Monday, May 30, 2011


Sleep has been very difficult for Angel and I. Especially Angel. I just walked into Angel's room and he is sleeping.  Usually is up waiting for me. I decided to sit over in the corner and blog quietly.

I think I slept pretty good last night.  I was dozing off at 8pm. Ended up calling Anna at nine. She was at church so I could not call her earlier. She loves to keep me on the phone and sadly I kept falling asleep on her.

Angel might be moved to another floor today (out of ICU).  They are also talking about downsizing his trach.

He was just weighed.174lbs which is ten lbs less than when he came in.

Saturday, May 28, 2011

Always moving forward...

Things have been going so well lately.  Mornings are so much easier.  I no longer get ready with fear that something may have gone wrong at night.  I guess you can say there is an extra spring in my step as I leave the hotel at 6am.  It is such a relief. 

This morning I arrived to discover that Angel was off the ventilator all night  He was awake and happy to see me.  However, the feeding tube seemed to have stopped working.  Not good for Angel at all. 

Angel has been getting alot of comments regarding how good he looks.  How they are amazed that he is talking. Yesterday, as Dr. Brown and the others were trying to help figure out what Angel could eat that would taste good.. he commented on how happy he was to be having a conversation with Angel.  I don't think Angel will ever truly realize how many people have been thinking and praying for him.

A few highlights about today..
  • no feeding tube (the decided to leave it out and see how he does)
  • he has to eat, eat, eat. 
  • all his meds are now to be taken by mouth..  He did a good job even though it was gross
  • the urine catheter has been removed
  • there is talk that he is moving out of ICU
  • He is now able to talk to his mom and Anna on the phone in the room. 
  • The vice president shared my blog with Dr. Brown.. (wow!)
I feel like there is more.. but I just can't think of anything.  I am kinda falling asleep here.  I am just going to say goodnight and hopefully blog tomorrow. 


So many changes

Wednesday around 11:30pm, Angel called my cell.  Of course he couldn't talk but I could hear kissing noises.. 

Thursday Angel was able to stand again and even walked in place.  Just incredible.  I am brought to tears each time he does something new.  It is just amazing to me how strong and determined he truly is.

The nutritionist added Metamucil to Angel's daily diet.  This meant that Jason was going to get it through the feeding tube.  No matter how much water Jason used.. there was no way that was going down the tiny tube.  Sure enough he got clogged and had to be removed.  Thankfully the doc today had Angel suck on a water filled sponge squab.  It really helped the tube go down much quicker. 

Later, a speech therapist came in.  She had him swallow some applesauce to see how he did.  He did so well that she decided to do a swallow test later that evening.  I was able to stay through it.  They put a camera down his nose to see where the food went.  It was so interesting to watch.  It also was great to hear that he had passed and was now allowed to have thick liquids and grounded/pureed foods.

Friday the physical therapist set a goal for Angel to get up, walk about two steps to the chair, turn and sit down.   Angel exceeded their expectations.  He did most of the work himself.. and walked forward to the door and back.  Rubi was determined that she was going to let him walk again and she did.  The speech therapist came up and showed Angel some swallowing exercises he could do on his own.  Angel is a bit bored these days and tired with everything he does.  Sadly though, he still does not sleep much at night.  How could I forget!  Today he was able to talk to Anna and his mother on the phone.

Thursday, May 26, 2011

embarrassing moment...

I went downstairs to get my breakfast.  Cereal, banana, milk and yogurt.  I paid for my meal, grabbed my stuff and started walking towards the napkins.. Yogurt container hit the floor..breaks open and makes a mess.  I pick up the big pieces while someone says.. don't worry, I will get someone to clean it up.  I grab a few napkins anyways.. Suddenly this team of nurses comes by.  They had just had a class.  One stands there and yells.. Something spilled!.. Do not walk through here!.. and straddles the mess.  The other nurses all grab napkins and start the clean up process while the first one stands guard.  OMW.. Totally embarrassing but they are all laughing and being so nice.  Turns out the class they got back from was all about how to handle spills.  They thanked me for the hands on experience and insisted I get another yogurt free.  Way too funny.  What a way to start the day.

Wednesday, May 25, 2011

Huge strides.

Thankfully Angel was back to himself this morning.

Angel is back off the ventilator.

Angel was able to sit up better than yesterday. He even stood up with help! 

The transplant team came in and Angel tearfully thanked them for saving his life.

Just found out the only rehab facilities are in Hartford, New Britain and Wallingford.

Angel said, where he goes, I go.  I wish it was that simple.

Angel pulled out his feeding tube.

I got to stay and watch them put it back in.  It was horrible. Angel made the nurse move so I could grab his hands.

They had to do X-rays to see if tube is in the right place.  It wasn' they had to redo and another X-ray. Still waiting on results. It is after midnight and I am tired. 

Tuesday, May 24, 2011

Today's thoughts....

Since I am spending more time with Angel, I have a harder time writing a full blog. I am going to use my phone to post random thoughts throughout the day.

This morning Angel was wide awake when I arrived. He doesn't like the night nurse he has had for 3 nights now. He is very irritable.

Angel was able to sit on the side of the bed with the help of 3 physical therapist. Yesterday he was asking me to shut the curtains. When I asked why, he said so I can walk.  It was not til he was helped to sit that he realized how weak he really was. They helped him put on socks and he tried to stand.. it was amazing.

Yesterday he had a panic attack when they put him back on the ventilator. He felt he couldn't breathe.  After that he fell asleep and started dreaming that he was eating. Or maybe he was hallucinating. 

Sunday, May 22, 2011

He speaks!

On Friday, Cesar and Abe came.  Abe was dropping Cesar off to spend the weekend here at the hospital.  Once again, Angel was in the chair sitting up.  However, when they moved him he got a bit anxious and ended up being sedated again.  So he was a bit sleepy.

Friday night we ordered Chinese and ate at the hotel.  I have to admit, it was nice having someone to chat with. 

Yesterday was an exciting day.  Angel was able to have the ventilator removed for a little over 2 hours in the morning.  They put in a speech valve so he could talk.  One of the first things he said was .. "I have a question and I want you to answer."  Ok.  "What happened to the first liver?"  Well this stunned me because I had been careful not to mention it.  Turns out he asked the nurse the night before, some questions and she mentioned the first liver didn't work.  He must have been going nuts trying to find out why. 

Breathing took alot out of him and he tired quickly.  Later they put it on again for another two hours and he gave Cesar a hug.  That made me cry.  Geez.  So emotional lately.  Last night however, Angel had a really hard time sleeping and wanted me to stay with him.  So Cesar went and got some spanish food and I grabbed  a sandwich to eat in his room.  It was a really long day.  I think I crawled into bed around 11pm.  

Friday, May 20, 2011

31 Days

31 Days ago we came here for Angel's liver transplant.  I am still in shock.  Yesterday Angel was amazing.  He was totally himself.  Sitting up in a chair for hours. Asking lots of questions.  Getting frustrated with me for not understanding questions.  stuff like that.  I was expecting it to wear off but it never did.  He was even got upset when I couldn't read his lips.  Poor guy just wants to talk.  Hopefully the trach comes out soon. 

Thursday, May 19, 2011

Letters to Angel - You are keeping me busy....

I am so exhausted.  But it is a good exhaustion.  We have been here a month now.  Such  a long time.  On Sunday you were awake most of the day.  I stayed with you all morning.  You were feisty though.  You started to tip your body sideways so you could reach the tube in your nose.  Not a good thing to do at all.

I managed to talk to Neal (your nurse) about letting you see Anna.  When mom and Mike arrived, I went out to greet them.  I called to see if we could go  in.  Neal came on the phone to tell me that you pulled out your GI tube.  So we had to wait longer and when we did go in you were sedated. 

We decided to head over to Friendly's and maybe when we got back you would be awake for Anna.  Steph arrived and ate with us.  She met Mike for the first time and thought he was a trip.  We headed back and tried to see you again.  This time you looked at us but no real reaction.  You were now wearing boxing gloves (so it looked like) to keep your hands off your tube.  You were not happy at all.  Jade couldn't help but laugh and mom said it looked like you were going to punch me.  I decided to stay a bit longer that night.  Just to make sure you were ok.

Monday morning you had moved to a new room!  You went from the Dark Side over to the Light Side (as Tony from respiratory calls it).  Your new room has a window.  Unfortunately it is supposed to rain all week but you can't have everything.

You were more awake than usual.  Keeping me busy again.  The nurses have been letting me stay with you during shift change.  You actually get very anxious to see me now.  Lidia was trying to talk to me outside your door but you were going crazy trying to get me to go in.  You also did very well not pulling out your tubes when I am in the room. 

On Tuesday you had Betty for your nurse.  She had told you a few days earlier not to be giving her the evil eye.  LOL.  I really like her.  She kept me by your side all day.  She also managed to get you into a chair.  She is persistent too.  You also had your staples removed.  I wasn't able to count them all as I was hoping to.

While you have been doing really well, you are also very sleep deprived.  You are not sleeping at night at all.  Wednesday I walked in and saw Rubi downstairs getting coffee..  She said "Guess who I have!"  She then told me she was not letting me or anyone in the room.  You had been sleeping since 4am and she won't even let the other nurses in the room.  She was really nice about it and did let me at least see you.  She had given you something the night before that is apparently for pain but helped you sleep.

When I walked in at 10:30.. It was the real you for maybe 2 hours.  You were still tired but you asked the nurse what was in the syringe she was going to give you.  You were understanding and answering everything very well.  At one point I got teary and you asked me why I was crying.. I said it was good tears.  Slowly throughout the day however you got more confused. Around 2 or so.. diarrhea started and every time they turned you, you looked so scared.

Then another nurse came on at 3-4ish.  She was very slow.  I would say that you needed a bed pan or you needed to be cleaned and it would take forever. I offered to help turn you to the side but nope.. had to be a nurse to do it and it would take her forever to find a nurse. She was so slow that you started to freak from being on your side too long, and the diarrhea was worse each time.  The first change she told me I had to leave.  I looked at her and said.. Everyone else lets me stay.  She didn't argue.  She did however feel the need to medicate you 3 times before even starting to change you. 

She gave you more adavar, more hadol, every time.. and you just got worse and worse

at 7.. You were so restless and trying to get out of bed every 10 mins.  I was calming you, cold cloth everything I could to keep you calm.  She looked at me and said I had to leave.. I told her I will be back at 8:30.. I can't leave him like this. She said.. why don't you stay.  I have another patient and I can't keep watching him.  So I stayed.
I was asking questions. I asked some questions about the possibility of the adavar and hadol making it worse. She ended up getting the doctor on call, who came and talked to me about what I have been noticing.  They didn't want to give him what he got the night before because it is for pain and you kept saying you weren't in pain.  Well, you shot up again, trying to get up.. and I said .. are you in pain!  and you finally shook yes! The Doc was standing right there, so they gave you the meds and I stayed until you fell asleep.

Today you seem calmer and sleepy.  I am praying you have a better day.

Saturday, May 14, 2011

Letters to Angel - You are awake!

You have been awake for the past two days now.  You are more focused and trying to talk and communicate.  I just love seeing your normal facial expressions now.  I can't wait to hear your voice again.  It is amazing how much I miss hearing you.  Every night when I get back to the hotel, I think, who can I call.  I immediately want to call you.  But then quickly realize I can't do that.  I just miss talking with you so much.

You are doing well.  Liver and kidneys are working great.  Your fever was down until yesterday.  No one has a clue what is going on with that.  You are now watching tv and smiling at the doctors when they come in.  You are also responding much quicker when they ask you a question.

The last time I posted here, I was very frustrated.  That day you ended up sleeping all day.  That night Laurie Collins called.  Such perfect timing.  We talked alot about nurses and hospitals.  If anyone would understand how I felt, it was her. 

However, I must say I did like the nurses from yesterday and the day before.  Lisa (who you will also have today) takes the extra time to figure out what you want.  When you reached up towards your face, she knew you were itchy and didn't assume you were going to pull out the nose tubes.  She laughed when she went to wash your face and you reacted like a cat needing a good scratch under the chin.  She marveled at how good you look compared to when you first came in.  

Yesterday you had Neal.  He would also try and see how you were feeling.  He even took the time to ask me what I thought.  "What does he look like to you?  Does he look like he is in pain?"  I told him no.. It looked like you wanted to get up and stretch your back and neck, and even your legs.  You look so uncomfortable no matter how many positions they put you in.

Well today is a new day and I am looking forward to sitting with you again.  Tomorrow Anna, mom and Mike are coming to see you and visit with me.  I am trying to tell myself it is ok if I spend a few hours with them and not by your side tomorrow.  Anna misses you so much and is really hoping they will let her in even though she isn't twelve yet.

Wednesday, May 11, 2011

So frustrating!

I am extremely agitated today.  I will explain why but first I am going to rewind to yesterday. 

Morning started off great.  I walked in to Angel's room and he was awake.  I said to him.  "Hi Honey!  Do you know where you are?"  Well I got the look from Angel that said.. What kind of a stupid question is that?!  I had never been so happy to see that look.  Sadly, it didn't last long because he started to seem confused again. During shift change, I grabbed lunch and headed back in at 9.  Angel was sitting on a special chair.  He was sitting there for about an hour and they moved him back to the bed.

I spent all morning trying to be pro-active and prevent irritation on his part.  He would make scratching motions with his hands and I would scratch his beard.  He would try moving his legs and I would exercise them.  It all seemed to help.  At one point he started to get really agitated again and I asked him a round of questions.  "Are you in pain?"  No Response.  Then as I wanted him moving his bottom half of his body off the bed like yesterday, I asked.. "Do you need to go to the bathroom?"  He nodded his head viciously.  I told the respiratory guy and he asked the same.. Angel once again nodded his head.  I felt really good that I was right the other day.  I was being proactive and it helped alot.

A psychiatrist came to see Angel and Angel smiled at him.   They decided to change one of his meds. 

Well something happened around 3pm.  Angel was sleeping and I noticed that his bp was going up.  Suddenly he woke up agitated.  Really agitated.  I just couldn't calm him at all.  I asked all the questions again.  No answer.  Another nurse came in and gave him some meds.  It didn't work.  She asked him. "Are you scared?"  He nodded viciously.  Then he gave this look like he was about to cry.  OMW  It was just awful.  At that time Debbie from the transplant team, came in.  She even tried.  Finally Rebbecca (a nurse) looked at me and said .. I need to you to leave.  So I did.  Debbie told me to take a walk with her and she walked me right out of the hospital to sit on the bench.  I had no clue I was shaking so bad.  I did cry also of course.  Debbie talked with me for a long time.

Since Angel was now sedated, there wasn't much to do in the room but read and watch tv.

Steph came last night with new ear buds!  So now I can hear a bit better.  We had a nice time chatting and she got my mind off things. 

Now this morning, I walk in at 6:30 and Angel is awake and watching tv.  He still isn't acting completely normal but he is awake.  He was following commands.  His eyes even followed mine to the clock on the other side of the room.  His bp was up and down but Lidia (night nurse) would tell him to calm down and he would nod and try.  He was doing awesome. 

During shift change, I didn't leave right away because I just didn't want to leave him alone while awake.  He started coughing and had saliva all in his mouth.  He got very anxious and I called for someone to suction him.  When the nurse came with the suction he practically leapt at it.  She thought she had it all and walked away but he got really upset and kept pointing to his mouth.  I asked if he had more and he nodded.  At that point Rebecca and Denise showed up and I told them.. so Denise suctioned him until he was satisfied.. however, they started back up the propofol.  I really wish they didn't have to do that.  I didn't ask why because technically I wasn't even supposed to be there.  He was off the Propofol since midnight and was doing great.

This is so Frustrating!

Monday, May 9, 2011

Just Another Manic Monday...

Know how I just mentioned that my ear bud has one side that works.  Nope.  That stopped this morning.  Now I have no choice but to wear the oversized one.. which is now killing my ear.  I can't even wear it in the right ear.  Won't stay in at all.

This morning, I went in to see Angel and he was sleeping.  After breakfast I was happy to discover Chris was his nurse of the day (I have a few favorites).  Angel was wide away and calm.  Even after being suctioned and coughing he was able to calm himself.  Etna, the cleaning lady came in and said.. You are looking great and he smiled at her.  I big smile.  He smiled at Chris too.  It was awesome to see.

News from the doc was that his liver was good, kidney numbers were looking great.  They were thinking about no sedation and maybe getting him off the ventilator today or tomorrow.  The only thing mentioned was that he had blood in his bile tube yesterday and Dr. Swales wanted to take a quick look to make sure nothiing was up.  

Somewhere around 11:30 It was time to reposition him a bit.  Chris and another nurse did that, then they suctioned him because was coughing, well suddenly he went nuts!!  Another nurse and I spent some time holding him down.  He was going to fling himself off that bed.  They finally had no choice but to sedate him.  I just remember looking at the monitor and seeing his blood pressure above 400.  Scary stuff!! I do believe I know what got him going and the doctor did ask my thoughts on it.  He had made a mess (if you know what I mean) and he looked as if he was trying to fling the bottom half of his body off the mess.  The last time I saw him freak like that he had done a mess shortly before also. 

Around lunch I decided to go looking for ear buds.  No one has them.  Chris even gave me some hospital ones and they didn't work, the sound was too low.  So I have no choice but to deal with it. Steph texted me that she picked up some ear buds at Walmart and would bring them tomorrow evening.  Honestly, what would I do without her.  Now I just have to hang in there til tomorrow evening  

So due to the events of the day, Angel is having a minor setback.  They are going to review tomorrow and decide where to go from there.  They did do an endoscopy and found a small tear that is caused from retching or severe coughing.  It will heal on it's own. 

Well, tomorrow comes quickly and I am falling asleep at the keyboard.  Time to go! 

Mother's Day

Mother's Day started and ended with a bang for sure.  The stuff in the middle however, was fantastic. 

It started when I woke and got into the shower.  I forgot to double check the mat when I washed clothes the night before.  One leg in the tub, slid all the way to the other side.. and the other leg, out of the tub, slammed into the side of the tub.  Oh man, I watched it turn people right in front of my eyes.  Toughen up and just move one, a bit slowly but keep going. 

I went into Angel's room and he was awake and really focusing on me.  You could tell he was still a bit out of it.. but he was awake longer than normal.  He squeezed my hand when I asked.  It was nice.  So I went and had breakfast. 

During breakfast, David called .. something about being really sorry, he tried to come to see me today.  I assured him it was ok.  Then the phone died.  His cell needed to be charged. 

I went back into the room and discovered it was the same nurse from yesterday.  Let's just say she isn't one of the nurses that I prefer.  No problem.  Angel is still awake so I sit with him for a bit then I am told I need to go so they can wash him. 

I come out to the waiting room.  I go to sit down and I don't have my glasses on.. I look up and there is the boy that looks like a blurry Ethan standing there.  What an awesome surprise!!  Justine and Ethan stayed for a bit and it was absolutely wonderful.  Then before they left Abraham and Mariah came.  Abe and I went in to see Angel.  Angel opened his eyes and saw me. Then as he went to close them, he heard Abe's voice.  Those eyes got really big and started to search for him.  That was wonderful to see.  Before Abe and Mariah left. Paula and Melodye came (from church) and stayed with me til 6:30. 

It was a wonderful day.  Of course the last bang was when my second hearing aid died.  Seriously?? It's a really good thing I have my amplifier but problem is only one side of ear buds work.  The back up ones I packed are too big and keep falling out of my ears!  Not only will hearing be difficult, now I am going to have a bigger issue talking on the telephone.  Sigh!  If only I understood what He was trying to teach me. 

Saturday, May 7, 2011

Letters to Angel - Day 18


That is what they tell me you will have for a while.  I was doing ok with keeping you calm for a bit, until yesterday.   You started off coughing and getting a bit anxious.  I stroked your beard and hair for a bit.. but each time you settled you would get more anxious from the last.  The nurse was busy so I was alone.  Your heart rate was past 130 which is like really bad.  Someone finally came in to help.  You thrashed your head back and forth so viciously the trach tube came undone and all I hear was a 'whoshhh' sound.   They gave you hadol which calms you down but doesn't sedate you. However, you looked uncomfortable and they had to  move you.  Then they had to suction you.  You woke extremely agitated that they finally ended up giving you propofol, which knocks you out. 

This was so upsetting that I had to just leave for a few hours.  Steph came later and we went to Walmart.  You would be proud of me.. I bought sneakers.  Although I didn't want to pay alot so they are cheap.  The old ones don't seem like they will hold on much longer. 

On the ride to Walmart we saw a drug deal happening, someone thrown onto a police car and being cuffed.  A few arrests, gangs, almost got sideswept a few times, including in the parking lot.  Talk about a vicious town!  Poor Steph.  I don't think we will be leaving the hospital grounds next time. 

Thursday, May 5, 2011

Kidney stones.

Last night the nurse tried to explain what went on during stenting of the right kidney. She got it wrong. The urologist came in and explained. They went to stent the kidney so the stone would not cause a problem. When they put it in dark, murky stuff started to come out. This could be old blood from the first liver transplant or it could be an infection. They decided to check the left side and found the same. They stented that one as well and sent the samples to the lab. The stone is still there. They do not want to mess with that until he is better. They will remove or replace the stent in a month.

Letters to Angel - Moving forward

First let me say, you scared me yesterday.  Around 9:30am, Chris started doing some routine things which included cleaning your mouth.  This usually starts your agitation.  However, you did great.  You let him clean your mouth and even apply chap-stick.  You were doing great, til you started coughing.   Chris started to suction out your mouth and you ok.. but then you started coughing again.  I was trying to settle you a bit but you suddenly gasped and gave me this look of horror.  Next think I know you started pushing me away.  That was scary.  Chris and I tried to calm you but Chris had now choice but to sedate you.  Your blood pressure had gone up to 212 and that was freaky.

Yesterday you had a trach done.  No more tubes in your mouth.  What a huge difference that makes.  You were supposed to get a kidney stent.  They found a good size kidney stone the other day.  However, when they went in they discovered it was 7mm in size.  Apparently they removed it and found alot of smaller stones and such so they decided to stent both kidneys.  I hope it isn't too painful for you.  You have alot of things going on right now. 

Lori has been sending you a care gram a day with stories on them.  I am loving them and I can't wait to share them with you. 

Wednesday, May 4, 2011

Letters to Angel - Two weeks ago

Two weeks ago today you were in surgery at this time for your first liver transplant.  It has been a long two weeks.  I have spent a week at the hotel.  That may end today.  Yesterday, you actually opened your eyes when the nurse called your name.  She said "Look who's here" and your eyes searched for me.  That was a great feeling that you could actually focus.  You are still doing that today.  Yesterday you were also taken off the dialysis machine.  I wish I had a pic of the machine for you.  Your kidney is doing it's job now. 

The only down side is your blood pressure.  When the nurses go to do anything like re-position you, or clean you mouth, or even clean up your bowel movements (which you have been doing for 3 days now. yay).. you get agitated.  Then your blood pressure goes up to 200+.  You give the nurses no choice but to sedate you.. However then your bp goes below 100.  It is a vicious cycle!  On Monday, you were supposed to get a trach... but your blood pressure was too low. 

Kim, your nurse, was trying so hard to get your bp steady but wow, you like to make things difficult.  LOL.  Thankfully last night was better for you.  Lidia, your night nurse, decided to talk to you before doing anything and you let her do what she had to do. 

Today you should be getting a trach done and kidney stone stinted.  Oh yes dear.. the cat scan shows you have 2 kidney stones.  One is a pretty good size and may cause a problem so they are going to stint it now.  After you get better they will work on blasting it. 

I love and miss talking with you! 

Sunday, May 1, 2011

Letters to Angel - Fever

Dearest Angel,

You have a fever.  Yesterday it was 101.8.  Before I left it was down to 96.6.  Chris (the nurse) even put ice packs under your armpits.  He also had x-rays done and alot of bloodwork.  This morning I woke to see you and it was up to 102.1.  You are scaring me .. you know that don't you. 

Abraham is visiting you today.

Tomorrow you are going to go in for a tracheotomy.