to ourselves, but that can change any time now. So another prayer to ask the man upstairs if you don't mind... No crack head roommates please! Thanks.

The Good, The Bad, and the Not Too Great...

Sooooo... Sam has a stricture or blockage, if you will. Not the worst thing in the world, but it certainly doesn't make things easy.
The good things are that Sam is no longer in pain, we are in our own room, Sam is healing nicely from the surgery and we are pretty sure that his current issues are not a motility problem or a shut down in his system. The bad things are that Sam may have to go into surgery again or if the stricture is just due to trama than Sam will heal on his own but this will take some time. The not so good things are that we are stuck at the hospital, Sam has to surgically get a PIC line put into his arm to feed him intravenously, and of course will need some sort of anesthesia for this. We are expecting that this will happen tomorrow. Again please pray that Sam's stricture will resolve on its own and that we get to go home soon. Thanks for checking in.

OYE!

So we are still at the hospital... :( Sam is no longer in pain and he is healing quite well. The problem is that he is still unable to tolerate his feeds. Everytime we try and feed him into his stomach all contents come pouring out around the stoma. He really is unable to get any nutrition at all at this point. We started him on a new medication to get things moving a bit faster. Please keep fingers crossed that this works. By the way I have been unable to log into my e-mail for some stupid reason so if anyone has e-mailed me in the past week I haven't gotten the messages yet. I hope to talk to everyone soon... from home!

Update

Sam is still in a lot of pain. In terms of his general health he is doing well, but he is going to need a little longer to heal. He is not tolerating being fed through his new stomach tube yet, which will prolong his hospital stay. To be honest Scott and I are fine with staying a little longer than expected as Sam is not ready nor are we ready to take him home yet. Sam is getting really great care, his nurses have been wonderful, and we have a private room with an extra bed, not that anyone can really sleep... but its still helpful. I will try and contiue to post updates when I can. Thanks for checking in. :)

Pain, Pain, Go Away...

Sam's surgery went well. He is breathing on his own and is in a regular pediatric room. It is private for now as Sam still has a bacteria in his GI tract. This is complicating his healing course a little bit, but he should be fine. All of Sam's doctors are trying to give him the best course of treatment as possible. Sam's surgeon did a really great job as Sam was able to get his new tube placed in the same stoma as he had before. The worst part of this whole ordeal is that Sam is in a ton of pain. The docs are of course trying to keep him comfortable, but how comfortable can you get in a hospital with tubes and drains sticking out of your stomach. We should be home by Friday. Please continue to pray that everything goes smoothly and that Sam's pain subsides fast. Thanks so much.

Surgery

Today is Sam's surgery. I am extremely stressed as there have been a few more hiccups in our plans and only time will tell if we are actually going to do the surgery today or not. If everyone can please hold their calls to us until later tonight or tomorrow morning it would be greatly appreciated. Scott and I are under an enormous amount of pressure some appropriate some totally unnecessary. We appreciate every one's prayers, concerns and well wishes. There are computers with Internet access that I can use in the hospital so I will post another message either tonight or tomorrow morning to inform everyone of Sam's progress. Thank you all again for all of your prayers and good wishes.

Scott's Pen

Friday night and I am sitting at my computer tears running down my face searching for something on the Internet that can make things better (not porn), I need a more permanent wholesome fix for my son, wife and myself. Sometimes our situation hits me hard and fast and I just cry alone. Today my wife emailed me a listing of a beautiful home in Livingston, out of our price range given our circumstances. Desperation and fear consumes me. How am I going to keep going? What kind of life am I going to be able to provide my family? Can I give them everything they need and what exactly is that, health maybe, wealth maybe too?

32 years old in a few weeks and I feel old and tired. I used to wish for death but I don't any longer. I just wish for peace of mind, body and soul. Will it come???? Things have to get easier but tomorrow new challenges await. School, more therapy? FUCK. THIS SUCKS!!! No one should EVER have to think when looking at their son sleeping about surgery, breathing, walking, and talking. Please call me daddy. I should be looking at him thinking about all the good times we are going to have but the sad reality of it is that I don't know and not knowing is the scariest thing in the world. I know we all don’t know what tomorrow will bring but I do know that in a few hours from now, I will wake up hold my son and begin medication and therapy once again for another day.

My poor baby. What can he be thinking? I wish I could climb into his crib with him, hold him and tell him that everything will get better. WILL IT? This empty feeling is awful. His life is awful but am I right to say this. Sam does not know the difference. What kills me at times is when Carrie and I are eating lunch and he is lying on the floor looking at his. "What are mommy and daddy doing and why are they not with me". My heart breaks every day. I love you Sam and I love you Carrie. I promise to continue to fight for both of you every day and I will not rest until peace of mind, body and soul have been attained. Soon my love, soon.