This has been an incredibly exhausting few days. Isaiah still does not feel well. I took him to the drs. today and his white count was up indicating some kind of infection so he was started on antibiotics which is for the best. I am worried Avery my catch it and not fair as well as Isaiah did.

So a rundown of my day today.................................

Up literally every hr. with Avery with no nursing. So I wake up sooo crabby. Avery is up and get meds and vomits them up. Ugh. I now have to take Isaiah to the drs. b/c it is day 8 and he is still not better. Go in at 10am to the drs. with is a complete fiasco. Isaiah is SUCH a crazy boy. He has some uncontrolled movements and some quite controlled ones. He kicked the dr. in the face (that being uncontrolled), kicked the lab guy in the cahoonas (quite controlled). Then the chest x-ray seemed like something out of the three stooges. So crazy. I was just cracking up. The kid does not stay still at all and it took three people to get chest x-rays in his stroller. We finally got them but I really wish I had a camera, too funny.

Anyway, but the end of the drs. visit I was exhausted. Drop Isaiah back home and off to work in Boston. Call supply company, nurses and drs on the way into to work which is very typical and why my cellphone bill is unbelievable. See 12 patients at work and am TOTALLY wiped by this point. Then heading home I hit the typical traffic for which I am never in b/c I am usually home well before rush hr. So I am VERY frustrated sitting in traffic for over 1.5 hrs. Get home and Avery had a miserable day b/c of his feeds but is in bed by the time I get home.

Luckily for my glass of wine I tell ya. Oh yeah, Janessa was asking for her friends in the neighborhood to sleepover tonight. ARE YA KIDDING ME!!!!!!!

So my wish for tonight is that AVERY SLEEPS.........Please pray for some sleepy vibes. I feel like I am going to lose it if I don't get some sleep. Especially b/c I have a killer work schedule for tomorrow. I just don't know how long I can keep all this up for. I am surely NOT superwoman.

Hey All

We are home and oh so grateful to have lights and heat. We are one of the very few neighborhoods around to have power. Thursday evening there was a pretty bad ice storm and damage to many homes. We were sooo lucky to have snuck under the radar. Otherwise Avery and I would still be in the hospital. I have no idea what we would have done with Isaiah and Janessa. I am praying for all the families that are without power.

Poor Isaiah has been pretty sick all week. He has a pretty bad cold and I am worried it will turn into a pneumonia. I have never seen him sick like this, it makes me nervous but he is such a trooper. I will be bringing him to the drs. in the morning. I am a bit paranoid about Avery catching it as well.

Okay this whole TPN stuff is soooo overwhelming. Mainly because he has c-diff again and c-diff and a port accessed (meaning the IV to his heart is exposed) is a VERY bad mix. He usually wakes up in the morning covered in poop, so this is VERY nervewrecking. I am so scared that he will get a line infection b/c of the poop. Also I am overwhelmed by all the calories we need to get into him. It is not realistic at all and he just will not tolerate all this feed. I just cannot believe that such a little guy requires THAT much food.

I swear I didn't sign on for all this. I just feel like I am drowning this week. I am sure things will stabilize but for right now, they are overwhelming. Also I am stressed b/c I missed a week of work and have so much catching up to do.

The goal is to get Mr. Avery tolerating his tube feeds so we can get him off the TPN b/c the risk of infection is too high for my liking. Hope everyone is well and thanks for reading.

Oh I will have to post pictures tomorrow of the tree Janessa picked out. Let's just say it is just as big as I am and we all know he big I am not!!!!!

update by Sis Sherri,
Hello all, spoke with Nikki and it has been a very uneventful week for once, They checked in on Monday and had a room within a Half hour ( this has never happened before) They were welcomed by the staff at the hospital as they all know Avery so well. Nikki questioned whether to do the TPN or not however Avery had lost almost 3 pounds in a few week time span, So this was pretty concerning for the Doctors. He started his TPN on Tuesday. The problem is since he has a metabolic disorder, he needs a very high fat concentration of TPN in order to get the caloris he needs. This means that he will have to be on TPN for 20 hours instead of the 12 hours that Nikki was hoping for. But the Doctors gave them the option of going 16 hours on TPN, but that would mean that he would need to be on 12 hours of his feeding tube in addition to the 16 hours of TPN. Yes this is very confusing as I am very confused writing this. WHat this boils down to is that Avery needs a whole lot of food to gain any weight. If all goes well they will be home on friday with a bunch of new equipment to add to the collection. On a funny note, they now have to figure out how to stop Isaiah from eating Avery's new longer cord LOL

Crazy me took Janessa to the American Girl store which was something else. The mall was mobbed but luckily you just had to go through one store and outside to get to it. This store is two floors of dolls stuff, including a hair salon and a bistro. Unbelieveable. So much for the economy not doing well. Of course Miss Janessa made out like flynn. Must be the guilt of me going to the hospital this week. Happens all the time.

Went out with the girls last night and had a bawl. So glad I have you ladies to keep me laughing and keeping things real.

Just as I was thinking Avery was doing really well over the last couple of days and almost second guessing the TPN, Yup. You know the other shoe dropped. He woke up this morning vomitting unbelieveably and aspirated. This I am thinking is that since he was doing well the last couple of days we bumped him back to full feeds. So once he got his meds this morning it set his gut over the edge. He had a low grade fever tonight but was in a good mood cooing all day. So it is best we are going in tomorrow. Sounds like he will need a chest x-ray and bloodwork. Also sounds like a break from his feeds is a good idea.

Will keep you all posted as how the week is going. Thanks for reading

Change in plans

Avery is actually going to be admitted on Monday instead. I am bummed b/c I would have been home by tues. and would only have missed 2 days of work but no I will just about miss the full week. Oh well, what can you do. Plus drs. don't like to work the weekend. So I will take this weekend and hang out with Janessa and Isaiah.

Janessa and I are going to the new American Girl store. She is pretty excited. Not sure I am too excited about the crowds at the mall but am interested in what this store is all about.

Will keep you all posted this week. Thanks for thinking of us.

18 yrs ago today

I stole Rick from his high school girlfriend. I know I am a bad girl, what can I say. We were just meant to be from the begining. Although Rick did have a crush on me first and told one of his best friends he would marry me someday,that was before I stole him from his girlfriend.....

I can't believe I have been with him longer than I was at home with my mom. Time just flies by. We have basically grown up together. Learned so much over the years. Through it all, our relationship has matured to the point that we are still happily married and raising three kids. All the trials and tribulations we have been through were just all a lesson for both of us. I am so proud at the couple we have become. Just wanted to say how much I love you babe. Even though you kinda forgot today. I forgive you. Crazy thing is I am the one who usually forgets.

How do you like the picture of us??? Hehehehe. Rick with hair and what is up with my hair and the lovely outfit. LOL!!!!!!

Avery will be admitted on Sat.

The GI dr. thinks I am a lune I am sure as I have been calling his secretary bugging her about when they plan to get this ball rolling. We had the team meeting over 2 weeks ago and Avery's feeds have been cut to provide comfort for him. We all know how fast he goes downhill. So needless to say, it makes me nervous to wait another week. He sounded a bit put off b/c I wanted in this week and he is going out of town. Personally, he doesn't have a clue on what to do with Avery and who he is so I really could care less if he is there for the admission.

For me, I just want to get Avery to the point that he has at least 4 good days a week instead of 1-2. This is big for us. SO if the TPN can do this for him then sign us up. It will be a 3 day stay b/c they have to regulate his blood sugars and such. Hopefully there are no complications. I am not nervous about the admission just eager.

Will keep you all posted!!!!