Sorry I didn't Blog yesterday, but I needed rest and a break from it all.
A group of us meet with Children's Organ Transplant Association (COTA) to help us get organized and ready for any fundraising events we will be holding to raise funds to help pay for Lindsay's lung transplant expenses. Out of pocket expenses are estimated to be about $55,000. We have a very ambitious group and creative ideas for events. You can now go online and donate at http://www.cotaforlindsaym.com/ You may also write a check, but it needs to be made out to COTA and in the memo put 'Lindsay M.'
I didn't see Lindsay yesterday, but I spoke with her today and she is still in pain from the chest tubes been taken out since yesterday. The nurses say she should not be experiencing this much pain still. So they may want to keep her an extra day in the hospital and on top of that one of her prescriptions will not be ready until 2pm tomorrow. They will not let her discharge unless she has all of her prescriptions with her. So I will be waiting for a call tomorrow when they are ready and I will shoot up to the hospital to see if they will let her leave or not.
Please pray for Lindsay that the Lord will subside her pain so she can be more comfortable because she has been through so much. She will also need prayers that her body will not reject the lungs and for her to stay healthy because she is more susceptible to infection. But importantly give praise to Him that she is alive & well and that she can live to see her dreams with these new lungs.
I just got a text from Lindsay that she weighs 97 lbs! She went in at 89 lbs. Praise God!
Sunday, May 10, 2009
Friday, May 8, 2009
Go Fish
I stayed with Lindsay last night in her hospital room and I now have a better understanding of why people don't like to stay in hospitals! We went to bed kind of late and she woke up twice to cough and at 6 am a nurse came to check her vitals. There must also be something about sleeping in an unfamiliar place that doesn't help either.
*Morning Dose*
Unfortunately, Lindsay's morning x-ray shows she has fluids in her chest, so they will not be taking out the chest tubes until tomorrow :( She didn't get her PICC line either, but she got a Tunnel Venous Catheter instead. It is the same thing except it is put into her chest instead of the arm. A persons body can handle a few PICC's in a life time and Lindsay has already had 4. It eventually damages the vein and is harder to get placed. So the nurse went with the Tunnel Cath instead. We are still on schedule for moving to the apartments on Monday and answer to prayer...it will be covered! We were told at 1st we would have to put down some deposits (cleaning & linens) and pay a daily rate. It would have been anywhere from $15 - $75/day. We were hoping for $15 but as of this morning we received good news that it will be taken care of. We have been praying that the Lord will provide for us and He is doing just so! Lindsay's spirits are high...she is singing, laughing, smiling, planning her future, and she is getting back to her normal self. (Besides when medicated)
Here is the fun stuff...
Since Lindsay has her chest tubes in, she is experiencing a lot of pain. When they are taken out she expects to be fully independent. She has been taking pain meds, but yesterday the nurse decided to 'up' the dose since it wasn't helping much. Her first larger dose was given last night with Sid and I in the room. Although it is not the goal to knock her out, it is to subside the pain. Lindsay spilled water on herself so we changed her and the bedding. I cut her finger nails cause they were a bit long. By this time her meds kicked in. The second we put her back in bed she was out! Sid saw her tongue hanging out of her mouth. It was hilarious! I feel bad that it is comedy to me at her expense, but there is nothing like watching your sister act with heavy medication. Today she was having more pain so she got more pain meds.
I broke out the playing cards so I can play because I knew she was going to sleep. But she saw them and wanted to play anyway. I decided on Go Fish because I felt it was the easiest game to play. I wish you were all there to see it! I passed out the cards and she started taking from the pile. She never asked me for any cards she just started taking them. I called her a cheater and she finally realized what she did. She was slurring her words a bit so I laughed as she told me to 'Go Fish' and later in the game she asked for an '8' so I gave it to her and she tried to pair it with an 'Ace.' When I asked her for matches she told me I was evil "taking from a crippled person." By the looks of the pictures I should have won but Lindsay won the game. I have a new camera courtesy to the Allen family, so now I can keep you updated with pictures as well. Enjoy!
Since Lindsay has her chest tubes in, she is experiencing a lot of pain. When they are taken out she expects to be fully independent. She has been taking pain meds, but yesterday the nurse decided to 'up' the dose since it wasn't helping much. Her first larger dose was given last night with Sid and I in the room. Although it is not the goal to knock her out, it is to subside the pain. Lindsay spilled water on herself so we changed her and the bedding. I cut her finger nails cause they were a bit long. By this time her meds kicked in. The second we put her back in bed she was out! Sid saw her tongue hanging out of her mouth. It was hilarious! I feel bad that it is comedy to me at her expense, but there is nothing like watching your sister act with heavy medication. Today she was having more pain so she got more pain meds.
I broke out the playing cards so I can play because I knew she was going to sleep. But she saw them and wanted to play anyway. I decided on Go Fish because I felt it was the easiest game to play. I wish you were all there to see it! I passed out the cards and she started taking from the pile. She never asked me for any cards she just started taking them. I called her a cheater and she finally realized what she did. She was slurring her words a bit so I laughed as she told me to 'Go Fish' and later in the game she asked for an '8' so I gave it to her and she tried to pair it with an 'Ace.' When I asked her for matches she told me I was evil "taking from a crippled person." By the looks of the pictures I should have won but Lindsay won the game. I have a new camera courtesy to the Allen family, so now I can keep you updated with pictures as well. Enjoy! *Lindsay took this one of herself*
*Morning Dose*Thursday, May 7, 2009
*Pictures* Some May Be GRAPHIC
I got the okay from Lindsay to post some pictures! I don't have to many but at least you get to see some. Brie has more on her camera, so eventually we will get them up here as soon as we can.
Lindsay gets her chest tubes out tomorrow and she will be getting a PICC line which is basically a home IV. She will have the PICC for about 2 weeks. Monday we will be the day we most likely move across the street. She went on another walk today and it was a bit longer than the day before.
***OK here are photos of her old lungs. Please turn away if you need***
*Pink Respirator* *Cute DO*
*Her Incision Scar*
Wednesday, May 6, 2009
Moving Forward
Lindsay had a very productive day today. Her pain has subsided immensely and she still is very exhausted. She mentioned she went a on walk that was about 30 feet long. She had to wear her respirator which is pink, but I think she rather have a purple one instead. For lunch Lindsay had...solids! She savored her beef stroganoff and the look on her face when she ate that Oreo brownie was priceless for Jared & Nicole. We were talking about her feelings about the transplant and she is happy she did it. No regrets. Of course she knows it will not be smooth sailing ride because of all of the changes that will be coming her way, but she can't wait. Things she will have to get used to and learn are breathing properly, restrictions for the first few months and new medications. She has been breathing with the top of her lungs and in her shoulder area, but her Physical Therapist wants her to learn to breathe with the lower part of her lungs to get good deep breaths and get the full affect of her "Big Boy Lungs." I just learned that inside joke toady. It is said the donor is a male and while her and her friends were waiting for operation time, Lub said "Now you'll be getting your Big Big Lungs." We have no other information about the donor and we will not know until Lindsay is ready to contact the family. BUT it is up to them to respond.
Another thing she will have to get used to is all of the medication she will have to take. Prior to the lung transplant she had a pretty heavy regime to begin with. Mostly all of the meds she was on before will be non-existent. No more inhalers, breathing machines, oxygen concentrators and no more vest (percussion therapy). Anything related to the lungs will be replaced with meds, but she will have the same meds for the digestive part of the disease. She will be on anti-rejection, anti-infection and supplements. Oh yes I can't forget those enzymes. In essence, Dr's have been telling her she is trading one disease for another one. She still has Cystic Fibrosis because it is in her digestive system as well. I wonder if she can be cured if she got a pancreas transplant!?!? Huh, I should become a Dr. and experiment.
Tomorrow will be a new day as we both get pointers to get us ready for discharge. We are hoping Monday. Lindsay will need to memorize her medication schedule and brush up on her do's and dont's & I will get a tour of the hospital so we know where to bring her for clinic and appointments. I will let you all know how that goes.
Good Night!
Another thing she will have to get used to is all of the medication she will have to take. Prior to the lung transplant she had a pretty heavy regime to begin with. Mostly all of the meds she was on before will be non-existent. No more inhalers, breathing machines, oxygen concentrators and no more vest (percussion therapy). Anything related to the lungs will be replaced with meds, but she will have the same meds for the digestive part of the disease. She will be on anti-rejection, anti-infection and supplements. Oh yes I can't forget those enzymes. In essence, Dr's have been telling her she is trading one disease for another one. She still has Cystic Fibrosis because it is in her digestive system as well. I wonder if she can be cured if she got a pancreas transplant!?!? Huh, I should become a Dr. and experiment.
Tomorrow will be a new day as we both get pointers to get us ready for discharge. We are hoping Monday. Lindsay will need to memorize her medication schedule and brush up on her do's and dont's & I will get a tour of the hospital so we know where to bring her for clinic and appointments. I will let you all know how that goes.
Good Night!
Tuesday, May 5, 2009
Lindsay's Notes to the People
Lindsay wanted me to share with her followers and readers some updates:
*She wants to be off her clear liquid diet cause she needs real food, but unfortunately Doctor's order. They are taking precautions because there is a chance she can aspirate food into her new lungs and that could be fatal. Her meals consist of broth, jello, cranberry & apple juice, and Italian ice. Craig already tried bring Jamba Juice, but it was a no-go.
* As soon as the Dr. brings Lindsay a new/special mask she will be able to exercise by walking the halls. (I assume it is some type of respirator.) She feels weak because she has done no walking.
*Prior to her transplant her lung function was at 27%. You and I would be around 98-100% possibly higher. She won't be able to do the breathing test that measures until a few months but she will be glad to have 50%. I think she will do higher, but she would love to see that # because she has been between 19 and 29% for so long. I don't remember the last time she was above 30. She was off her oxygen today, but later in the afternoon her O2 saturation was fluctuation between 89 and 94. so the nurse decided to put her on 1 liter of O2. Lindsay was bummed because she was trying to go all day without it but the nurse said 1 liter won't set her back to much. You know Lindsay, always trying to be strong and independent.
*The nurse gave her a list of oral medications she will have to memorize and take. She has to memorize the name, dose (how much & when) and what the pill does for her. This list consist of 16 medications. Some are duplicates because of the dosage and some will be weened away in a short time. The Dr. will decide that. Lindsay will be on most of the medications the rest of her life to prevent rejection of the lungs. Most people think she would have rejected them already but there is always a chance of rejection later on.
*Lindsay was trying to remember what day it was and she mentioned she lost a day. I told her that was fine because she has gained more life with the new lungs.
*To break in these new lungs Lindsay needs to cough and blow in to a breathing apparatus. Her coughs were excellent and productive today but it hurts her to cough, so she hugs a pillow on her chest for relief. Her hiccups feel great. She tries to blow into the apparatus at least 10 times every hour to make her lungs stronger.
*On a scale of 1 to 10 her pain is a 4. It is mostly the incision and her throat. Her throat doesn't hurt as much because the tubing was removed, but she said her throat was traumatized by the tubing.
She got her hair washed in a shower cap today by Janis, Jenna, Amie and myself. When she is in the hospital she loves to have her hair braided so it is out of her way and Janis came on her lunch to do it for her. After everyone left we both took long naps. It was well needed. Lindsay is now able to get out of bed (with help) and walk around her room and to the bathroom. She decided to try to eat some warm broth today because she wasn't feeling as hot as yesterday and she said it felt nice to eat something warm. She started to move her head as if she was dancing and snapping her fingers. It was hilarious. I wasn't to sure if that was her or the meds. Speaking of warm, Lindsay had a hypersensitivity reaction to one of the meds. Her arms and face were quite red and flushed and we were told she has 'Red Man Syndrome' as a side effect. It is normal and should go away after the first few doses. She will not be on this medication after she leaves the hospital, so we are good.
Susan thanks for the $6. They wouldn't let me leave.
Keep checking back for more posts and hopefully I can get some pictures up for you. It is a little hard because I don't have a camera so I have been using Dads and I don't have his camera program on my computer.
*She wants to be off her clear liquid diet cause she needs real food, but unfortunately Doctor's order. They are taking precautions because there is a chance she can aspirate food into her new lungs and that could be fatal. Her meals consist of broth, jello, cranberry & apple juice, and Italian ice. Craig already tried bring Jamba Juice, but it was a no-go.
* As soon as the Dr. brings Lindsay a new/special mask she will be able to exercise by walking the halls. (I assume it is some type of respirator.) She feels weak because she has done no walking.
*Prior to her transplant her lung function was at 27%. You and I would be around 98-100% possibly higher. She won't be able to do the breathing test that measures until a few months but she will be glad to have 50%. I think she will do higher, but she would love to see that # because she has been between 19 and 29% for so long. I don't remember the last time she was above 30. She was off her oxygen today, but later in the afternoon her O2 saturation was fluctuation between 89 and 94. so the nurse decided to put her on 1 liter of O2. Lindsay was bummed because she was trying to go all day without it but the nurse said 1 liter won't set her back to much. You know Lindsay, always trying to be strong and independent.
*The nurse gave her a list of oral medications she will have to memorize and take. She has to memorize the name, dose (how much & when) and what the pill does for her. This list consist of 16 medications. Some are duplicates because of the dosage and some will be weened away in a short time. The Dr. will decide that. Lindsay will be on most of the medications the rest of her life to prevent rejection of the lungs. Most people think she would have rejected them already but there is always a chance of rejection later on.
*Lindsay was trying to remember what day it was and she mentioned she lost a day. I told her that was fine because she has gained more life with the new lungs.
*To break in these new lungs Lindsay needs to cough and blow in to a breathing apparatus. Her coughs were excellent and productive today but it hurts her to cough, so she hugs a pillow on her chest for relief. Her hiccups feel great. She tries to blow into the apparatus at least 10 times every hour to make her lungs stronger.
*On a scale of 1 to 10 her pain is a 4. It is mostly the incision and her throat. Her throat doesn't hurt as much because the tubing was removed, but she said her throat was traumatized by the tubing.
She got her hair washed in a shower cap today by Janis, Jenna, Amie and myself. When she is in the hospital she loves to have her hair braided so it is out of her way and Janis came on her lunch to do it for her. After everyone left we both took long naps. It was well needed. Lindsay is now able to get out of bed (with help) and walk around her room and to the bathroom. She decided to try to eat some warm broth today because she wasn't feeling as hot as yesterday and she said it felt nice to eat something warm. She started to move her head as if she was dancing and snapping her fingers. It was hilarious. I wasn't to sure if that was her or the meds. Speaking of warm, Lindsay had a hypersensitivity reaction to one of the meds. Her arms and face were quite red and flushed and we were told she has 'Red Man Syndrome' as a side effect. It is normal and should go away after the first few doses. She will not be on this medication after she leaves the hospital, so we are good.
Susan thanks for the $6. They wouldn't let me leave.
Keep checking back for more posts and hopefully I can get some pictures up for you. It is a little hard because I don't have a camera so I have been using Dads and I don't have his camera program on my computer.
Monday, May 4, 2009
Out Of ICU!
We were expecting Lindsay to be moved out of ICU today and she was moved around 5:45 p.m. Possibly in the next week (7-8 days) we will be moving to the apartments across the street for a month or so. She is now in her own room so hopefully she can get some sleep. Lindsay didn't get much sleep last night because unfortunately her roommate was keeping her up.As Amie, Brie and I walk into her room this morning we noticed her hair. It was the cutest 'do' ever. Brie had asked her who did it for her and she said "my bed." It was just up in a pony tail but was sticking straight up. By the way she wants me to tell all of you guys she is "looking good." I got to watch her get out of her chair and walk to her bed. Of course she had help but she was doing most of it on her own. The nurse told her she was dancing because she had to waddle to get to the bed. 2 of her 4 chest tubes were taken out today and she is also hooked up to less IVs. Tears always come to my eyes because she surprises me every day on her great progress.
This photo was taken on day 2. She looks like the same Lindsay (well except for the hospital gear) but she is heavily medicated so she has her moments of looking her best! Her pupils are extremely small. I will post a photo of her cute hair do as soon as I can. I know you can't see much but you can see the smile on her face and how fast she is recovering only after 2 days.
Sunday, May 3, 2009
She Needs Rest
Today when I went to see Lindsay she was sitting up in a chair. They have her out of bed in a chair, how amazing is that?! Today she was feeling more pain in her chest, but had plenty of rest. Lindsay was also given apple sauce to take some pills as well as water, jello and ice chips. She was woken up every hour last night so the nurse can issue meds and Lindsay was also requesting meds because she woke up screaming twice in pain. Our 4 o'clock visiting hour was cancelled today, so she can get some sleep. It was a good thing it was cancelled because she got about 3 hours of sleep. She really needed it.
She has a large following in the ICU, so I am sure we really wipe her out too. Her throat still hurts and she doesn't seem to have energy just yet so some times her and I just stare at each other instead of talking so she can be comfortable and not be overwhelmed. Her favorite thing to do is hold our hands. I love the way she reaches out to us to hold her hand. We are all very excited to be there for her and we try to rotate so every one gets a chance to see her, but I can tell she gets tired. By the time her 10 o'clock visiting hour hit she was passed out so we decided to leave and let her rest and recover.
Missy (Lindsay's roommate) and her mother& sister came to visit and brought Lindsay a stuffed, red heart with arms. It is so cute and I am sure she enjoys it. We are being told she is not allowed to accept flowers at this time. So thank you for your kind gestures, but we cannot accept flowers. If you like you can take the money you were going to buy flowers with and possibly donate to Lindsay's fundraising website. Unfortunately, it is not up yet, but I am meeting with the coordinator this Saturday to get more info about the website.
I'll keep you posted.
She has a large following in the ICU, so I am sure we really wipe her out too. Her throat still hurts and she doesn't seem to have energy just yet so some times her and I just stare at each other instead of talking so she can be comfortable and not be overwhelmed. Her favorite thing to do is hold our hands. I love the way she reaches out to us to hold her hand. We are all very excited to be there for her and we try to rotate so every one gets a chance to see her, but I can tell she gets tired. By the time her 10 o'clock visiting hour hit she was passed out so we decided to leave and let her rest and recover.
Missy (Lindsay's roommate) and her mother& sister came to visit and brought Lindsay a stuffed, red heart with arms. It is so cute and I am sure she enjoys it. We are being told she is not allowed to accept flowers at this time. So thank you for your kind gestures, but we cannot accept flowers. If you like you can take the money you were going to buy flowers with and possibly donate to Lindsay's fundraising website. Unfortunately, it is not up yet, but I am meeting with the coordinator this Saturday to get more info about the website.
I'll keep you posted.
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