family picture

family picture
We "want our very serve as HIS signature to all mankind so that all may know His work," Job 37:7

Sunday, October 27, 2013

Scoliosis Repair day 3 and 4

Uuggghhhh! In case you every wonder a hospital is busier at night. I decided at 10 that I really needed to give "rest " a good college try.  I would start drifting off only to be aroused by someone coming in, Korinna uncomfortable, or by someone coming in, and someone coming in. 
Rin's pain manage plan was a lot better generally speaking but we were having trouble with her not wanting to take deep breaths and holding her breath. That in turn would send her oxamerter into a frenzy with her O2 saturation diving and her hear rate rising. With the help of a wonderful nursing staff we finally deduced that she has a soar side. Most kids who have this spinal fusion do. Usually the side they had to manipulate the most. Guess what side that is, Rin's right side. Guess what side she was crying in the PICU, the right side. Guess what side she was panting on? The right side! These little things that could have been so easily fixed if she could have just had the ability to say, "Mom, that side hurts more." makes me loco. Such a simple fix and yet for her she has to wait out the dodo bird parents until they can figure it out. 
We finally got a couple of hours of rest in somewhere between 3-5. Ethan came in to relieve me and I headed back to the hotel room. I really thought I would get a shower and take a nap but that didn't happen. I did get shower but then I ended upon the phone for a while. I cleaned up the room and got my things together and headed back over. 
I was mad when I got to the room and realized I had missed her doctor coming in and changing her dressing. The doctor had also given us some goals to reach. He wanted Korinna to sit in a chair, he wanted her to show us that her GI tract was moving. (Read betweens the line)  and then if she gets a fever we have to do chest therapy. 
She tolarAted the moving and sat in a chair for a long time. When I left to go home we were in high hopes that everyone would get some rest. I was wrong.
When I called back up to the hospital Sunday morning Ethan sounded exhausted. They had both had zero sleep. Korinna had cried all night long and was not resting. By the time I got to the room at 10:30 it was obvious Ethan was barely keeping his faculties due to the exhaustion and Korinna looked weepy and sad. I relieved Ethan and then settled in for a hard day. Lots of tears, lots of just being unhappy. At 5ish we saw the doctor again who reminded me that there is a phase of just extreme exhaustion and crankiness. Well, we are there! He was happy with all the progress especially from her GI "movement" and we started her back on foods. Yes, yes you are correct she hasn't eaten for real since midnight Thursday. 
She handled the feeding well and has rested soundly since then. I think we might have just turned a corner. I hope we have. I am ready to see her happy eyes and mischievous grin.

My set up. You can't see but there is a chocolate bar and sweet tea beside the chair.

Our view. This picture does not do it justice. We have a gorgeous view of Vulcan and the sun rises right over him. Spectacular though this morning it was lack luster due to the clouds.

My sweet patient. Her thoughts are, "just leave me alone and don't touch me. "

Friday, October 25, 2013

Scoliosis Repair Day 2

Waking up this morning I could barely move. I was still in the same position had fallen asleep in. So stiff but so rested. We had made the decision to have a room at the hotel next to the hospital. E had checked us in after we got to the PICU, gotten us dinner and returned to the PICU. I left him and headed to the hotel at 7 something and made a few phone calls took a bath and collapsed In the bed. It was still dark when I woke up the at 5:45. Even after over 8 hours of sleep I contemplated going back to sleep. I was all to aware though that E had not had the rest I had so I started getting dressed to head back to my baby girl.
When I walked out the door I grabbed my Starbuck's gift card. Last night when returning to the room E had left me a Starbucks gift card and note. 
-Back off ladies, I'm keeping him. - 
The cool air that greets me this morning seems more refreshing than yesterday. The walk was nice and the pumpkin spice latte was perfect for this mornings chill in the air. I walk into Rin's room with a very bleary eyed 11 year old and a sprawled out hubby who definitely didn't sleep well. The nurse brings me up to speed with the evenings activities. Rin had a low grade fever. Not uncommon but the sent off cultures to make sure. She has also started waking up more around 2. Those meds from the OR had if finally left her sweet body. This is good but that also means she is more aware of her pain and discomfort. I can tell just from her eyes and the way she glares at me she is already over this place. I relieve Ethan and give him his coffee. That room a short crosswalk away will welcome him soon and the he can rest (and do a little work )
I settle down to watch the sun rise over the Vulcan and wake up the city of Birmingham. 
The events from today were pretty low key. Rin was struggling with getting comfortable and as the morning melted away to the afternoon it was obvious we needed to up her pain management. She has started crying a little and when our nurse warned her they were going to roll her over to her other side she immediately started crying. We started her back on the Valium at that point and she seemed to settle down.
We wait again. I color and I am finally able to break Ethan down and get him to play Uno. We have orders for a room on a regular floor but a bed has not opened up for us yet. So we wait again.
I decided to return my pager from the OR just to have something to do. As I drop it on the counter I hear my name and see a familiar face. A  mom and friend from my daughters preschool class is here and waiting in her son who is in the OR.  We were so glad to see one another and we shared a sweet moment. We are both going to be on the same floor for recovery except they get to leave tomorrow and we won't. 
After returning to the room we were ready to transport to a regular room. Rin slept through the whole transport. After settling we were able to see her Dr. 
Everything is going as planned and then he reveals tomorrow's goals for her. He also gives us the consequences of any small complications. Tomorrow is going to be rough. It is time to start making her move a.k.a. Walk and sit up. It should be very hard for Rin tomorrow and I don't think any of us are looking forward to it. 
We have one last visitor from Ethan's cousin who works in the hospital. It was fun to see him. Dinner for us and then E heads to the hotel and I assume my shift on a functional but not comfortable couch in a room were disturbances are at least every hour. Less beeping, less emergency but that doesn't = more rest.

Thursday, October 24, 2013

Scoliosis Repair Surgery day

I was so confused when the alarmed sounded. Once regaining my wits I knew the count down was on. Korinna could not eat past midnight so we set our alarms to go off so that we could turn the pump for her overnight feed off. I head to her room where she is sleeping so peacefully and power down the pump, clamp, flush and remove the extension tube. I'll finish cleaning up when I wake up to get ready.
The second alarm doesn't bring confusion but immediately brings knots to my stomach. It is time and I don't want to do this. Getting dressed, last minute packing, getting Rin ready are all emotional for me. I don't want to do this. We head out the door into a very cool morning. We ride in silence most of trip. Rin sleeps peacefully. I don't know why but the darkness, cold and fog seem so appropriate this morning. There is a battle raging in my mind and constant rambling.
I don't want to leave her. Yet, it will be nice to see her sit up straight. I can't believe she will bare another scar all because of the fight with Rett Syndrome. I used to think scars on guys were cool and mysterious and macho. Now I am sad that the sweet skin that I have watched grow will now be marred again. Stupid Rett Syndrome. She has the best surgeon. He is known for his ability in the OR. They better take care of her. I wish I could be with her. I wish could do this for her. I'm glad I brought extra socks. I think that these shoes might get old after 12 hours. 
We pull into the parking deck and my stomach is crazy. I'm disgusted at myself when I go to put on lipstick. I'm about to send part of my heart into surgery and I stop for lipstick. E already has her in her chair strapped in and walking off. He is moving faster than me. That is unusual he is a slow and steady wins the race kinda guy. I have got to pull it together. Entering the hospital creates in me a huge sigh. Melancholy. 
For 5:30 am the waiting room is packed with families and their little ones. Registration is quick and they warned me that it would be. We were told Spinal surgeries are first.  Rin sleeps peacefully. 
Back in triage we do vitals, answer a ton of questions, ask a ton of questions and meet with all of the people that will be her team in the OR. It starts, my eyes keep leaking. Hearing my husband pray over her brings peace. My partner, my friend speaks words of truth as he lifts up our sweet daughter to the great Physician. I can do this. I will live in His strength not my own. 
I  am thankful she wakes up enough to smile for us and reassure us that she is ok. She was scared last night when I prayed with her. 
As we walk her down the the hallway to the OR I am scrambling to control something, anything. I become obsessed with the blanket we brought with us. "Should I take the blanket we brought? Can it go back with her? I'm just worried about her being cold." I know that the lady thought I was crazy. She comforts me by offering to bring it out to me. Then it was time to say our goodbye's. I didn't even know if I could make an audible sound. With all the strength I could muster and with a shaky voice I squeek out "I love you" and kiss her on the cheek. E's voice never waivers " I love you princess". 
Now we wait.
1 hour later we receive our first update. She has been put to sleep, central line placed, intubated and positioned properly for the surgery. The nurse says it is all like the doctor wants it. She will call back in an hour.
2hours in and we get another
 update. All is well. And now we wait again.
I paint my nails. I color in my coloring book (don't judge me) and I beg E, to no avail, to play Uno. More waiting.
3 hours: we receive another update.  All instruments are in place. (A.k.a. Metal roads and screws) they will be another hour or hour and a half. Now we have E's parents here and Colby and Kathryn. We talk and I enlighten the Colby and Kathryn on old circa 1970 Saturday Night Live episodes. We have checked on the kids and they are all surviving. We wait.
By this point we are the only family still here from this morning. I have seen four different waves of patients coming in for surgery. We are all the same. They call out your last name from a door. And the parents are pointed to a phone on the wall to receive your update. Your lifeline to your child. 
 I get up and instead of pointing to a ringing phone we are told to go the conference room and the doctor will come see there. 
It is over! Yahoo! After seeing the surgeon we are confirmed that this was the right decision for us. Waiting would have been very bad and a lot more complicating. We can see her in 3 hours.
For the first time all day I can finally take a deep breath. So thankful and ready to move to the next step. E's parents leave and we eventually go grab something to eat. 
I can't tell you how beautiful that sounds. The lady behind the desk has a big booming voice that reminds me of my highschool cheerleading coach whose voice projecting was so loud and so strong it could penetrated concrete blocks and the lengths of basketball courts. No one could every say they didn't hear her and this lady is no different. 
I grab my bag and then yell behind me to grab the other stuff but then I get so excited knowing that I am seconds away from seeing her. I drop my purse in the floor and blurting out that Colby will have to get it. E never rushes. I see through the door is her bed and she is there peeking out from underneath a blanket. Her eyes are swollen her lips are so full from being intubated. Again the tears start streaming down my cheeks. E finally appears and we start the transport to the PICU. I am asked to leave her but this is so temporary. Only minutes till we can be reunited. 
Doctors, nurses, scrubs, monitors beeping, Rin sleeping, long coats, short coats, paperwork, orders, talking, mommy relaxing just a tad, tons of wires, IV lines, dried blood, trying to make her move, fielding developmental questions, alarms, draining tubes, trying to get her to wake up for just a seconds, stitches, rolling over on a schedule and general sensory overload. This is our home for the next 24 hours. 
 Thank you for all of the text and messages. We haven't been able to answer them all but we have read them. 
I am blogging on my phone so I have no idea how this will look when posted or how many typos, punctuation issues are here. Plus I have been up since 3 so grace and mercy would be appreciated.