More Brianna Lynn Band Pics...

Here she definitely looks like her Aunt Carrie...


She really is such a cute baby and of course I'm not biased or anything...

My Baby Brother Had a Baby!!!

We welcome Brianna Band into this world. She was born 3-18-09 weighing 5 lbs 9 oz. Baby and mommy are doing well. Mazel Tov Adam and Carrie on your precious new baby girl!!! Uncle Scott is especially happy because today is his birthday as well. So happy birthday Uncle Scott and baby Brianna YAY!!!

Looking Good... Feeling Good...

Sam has barely opened his eyes in 3 days no exaggeration. That is what scared me and his doctors and was the icing on the cake of why we went back to the ER on Wed. He was still mushy today but definitely more alert with better respiration and saturation. Maybe about 15 minutes ago he sat up to play, he laughed, and smiled so I think it is safe to say he is getting better. I am keeping my fingers crossed that he stays on this upward swing with NO relapse! Thanks for all of your support, thoughts and prayers they work!!!

911

So yesterday I was a lot more calm then to be expected given Sam's situation. I was upset but calm and not feeling the need to throw my shoe at someone. So through tues. night into Wed. early morning I noticed Sam's demeanour was just not right and his breathing slowly but surely was becoming more labored even with his treatments. I called Sam's pulmonologist in the morning and he wanted us to come back to the ER for x-rays and bloods. In the past I promised myself that if Sam ever appeared to be in this kind of respiratory distress I was going to call 911 and not deal with driving him to the hospital. I highly suggest this for all parents regardless if your child has special needs or not. If your child seems to be in respiratory distress or is having a severe allergic reaction to something DO NOT take your child to the hospital in your car regardless of who else is with you. I had my mother and a nurse but did I really want to deal with Sam turning blue on me in my car or deal with stupid receptionists that want you to sign in before they can see you in triage...

So once we packed Sam up I calmly called 911 and explained that my child is stable at the moment because we have lots of equipment at home (02, suction, umboo(sp?) bag, etc...) but he is in respiratory distress and I do not want to take him to the hospital in my car without the ability to intubate if need be. So in NYC the fire department comes to the house first when there is a respiratory issue just because they are usually the closest. This is actually a cool thing. If you don't live in NYC you probably don't know this but, NYC fire fighters are HOT AS HELL! No exaggeration, I think its like a pre-requisite or something. There had to be like 12 fire fighters in my house yesterday morning. For a moment you forget what the present issue at hand is and think wow did g-d just send me a present... Anyway EMS came and we were on our way to the hospital. Pretty uneventful. We got there and Scott had left work to meet us there. He just couldn't stay at work given what had been going on with sam for the past 3 weeks. We were pretty lucky because Sam's pulmonologist was there, his pediatrician was there and they had the head of the pediatric department take care of Sam so you know they left no stone unturned and they worked hard and fast to figure out what was going on and give us a plan. For all of this I am grateful and we will have to see what happens today. To be cont...

Anybody Have a Gun...

Sam has pneumonia. We were in the ER all day. I will add the details later. We are back home for now unless he gets worse which in that case they will have to admit him for IV antibiotics. Please pray that Sam get better really soon and that we do not have to go to the hospital. On a lighter note my mom came in from Florida today hallelujah!!!! She spoils the hell out of me to the point of bringing me coffee and breakfast in bed. Yeah I'm rotten. I will post again soon with updates. Thanks for all the e-mails and support I really appreciate it!

Long but informative...

Sam is still sick... I understand that people don't get it nor do I expect people to get it but I'd like to try and explain if I can. Sam is severely hypotonic. This doesn't just mean that he's weak on the outside his muscles controlling his internal organs are weak as well. This is why he is so prone to respiratory illness. What does this mean... It means that some one else's cold that may just be a sniffle can turn into a full blown pneumonia for Sam. Why??? Because his lungs do not function normally at baseline and when he is over producing mucus when he is ill his lungs become even more compromised... Which means that he cannot expel mucus and breathe to the same capacity that typical functioning people do... which means that it takes him forever to get better because the longer bacteria is able to sit and grow in his lungs the more it multiplies and the worse he gets.

Now of course there are the antibiotics... A whole other issue... The docs cannot put Sam on typical antibiotics because his infections are way way too strong for them so he has to go on antibiotics that would knock anyone for a loop. Cipro... about one of the worst drugs for the rest of your system is what Sam is on at the moment. He's been on it for almost 2 weeks and he got sick again Sunday night on then again. His system is even more compromised because now because his entire GI tract is fucked up... He may have C.diff again which is a really nasty and painful bug that can kill someone like Sam and it takes FOREVER to get rid of it. I am actually pretty sure he has it at the moment as we spent most of the day in the ER yesterday getting a full work up. In the midst of the work up Sam's x-rays showed that his lungs look like crap still so he is on another strong and nasty antibiotic on top of the Cipro and if all of his cultures come back to say C.Diff he's going to be placed on yet another antibiotic, all of which make Sam weak and feel like complete garbage and unable to sleep and tolerate his feedings which then compromise his system even more which makes it almost impossible for him to get better. In addition to the C.Diff and being on all of these antibiotics which caused the C.diff make Sam have chronic diarrhea which in turn sets his poor tushy on fire which makes him even more uncomfortable and miserable. FUN!!!

I am not blaming this illness on anyone by any means. I am pretty sure that the reason why he got sick in the first place is because we got the go ahead to try experimenting with swallowing certain tastes because he has been well for so long and his swallowing seemed to be improving. So I think this all started with trace aspiration of tastes which of course compromised his immune system and set him up to catch anything and everything under the sun. When you aspirate even a small amount your airway begins to hypersecrete (is that even a word?)and Sam cannot handle it as I mentioned above he cannot expel the secretions like we can.

I am thankful that most of our friends and family understand and don't take it personally when we are adamant about hand washing and shoes off and of course being unable to go to most get togethers and what not. Even those that cannot fully understand at least respect our rules and decisions regarding Sam. So thank you.

As a side note the ER experience yesterday while tremendously exhausting was more pleasant than not. I came in there like a bat out of hell yelling and cursing at everyone and anyone in my way... I have just about had it at this point with everything going on with Sam and other crazy stupid things going on in my life. So when the stupid recepcionist told me I had to sign in and pointed to a place where there was no clip board to sign in on I got annoyed... I told her to just buzz me into triage anyway my baby has special needs is respiratorily compromised and has been retching and throwing mucus plugs all day and he needs to be attended to immediately. So the stupid cow says well you have to sign in so I said... ready for this one... so in my psycho yell I said open the fucking door you fuckwit your going to be responsible for killing my baby, he can turn blue at any moment asshole. I know I'm such a lady ;). Then the resident came running around and opened the door and of course at that point Sam started retching and choking and guess what??? Some other asshole tech in a condisending tone goes you have to leave the stoller in the waiting room. I just ignored him and pushed him out of my way as we were trying to get Sam suctioned and stable and onto a pulse O2 machine. Lucky for Sam the resident and nurse at hand were very dilligent and competent in taking Sam right away. They saw how crazed I was and could even have treated me with an attitude right back but they were pretty calm, caring and concerned and they did what they had to do immediately for Sam.

All tests and cultures were taken right away which is always helpful and most of the waiting was just seeing what some of the labs looked like before sending us home. However... they wanted a stool sample and since we had been unable to feed Sam for some time because he could not tolerate feeds I knew he was not going to poop on his own. We got into the ER at 11:30ish and literally sat around until 4 waiting for Sam to poop. I kept begging for them to just give him a suppository and they wouldn't. In the meantime Scott kept calling the ER docs to find out what was going on. I laughed and told them they were lucky he wasn't here because he is a thousand times worse than I am. They chuckled, I'm exhausted with preggo body aches and pains and starving and Sam is getting really agitated and starting to throw my nerves into tornado mode.

At 4:30 Scott showed up at the hospital and it was like the clouds opened up and the light shown through. He wanted to know why we weren't getting discharged yet and I told him we were waiting for Sam to poop and explained that he probably wouldn't and he would need a suppository yadda yadda yadda. Scott goes give me 30 seconds. He walks over to the resident calls her by her first name and says listen I understand your concern but my kid is not going to poop now unless you give him a suppository. She said she felt uncomfotable doing that blah blah blah so Scott said look eventually I am going to drive you so crazy that you're going to end up giving it to him anyway just to get rid of me so you might as well just do it now. With that in less than 2 minutes the suppository was given, Sam pooped, sample, taken, discharge summary written and signed and we were on our way home. Go Scooter!!! My knight in shinning armour. And yes we rent Scott out by the hour to anyone that requires a ball buster.

To Facebook or Not To Facebook...

Recently some of my anti facebook friends decided to take a ride on the wild side and join facebook. I know the culture shock of it all can be quite overwhelming to some. All of a sudden people you haven't seen or spoken to in 20 years can easily contact you and invite you to be your friend... To accept or ignore... That entirely is a whole other post.

So say you accept the friendships... now people can peak into your world and you can peak into theirs, you can contact people on a whim easily without digging up an e-mail address, you can make new business contacts with people you knew a long time ago but lost touch with, you can rekindle old friendships and so on and so forth. There is a lot of criticism about facebook but I really don't see the big deal. I generally ignore whomever I have no desire to reconnect with and the people who I have friended I feel good knowing that I can contact quickly. I generally ignore the mass invites for other stuff such as the "good karma" or "give hugs" blah, blah, blah... But to be honest facebook has helped us a lot. For example, an old friend from high school is in his family's pediatric home nursing business in NJ... Hello could that be any more convenient for us right now. Another friend I recently found out does home entertainment and surveillance installment... Could come in handy with the new house... Nanny cam anyone... Especially with the falling economy its nice to know you have access to so many "friends" to maybe reach out to for potential job opportunities. I also like that I get to keep in contact with my fam from Israel, friends in Florida, Scott's family, etc... I mean really who do I have time to call and send individual e-mails to. The day goes by so fast and your intentions are to call this one and that one but you get distracted and poof out of your head. However... when I log on to facebook and that person's face or name pop up on my home page I can say hey, oh yeah... I meant to call that one... let me send a quick hello and let them know I'm thinking of them. Easy peasy lemon squeezy... ANd there you have it my take on facebook. No big deal, no harm no foul...

Sick of Sick...

So Sam has been pretty ill the last week or so with bronchitis. He is on the mend but of course Scott and I caught a little of what Sam had/has... Just when you think things are getting better and Sam is more stable you get hit in the back of the head with a 2x4 and it HURTS!!! Sam for the most part has done pretty well this winter considering... His respiratory regimens have gotten more intense and because of this I can pretty much say for sure is the reason why Sam has stayed out of the hospital. We do 3 nebulizer treatments both morning and night. After the nebs Sam gets "The Vest", then he gets "the cough assist."
When Sam gets sick we have to do this regimen at least 4 times a day. I'm not complaining as it really helps keep him healthy for the most part and when he gets sick it helps him get better fast. So its either all this equipment or the hospital. I vote for the equipment. Most hospitals are usually filled with a bunch of dumb asses anyway.

Speaking of hospitals I was invited to be part of the family advisory board at one of the hospitals Sam visits frequently. I started attending meetings back in Sept. I like it and feel that I have a lot to contribute. I mostly like it because every few meetings the head of pediatrics attends and I get to bitch to him directly about the morons in the hospital. He happens to be one of the most amazing and humbled doctors I have ever spoken too. Actually most of Sam's doctors are not only great doctors but are just so nice and attentive as well. When I speak of the morons in the hospital I am mostly talking residents, ER nurses, techs, etc... Not all of them but most of them. Sam is lucky that Scott and I could be total assholes and just act like everyone works for us. I'm generally not like this when it comes to me but when it comes to Sam there is nothing I wouldn't do or say. For example... the last time we had to run to the ER it was packed. The nurse evaluated Sam in the triage then asked us to go back out into the waiting room until we were called. So in the nicest most polite voice I could possibly muster at that moment I said, "My son doesn't wait in a waiting room ever, he is severely respitorily compromised, needs constant suctioning, gets fed solely through a g-tube and can turn on us at any second... And if he destats and starts turning blue and is not immediately attended to I will hold you personally responsible. Oh and by the way we are always given the private room behind you because we need our own sink and television :)." And of course within 5 minutes we were in the private room. I don't know what my point is with this story... I don't know if I would have ever been this assertive if it weren't for Sam and Scott. Scott really taught me to be this way. I was always more of a people pleaser, which in some ways I still am. However, when it comes to Sam I am borderline psychotic and could care less about anything else.

Sam also lost one of his PE
Tubes. So next week we see the ENT and schedule a date to get them replaced. This requires Sam to be anesthetized and intubated which is never fun for me, but considering all that Sam has already been through this procedure is cake.