Hello everyone! im sorry for the long delay in reporting on Daniell. But I have a few up dates . Heres what hapaned since I left philly.
When I arrived in El Paso Texas my wonderful hubby was there to pick me up. He took me out to a wonderful dinner. We hopped in the jeep for the 100 mile drive home.
I guess about half way there.... it must have been about 7:30 new mexico time. My cell phone rings and its Dani saying, "Mom I think im gonna have a heart attack!" "Oh no Dani whats wrong?" Instantally im thinking somthing went wrong with one of her valves and is in trouble! Then she proceeds to tell me that there was an explosion 3 floors below her (its 930 pm in philly) a warning speaker comes on in the hotel telling everyone to evacuate the building by using the stairs and do not use the elevator. Dani gets up and directs Dion to get his wallet and she throws a blanket over herself and out to the frount desk they go. They are thinking there is a fire in the building with the loud explosion and they are on the 17th floor of the Penn Tower. She is trying to sumise in her mind how the heck is she going to go down 17 flights of stairs after just being discharged from the hospital! People are starting to exit the building via the stairs. The security guards have used a key to lock all the elevators from working. Another man comes out of his room in a wheel chair. No one offers to help them out of the building. Dani and Dion both in panic mode decide to wait and are eventually told that a security guard is being sent up to help the man in the wheel chair go down by unlocking the elevator and using it to get him down. (they figure they can hitch a ride down with him). Finally a security guard comes up telling them that the loud noise was a vaccume cleaner canister 3 floors below that exploded and the building is safe now and they can return to their room. Whew!!!
Then I tell Dani, please honey...dont ever call me and tell me after you just had open heart surgery that you think your going to have a heart attack! Geez! She almost gave me one! I guess if there ever is a test to see if mechanical valves work after surgery there couldnt be anything better than putting a patient in a high rise building and telling them there is a fire below them and to exit the building by using the stairs. Why dont I have a head full of grey hair???
Now back to Danis recovery. She started off doing pretty good trying to take it slow. Her chest was healing good but her hematoma still had the drain tubing in place and it was giving her alot of pain at night when she tried to sleep. She said some of the staples were pinching her. When she finally did get to see the nurse practitioner they removed half the staples from her chest and groin and made some adjustments to her blood thinners because her levels wernt right for how thin they wanted her blood to be. They hadnt realized her groin had so many staples and told her they were going to keep the drain tube in till they saw her again in a couple days. When she returned they removed the rest of the staples in her chest and groin and also the drain tube but noticed the wound on her groin wasnt healing properly. They said to keep an eye on it and if it got any bigger to let them know right away. They prescribed her some antibiotics and gave her some betadine to keep the wound clean, and again adjusted the amounts of the blood thinners she would be taking. (Every visit her amounts were too low).
Yesterday she went back to see them and they said the wound would need to be packed with gause as it wasnt looking good and they wanted to prevent infection. The gause would help with the drainage issue. And again upping the dosage of her blood thinners.
Today the nurse came to her room and removed the gause and measured the wound. Its 1.7 centimeters long and 1.5 centimeters wide and 1.2 centimeters deep. She re-packed the wound and said that the gause looked good and there wasnt alot of drainage.
The doctor wont let her come home till this wound is healing properly. She is very homesick! She told me this morning that she just wants to come home! She said her chest scar is healing great. So right now she is just waiting it out and hoping this darn hematoma will start to heal.
They have met some nice people there. One of them is Jackie, she is one of the frount desk clerks and she has taken the kids laundry to her home and washed it for them. She has also gone to the grocery store and bought them a list of things that they needed. Dani also told me about a nice guy that enlarged a thai food menu for them and circled all the food he loves to eat at the restraunt. Philly really is the city of brotherly love!
For any of you out there that would like to perk Dani up, I bet she would love it if you would call her and try to brighten her day just a little. She is pretty home sick and misses all her friends. Im sure it would put a smile on her face....
George and I will be going camping for a couple weeks. Im not sure if we will be out of cell phone range but i do know I will not have internet. So I wont be making anymore posts till we return. I asked Dani to post if she gets the chance. She did say her groin hurts to sit down and she has to take her computer down to the first floor loby to get a signal so at the moment its hard for her to make posts. I just hope that the next post I make will be telling you all that the kids are home and safe. Have a great day everyone! Vel
Saturday, June 2, 2012
Tuesday, May 22, 2012
"No one realizes how beautiful it is to travel till he comes home and rests his head on his old, familiar pillow"
Hi everyone, well I managed to stay out of the kids hair yesterday till about 3 pm. As I suspected, they had a steady streem of doctors and nurses coming and giving instructions about Danis discharge. The only thing holding them back was that Dani was still on one drain tube for the hematoma on her groin. They couldnt disconnect her from it and the blood loss from the drain needed to be measured everyday and noted for her doctor. Normally it would be an easy task but Dani and Dion are both visually impared they could not read the amounts on the rubber bottle that collected the blood. So there was an issue with her discharge.
To make a long story short they did discharge her and arranged a nurse to make daily visits to her room to moniter her BP and change the dressing on the wound on her groin.
She called me yesterday afternoon around 3 and told me she was about to get discharged and needed some perscribtions filled and the nearest place to have it done was a walgreens on 18th and south street. So I hopped the bus and made my way over to the kids hotel and got a handfull of perscribtions and a list of other over the counter meds and off I went.
I jumped on the 40 bus going in the wrong direction in the pouring rain. I realized I was going in the wrong direction about 4 miles down the road. (bad neighborhood). I asked the bus driver and he said yes I had gotten on the wrong 40 bus. (oh man!) He dropped me at the next corner and gave me an emergency transfer ticket and told me I had to walk 3 blocks and catch the 40 going in the next direction. Talk about scary! it was about 6:30 pm by then and dark cuz of the rain and i had no umbrella and no sweater (was getting chilly). I found the stop I needed and began my long lonely scary wait. Geez wheres a bus when u need it! I must have waited 30 minutes for the bus to get there. I had drunk men walk by me and mean looking guys pass by and I could smell urin on the corner near where I was standing. There was trash all over, and loud music coming from one of the houses. I reached in my purse and got my money out and hid it on my body. I stood there cursing myself for even getting on the wrong bus in the first place. Then I cursed myself for even getting off the bus (in that neighborhood). God what was I thinking! I did eventually find my way to 18th and South street. I got all the things on Danis list and her meds. Before I got off the last bus I asked the driver what bus I needed to get on to get back to the Penn Tower. She told me walk one block and get the 40 going in the other direction. So I walked the block hopped on the 40 again and when I got about 6 miles this time down the road... (none of the roads looked familiar) I asked the driver if this bus was going to take me back to Penn Tower and he said no...you got on the 40 going the wrong way!!!!!!! Ok I cant lie, just about every swear word you can think of was going through my head. This time the driver dropped me off on Jefferson and 54th street and told me to cross the street and wait on the 40 going in the other direction. And yes I was in another bad neighborhood!!!! Geez!!! Only this time it was like 8:15 pm and dark out and again it seemed like an eternity till the 40 came around to get me. I called Dani to tell her my mishap and not to worry. It had now taken me 2 hours to make (what should have been) a one hour trip!!! In the pouring rain!!! With no umbrella!!! And 2 huge blisters on both my feet from all the walking I had been doing the last week and a half. And all I could tell myself was stop complaining Vel. Your not laying in the Penn Tower right now with a drain tube hanging out of ur groin and 59 staples in ur chest. (yes I counted 59 staples! ) and I stopped counting when I got to 12 on her groin because the gause covered the rest. I walked in her hotel room around 9 pm soaking wet. But at least I made it! I'm so thankful I didnt get mugged cuz I sure would have felt sorry for the guy I would have had to bodyslam!!!
I helped Dani get her meds orginized using a magic marker and writing large so she could see what she needed to take and how much day or night. Then I hit the road and hailed a cab (in the pouring rain) in frount of the hotel to get home. I had enough bus rides for the day!
This morning when I woke I called Dion and asked how Dani was doing. He said she was doing good but that the home nurse was on his way over and they needed Danis drivers licence and insurance and I also had her UNM ID in my purse from the night before (to get her meds) which I had totally forgotten to give back to her. Soooooo I grabbed my purse and out the door I went to hop a bus to their hotel before the nurse got there. Thank god I know that route! I had no problems and I even found an umbrella in the house here that I took along cuz it was raining again today.
I stayed with the kids today most of the day and we ordered pizza to the room and all had a nice lunch together. Dani even ate a few bites of pizza. We all took a walk after lunch and rode the elevator to the 21st floor of the Penn Tower to see the view. It was beautiful! When it was quiet in the elevator we could hear Dani's heart ticking. It literally sounds like a ticking watch. Tick tick tick tick tick tick. You dont even have to put your head to her chest to hear it. The sound seems loudest when you stand behined her. Tick tick tick tick tick tick. Its amazing!
Around 3:30 pm I said goodby to the kids told them I would be flying out tomorrow. Back to New Mexico. I've pretty much done what i've come here to do . I'm sure the kids can handle the rest by themselves. And I am sooooo looking foward to going home now! I sure do miss New Mexico and my hubby George! I'm almost packed and have my little row house all clean and ready for the next occupants.
Philidelphia is a beautiful city. It has so many beautiful old historic buildings and statues. The food I've eaten here has been wonderful (Itialian mmmm) . It truly would be a great place to come for a vaction for those of you that like the city and all it has to offer.
I made this blog to keep you all informed about my daughter Dani and I do hope I accomplished my goal. It was nice to be able to document all the events of her surgery and im sure someday Danielle will want to come back and read it. I will keep you all posted when I return home, of Dani's progress in the weeks to come. It feels like I've been here for weeks but its actually only been 2 weeks. And can you believe its only been one week and one day since Danielle had her surgery? Wow.
See you soon everyone...Thanks for all your prayers and well wishes for my daughter. Vel
To make a long story short they did discharge her and arranged a nurse to make daily visits to her room to moniter her BP and change the dressing on the wound on her groin.
She called me yesterday afternoon around 3 and told me she was about to get discharged and needed some perscribtions filled and the nearest place to have it done was a walgreens on 18th and south street. So I hopped the bus and made my way over to the kids hotel and got a handfull of perscribtions and a list of other over the counter meds and off I went.
I jumped on the 40 bus going in the wrong direction in the pouring rain. I realized I was going in the wrong direction about 4 miles down the road. (bad neighborhood). I asked the bus driver and he said yes I had gotten on the wrong 40 bus. (oh man!) He dropped me at the next corner and gave me an emergency transfer ticket and told me I had to walk 3 blocks and catch the 40 going in the next direction. Talk about scary! it was about 6:30 pm by then and dark cuz of the rain and i had no umbrella and no sweater (was getting chilly). I found the stop I needed and began my long lonely scary wait. Geez wheres a bus when u need it! I must have waited 30 minutes for the bus to get there. I had drunk men walk by me and mean looking guys pass by and I could smell urin on the corner near where I was standing. There was trash all over, and loud music coming from one of the houses. I reached in my purse and got my money out and hid it on my body. I stood there cursing myself for even getting on the wrong bus in the first place. Then I cursed myself for even getting off the bus (in that neighborhood). God what was I thinking! I did eventually find my way to 18th and South street. I got all the things on Danis list and her meds. Before I got off the last bus I asked the driver what bus I needed to get on to get back to the Penn Tower. She told me walk one block and get the 40 going in the other direction. So I walked the block hopped on the 40 again and when I got about 6 miles this time down the road... (none of the roads looked familiar) I asked the driver if this bus was going to take me back to Penn Tower and he said no...you got on the 40 going the wrong way!!!!!!! Ok I cant lie, just about every swear word you can think of was going through my head. This time the driver dropped me off on Jefferson and 54th street and told me to cross the street and wait on the 40 going in the other direction. And yes I was in another bad neighborhood!!!! Geez!!! Only this time it was like 8:15 pm and dark out and again it seemed like an eternity till the 40 came around to get me. I called Dani to tell her my mishap and not to worry. It had now taken me 2 hours to make (what should have been) a one hour trip!!! In the pouring rain!!! With no umbrella!!! And 2 huge blisters on both my feet from all the walking I had been doing the last week and a half. And all I could tell myself was stop complaining Vel. Your not laying in the Penn Tower right now with a drain tube hanging out of ur groin and 59 staples in ur chest. (yes I counted 59 staples! ) and I stopped counting when I got to 12 on her groin because the gause covered the rest. I walked in her hotel room around 9 pm soaking wet. But at least I made it! I'm so thankful I didnt get mugged cuz I sure would have felt sorry for the guy I would have had to bodyslam!!!
I helped Dani get her meds orginized using a magic marker and writing large so she could see what she needed to take and how much day or night. Then I hit the road and hailed a cab (in the pouring rain) in frount of the hotel to get home. I had enough bus rides for the day!
This morning when I woke I called Dion and asked how Dani was doing. He said she was doing good but that the home nurse was on his way over and they needed Danis drivers licence and insurance and I also had her UNM ID in my purse from the night before (to get her meds) which I had totally forgotten to give back to her. Soooooo I grabbed my purse and out the door I went to hop a bus to their hotel before the nurse got there. Thank god I know that route! I had no problems and I even found an umbrella in the house here that I took along cuz it was raining again today.
Around 3:30 pm I said goodby to the kids told them I would be flying out tomorrow. Back to New Mexico. I've pretty much done what i've come here to do . I'm sure the kids can handle the rest by themselves. And I am sooooo looking foward to going home now! I sure do miss New Mexico and my hubby George! I'm almost packed and have my little row house all clean and ready for the next occupants.
Philidelphia is a beautiful city. It has so many beautiful old historic buildings and statues. The food I've eaten here has been wonderful (Itialian mmmm) . It truly would be a great place to come for a vaction for those of you that like the city and all it has to offer.
I made this blog to keep you all informed about my daughter Dani and I do hope I accomplished my goal. It was nice to be able to document all the events of her surgery and im sure someday Danielle will want to come back and read it. I will keep you all posted when I return home, of Dani's progress in the weeks to come. It feels like I've been here for weeks but its actually only been 2 weeks. And can you believe its only been one week and one day since Danielle had her surgery? Wow.
See you soon everyone...Thanks for all your prayers and well wishes for my daughter. Vel
Monday, May 21, 2012
"Great is the human who has not lost his childlike heart"
Good morning! Yes a very good morning it is! I'm sure most of you have heard that saying...one step foward, two steps back.... well yesterday for Dani it was all steps foward and no steps back! When I woke in the morning yesterday first thing I did was to call and see how Dani made it through the night. Dion told me she was feeling much better and had actually eaten half of a banana muffin and some of her breakfast on her tray. He said she had gotten up early to walk and had asked the nurse to take her off the narcotic drugs and put her on motrin. She said she would ask for pain meds when she felt she needed it but she wanted to clear her head and she felt the meds were making her sick and not helping her recover properly.
When I got to the hospital she was looking great! I mean great! She was in her bed and was talking in her old usual voice. She was actually perky... I couldnt believe my eyes. She was even swallowing better. I dont know what was causing the blockage the day before but she had resumed eating and drinking, and was being careful to take small bites just in case but all seemed fine with her swallowing now. Dion and I went down and had a sandwich and we stopped and bought Dani a milkshake on the way back to her room. She loved it.
I made a phone call to her Dad because he had been feeling a little down and was worring about Dani and I wanted him to hear her voice so he would be reassured she was doing better. They must have talked on the phone for at least 15 min! It was so nice to see her try and cheer her dad up as she knew he had been worried. All I could do was smile.
I still dont know what was causing the blockage but I have a couple ideas. One is maybe swelling from the trach she had in surgery. Another would be the flem she had been coughing up . There was a few occasions when she actually coughed up a thick mucus (dont wanna get discusting here) ball of flem and each time after she had done it she said she could breath better. So maybe it was causing an obstruction in her throat. And my last theory is that her heart was beating so fast that she could feel it in her neck (doc said it was normal right after surgery) and it was making it hard for her to swallow with the constant pounding . She even said it was hard to breath at times because of it..... in any case... she is doing great now!
They plan on going ahead and discharging her today. It will probably be late in the day. From what i've seen they have a whole slue of docs and nurses come in and discuss all the do's and dont's of going home after open heart surgery. We will need to make sure she gets visits from a home care nurse while in the hotel. And she will have regular appointments for them to draw blood to measure her coumadin levels. Im thinking it will be around 4 or 5 pm today instead of early this AM.
I'm sitting here debating on weather or not to go to the hospital right away or just wait it out and let Dani and Dion deal with all the discharge stuff so that Dion can take notes with his brail note. I want them to realize that I will be leaving on wednesday and its time for me to step back a little and let them take charge of whats coming in the next phase of her recovery. I also want the Docs and nurses to realize I wont be there after tuesday evening. (leaving philly on wednesday morning). And they need a good supprot staff to make sure Dani continues to get well in this next stage of recovery. Believe me its a hard decision! Yesterday we watched videos about discharge and what to expect and how to proceed at home. It was all good stuff for Dion to hear and he did take notes. No lifting for Dani...her diet should be changed....ect ect ect.... so im feeling I need to just keep my distance and let them go through this phase together. My rolercoaster ride is soon coming to an end. Or is motherhood just one long rolercoaster ride that never ends? lol maybe..... :) Have a great day everyone I know i will! Vel
When I got to the hospital she was looking great! I mean great! She was in her bed and was talking in her old usual voice. She was actually perky... I couldnt believe my eyes. She was even swallowing better. I dont know what was causing the blockage the day before but she had resumed eating and drinking, and was being careful to take small bites just in case but all seemed fine with her swallowing now. Dion and I went down and had a sandwich and we stopped and bought Dani a milkshake on the way back to her room. She loved it.
I made a phone call to her Dad because he had been feeling a little down and was worring about Dani and I wanted him to hear her voice so he would be reassured she was doing better. They must have talked on the phone for at least 15 min! It was so nice to see her try and cheer her dad up as she knew he had been worried. All I could do was smile.
They plan on going ahead and discharging her today. It will probably be late in the day. From what i've seen they have a whole slue of docs and nurses come in and discuss all the do's and dont's of going home after open heart surgery. We will need to make sure she gets visits from a home care nurse while in the hotel. And she will have regular appointments for them to draw blood to measure her coumadin levels. Im thinking it will be around 4 or 5 pm today instead of early this AM.
I'm sitting here debating on weather or not to go to the hospital right away or just wait it out and let Dani and Dion deal with all the discharge stuff so that Dion can take notes with his brail note. I want them to realize that I will be leaving on wednesday and its time for me to step back a little and let them take charge of whats coming in the next phase of her recovery. I also want the Docs and nurses to realize I wont be there after tuesday evening. (leaving philly on wednesday morning). And they need a good supprot staff to make sure Dani continues to get well in this next stage of recovery. Believe me its a hard decision! Yesterday we watched videos about discharge and what to expect and how to proceed at home. It was all good stuff for Dion to hear and he did take notes. No lifting for Dani...her diet should be changed....ect ect ect.... so im feeling I need to just keep my distance and let them go through this phase together. My rolercoaster ride is soon coming to an end. Or is motherhood just one long rolercoaster ride that never ends? lol maybe..... :) Have a great day everyone I know i will! Vel
Saturday, May 19, 2012
"I get by with a little help from my friends."
Hi everyone, sorry i havnt blogged in the last couple of days. On Thursday My best friend Daine flew in from Georgia. She is a flight atendent and was able to catch a flight here to philly so she could see Dani and I for a couple days. It was really nice to get to see her. It perked up Dani's spirits.
Dani had been complaining about swallowing. She seemed to be having a hard time with it and it seemed to be getting worse with each meal she tried to eat. So we just cut her food into tiny peices hoping that it would get better as time passed. We helped her get cleaned up and changed her sheets. She seemed to be eating less and less because of the swallowing issue.
On friday morning I called Dion to see how Dani was doing and he said she wasnt doing good at all ...that she had woken up with sweats and a headach and also sick to her stomach and nausia. I think it was because the night before they took her off the pain medication drip and placed her on the pill form and was giving her too large a dose. So I called her nurse right away and asked them to lower her dose but instead they changed it to percocet and Dani doesnt do well with that. (its even worse) I tried to tell them but they wouldnt listen. All they needed to do was drop the dose of diludid down from 4 mil to 2 mil.
Diane and I were out in the city making our way to the hospital and we stopped and bought Dani 6 new pairs of pretty sox and stopped at a fruit stand and got her some mango and pineapple. When we got to the hospital we chopped it up and fed her some she ate pretty good but still had the swallowing issue and was still sick to her stomach and not really wanting to eat. We went and bought her some chicken noodle soup but she wouldnt eat any. Friday was just a bad day for her all around.
Then today when we arrived at the hospital she was still feeling sick to her stomach. They still had her on the percocet and again i told them she couldnt tolerate that drug and it was making her sick. Her swallowing issue was still going on too. Diane and I got her to take maybe 3 bites of fruit but she didnt eat any lunch and she was drinking very little water. She said she felt like her food and meds wernt going down all the way. I was still worried about how much she was eating so I took Dion with me a couple blocks from the hospital and I bought Dani some really good potato soup and managed to get her to take about 5 good sips. I was letting her nurse know all these issues and she said she would see if she could get a speech therapist over to listen to her swallow with a stethoscope and see if they could hear anything. (like food going down). But didnt think they could get someone there till monday!! That didnt sit good with me!
Meanwhile I made them listen to my concerns about the percocet and they changed her pain meds back to dilaudid 2 mil this time. The nurse crushed her meds and put them in a spoon of apple sauce and then I managed to get Dani to eat most of the apple sauce. I had been making her drink small sips of water all day to keep her hydrated because they had her back on lasix to reduce the swelling caused from the heart lung machine that she had been on during her surgery. I didnt want her to get dehydrated. WHEW!!!
When I got back here to the house I called Dion to see how she was doing and he told me her pain was much better and she wasnt nausiated anymore since she was back on dilaudid and that she had actually for the first time today gotten up and taken a walk. So im hoping that when I go in tomorrow she will have more of an apitite and we will get the swallowing issue figured out soon. (she was swallowing just great after the surgery) . Could just be a little swelling from the trauma to her trach from being intubated. Doesnt look like we will know much until monday. Oh did I tell you that somewhere between all that I walked Diane over to the train station (just one block from hospital) and sent her on her way back to Georgia. We did manage to have a nice visit even under the circumstances. Shes been a good friend for about 30 years now.
Its 10:27 pm here in philly right now I just called her nurse hoping to hear some good news about Dani before I sign off with all of you. She told me that Dani did manage to eat some of her soup at dinner time and some mashed potatoes and they didnt have to crush her dilauid. She managed to drink it down. She isnt having the nausia that the percocet was giving her and seems to be feeling much better. I just breathed a sigh of relief! Hope you all did too! Goodnight everyone. Vel
Dani had been complaining about swallowing. She seemed to be having a hard time with it and it seemed to be getting worse with each meal she tried to eat. So we just cut her food into tiny peices hoping that it would get better as time passed. We helped her get cleaned up and changed her sheets. She seemed to be eating less and less because of the swallowing issue.
On friday morning I called Dion to see how Dani was doing and he said she wasnt doing good at all ...that she had woken up with sweats and a headach and also sick to her stomach and nausia. I think it was because the night before they took her off the pain medication drip and placed her on the pill form and was giving her too large a dose. So I called her nurse right away and asked them to lower her dose but instead they changed it to percocet and Dani doesnt do well with that. (its even worse) I tried to tell them but they wouldnt listen. All they needed to do was drop the dose of diludid down from 4 mil to 2 mil.
Diane and I were out in the city making our way to the hospital and we stopped and bought Dani 6 new pairs of pretty sox and stopped at a fruit stand and got her some mango and pineapple. When we got to the hospital we chopped it up and fed her some she ate pretty good but still had the swallowing issue and was still sick to her stomach and not really wanting to eat. We went and bought her some chicken noodle soup but she wouldnt eat any. Friday was just a bad day for her all around.
Then today when we arrived at the hospital she was still feeling sick to her stomach. They still had her on the percocet and again i told them she couldnt tolerate that drug and it was making her sick. Her swallowing issue was still going on too. Diane and I got her to take maybe 3 bites of fruit but she didnt eat any lunch and she was drinking very little water. She said she felt like her food and meds wernt going down all the way. I was still worried about how much she was eating so I took Dion with me a couple blocks from the hospital and I bought Dani some really good potato soup and managed to get her to take about 5 good sips. I was letting her nurse know all these issues and she said she would see if she could get a speech therapist over to listen to her swallow with a stethoscope and see if they could hear anything. (like food going down). But didnt think they could get someone there till monday!! That didnt sit good with me!
Meanwhile I made them listen to my concerns about the percocet and they changed her pain meds back to dilaudid 2 mil this time. The nurse crushed her meds and put them in a spoon of apple sauce and then I managed to get Dani to eat most of the apple sauce. I had been making her drink small sips of water all day to keep her hydrated because they had her back on lasix to reduce the swelling caused from the heart lung machine that she had been on during her surgery. I didnt want her to get dehydrated. WHEW!!!
When I got back here to the house I called Dion to see how she was doing and he told me her pain was much better and she wasnt nausiated anymore since she was back on dilaudid and that she had actually for the first time today gotten up and taken a walk. So im hoping that when I go in tomorrow she will have more of an apitite and we will get the swallowing issue figured out soon. (she was swallowing just great after the surgery) . Could just be a little swelling from the trauma to her trach from being intubated. Doesnt look like we will know much until monday. Oh did I tell you that somewhere between all that I walked Diane over to the train station (just one block from hospital) and sent her on her way back to Georgia. We did manage to have a nice visit even under the circumstances. Shes been a good friend for about 30 years now.
Its 10:27 pm here in philly right now I just called her nurse hoping to hear some good news about Dani before I sign off with all of you. She told me that Dani did manage to eat some of her soup at dinner time and some mashed potatoes and they didnt have to crush her dilauid. She managed to drink it down. She isnt having the nausia that the percocet was giving her and seems to be feeling much better. I just breathed a sigh of relief! Hope you all did too! Goodnight everyone. Vel
Wednesday, May 16, 2012
"A journey of a thousand miles begins with a single step"
Hello everyone, I woke this morning and was getting ready to come see Dani and Dion told me he didnt have such a great night. He was having stomach problems and diareah. We both figured out that it was probably from the steak he ate yesterday for lunch at the cafateria. It was sitting under lights and he ordered it cooked medium rare. So I went out to try and find him some pepto bismol. I walked down 34th street till i got to Walnut street. There was a CVS pharmacy half way down the block. I found some pepto bismol and brought it back to the room for him. I left him there so he could take the medicine and wait for it to work. He told me he would make it over to see Dani and I after he was feeling better.
When I got to Dani,s room my poor little girl was suffering from a migrain headach from the overhead florescient lights. Her nurse had ordered her some tylenol and we were just waiting for it to get there. You would think that one click of her pain button with a shot of dilaudid would have fixed her right up! lol
They came in not long after I got there and pulled out 3 of her chest drain tubes. That was a great moment! It ment that her internal bleeding had pretty much stopped. So now she has just 2 drain tubes left and they will keep an eye on the drainage and if it continues to get better in a few days they will remove those as well. They took out an IV tube that was in her arm. They took out the invasive arterial cardio IV cath going into her neck. (she hated that one!) Her urin cath was also removed. So she can now with a bit of help get up to use the restroom.
Her breakfast came and she ate a bite of pancakes and 2 bites of breakfast sasuage and a good amount of her peaches.
After breakfast the respratory therapists came in and gave her a treatment to help with the flem she had been having a hard time getting up. It went really well they made some progress on getting her to get some of it up.
She had a new nurse named Ryan that was pretty much the nurse from hell. (in a good way kinda) . He turned on this breathing alarm and if Dani didnt take deep enough breaths this crazy alarm would start ringing. He was trying to help her get the flem to start to work its wat up so she could cough it out. And this is how it played out.... Dani would take deep breaths ...then the pain in her chest would come... then she would hit the pain button and instantly it would give her some relief but at the same time it would make her want to slow her breathing and doze off...then the alarm would ring ...beep beep beep ...then Ryan would come in and wake her and tell her "hey its daylight out you need to breath more Dani no sleeping ..you need to take deeper breaths"... so she would consentrate on breathing deep breaths over and over ...then the pain would set in and she would give herself a shot of the pain meds etc etc etc .... it was like a bad dream she couldnt get much rest at all because when she tried to sleep her breathing would slow and the alarm would go off. It got to the point where she had tears in her eyes . Ryan said your going to thank me for this because it will help prevent you from getting pnumonia. Dani just toughed it out and continued to do deep breathing until they came to get her and transfered her to a private room. Its called a step down ward where they transfer patients that still need extra care before they go to a normal ward.
Once she was here they took her from the transport gurney and put her in a recliner chair where she sat for a good part of the day. She ate some fresh pineapple and some steamed carrots for lunch. She wasnt in the mood for the roast beef. She has been drinking pleanty of water and taking in fluids really well.
All of her vital singns have been great! And earlier this evening right after she ate her dinner her nurse came in and she took her first walk! Her nurse said that she did better than most ppl ever do for what she has been through. :)
She is exhausted from her long day. Right now she is resting peacefully and her night nurse patrick has another walk planned for her later tonight and at lease 3 walks tomorrow. Dion made it over here around 12:30 today and is feeling much better. We are both in her room right now and we havnt decided when to go back to the room for the night. I had planned on going back to my house for the evening but its too late to take a bus now so if i do decide I will take a cab.
When I got to Dani,s room my poor little girl was suffering from a migrain headach from the overhead florescient lights. Her nurse had ordered her some tylenol and we were just waiting for it to get there. You would think that one click of her pain button with a shot of dilaudid would have fixed her right up! lol
They came in not long after I got there and pulled out 3 of her chest drain tubes. That was a great moment! It ment that her internal bleeding had pretty much stopped. So now she has just 2 drain tubes left and they will keep an eye on the drainage and if it continues to get better in a few days they will remove those as well. They took out an IV tube that was in her arm. They took out the invasive arterial cardio IV cath going into her neck. (she hated that one!) Her urin cath was also removed. So she can now with a bit of help get up to use the restroom.
Her breakfast came and she ate a bite of pancakes and 2 bites of breakfast sasuage and a good amount of her peaches.
After breakfast the respratory therapists came in and gave her a treatment to help with the flem she had been having a hard time getting up. It went really well they made some progress on getting her to get some of it up.
She had a new nurse named Ryan that was pretty much the nurse from hell. (in a good way kinda) . He turned on this breathing alarm and if Dani didnt take deep enough breaths this crazy alarm would start ringing. He was trying to help her get the flem to start to work its wat up so she could cough it out. And this is how it played out.... Dani would take deep breaths ...then the pain in her chest would come... then she would hit the pain button and instantly it would give her some relief but at the same time it would make her want to slow her breathing and doze off...then the alarm would ring ...beep beep beep ...then Ryan would come in and wake her and tell her "hey its daylight out you need to breath more Dani no sleeping ..you need to take deeper breaths"... so she would consentrate on breathing deep breaths over and over ...then the pain would set in and she would give herself a shot of the pain meds etc etc etc .... it was like a bad dream she couldnt get much rest at all because when she tried to sleep her breathing would slow and the alarm would go off. It got to the point where she had tears in her eyes . Ryan said your going to thank me for this because it will help prevent you from getting pnumonia. Dani just toughed it out and continued to do deep breathing until they came to get her and transfered her to a private room. Its called a step down ward where they transfer patients that still need extra care before they go to a normal ward.
All of her vital singns have been great! And earlier this evening right after she ate her dinner her nurse came in and she took her first walk! Her nurse said that she did better than most ppl ever do for what she has been through. :)
She is exhausted from her long day. Right now she is resting peacefully and her night nurse patrick has another walk planned for her later tonight and at lease 3 walks tomorrow. Dion made it over here around 12:30 today and is feeling much better. We are both in her room right now and we havnt decided when to go back to the room for the night. I had planned on going back to my house for the evening but its too late to take a bus now so if i do decide I will take a cab.
Tuesday, May 15, 2012
"One day at a time-this is enough. Do not look back and grieve over the past for it is gone; and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful it will be worth remembering. Happiness is a journey.
Hi everyone! I know many of you are holding on to the edge of your seats waiting for this blog. So here goes... Dion and I went to bed around 12:30 last night. Right before we went to bed we called to see how Dani was doing. Her nurse said no changes she was resting easy still in the induced coma and very little blood loss and all her vital singes were looking really good.
Again I woke in the middle of the night and called her nurse. Think it was 2:30 am. Her nurse told me and Dion the same, all looked really good. This morning I called at 6:30 close to shift change and didnt get an answer but I remember her telling us about the shift change and not to call so I lay back down till almost 7:00 am and then got up took a quick shower and almost bolted out of the room wanting to get to Dani as soon as possible. Dion was still in bed and asked where I was going. He said that the nurses told us to wait till around 8:30 am to go visit her. But all I can say is that I was in mother mode and I needed to get over to Dani as soon as I could. I asked Dion if he didnt mind if I left to be with her and he said it was fine. And out the door I rushed.
When I got to her room she was still on the ventalator and I said hi Dani and right away her eyes opened. I asked how ya doing honey? Then her pinkie finger started in motion. It was our little sign that she wanted water. I told her that she couldnt drink till she was off the resperator. Then I was talking to her and we got a system going ...pointer finger up and down ment yes...middle finger up and down ment no. Then I asked her does she want to get off the resperator. That pointer finger was wagging like a dogs tail. haha I told her nurse but nurse said they tested her earlier by turning the resperator down and she wasnt breathing well enough on her own to take her off yet. And that when she was awake a little more they would test her again. And boom Dani started blinking at me and blinking and blinking and wagging that pointer finger. (meaning yes i am awake and i want you to get this tube outta my throat!) I told the nurse that she looked like she was coming around and seemed pretty alert. And that she wants that tube out. I asked her a few more questions like are you in pain? Middle finger wagging no pain. ok no pain good! But you want off the resperator? Pointer finger again yes yes yes . Eyes blinking telling me im awake im awake get this tube outta me! Still the nurse said she was gonna have to wait. But she turned down the resperator one more time to see if Dani could breath on her own and I looked her square in the eyes and said " they turned the resperator down to see how well u can breath on your own so breath Dani breath." And right away she just started to show us she could breath on her own. Her chest was rising and falling just great and she just kept blinking like she was saying im awake and I want this tube out as she was showing us she could breath. God its terrible when you know what she wants and u cant do anything about it. Then Dion got there. She blinked some more and we asked her if she wanted her eyes washed. She nodded this time yes. The nurse washed her eyes and I asked if she wanted her glasses and she nodded. So I told Dion I was going to go back to the hotel room and get her glasses.
On the way to her room I called her dad to tell him she was looking good and was full of spit and vinager, what a fighter she is!
When I got back to her hospital room with her glasses the doctor had been by in my absence and checked her over and noticed how well she was doing with her breathing and decided to take her resperator out!!! yeee haaaaaaaaaaa it was 10:00 am in the morning and she had just had 11 hours in surgery the day before, and there she was laying in her bed with her resperator out talking to Dion in whispers. WOW I was astounded! So were the nurses and the doctors on the floor. Usually you dont get it it off for a couple a days after the surgery. Maybe it was the sign language we had between us but I know I did make it clear what my daughter wanted. Thank god!
Right after I got back she told me she wanted a heart pillow so she could cough but it was really hard because she was in alot of pain now. They dont have the heart pillows on the ICU ward but I was directed as to where to get one for her and off I went to 10 floor silverstien building. Dion called me 2 times in my heart pillow hunt asking me if I found one yet, cuz she really needed to cough. I did find one and hurried back to her with a brand new heart pillow. But by then her pain had gotten severe. She was on no pain drip of any kind after they pulled the breathing tube. I called her nurse and she told us that there was a nation wide shortage of dilaudid (the pain meds Dani requested) and that they had a special order from her docs to get it to the hospital right away. It seemed like a lifetime before it got there because of the pain she was in but it was only about 25 min wait for it to get delivered to the hospital. As soon as they hooked it up and put it in her IV they handed her the clicker to administer her own meds. Every 10 minutes she could give herself a shot of dilaudid. It worked instantly! Im not kidding the first click and the medicine went in and all day she has been dealing with her pain wonderfully! By 12:00 noon Her nurse told us that they were going to be talking Dani out of ICU to another floor where she would be in a private room and it would be like ICU but a step down from actual ICU because she was doing so well. Around 2 pm or so they got her out of bed and she actually sat in one of those hospital recliners tilted back just a little with her feet up for about 2 hours. Everyone is just amazed at the progress. She asked for permission to drink a sprite after she had been drinking water and sipping on ice all morning. They told her yes. Then this evening for dinner they brought her jello and broth and she ate almost all of her lime jello. Tomorrow morning they said she will be transported to the new ward with private room and she would be on a regular diet of food. (I swear im not hallucinating all this!) It really hapaned!
Dion and I were with her all day except for the couple of times they kicked us out to get her out of bed to put her in the chair and then back in the bed. We took advantage of those times by going to cafateria and having lunch and over to a little hospital coffer shop and getting some really good cinnamon white choclate espresso with whipped cream. mmmm Dani even snuck a sip of Dions when we got back to the room. (dont tell her nurse) hehe.. It has been an incredable day! An incredible week! An incredible life for our little fighter Dani! Its a story worth telling.. Tomorrow im sure I will have more great tales to tell...im in the loby downstairs again. Its the second night I havnt gone back to my little row house. Its nice knowing im so close to where Dani is. I think it makes it easier for both of us at this point. Well good night everyone... Sleep well...I know i will. :) Vel
When I got to her room she was still on the ventalator and I said hi Dani and right away her eyes opened. I asked how ya doing honey? Then her pinkie finger started in motion. It was our little sign that she wanted water. I told her that she couldnt drink till she was off the resperator. Then I was talking to her and we got a system going ...pointer finger up and down ment yes...middle finger up and down ment no. Then I asked her does she want to get off the resperator. That pointer finger was wagging like a dogs tail. haha I told her nurse but nurse said they tested her earlier by turning the resperator down and she wasnt breathing well enough on her own to take her off yet. And that when she was awake a little more they would test her again. And boom Dani started blinking at me and blinking and blinking and wagging that pointer finger. (meaning yes i am awake and i want you to get this tube outta my throat!) I told the nurse that she looked like she was coming around and seemed pretty alert. And that she wants that tube out. I asked her a few more questions like are you in pain? Middle finger wagging no pain. ok no pain good! But you want off the resperator? Pointer finger again yes yes yes . Eyes blinking telling me im awake im awake get this tube outta me! Still the nurse said she was gonna have to wait. But she turned down the resperator one more time to see if Dani could breath on her own and I looked her square in the eyes and said " they turned the resperator down to see how well u can breath on your own so breath Dani breath." And right away she just started to show us she could breath on her own. Her chest was rising and falling just great and she just kept blinking like she was saying im awake and I want this tube out as she was showing us she could breath. God its terrible when you know what she wants and u cant do anything about it. Then Dion got there. She blinked some more and we asked her if she wanted her eyes washed. She nodded this time yes. The nurse washed her eyes and I asked if she wanted her glasses and she nodded. So I told Dion I was going to go back to the hotel room and get her glasses.
When I got back to her hospital room with her glasses the doctor had been by in my absence and checked her over and noticed how well she was doing with her breathing and decided to take her resperator out!!! yeee haaaaaaaaaaa it was 10:00 am in the morning and she had just had 11 hours in surgery the day before, and there she was laying in her bed with her resperator out talking to Dion in whispers. WOW I was astounded! So were the nurses and the doctors on the floor. Usually you dont get it it off for a couple a days after the surgery. Maybe it was the sign language we had between us but I know I did make it clear what my daughter wanted. Thank god!
Right after I got back she told me she wanted a heart pillow so she could cough but it was really hard because she was in alot of pain now. They dont have the heart pillows on the ICU ward but I was directed as to where to get one for her and off I went to 10 floor silverstien building. Dion called me 2 times in my heart pillow hunt asking me if I found one yet, cuz she really needed to cough. I did find one and hurried back to her with a brand new heart pillow. But by then her pain had gotten severe. She was on no pain drip of any kind after they pulled the breathing tube. I called her nurse and she told us that there was a nation wide shortage of dilaudid (the pain meds Dani requested) and that they had a special order from her docs to get it to the hospital right away. It seemed like a lifetime before it got there because of the pain she was in but it was only about 25 min wait for it to get delivered to the hospital. As soon as they hooked it up and put it in her IV they handed her the clicker to administer her own meds. Every 10 minutes she could give herself a shot of dilaudid. It worked instantly! Im not kidding the first click and the medicine went in and all day she has been dealing with her pain wonderfully! By 12:00 noon Her nurse told us that they were going to be talking Dani out of ICU to another floor where she would be in a private room and it would be like ICU but a step down from actual ICU because she was doing so well. Around 2 pm or so they got her out of bed and she actually sat in one of those hospital recliners tilted back just a little with her feet up for about 2 hours. Everyone is just amazed at the progress. She asked for permission to drink a sprite after she had been drinking water and sipping on ice all morning. They told her yes. Then this evening for dinner they brought her jello and broth and she ate almost all of her lime jello. Tomorrow morning they said she will be transported to the new ward with private room and she would be on a regular diet of food. (I swear im not hallucinating all this!) It really hapaned!
Dion and I were with her all day except for the couple of times they kicked us out to get her out of bed to put her in the chair and then back in the bed. We took advantage of those times by going to cafateria and having lunch and over to a little hospital coffer shop and getting some really good cinnamon white choclate espresso with whipped cream. mmmm Dani even snuck a sip of Dions when we got back to the room. (dont tell her nurse) hehe.. It has been an incredable day! An incredible week! An incredible life for our little fighter Dani! Its a story worth telling.. Tomorrow im sure I will have more great tales to tell...im in the loby downstairs again. Its the second night I havnt gone back to my little row house. Its nice knowing im so close to where Dani is. I think it makes it easier for both of us at this point. Well good night everyone... Sleep well...I know i will. :) Vel
Monday, May 14, 2012
"Dont believe in miracles... depend on them"
About 10 1/2 hours in surgery I was beginning to worry. Thats so long on the heart lung maching im thinking to myself. Deon and I watched so many ppl come and go all day in the surgical waiting room. New aortic valves and double lung transplants, open heart bypass surgeries, just endless array of different surgeries as the hours ticked away all the while our Dani was in surgery fighting for her life. We only had 2 reports the whole day of how her surgery was going. And every time they called us, our heart would sink with worry about what they might be there to tell us.
Then at the 11th hour I walked up to the nurses desk to ask if there was any word on my daughter and she said yes. We just got a message that they are finishing up with your daughters surgery and she will be transported to the 5th floor founders building ICU. I just look right into that ladies eyes and said "She made it?" and she smiled right back at me and said yes she made it! She handed me a note with her room number on it and told me to wait till the doc came down to talk to us. I turned to walk over to Dion with tears in my eyes and huge relief on my face and half the people in the waiting room started to clap for us. We had all been exchanging stories about out family members and Dani's story had captured so many hearts. Boy what a hug I got from Dion when I told him she made it through her surgery!
Soon the nurse came and got us and took us to 5th floor founders 5th floor founders 5th floor founders 5th floor founders ...try and say that 10 times..... hahaha ... just as we stepped off the elevator there was a doctor there to greet us and tell us how her surgery went. He said he was there for her whole surgery and that her heart looked good. She had some extra bleeding during the surgery and the hematoma was huge. But they managed to get all the bleeding under controll with drugs and fixed the hematoma. He said she now has a new aortic mechanical valve a new mitro mechanical valve and a new aortic graft. I think that qualifies her to be the NEW BIONIC WOMEN. Doesnt it?? He said it was very complicated because her tissue was very slushy and it was like sewing with a needle and thread into butter. I asked him how did he manage to do it? He said..."We just took our time and made very intricate stitches on her. Thats what took us so long." Then he told us we could go see her for a little while but that we needed to go get some rest because she was going to need us in the morning when they start to take her off the induced coma. The next few days will be tough ones and they will be watching her for any signs of internal bleeding but so far she was looking good.
When we got to her room ... she looked good her color was great. They had a warming blanket on her to bring her body temp back up as she had been in a very cold state during the surgery to protect her other organs. She was on a resperator but seemed to be resting easy. She had drain tubes in her lower chest just under her rib cage and a drain tube where the hematoma had been.
The nurse let me and Dion listen to her heart it sounded so great! Just ticking away like a timex watch! Maybe we should nickname her timex. (takes a licking and keeps on ticking) heheh lol we stayed with her and talked to her for about an hour or so.
Then we decided to come back to the Penn Tower and try and get some sleep so we can be there to support Dani as she comes out of her coma tomorrow. When we left her body temp had risen to 96 degrees and they said they would take the heating blanket off when it reached 97 but that she looked great and her blood loss at the time was not looking bad at all. She has her own nurse one on one. And she told us she was looking good.
Im sitting down here in the main loby of the Penn Tower right now.. there is no internet in the room but i can pick it up down here. Its late so I'll let you all go for now. Thanks everyone for all your prayers and support. I will post more tomorrow about her progress. :) Vel
Then at the 11th hour I walked up to the nurses desk to ask if there was any word on my daughter and she said yes. We just got a message that they are finishing up with your daughters surgery and she will be transported to the 5th floor founders building ICU. I just look right into that ladies eyes and said "She made it?" and she smiled right back at me and said yes she made it! She handed me a note with her room number on it and told me to wait till the doc came down to talk to us. I turned to walk over to Dion with tears in my eyes and huge relief on my face and half the people in the waiting room started to clap for us. We had all been exchanging stories about out family members and Dani's story had captured so many hearts. Boy what a hug I got from Dion when I told him she made it through her surgery!
Soon the nurse came and got us and took us to 5th floor founders 5th floor founders 5th floor founders 5th floor founders ...try and say that 10 times..... hahaha ... just as we stepped off the elevator there was a doctor there to greet us and tell us how her surgery went. He said he was there for her whole surgery and that her heart looked good. She had some extra bleeding during the surgery and the hematoma was huge. But they managed to get all the bleeding under controll with drugs and fixed the hematoma. He said she now has a new aortic mechanical valve a new mitro mechanical valve and a new aortic graft. I think that qualifies her to be the NEW BIONIC WOMEN. Doesnt it?? He said it was very complicated because her tissue was very slushy and it was like sewing with a needle and thread into butter. I asked him how did he manage to do it? He said..."We just took our time and made very intricate stitches on her. Thats what took us so long." Then he told us we could go see her for a little while but that we needed to go get some rest because she was going to need us in the morning when they start to take her off the induced coma. The next few days will be tough ones and they will be watching her for any signs of internal bleeding but so far she was looking good.
When we got to her room ... she looked good her color was great. They had a warming blanket on her to bring her body temp back up as she had been in a very cold state during the surgery to protect her other organs. She was on a resperator but seemed to be resting easy. She had drain tubes in her lower chest just under her rib cage and a drain tube where the hematoma had been.
The nurse let me and Dion listen to her heart it sounded so great! Just ticking away like a timex watch! Maybe we should nickname her timex. (takes a licking and keeps on ticking) heheh lol we stayed with her and talked to her for about an hour or so.
Then we decided to come back to the Penn Tower and try and get some sleep so we can be there to support Dani as she comes out of her coma tomorrow. When we left her body temp had risen to 96 degrees and they said they would take the heating blanket off when it reached 97 but that she looked great and her blood loss at the time was not looking bad at all. She has her own nurse one on one. And she told us she was looking good.
Im sitting down here in the main loby of the Penn Tower right now.. there is no internet in the room but i can pick it up down here. Its late so I'll let you all go for now. Thanks everyone for all your prayers and support. I will post more tomorrow about her progress. :) Vel
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