April 12, 2017
It has been a long time since I did an update! I praise God for these lasts 28 months. Although things have not gone smoothly, I am alive and breathing! I no longer live in Jenison. Wyoming is now home. A condo was a better fit for my handicap. God has blessed me with ability and strength to babysit my grandkids while their parents work. My lymphoma (caused by transplant) is in remission. My lung capacity is steady. I still have acid reflux(also caused by surgery) so may need surgery on that someday. My osteoporosis(caused by medication) is still an issue. Thank you all for your prayers!
October 30, 2015
Wow! Has it really been 5 months since the last update?! So much has happened since then. Unfortunately, this update is not going to be an easy one. My mom has been having tooth pain lately and she went into the oral surgeon to see what's going on. They found an infection in her jaw that pretty bad. She is having surgery on her face to remove as much infection as they can and they will also do a biopsy on the bone. The doctor's just want to be sure it hasn't spread to the bone.
In addition to all of that, during some routine testing the doctors found cancer in my mom's new lungs. It's a rare form of cancer but they are optimistic about treatments. She is getting a biopsy done today to see what treatment will be needed. It can range from lowering her anti rejection medication (so her body can fight it off), oral medication, or chemo.
While she is in the hospital she is keeping up with her physical therapy as she is still recovering from her stroke. Her left foot isn't functioning as well as we would like it too. We are praying that the cancer treatment won't slow down the progress that she has made so far.
We are praying for the best and my mom is in good spirits. It's just crazy to think how much she has been through and it isn't even her one year anniversary with her new lungs.
May 28, 2015
I stole this from my mom's Facebook :)
I have discovered a reason to think twice before lung transplant. LOL. I have gone many years without getting misquito bites, because I retained my carbon dioxide. (They are attracted to carbon dioxide that you exhale.) I have gotten more bites in last week then I had over last 10 years thank to my lungs exhaling carbon dioxide! I will live with sprays and bites so I can breath!
May 17, 2015
It's been forever and a day since the last update. This is her daughter updating and I'm actually in Alaska. The last time I was with my mom she was home and trying to adjust. This was in march.
Since then my mom has fractured her back. I know, one thing after another. They put her in a back brace and thankfully she is now able to go without it. She still has 4 weeks of limited mobility to make sure everything heals.
Her lungs are doing amazing still. She still has effects from the stroke. She is trying to regain movement in her left leg. My mom is walking with a walker and hopefully she will be able to make progress and start using a cane.
Thanks so much for the continued prayers, support, and donations!
Roxi
February 22, 2015
My mom is FINALLY home! It's going to be quite the transition but after months and months in the hospital there is no place like home!
Her new lungs are doing great but she is still working on getting movement in her left leg. She is able to walk with a walker but when she is sitting or lying down her left leg has no movement.
Prayers for continued strength and patience for everyone as we all adjust to my mom being home.
January 18, 2015
It's been awhile since I updated but my mom was just moved into an acute rehab facility yesterday! She still has a small leak in her left lung but we are hoping and praying that it will heal in its own. Now my mom will be able to get three hours of therapy a day in hopes that she will regain function in her left leg and start to be able to do more for herself.
January 1, 2015
As a new year begins, so do new dreams. These dreams are temporarely on hold. We are continually looking for a small air leak in her lungs. With this small leak its allowing the lung to collapse. Its like having a small hole in your inner tube on your bike tire, it just wants to go flat. With a tube still in her left lung, they have suction running through it keeping it inflated.
They're running different test and scan in hopes of finding this mystery air leak. While looking for this leak we are missing out on valueable rehab time to regain some of those lost motor skills from the stroke.
December 27, 2014
The issues at hand is not so much with the lungs but with the stroke side effect. For a little bit of back ground. Wanda had a stroke after a couple of days of recovery from operation. She was recovering with great movement through out her whole body, she was even sitting up in a chair enjoying life. After a morning of sitting in a chair she returned to her hospital bed. From there it went down hill. She appeared to have had a mini stoke, which later turned into a code blue. a medical emergency. This led up to that unthinkable condition. Being totally immobile in all your limbs. Just the thought of having your mind working with out missing a beat but having it trapped in a prison cell namely our body. At this point in time they are not sure what caused the stroke.
Life continues to move forward, sometimes in positive manner and sometimes a few step backwards.
Moving forward is what we are doing now. We have been blessed by God to see some of Wanda's limbs starting to come alive. This is so exciting to see, its as if there is new life coming alive right in front of our eyes. There are moments in our minds when we don't see any progress which drives depression and doubt. Other days where we see new movement, this brings out great joy and celebration.
Currently Wanda has gained good movement in her right arm and more every day in her left arm. The legs seem to still be lagging a little behind as the right leg has some movement but the left is not picking up the hint that it needs to carry its own weight. With the lack of mobility , it keeps her from being able to physically adjust herself in bed or in a chair as she sits. This is an area of frustration.
We are excited as we continue to pray and have therapy, and we look for those small rays of hope as we continue thru this journey.
December 27, 2014
Things are on the move. Since the last report things keep moving forward in a positive direction. Wanda has her trach tube out now. With the time leading up to the removal there was that fear moment. The moment where they say you are totally on your own with your new lungs. Its was your backup if something went wrong. But now it will be gone for good. Some times the toughest times are the emotional ones verses the physical ones.
Since the transplant of her lungs her oxygen stats have been great, shes been able to enjoy life with out any type of oxygen assistance.
December 16, 2014
My mom was finally able to get a good night's rest! The doctor and nurses worked it out so that she could have 6 hours of uninterrupted sleep (unless she called the nurse). She was able to get that rest but did have to call the nurse once because she was having more back pain. Part of that pain is because she is so skinny that her spine and tailbone aren't protected by any fat (the opposite problem that I have). So when she is laying flat on her back it gets tender. The doctor was able to prescribe her an air mattress (thanks to the suggestion of a great friend!) and she said it makes such a difference! But, the pain was made worse when the x-ray team shoved a board under her back yesterday morning. Since then she has said the pain has been worse. She is on tylenol, but isn't able to take anything stronger. Her doctor is quite the drill sergeant (but in a loving way, which sounds insane) and doesn't want her to be on any narcotics or sedatives because it will hinder her recovery.
Yesterday was rough on my mom, I think that the mixture of being in the hospital for 2 months, getting a transplant, having a stroke, not being able to talk, people not understanding her, not being able to eat, and no sleep finally got to her. The doctors told her that she wasn't going to be able to come home for Christmas and she broke into tears. She knew that in reality she wasn't going to be able to be home for the holidays, but hearing it aloud was rough. Instead we are looking at the bright side of things and aiming to be in a new room by next week. That way my family is able to bring Christmas to her.
Today though, is a new day, and it was been filled with great news! She is going to be getting another chest tube taken out (it is a tube for drainage from her new lungs). That leaves only one more to go! One less tube to worry about. They also told her that her digestive track is looking much better so NO MORE SURGERY!!! That is such a huge deal. The doctors also have her back on her feeding tube which means that the majority of her IV's will go through there too, so it will be less cords and tubes attached to her.
They are also going to downsize her trach in her throat. That means that she will be able to talk! It will be such a relief to her. Also, after a swallow study, she will be able to start introducing foods into her diet. She is just looking forward to ice chips at this point. I can't imagine going weeks without real food! She said that she is dying for a hamburger...hopefully soon! The head doctor of her case said the goal is, if she can keep her oxygen stats up on her own, the trach will be out in no time.
Later in the afternoon, they are going to take her completely off oxygen and have her on room air. They did have her off oxygen completely the morning before she had the stroke, and they are trying to get her back to that. Right now she is barely getting assistance from the oxygen and they don't think she is going to have any problems. Yesterday she was so congested and it caused her oxygen stats to drop but today it's cleared up she is breathing great.
Like every morning they have her sitting in a chair, today though she sat for almost 2 1/2 hours! She even did her physical therapy workouts. I can tell she is feeling so much better because she did some online shopping on the computer (without my help) and has been smiling ear to ear since she woke up. Right now she is actually doing therapy, and she was able to sit up on her own! That is such a huge deal because just a few days ago she wasn't able to hold up her own weight. Hopefully within the next week they can get her standing on her right leg (her left is still to weak at this time.)
I leave tomorrow afternoon and even though that is going to be hard on both of us we know it's just a "see you later". For me, I am worried about her being alone during the day and night when my dad or grandma can't be there. Also I am concerned that my mom isn't able to remember everything the doctors tell her, not that she isn't capable, but just that she gets an overload of information and I am her second set of ears. I know that she will be just fine, but it's just letting that go and trusting others to do that for her. (It's one of the major things I have to work on, I'm kind of a control freak). For my mom, it's just her being a mom. She wants all of her children together and the fact that I am going to Alaska makes it that much harder to see me go. We know that it will be okay though, it's just going to be a little rough.
Pray for my mom to stay in high spirits even during the lows, for the nurses to be gentle and kind that are taking care of her, and for her to keep on making improvements!
December 15, 2014
I am sorry that I haven't updated in awhile, things have been super busy! I will update you on everything that has been going on this past week.
My mom is making great progress!! She still has some hurdles to cross over but it's baby steps, one day at a time. She is SO busy everyday. She does physical therapy and occupational therapy everyday. On top of that she has procedures, the nurses coming in and out, and guests visiting. She is not one who normally takes naps and now she takes on every afternoon.
She is slowly gaining her strength and is getting movement back in her arms and legs. Today specifically she moved her left arm! That is a big deal! She hasn't been able to move it since the stroke last Sunday. There is still no movement in her left leg, and she is able to slightly move her right. She isn't able to move her toes as well, but we have heard that it is sometimes the last thing to regain movement after having a stroke.
She has a trach put in her throat, that happened two days after the stroke. Because of that she isn't able to talk, only mouth words. They are hoping to put in a smaller tube so she will be able to speak in about a week. She will need to have a speech therapist though, because the tube makes talking a little more difficult. We have all become expert lip readers though!
My mom also has a feeding tube. They haven't tried her on any "real" food yet, because they don't know how she will do with swallowing. They will do what is called a swallow study to determine if she is able to have some regular food back into her diet. I can't imagine not being able to eat food for over a week, my mom is a champ!
We are very optimistic though, and we are seeing progress every day. There are days that she is frustrated, angry, sad...normal emotions that anyone would feel going through this. It's crazy to think of everything that she has gone through since she was admitted into the hospital. We are so happy though that her new lungs are strong and make recovering from this stroke somewhat easier for her.
Her goal was to be out of the hospital before Christmas and we know that isn't going to happen. Hopefully she will be able to move out of ICU before Christmas and be home not too far into 2015.
I say this every time, but we are overwhelmed with the donations that we have recieved in honor of our mom, it makes her recovery just that less stressful on both her and our dad. Thank you for all of the support, prayers, and donations! If you get a chance please share this on social media! One of our goals is to bring awareness to organ transplant. Thanks from the bottom of our hearts!
Roxi Diaz (Wanda's Daughter)
December 10, 2014
Continued prayers for my mom. It's so hard to see her be so uncomfortable and not be able to help. Tomorrow she is getting her feeding tube in her stomach and a tracheatomy . She is going to love it, she absolutely hates the tube down her throat. She made huge progress since yesterday, she is able to respond to questions by nodding or shaking her head and she is able to mouth words. I told her I loved her and she mouthed the words "I love you more." She needs to work on the movement in her right hand, she doesn't have control of her fingers yet. Also her left arm, she was only able to squeeze our hand. And function of both legs. She can't wiggle her toes but will push against someone's hands if they are holding her legs. We just have to take each day, one day at a time. My mom is the toughest woman I know and she isn't going to let a stroke hold her back from using her new lungs!
Roxi Diaz (Wanda's daughter)
December 9, 2014
There have been so many improvements since yesterday! Mom is still on a ventilator, and they are debating on whether to give her a trachaeotomy or let her breathe on her own. If they let her breathe on her own they are worried that her brain might not be able to continue to tell her to breathe. Also, with her new lungs, they don't want any secretions to go into them. She is also getting a feeding tube in her stomach tomorrow, they have to give her a couple shots of steriods because she is allergic to the dyes that the will be using.
Now for the IMPROVEMENTS! Before today she wasn't showing any movements in her left side, but now she is able to squeeze with both hands and show resistance in both legs. When she is asked to move her toes, she doesn't show any movement but with physical therapy it should be reversible. The biggest thing is that when she is asked a yes or no question she is able to respond by either nodding her head yes or shaking it no.
The doctors asked her if she wanted the tubes out of her throat and she nodded her head yes, then asked is she was in pain and she shook her head no. We were playing her some music and we asked if she could hear it, she shook her head, so we turned it up and asked her again and she nodded her head! Yesterday we weren't even sure if she was aware of her surroundings!
Continue to pray for daily improvement and we truly appreciate the prayers and donations, it has been overwhelming!
Roxi Diaz (Wanda's Daughter)
December 8, 2014
This past weekend was quite eventful. It started off great! Mom was sitting up just hours post surgery and the next day she was walking! Then yesterday in the morning she was taken off oxygen completely and was doing wonderful. She has been the happiest we have ever seen her these past few days.
Then in the afternoon things took a turn for the worse. She had an IV removed from her neck and after that things deescalated quickly. She lost all feeling in her left side and ended up passing out and stopped breathing. They put her back on a ventilator and she is currently sedated. The doctors informed us that she had a stroke and they are unsure of the lasting effects from that.
On the positive side, her lungs and heart look great and there is no current signs of rejection from the transplant. We are just waiting to see how these next few days turn out. Continue to pray for healing and for the family as this has been a very eventful month.
Roxi Diaz (Wanda's Daughter)
December 6, 2014
Just a few days out of surgery and Mom is up and walking! Yesterday when I went to visit she was sitting up in a chair and was full of smiles. It's amazing to think that just a few days ago she had horrible lungs and could barely walk to the bathroom without getting winded.
One thing that Mom really enjoys is hearing her oxygen stats. Before surgery she would range anywhere between 83-90 on a good day with 15-66 liters of oxygen. Now she is at 95-100 with only 2 liters of oxygen! The hope to take her completely off oxygen in the next few days.
The surgery was done with 2 small incisions on each side and there are drainage tubes for each lung. They are very uncomfortable for her but other than that she is in no pain. (AMAZING!) The tubes will come out once there is no more signs of drainage.
I have never seen my mom this happy and it is overwhelming to see the changes that are already taking place. I can't wait to see her a year from now! Her goal is to be out of the hospital by Christmas and at this rate I can see that happening!
Roxi Diaz (Wanda's Daughter)
December 5, 2014
Spent the afternoon with my mom! She said she isn't in any pain just a little uncomfortable. She wants to sit up so badly but can't until they remove the IV in her femoral artery. Her mouth is dry from the breathing tube but she isn't allowed to have water until tomorrow. She is talking but because of her dry mouth its hoarse. She is looking so good though! She has great color in her face and lips and her oxygen stats were higher than they have ever been! She is on 3 liters of oxygen which they will ween her off in the next day or so (so no more oxygen!!!!!!) Before surgery she was on 15-25 liters and had stats in the 80's, now they are in the high 90's. The doctor's said she is recovering amazingly well for being less than 24 hours out of surgery! More updates later.
December 4, 2014
SURGERY IS FINISHED AND SUCESSFUL!! What a crazy day! Now we have to focus on her recovery and getting her home. Thanks for all the support my family and I and my mom especially really appreciate it!!
December 4, 2014
It's been a crazy day! Around 7:00am Mom got the call that they have a donor lung available. She went into surgery around 9:30pm and is currently still being operated on. So far things are going great with surgery!
The whole family is here and able to see her before she went under. Thanks again and again for the donations, support, and prayers. I don't think we can even begin to show our gratitude.
I will update again after she is out of surgery, until then keep the prayers and well wishes coming!!!
Roxi (Wanda's daughter)
November 29, 2014
Mom had a great Thanksgiving. All of us kids showed up and the grandkids! We had the turkey with all the fixings and enough desserts to feed an army! It was great to have everyone together, it made this holiday feel a little more "normal" even though it was in a hospital room.
My husband Richie and I are heading back to Texas (he is in the Air Force and has to get back to work). We really wish that we could stay longer but we have to get things done back home. It's really hard on my mom because she wants everyone to be there before she has her surgery. We will fly back when she gets the call but we can't guarantee if we will be there before she goes in for surgery.
It's almost been a month since my mom first got into the hospital and she is starting to get a little restless. Pray that she is able to keep a positive mindset while she waits for a lung donor. She said that her goal is to be out of the hospital before Christmas! Hopefully it happens :)
Roxi Diaz (Wanda's Daughter)
November 25, 2014
Just an update on my mom, this past weekend we had a HUGE birthday celebration at the hospital for my dad. Everyone was there! It really lifted her spirits to have everyone together again, even if it was in the hospital.
She was officially listed last week and had many offers over the weekend for lungs but none of them were the perfect match. We know that the right lung will come along soon!
It's been hard being in the hospital for the past 3 weeks but my mom is a trooper and taking it like a champ. Thankfully of the testing is done and now it is just a waiting game.
We will all be spending Thanksgiving with her in the hospital, it's no the most ideal location but we will definitely make it work and make the most of it.
My husband and I will be flying out this coming Saturday to go back to Texas and we are hoping and praying that a new lung will show up before then.
I'll update again in the next few days. Thanks so much for the donations, prayers, and well wishes we really appreciate it!
Roxi Diaz (Wanda's Daughter)
November 21, 2014
Over the past year things have taken a turn for the worse. In just the past month there have been many changes that have taken place.
In the beginning of November Wanda was hospitalized due to her condition and learned that a transplant was her only option for survival. Within the following weeks she underwent many tests and was approved for a double lung transplant. She is currently waiting for a donor! As of now it looks like Wanda will be staying in the hospital until a donor lung is available.
On top of all of this, she was forced into retirement after 32 years of dedicated service. Her last day of work was spent in the hospital. Even though it was a stressful situation Wanda was an optimist and realized that everything worked out for good and there is nothing holding her back from the upcoming operation.
The cost of a transplant is very expensive and she needs your help to cover them. Any donation will help and is greatly appreciated!
