LOSING

Let me think of all the things I things I/we seem to be losing or losing at:

1. the battle
2. sanity
3. sleep
4. weight (Allison's and Mine)
5. time
6. a precious childhood
7. friends
8. family
9. dry eyes
10. my mind

I/we also seem to be gaining

1. weight
2. friends
3. adopted family
4. prescriptions
5. health issues
6. bags (under our eyes)
7. worries
8. messy house
9. Dr bills
10. teary eyes

Let me explain something about how we feel about the damn frequency of all of this to everyone. We don't get used to this!! We just pick up our shit and deal with it because we love our kids and each other. It does some times feel that our friends and family become more numb each time there is a health incident because they feel that we/they have been there done that. Well, it is complicated and with a different set of circumstances each time. Each time Allison goes through stuff it gets more complicated and risky for her and we have to search for better/long term solutions. We also have to face that each time she gets sick she gets closer and closer to medically fragile.

The stress is taking a toll on both Jeff and I and as Keala gets older and smarter (the latter of which seems to happen faster than we can keep up) she is more affected. She doesn't like that sissy is in the 'owie house'. She is worried who will be with her when she wakes up. Jeff's vacation ends on Tuesday Keala will get stuck with a whoever, wherever 'substitute parent'. What part of that is hard? That Keala has to have a substitute, but for Allison there is no substitute.

Tomorrow, more tests...Mom and Dad trade...Keala goes somewhere to play (joyfully I hope). One of will post the results as soon as possible.

Love,

Amy

frustration

Things that make you say... GGGRRRRR
First of all, Allison is doing really well this afternoon and appears to be feeling really good. Today, however, was really frustrating from a couple of different perspectives. #1 in our conversations with the surgeon on Tuesday, he left us with the impression that he was going to take care of quite a few procedures today (5 to be exact) and that we would be presented with quite a bit of information about her hernia and what steps we would need to take to correct/repair that and also about her ability to swallow and process her secretions. That did not take place. Instead, they only took care of 2 procedures and were not able to give us any info about the hernia at all. #2 we were told that the other procedures would not take place until Monday. That means 3 days of just sitting around waiting for answers to questions that we feel we could have and should have gotten today. For Allison, it's not a really huge deal cause she's pretty happy wherever she's at and probably feels great about all the attention she gets here, but from a family perspective, it just leaves us fractured for that much longer. She will most likely be here through the end of NEXT week, if not even longer. Amy has left to go home and spend time with Keala and also to go to an appointment with her cardiologist tomorrow. We are praying for a positive outcome from that visit, though we arent sure what to really expect. She has been having quite a bit of irregular activity lately and we're pretty concerned about it. She will most likely stay home for the next couple of days and then come back up sometime Sunday to switch places again. Jeff would love to have phone calls and/or visits over the next couple days. It would definitely help break up the monotony of the hospital schedule. The phone # in the room is 503-418-5124 and we are on the 10th floor. 10N rm 23.
Along with prayers for Allison and Amy, we'd like to extend this out to another family up here. The Tromblas, Derek (a YCSO Deputy) and his wife Danita, have been up here for 14 days now with their 3 yo son Kaiden (think I spelled that right). He had a real bad pnuemonia that collapsed his lung and they have had a very difficult run of it including multiple surgeries to keep the fluid build up from pressing on his heart. Please include their family in your prayers as well.

Where do I begin?

Well...we have moved to the 10th floor, what we like to call our home here at OHSU. Most of the nurses know Allison's care needs well and me by first name. One of the night nurses is a man and is considered Allison's "boyfriend"...LOL. He totally flirts with her, it is so cute :) *SIGH* It allows me to breathe and sleep some. On the other hand, there isn't a doctor on hand on the floor at all times like in the ICU. We get only "childlike" residents. In fact, the two that came in today to answer my questions about her procedure tomorrow are brand new to the surgeons service TODAY. They came in thinking they were going to teach me something HAHAHAHA...ding dongs. I taught them something and I believe her beet red face was from utter embarassment. I am an educated woman and caring mother, don't mess with me...just help me help Allison.

So, tomorrow just some epxploration so that we can figure out how to help her.
I will post tomorrow...love to all who love us, Amy

here we go again

Real quick (because I need to go to bed) Sunday morning Allison went into respriratory distress and I took her WVMC. With an xray we could see hazy lungs and that shehad labored to breathe hard enough to suck her stomach up through her previously repaired diapragmatic hernia. I shortly thereafter found a blood in her stomach. They transferred her by ambulance to ICU at Doernbecher where they pumped her full of antibiotics, took blood and other fluids to do cultures and tests to rule out any other respiratory bugs...we are still waiting for all the results. I still say aspiration pneumonia because after 24 hours of some major antibiotics she is off oxygen and her vitals are stable. She is however still bleeding and going to get a more permanent IV call a PIC line. On Thursday the 2nd she will have an exploratory procedure to find out what's happening inside with the esophogus, hernia, stomach, bleeding and diaphragm...we will then make decisions from there. We are also left with coming up with a long term solution for better managing her airway so this doesn't happen again or continually reoccur. We don't know that answer yet.

Time flies

Wow, has it been 2 weeks since we last posted already? It boggles the mind. In some ways it seems like yesterday, and in other it seems like 3 months ago.
Good news and some bad to report this time around. Good news first.
#1. We have nurses for another 2 weeks! The Dr's got together and all wrote letters of recommendation to the insurance company that we, as a family, needed nursing care for Allison. That will last thru the first week of Jeff's vacation. Praise the Lord! #2. The Developmental Disabilites director for Yamhill County came to the house a couple weeks ago and talked to us at length about Allison and our family and has made a recommendation that we receive 25 hours a week of respite care. Starting after the nursing care runs out and going for at least 2, if not 3, months. He also discussed with us the possibility of getting some other forms of assistance as well. The respite care is just the start of what may be available.
#3. Amy has a weekend planned that will get her out of the house and away from it all for 3 days. She is going to Washington to see some family and an old dear friend from school. Hopefully she'll return from that well rested and recharged.
#4. Jeff has almost 3 weeks off work starting the 21st of March thru the 7th of April. Sleep, sleep and more sleep. Hopefully that, along with a couple nights out with friends, and maybe a 2-3 might stay somewhere with Amy, will get him recharged and equipped to handle the next couple months. Another week vacation coming up in June will help also.
Now for some of the bad news.
Allison had a regularly schedule EEG this week at her neurologists office to check her brain output for seizure activity and give us an indication of what the next step will be medication-wise. It couldn't have come at a better time because she has been having even more difficulty sleeping over the last couple of months. She's not been able to really nap at all during the day and not sleeping more that a couple hours at a time throughout the night. The result? She is having nearly constant epileptical type seizure activity. And not only is it constantly happening, it has increased exponentially since the last EEG. The seizure activity is causing her to wake up in the middle of the night and not allowing her to go back to sleep. So the immediate reaction to that is HOLY CRAP! The thought is that she has built up a tolerance to the anti seizure medication that she has been on for almost 2 years now and needs to be changed to a different med. So that is already in the works. We have to slowly wean her off one med while gradually increasing the dose on the new med while hopefully counter balancing each other in the process. On top of that there are new side effects for us to be watching out for. Those side effects include (of all things) sleeplesness! GREAT! But hopefully she wont experience any of the side effects and it will help diminish the seizures.
Secondly, Allison was back in the ER over the last couple weeks, with pneumonia again. They also think she's fighting RSV also. The Dr's put her on a couple different antibiotics and she seems to be feeling better. Keala spent a couple days with runny nose, cough and fever, the Jeff got it. His forced him to call in sick one day because he completely lost his voice. Kinda hard to work as a 911 dispatcher without a voice. He sounded pretty horrible the next couple days but made it to work anyway.
Amy is beat, drained, exhausted and pretty much ready for a significant break. We really hope her days away will help. 1 more week!
Keep Allison (and our family) in your prayers. I already know you do, but we believe every little bit helps.

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.

Home

We've had Allison home now since Thursday night and things seem to be steadily improving. She is really enjoying being in her own bed at night (so is Amy). She has had a few periods of time where she seems to be in a fair amount of pain but we are not able to pin down the cause. Aunt Louanne is definite blessing! She has been a huge help with Keala and also helping us keep ahead of the housework. Another body and another pair of hands and legs to keep Keala occupied would have been enough in itself, but she is also very willing to help with the housework which is an additional bonus. The nurses will be here thru the 8th which ironically enough is the same day Louanne is scheduled to fly out. With the Allison is progressing, that should work out really well.
Prayers for continued improvement and restful sleep for all.

sorry I haven't purged lately

So, It's Wednesday night and we have been here 4 times since right before Christmas, 5 days this time, on only one floor this time (not including the Emergency Room), had 2 attending doctors, been consulted by 3 teams of doctors, been taken care of by 4 great nurses, 1 bad nurse, 1 that likes to fight with the doctors (he's the best one yet), and he is officially Allison's boyfriend :)

I was cranky the first couple of days...tired of playing the hospital game. I had to resolve in my own head and heart that some questions aren't answered...sometimes I win and sometimes I don't. All that really matters is that Allison comes first and I don't necessarily care about their game they make play. That would be the sit and wait, talk to them and then them, and then wait some more. You have to learn their language in order to play their game. I swear there should be a PND (Parent's Nursing Degree...I'm half-way there). I'm a good MOM and a smart one too!!!

Tomorrow...we should be reaching our goal of being at her normal feed rate for 24 hours and tolerating it. So no hiccups, problems, or complications till then means we go home tomorrow evening. Bottom line is...who knows where the bleeding in her stomach came from but it stopped. I have a theory and I think that all the gagging from the secretions contributed to it. I'm probably right, my instincts are usually right...the doctors thought it was a good theory. We are trying not to force the suctioning so much.

I am hoping now that she tolerates her feeds and we will go home to a couple more weeks of nursing care and Auntie Louanne, Daddy, Yaya and our own beds :)

I am feeling good about going home even though we don't necessarily have answers because if we have to come back we have support to do that and we have the nurse. I hope we have visitors soon after we come home!

Amy