Exhustion Sets In

I don't think I realized how tired I was because I was running on adrenaline and there was always something we were waiting for at the hospital...the next visitor...phone call...assesment...mealtime...medication...staffing change...person that walked in the door...update to give...complaint to be lodged...decision to be made...etc. By our calculations we have suctioned her at least two dozen times and gotten about 16 oz. of fluid out of her today. She has been intermittently happy and dozed quite a bit.

Keala did decide that Mommy shouldn't hold Sissy any more while Daddy was sleeping and actually tried to pull her out my arms. There just isn't enough of me to go around. No really, Keala has been pretty great.

Allison didn't have the most restful night. Jeff said he got up with her 4 or 5 times suctioned her and rolled her over. I really hope this doesn't last for six weeks like last year, Jeff I both will end up having break downs. So far we are 2 and a half weeks post-op. I feel like we are kind of barely holding on in category of sleep, but maybe that's just because we just got home. The church is really taking care of us. Not only are they are praying for us, they are feeding us, loving us and I just had an offer for house cleaning. They are a real family. Sometimes I don't know what we would do with out them. We are really well loved.

Amy

Sent Home A.M.A

In the world of Fire/EMS, A.M.A normally stands for Against Medical Advice. In the Yates world today, It means Against Moms Advice. The doctors refused to take no for an answer from Amy and discharged us from the hospital today. Allison is still needing to be suctioned approximately every 30 minutes, is not up to normal on her feeds, and had a low grade fever last night and this morning. She is also still medically dehydrated. Yet we were discharged from a Childrens Hospital.

Things that make you go hmmmmmmmm.....

The good news.... We are HOME and Allison appears very pleased and happy to be here, showing us her newly toothless grin quite a bit. : } Keala is tickled pink that sissy and mommy are home. Also the insurance company has approved us for an in home nurse to be here while Jeff is at work for at least the first week. That will start on Monday. So for the weekend, it's up to us. They will be reviewing her progress and reassessing her after that first week and they may approve more if it is still necessary. Last year with this same surgery, it took 6 weeks for the swelling to go down enough that she didnt need suctioning. So we'll wait and see.

Will post more later today

Give the World a Raspberry

At the end of today it feel like all I have left in me is a raspberry "Phlllllllth". I woke an hour an a half after rounds usually happen to find Auntie Hannah with a Frappaciuno in hand and a smile on her face so the coffee and the extra hour and a half of sleep balanced out not getting to connect with the doctor. My concerns are focused on hydration now. Much of her fluids are coming out of her face in form of her secretions that are being suctioned because she is not able to swallow them to her tummy because of the surgery site swelling.

We did have BM success overnight now we need more pee! It's always got something to do with some sort of bodily fluid with us! My Mom always accused me of loving bathroom humor, now I can't get away from it.

We did get word today that the insurance will approve a week of home nursing care. Let me help you understand something, this swelling is most likely going to take 6 weeks to resolve. This colossal mistake was made by the Nurse Practitioner here who failed to have a conversation with me about what we went through last time before she wrote the letter of medical necessity to the insurance. Then, when I asked to speak to her about the issue--she literally passed the buck and ran out the door and would not speak to me.

All I have to say is this can be rectified and it damn well better be. And I will tell you why...We cannot and will not do this by our selves for 4 weeks. I'm talking about constant suctioning, medicating, turning her in bed, documenting ins and outs, comforting her, mother and fathering her, chasing Keala, taking her to the Dr, keeping up the house, go to work, hibernate enough to keep her from getting sick....I could keep ranting. We need nursing help until the suctioning needs have subsided. So, that is my fight tomorrow.

I plan to take God and prescription drugs to this fight!!! Pray for me.

Whirlwind Visit

Keala and Grammy Sue came to visit today... What a whirlwind!! :) Keala wouldn't let mommy put her down for the first 15 minutes they were here and then crawled right into bed with Allison and snuggled and kissed and patted her and talked to her. Later, when mommy took her out of the room for a bit to play with her in the play room, 2 or 3 times, right in the middle of a sentence, Keala would stop and say "yaya (thats what she calls herself) "yaya sissy!" and take off running down the hall back to Allisons room. She also noticed a couple other babies on the hall and wanted to go take care of them and snuggle them too. She's just sooo adorable! Amy really enjoyed seeing Sue also. What a nice treat. They were able to spend a couple hours and have dinner with Amy and then took off for home. Sue said Keala struggled a little bit with the leaving part and talked about mommy and sissy all the way home.

Allison is still having some struggles today. She had an xray yesterday that showed she has a a lot of poo to get rid of and is having a lot of troubles doing it. Feeds have been backed off again and Miralax introduced to try and get things movin. It's causing her quite a bit of discomfort. Dr Harrison seems to think that he wants to send her home before the weekend, but as it stands right now, Allison is still on IV fluids and IV meds and is still not getting full feeds and being suctioned on a very regular basis. All of that combined with the constipation says to us, NO WAY ! At the earliest, we're thinking sometime next week, and thats only if we get authorization from the insurance company for some nursing assistance at home. Thank you for all the calls and emails and Facebook posts. We have really appreciated them.

Thank you Lord for all our friends (old, new and newly re-aquainted)
Thank you for continued strength and perserverence.
Thank you for continued health (Amy, Jeff and Keala) and continued progress for Allison.
Thank you for all of your angels at Church on the Hill, without them we would be sinking fast.

Tough Day

Two teeth short and one G tube button added, lots of crying and lots of medications...that's how our day went. Oh yeah, and she was on food restriction for her sedation this afternoon while I had a hard time keeping food down.

Tonight the plan is to keep her comfortable. I'm guessing there is pain from needing to have a BM, having two teeth pulled, shoving in the Gtube, and just all around discomfort from all of the gagging and wretching.

Little Sissy and the best Grammy Sue in world are coming tomorrow and Auntie Hannah. Need that like nothing else. Would give up eating tomorrow to get them. One person missing though...Daddy.

Everyone's calls and emails are so nice. If you don't hve the number it is 503-418-5110. It can get busy in here but there can also be horrible periods of nothingness.

Right now I say a prayer for relief for Allison...she is crying so much...I would like the hand of healing and pain relief to come over her. I also say a prayer for all the wonderful friends in Christ we have. To all of you who have blessed us, THANK YOU. Thank God.
Amy

Movin up & Stayin the same

So they booted us out of the ICU today:) Good for them we weren't still there when I found out they put too small of a temporary tube in the G-tube site last night. What I mean is the temporary tube came out, so they replaced it with something else until the surgeons could aprove the permanent one being put back in. When they were discussing what to do they looked at me and clearly asked me what size she normally has and I firmly and assuredly anwered their question and they promptly out something in that was 2 sizes too small!! So, when the nurse attempted to place the permanent tube and it so apparently would not go in you can be sure I was not happy.

The result: Sedation in order to dilate the site to make it large enough to replace the permanent tube in hole that was large enough only hours ago thanks to...let me see...wax in someone's ears. Sedation always has risks, I can't go with her to hold her hand, and there will be residual pain in which she will need more ...which we are trying to get off of. BLAH BLAH BLAH.

The up side is she is getting some food and between suctionings she is talking and smiling. She went for a lap in her chair last night and got held by mom today.

The down side is there is no talk of time frame of release. The secretions and suctionings are relentless and I am TIRED. The smiles are keeping me smiling though.
Amy

Improving !

Amy has been with Allison at the hospital for the past couple days and without computer access in the PICU. She has been working really closely with the docs and nurses there keeping Allison on the right path. She has been resting relatively comfortably and was even making happy noises at Amy last night. The docs decided (after consulting with Amy) to start feeding Allison yesterday and so far there haven't been any negative reactions to that. We will continue to monitor her very closely over the next day or so and start escalating the amount she's getting. After that, we will start making decisions as to when to wean her off the IV fluids and IV pain meds and transition her to meds via g-tube. She has started coughing a lot more, which is good and bad. She's coughing and clearing the junk from her windpipe which is good, but in the process she's risking inhaling the fluids back into her lungs (very bad) and also the more she coughs, the more pain she's in due to the fact that her surgery site is very close to her diaphragm. If all continues as it has been, we will most likely be moved out of the PICU and up to the PACU on the 10th floor. Not sure when that will happen, but it's the next logical step.

Keala has been acting a little under the weather today and spiked a fever earlier this afternoon. We're gonna keep a real close eye on her the next day or so, hoping she doesn't get really sick too. Jeff is off Sunday which is pretty convenient, especially if Keala ends up getting sick. If she doesn't get sick, hopefully we'll be able to get Amy a break Sunday afternoon and let her come home for awhile. Jeff starts swing shift Monday and wont really be able to get back up to the hospital to get Amy a break until Friday night.

Rough night,Restful morning

Allison has been resting comfortably now for about 2 hours. We had a very unrestful night. She never seemed to be in very much pain, just really uncomfortable. Good news to begin the day, they are planning to take her off of the morphine that has been causing her to itch like mad. They are also going to start some fluids thru her gtube to get her tummy working again after over a week of nothing but meds and IV fluids.
Keala is really missing her sister and asks about her constantly. Every time she wakes up (from overnight or just nap time) it's "sissy still by-bye?" And throughout the day it's "wheres sissy?" . She talks to her on the phone every time we call. She got to come visit her in the ICU yesterday, albeit very, very briefly. She climbed right into the bed and snuggled and kissed her. In hindsight, it was easier to deal with Allisons surgeries and hospital stays when it was just the 3 of us. It's really us to have to keep our family splintered in 3-4 different places at a time. Anyway, good news today. We hope that positivity continues.

Back in the ICU

Here's a brief catch up on whats brought us to Doernbecher once again. Allison started having some difficulties a couple weeks ago and we were back and forth to the doctor trying to figure out what was causing the problem. She was bleeding from somewhere in her tummy again so they did a coupple xrays in the ER the week before Christmas and found another hernia in her upper bowel/diaphragm area. Same place as last year. Due to the snowstorm and the Holiday they really didnt have the staff at the hospital to take care of the problem right then and there. They originally sent us home and scheduled surgery for the 8th of Jan. Allison started to not tolerate feedings without extreme pain, so we started her on a calorie infusion IV at Mac Hospital and they transferred us up to Doernbecher on the 29th. Doernbecher was able to reschedule surgery for the 30th. And to make an even longer story short, here we are.

Allison's surgery has caused swelling in the Nissen site again and that is not allowing her saliva or any other secretions to enter her stomac. That causes them to back up into her esophogus and she risks coughing them up and inhaling them. So they put her back in the ICU to be watched continuously and suctioned every 15-30 minutes. She was also on moisturized oxygen that was supposedly helping her breathe easier. The problem was that she was fighting the nasal canula and the mask that was feeding it to her. We ended up taking the mask off for about 15-20 minutes and she was breathing easier without it on. So they have discontinued the oxygen for now and will conitinue to watch that. Amy has gone home for the night with Keala and will come back up tomorrow afternoon and Jeff will go home and nap for a couple hours and then go to work.

Please feel free to call or come visit, We'll be in ICU for another day or 2, then they will re open the 10th floor acute care wing and we'll most likely head there next. The phone number in the room (for now) is 503-346-0114. We arew in rm 14 on the 8th floor pediatric ICU.

Surgery Again!

5pm...resting...drugged...sewn up. Nasty hernia. Colon had to be pulled out of her chest. Hopefully a week stay in the hospital we would not be shocked at more. Always glad to have phone calls and visitors to break up the monotony. Going to the hospital is not like changing our underpants, it actually totally disrupts our lives. Keala hugs the phone at night when talking to her sissy and I cry watching it.