Still having issues...

Hey all,

Its now 8 weeks post operation and the 6 week window that we were originally given by the surgical staff has long since passed. They told us that her swelling should be decreased enough by 6 weeks post-op that we would no longer need to suction her and she should be back to "normal" from a surgical standpoint. That did not happen. Here we are now 2 weeks later and we still have nurses at the house, still having to suction her every hour and a half or so and still having some pretty severe digestive issues on top of it. We really dont want to entertain the thought of another surgical procedure to "figure out the problem", but that seems to be looming on the horizon. We will be scheduling some tests this coming week that will hopefully give us enough answers that we'll be able to avoid that. Allison simply does not recover well from surgery, Sadly, we are very well aware of that fact.
This whole situation has really taken it's toll on us as a family. Alot of our plans that we had for Keala's development have been simply dropped by the wayside. Neither one of us seems to have the energy and patience required to successfully deal with a little one that is so smart and full of boundless energy. We are having real difficulties being able to keep our frustration, fear and anger hidden away. There is a filter that great parents have that allows them to keep those emotions tucked away. Sadly, ours really isnt working very well. We are amazed by her all the time, but she is so desperate for our attention that she is already acting out and doing things that she knows are wrong, just to get our attention away from Allison for a minute. We have battled to retain our ability to tag team as parents, but sleep deprivation is a killer. Amy is not sleeping well, and is exhausted all the time. She was also starting to have some heart issues pop up because of the amount of coffee she was drinking (and the chocolate she was eating). The docs told her to cut down on those and that has made her even more tired. Jeff hasn't really slept well since Allison was born. Not an exagerration, simple fact. The fact that Allison does not sleep through the night has been a constant since she started havindg seizures at 9 months old(normally the age when little ones start to sleep through the night). So, long story short, sleep deprivation is wreaking havoc on our family. We appear so strong to people, we get those comments all the time, but it is really just survival. As Pastor Kerri told us a few weeks ago, theres a real need for us to be able to flourish as a family and not just survive. When you get to a point that the light at the end of the tunnel starts resembling the glow of an unattended campfire at 5am rather than the blaze of a bonfire, you know it's time to start digging a little bit deeper.
Our question is, How much do we have left? I fear we're dragging the bottom of the barrel.

I'm banging my head against the wall!!!

So after the second visit to the Dr's office today and running into him at the grocery store, where I might add he was more than willing to walk me to my car and have a clinical conversation with me...oh and the third day in his office this week!!! I feel like I am staring at a brick wall. Allison is still having low grade fevers, which have been persistent since before we left the hospital post-operative. She is still having bouts of unexplained crying. Also, some her blood work is 'funny'. She is still being suctioned WAY TOO MUCH for this far out from surgery and the damn surgeon wants us to give a 'couple more weeks'. I'd like him to 'couple more weeks' it at my house. He also made an asinine medication suggestion like he's talking to a rookie mom. This medication is to aid in the speed of digestion. She is not having a problem with that...she just can't swallow you idiot...or poop. Oh yeah she's constipated really bad. I have been working on her from both ends. And to top it off she was crying in the office today and the pediatrician could finally see what kind of crying it was 'whew' and he thinks it's something GI related which could be something totally new and different and above and beyond the current pneumonia she is recovering from. AAAAAAAAA Can you hear me screaming?

And those are only the health problems with her. The anxiety is bad with me, so I take pills, they make me sleepy, so I drink coffee, I then have palpitations and arrhythmia's, less coffee, more headaches, less motivated, dirtier house, more anxiety...see the circle here? I'm not convinced that less coffee is really the total answer I can only describe that I don't feel well and sometimes strange.

Poor Keala feels so cooped up. The purpose of that is to keep out the germs and since we are all taking turns being sick I'm afraid Mommy is not very much fun and kind of cooped up and cranky too. I want so much for this to be over I can taste it. And I hope Jeff doesn't read this, because him knowing how I am really doing and feeling is source of stress.

What I dream of is that he could stay home more and that the phrase "I NEED my Mommy, I NEED my Daddy", wasn't said so often. I also wish not everyone in the doctor's office knew us by face and name (although that can work in our favor sometimes). The other thing I wish for is my Mommy. :(

Back to Reality

Hey all...
Not quite sure how the get this one started but I think I'll start with the good news.
First, Jeff's aunt Louanne flew in from Phoenix (Sun City) and was here for 2 weeks to help us with Keala and to help keep our sanity. It worked !! Keala LOVED her auntie and spent quite a bit of time with her. They became fast friends. Second, The nurses have been wonderful with Allison and have helped in the sanity department also. Third, MOPS has done a wonderful thing with their dinner outreach program. It made things so much easier for Amy and Louanne. Thank you, Thank you, Thank you!

Ok, now to the other news. Allison has really not been feeling well the last week or so and we were forced to take her to Mac ER on Saturday because she had been pretty much inconsolable for almost 2 days. We were really concerned that there was a problem with her hernia site, but as it turns out, she's just really backed up on the bottom end of things, and has a pretty bad case of pneumonia in her left lung. Not really good, but definitely not worst case scenario! So, she's had 2 doses of IV antibiotics for the pneumonia and will get another one at the Dr's office tomorrow, and we've taken the necessary steps to alleviate the bottom end issue (no specifics required!) Second, Louanne's time with us has ended. :{ She flew out this morning, run ragged, tore down, beat up and with a pretty bad cold thanks to chasing our little typhoon (Keala, who has been fighting off croup for the past 2 weeks). We also sent her home with a boatload of gratitude, many thanks and a whole lot of love! Third, the nursing help we've had also runs out today. Kind of a wake up call that we get to come back to reality.

For those of you that we've talked to (and also those we haven't) who want to help but don't really know what to, call and talk to Amy over the next week or so, especially after 3pm. Just giving her an adult to talk to when Jeff's not home is a pretty big help. And if she's at a point where she needs something specific, she'll be able to let you know then also.

Thanks again for all the good thoughts and prayers.