Saturday, April 30, 2011
I am sleeping at the hotel now. They are taking care of the bill. It is ok. It is a bit further from you.. but this morning I timed it. took 5 min to get to the lobby and wait for security to bring me to the front of the hospital and another 5 min to get upstairs and to you. I have even started leaving around 7pm during shift change to go and try to sleep. I get up at 5 and get ready to see you before the next shift change.
Every day is the same. I spend most of my time holding your hand when I am in the room. When you start to wake just a bit, I try to calm you. We thing you are confused and scared. You fling your arms around and your blood pressure goes up. Then the nurses end up giving you more meds. One day they told me you nodded when they asked if you were in pain. You look so uncomfortable with that tube.
Last time for the first time you acknowledged me in the room. I was talking to you and I said.. "honey, squeeze my hand if you hear me. After saying this twice you squeezed. I was so thrilled I said .. you can hear me?? and you squeezed again. I had to go as the shift change was happening. so I told you that I would be going to the hotel to sleep and be back in the morning. You nodded your head.. twice. I didn't want to leave you at that point. It gave me hope. I miss you.
Pastor Jason and Paula came to see me last Friday. We sat and talked about you. They got me laughing and smiling and they prayed for you. They shared some great stories I can't wait to tell you about. On Sunday, Mike brought mom, dad and Anna. I shared with you already a bit of that day. Paula and Melodye came on Wednesday. Mel pulled out a dice game I think you would love. It was so simple. and comes in a tin. On Wednesday Steph took me to Walmart and I bought a few shirts and some stuff for the hotel. You would be proud of me.. they were not all simple tees. That has been it for company.. Steph has a hard time coming often. Abraham says he and Mariah will come tomorrow, (Sunday.)
The docs have been talking about putting a trache in your throat. The tube that goes down your mouth is very uncomfortable and only meant for short term. They told me the benefits and one is that you may be able to be awake. Although I was warned you may be delirious for a day or two. The tube that you have now can damage your vocal cords along with many other things. I signed the papers and okayed it. It is so hard to make these decisions alone. But I have been hearing from docs and nurses along with Aaron that this is a good option. The tube is only meant for maybe 2 weeks. You will have been on the tubes for 12 days on Monday. That is the day scheduled for the trache.
Last night Laurie Collins got ahold of me. She helped me realize that I am not doing a bad thing by putting you first. She is very shocked and wants to come up here soon.
I am going in to see you now. They were repositioning you. I will write more later. Honey, I love you!
Monday, April 25, 2011
Later this afternoon a lady came in. She quickly went in to see someone but not without a big smile and "Hello". When she came back she said.. "You are still here?" Do you need prayer. I quickly explained our situation and she prayed with me. How nice!
Then this evening the chaplin came up. She brought up a prayer shawl for me. There is a ministry of ladies who knit shawls and pray over them. They pray for whoever will receive the shawl. They usually give this shawl to patients but sometimes they decide to give it to someone who has been diligent. What a thoughtful gift.
Steph waited with me and before 2am Doc Shames came out with a big smile on his face. Surgery was a success! I didn't get to see you til 5am. It has been torture. I am looking forward to you waking up.
Sadly, it was later explained that they would not wake you up just yet. They didn't want to rush you off the ventilator. I totally understand however, I miss your voice, your expressions and your touch.
Sunday, April 24, 2011
Annaleah came today. Mike insisted I leave the hospital for a bit. I finally went and we walked all over looking for a restaurant. We ended up right back at the cafeteria. Poor Mike!
Don't worry. I have been eating three meals a day and Steph brings me junk food. I always hear your voice lecturing me to eat.
Anna is coming today. It is her birthday. I bought a locket downstairs that has a charm that says "Daddy's Angel.
I am getting impatient. I really want to see you right now.
Saturday, April 23, 2011
Today is Saturday, April 23rd. We came to Hartford Hospital on Tuesday, April 19th for your liver transplant. They wheeled you away at 7am the next morning for surgery. Who knew you would spend the next week fighting for your life. Wednesday, I experienced the most painful moment in my life.
Dr. Brown came in at 2:45pm and escorted me to a private room. He sat me down and proceeded to tell me that there were complications in the surgery and your thin blood was just bleeding out on the table. They were fighting to stop it. It looked like you were not going to make it off the table.
Honey, I won't tell you what happened in detail but I will tell you that I had never felt such pain in my life. I was stunned and not sure what I was thinking. Dr. Brown gave me a hug and asked me if I wanted to see a Chaplin. No. I didn't want to see anyone at that moment that didn't know me. I admit I did think of Jason.. but quickly passed that thought to the side. After Dr. Brown left I pleaded and begged the Lord over and over. Some did send a Chaplin but I did not feel any better. I only felt like I had to be polite.
The next 6 hours were the worst. Steph rushed to be with me and we waited 6 long hours. Everyone in waiting area was gone. Steph left the private room and started using the hospital phone to make some calls. She finally got someone on the phone who could find out what was going on.
Dr. Lally and Dr. Shames came to talk to me. You were alive but not doing well. When they tried to connect the arteries of the liver together they had difficulty. Somehow the liver cracked and that is where the bleeding started. They managed to pack you up with ice and gauze but they couldn't close you.
Finally at almost 2:30. Almost 20 hours later, I was able to see you. It wasn't good but you were alive! I didn't make it back to the waiting area on my own however because Steph came rushing towards me. Apparently I was sobbing loudly. I would guess it was louder than I did with "My Lucky Star".
Amazingly you have spent the next 3 days fighting as we wait for a new liver. We are still waiting and praying. There are hundreds of people praying for you right now. Cesar is updating your family. I really tried to update your mom up to that point but I just couldn't do it anymore. I couldn't tell her that horrible news. I immediately called Cesar and told him. I am surprised he could understand me. I was a mess and I hope you can forgive me.
You have been put back on the list for a new liver. You are top priority in New England and that includes 0+ since you are in critical condition.
I love you and I can not lose you. Please stay strong for us. Hold on tight until a new liver comes. Don't give up!
Wednesday, April 20, 2011
I was thinking about the donor. The doctor tonight mentioned that they would be removing the organs from the donor around midnight. This would be a long process. I am and kinda in awe about that. I seriously never really thought about what it would mean to have a donor. What the details would entail. Of course they would be donating more than just 1 organ. Which also means the day was obviously spent getting many recipients to the hospital today. Thankfully we have not been impatient here at the hospital, but just never thought of all the background stuff.
So far, all we know about the donor is that she was a 40 year old woman who exercised regularly and was in good health. She was a light drinker but they say that isn't a problem. My thoughts and prayers go out to her family. I really don't know anything else. It all happened so fast we never thought to even ask more questions about her. Was she a mother? How did she pass? I don't know how much they would have shared.
So far they say all looks great. However, they would not know fully until they see the liver itself. There is that small chance they could send us home in the morning. However, deep down I don't think that would happen. We are here for a reason just like we missed that first call for a reason.
I think it is time to try to close my eyes again.
Tuesday, April 19, 2011
Monday, April 18, 2011
The girls arrived on Saturday. I spent a bit of alone time with them while Anna went to Jazz Class. Later in the day, we had to take David to work so we all decided to head off to Walmart. Here are a few pictures of our adventure.
Sunday, April 17, 2011
Every night, as I get into bed, I silence my phone. I am hard of hearing and remove my aids at night. So it isn’t like I can hear the phone anyways. The reason I shut off the sounds is so whatever texts or twitter messages that go through, doesn’t wake up my husband.
I woke up with 6 missed calls from a number I did not recognize. It was a woman named Katie from Hartford Transplant Hospital. It was very urgent that we call back by 6am. Six missed calls in 2 hours.
I instantly woke Angel and we were both very confused. Why would the hospital be calling us? So Angel called them. It seems last night there was a liver donor. They had to give the liver to the next person on the list.
We were definitely in shock. We were told Angel would not get a transplant in his current health. However, being on the list would eliminate spending precious time getting on the list if his health declined. So why were we being called. Absolutely nothing has changed since his last endoscopy 3 weeks ago.
Turns out he is at the top of the list. He has the highest MELD Score. Angel is guessing there just isn’t much of a list for his blood type??? We were seriously in shock. Katie mentioned she was sorry but maybe there is a good reason why were missed this donor. Which I have to say, we agree.
If we had heard the call, what would we have said? Angel said a few times this morning, “I am not ready.” Neither of us are ready. I just can’t imagine what we would have said. Would we have rushed to the hospital anyways?? Actually Angel would have had to go alone. The nieces are here for the week. We have Anna’s tenth birthday bash planned. I would be on the phone right now trying to reach the girls mom and my mom to take Anna. Then trying to figure out a way to get to Angel. The next two months would be our scariest ever. From what we are told, life after a transplant is hard and crucial for the next two months. What would we have done? Would Angel have told them he wasn’t ready?
Honestly, I don’t know what we would have done. We sat in our bed for 2 hours in shock. It is obvious, we need to come up with a plan of attack for the next time we receive that call. I guess I am not silencing my phone at night anymore.
Wednesday, April 13, 2011
This weekend has been nuts.
Seriously! I am using the Window’s Liver writer. I wrote the title on Tuesday and then the First sentence this morning. That’s it. I can’t seem to focus on writing. My mind is mush. Dare I try again tomorrow?? Hmm…
I am going to bed.
Friday, April 8, 2011
Day 17: Am I named after anyone?
I most certainly am. I am named after this wonderful person below.
That would be my mom. For some reason, my dad wanted me to have her name. I also inherited the middle name as well but I am thankful mom was able to change his mind. That middle initial was the only thing that kept us apart. Now that I married, I don’t have that problem as much.
One of the disadvantages of having the same name was being called at home by my dad. We would here.. “Linda!” Both mom and I would shout, “Which one?” Another disadvantage is that I am now stuck with the title, “Little Linda” forever.
With that being sad, I named my son, David. Now I thought we were in the clear since my Dad is David Anthony, and my brothers are William Andrew and Michael David. I had loved the name David since I was a little girl and begged my parents to give Mike that name.
I figured, I was safe. So I named him David Andrew. He would get my brothers and father’s names without it being confusing.
Um.. No. My dad soon needed a copy of his birth certificate. When he got that copy it was discovered that his actual name is David Antony. (no h) Which now means not only does my son have his first name, he also has his middle intial. Talk about confusing! Thankfully, everyone calls my dad Tony, although I know David is proud to carry his Papa’s name.
Thursday, April 7, 2011
I could think on this one all day. Chores are constant. Some of the most dreaded must do’s are ..
The dreaded dishes! Seriously! This is never ending. This sink is never actually clean. I do not have a dishwasher or much counter space.. so those dishes must be hand washed and dried. We won’t even get into the drying part. That was my chore as a teen and the dislike for it followed into adulthood. Although I don’t think I complain about it as much as I did as a teen. How did my mom ever put up with me. LOL.
I know. I could have Anna do the dishes, but that means I would have to re-wash many of them. Seriously, I might as well get it done right the first time. I would ask David but he is hardly ever here. Angel does them once in a while.. but that leaves me to do them a good 4 times a day.
However, seeing dishes in the sink reminds me that we have enough food in the house. Everyone gets to eat until they are content, and believe me, everyone does! There have been times that I will panic over finances or groceries, however I am thankful that we have always had food in our pantry and fridge. It may not be what we want, however we do not go hungry.
Laundry is another chore that is never ending. Although I really shouldn’t complain too much. We do have a washer and a dryer. Sometimes I start feeling really guilty because I should hang my clothes to dry. I told my husband not to purchase a dryer when we got married, but he didn’t listen. We used to live in an apartment complex and they cut our clothesline because they said it made the place look bad. The lines were in the back yard away from the road. I will never understand that one. So that is when hubby put his foot down and bought a dryer.
I just got flashbacks of me as a teen, washing my brothers jeans in the bathtub. Or walking to the laundry mat with mom every week with tons of laundry being dragged behind us. Washing clothes in a washer and dryer is not something I should complain about at all.
The last chore that I complain about the most is cleaning the cluttered area. The fireplace tends to be crowded with toys and playdoh and magazines. Paperwork tends to end up in those baskets. I really dislike cleaning this area.
Then there is the cubby that used to hold my laptop. Now it has become an area for school books, card games and bubbles. All those odds and ends in the house tends to find their way here.
However, I am thankful I get to be home for my daughter. I am able to home school her and spend my days with her. I really need to treasure this time in her life more often. I also get to spend alot of time with my grandson. I will never get these moments back. All these things are temporary. While I know that I can strive to be more organized and clutter free.. these are not what I want to put above the children in my life.
Now dusting, that is one chore I will never understand!
Wednesday, April 6, 2011
If you are visiting from 5 Minutes For Mom’s 2011 Ultimate Blog Party, Welcome!
I am participating in the Ultimate Blog Party for the first time this year! I have been hearing so much about it. It looks like alot of fun. I am really late joining in though.
Not sure what the Ultimate Blog Party is? You can find out all about it here.
Let me introduce myself…
I am Linda. I am a stay at home wife, mother and Grandmother. I also homeschool my daughter as well as the other chores that comes with the job. I enjoy spending quiet times either reading, doing sudoku puzzles or watching Asian dramas with my hubby. I especially love jigsaw puzzles however those are very rare!
With me is my hubby, Angel. Angel works from home so he gets the pleasure of being with us almost every moment of the day. He has recently been diagnosed with non-alcoholic cirrhosis. We have had some scary moments but for now he is doing really well. He knows just how to make me smile when I need I need it the most. We will be married 12 years this summer.
This is my son David – 22 and Grandson Ethan – soon to be 4 in May!
David spends most of his days either working or hanging out with Ethan here. He loves to do outdoorsy stuff, like camping and hiking. I have no idea where that came from as I am not an outdoors person at all!
Ethan gets to spend about 4-5 days with us a week. He is a busy boy and loves cars and trains. He also loves riding his scooter in the cul-de-sac in front of our home.
This is my daughter Annaleah. She will be 10 this month! She loves to dance. She has been taking Ballet for 5 years now. She also does Tap and Jazz.
We also have a newest addition to our family..
This is Popotan. She is now 6 months old and very wild. She loves to play with our Rabbit, Bubbles.. but Bubbles does not want to play with her. We also have 2 fishes.
I must add my grand-daughter Meadow. I am not able to see her as much but she is so important to our family!
Meadow is 2 years old. We treasure every moment with her!
While most of my days are spent with these kids..
we love to add a few more to our home about 4 times a year..
Two of these girls are my nieces. I love every moment with them.
I guess deep down I crave the chaos.
Thanks so much for stopping by! Leave a comment and I will go visit your blog. I am always looking for new blogs to read.
Monday, April 4, 2011
It’s time for another Monday Mingle!
This Week’s Questions are:
1. If you could choose a new career path, what would you choose?
2. What is your favorite ethnic food?
3. Are your kids involved in sports/activities?
Please excuse the babbling below..