HOME AGAIN !

Great News! Allison is home again! We brought her home Saturday afternoon. As soon as we put her up in her wheelchair to leave the hospital, she started squealing and giggling. She wore herself out in about 20 minutes and slept all the way home. Over the final 4-5 days that we were in the hospital, she had been really uncomfortable and every night at/around bedtime, she got really cranky and fussy. The first night home, she didnt complain at all and had a huge smile on her face as Amy put her in her own bed for the first time in 2 weeks. She was very relaxed and went right to sleep. She really acts like she missed being home and Keala is ecstatic that "sissy" is home again.
The doctors ended up deciding to not perform any surgery at this time in regards to the hernia that we still believe she has. The surgeon actually ended up telling us that he doesn't believe she has a hernia, but if she doesnt, then where did all the bleeding come from and what was on the xray from the ER that caused the docs there to tell us there was a hernia? Things that make you say hmmmmmmmmmmm. Also, after weeks of arguing back and forth with the surgeon, he FINALLY admitted that the Nissen was wrapped too tightly all along, and has caused her esophagus to stretch out from all the secretions pooling at the nissen site, and now resembles a chemistry beaker. To allow it to heal itself and hopefully shrink back down to normal, they have decided to try to keep her secretions from pooling at the bottom by constant suction of the secretions.
She has an NG tube placed in her nose that travels into her lower esophagus, and hooked up to contant low volume suction. The idea is that by not alllowing the secretions to pool, the esophagus "should" heal itself in approximately 6 weeks. She has also come home with a PICC line in case she gets any type of bug, they can start IV meds or antibiotics, or if they need to get any blood woork done etc... That means ANY fever and we go directly to the ER for blood cultures to make sure she doesnt have an infection. It also means weekly trips to the doc for dressing changes, since it needs to be done in a sterile environment. So, yet another 6 weeks of waiting and watching and, hopefully, nursing care and respite care. We have already had 1 scare, She had a low grade fever at home Sunday night, and Amy took her to the ER for the blood work. While they were waiting to be seen, Amy had the nurse check her temp and the fever was GONE ! So they came home, and will check in with our primary care doc first thing in the morning. Hopefully, this will not be an indicator of things to come.
More to come soon.

How do you break an esophagus?

For fear of another negative blog post (my form of venting and giving all of you a glimpse into the window of my family and soul) I will explain how it is that you can break an esophagus!

It starts with A doctor who is full of himself and is erring on the side of conservancy, telling us to wait it out, "her one way valve (nissen) that allows her to swallow things down and not throw up is swollen and it will subside". The purpose of a nissen is to avoid aspiration. All during this swelling Allison would try to swallow her saliva and it would just sit on top of that nissen, stackup and then she would gag and cough it up. After 12 WEEKS of waiting when typically it takes 6 weeks, he decided it was too tight instead of swollen. So now all of that pooling has caused her esophagus to stretch out to hold all the saliva...thus broken. Her esophagus won't push things down through the nissen which is now open.

So, again...we wait for a test to decide what to do next. It seems so complicated, intertwined, connected, vicious circle, and oh so exhausting!

Allison is in good spirits...we have walked in the sunshine, read books and have had frequent pop ins from hospital friends. She is however, missing watch Sesame Street with her Sissy, Sissy snuggles, sleeping in her own bed, and the food at home is better. I miss all of those too. Oh and my husband...he is never to be forgotten. He is the wind in my sails.

Amy
Oh did I say I think it is all the Doctor's fault

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