grateful for the good days

Thursday, March 22

Today has been a good day. They gave Duben some extra sedatives to help him sleep, so I was able to stay home and be with the kids and sleep in a real bed. I even got to sleep in a little, which was much needed. Then I rushed back to the hospital and the doctors had some good news. I'm always nervous coming back in the morning, if Duben has a hard time it's usually at night. They said he slept well that night and was doing most of the breathing on his own now. Which is such a relief, since he was breathing really hard and fast yesterday. He got a MRI done tonight, otherwise they probably would have taken out the tube today. They needed it in for the MRI because Duben will be laying down in the machine for at least thirty minutes. When he lays down that's usually when more of the fluid in his lungs come up, so they want to make sure he's comfortable when he got the test. Hopefully first thing in the morning it can come out! I'm so relieved. We were all really nervous yesterday how he was going to do today, I'm glad to see we came out on top! So now we just have to take it easy today and keep relaxing and build back his strength.

Friday, March 23

Was able to sleep at home again last night since Duben's MRI was so late at night. I was pulling into the parking lot when I got a call from his nurse in the ICU. Duben was extubated that morning - yay, but, was struggling breathing a little and wanted to know when I'd be there. I rushed in and he was on the mask again. As I walked in one of the doctors stopped me and said I should let him rest....duh. He smiled when he woke up and saw me, I hadn't seen him be able to smile in a week. His numbers were looking good and about an hour later they took off the mask and put him on the vapotherm (basically its his oxygen in his nose that has a humidifier in it). So glad we could finally talk! It was a long week of not being able to talk with him. It was just so good to see him smile.

A few of his doctors came in and all said they were so glad to see him looking good and smiling. His nurses have been great about keeping us positive and giving us a lot of support.

They were hopeful he could get out of ICU in the next day or so, but they dont want to rush it this time. Hopefully we will start weaning him from IV drugs to pills and get him home in the next two weeks. I get emotional thinking about having him home. Its so hard not being together as a family, Ainsley sure misses her Daddy, and her Daddy sure misses her. I know its hard on him that he hasn't spent time with Anderson too.

The biggest hurdle we have right now is getting his breathing under control. Once he starts coughing its really hard for him to catch his breath, which makes him worried, which continues the cycle of breathing trouble. I'll stay the night again just to help him out during the night. It helps him to have a calming presence....hopefully I can help.

We have a long road ahead of us, but I know we will get through it.

Saturday, March 24

Today was a nice relaxing day. We still aren't able to move out of ICU, he's not quite ready. When he gets his breathing treatments, it causes the gunk in his lungs break up and he coughs, and it takes him a bit to catch him breath. The doctor figured they'd probably wait until Monday, and let him rest for the weekend and have them keep a close eye on him. It was nice to relax and watch a movie and feel somewhat normal again. I stayed the night again, and he did really well.

Sunday, March 25

Another nice relaxing day. Ainsley had been begging to go to church so she could go play with the kids in nursery. She ran in and hugged her teacher today. She loves it. I'm so glad she's doing so well here. She misses her friends and her daddy, but we're so lucky that so many people in the church have reached out and had her over to play. Its been such a great blessing.

My Dad and I went back to visit him and he looked really good. He was able to have a little food, well, gatorade and jello. Some guys from the Elders Quorum came over to visit with him, he really appreciated that. He misses his friends at home. Thank you to everyone who sends us notes and texts, he really appreciates it.

We hope tomorrow we will be able to get out of the ICU. The kids aren't allowed in the ICU, so he hasn't seen them in about 12 days. If he doesn't make it out, the Doctor is going to get the approval for Ainsley to come see him. I know they both are looking forward to it.

Another good day.

We sure need them. This week was hard. Duben and I were talking tonight about how grateful we are to have so many amazing friends. We've been so blessed through all this to have so many people help us along. Im so grateful for the positive emails and texts we've received. The prayers are definitely helping, I know I've needed the extra comfort this week. Thank you all.

quick update

A Quick Update

Sorry I haven't written much this past week. The lack of sleep has caught up with me. Hospital beds/chairs are not comfortable. Here's the basics of this past week...

Duben is still in the ICU and is still using a breathing tube.

I spoke with the Neurologists this weekend and they aren't sure if Duben had a seizure or if he just passed out. They've ran a few tests and he looks good, but they are keeping him on seizure meds just to be cautious.

The doctors have kept him pretty sedated to keep him comfortable. It makes it harder for us to communicate. He can write sometimes, but there are times he either falls asleep writing or falls asleep before I come back with paper and a pen.

His breathing is improving and they were hoping to get the tube out by now, but he's just not quite strong enough yet. The doctors want to be very cautious this time so they dont have to put it back in again.

Duben and I both have had some hard days. We struggle not knowing how long this will take and where we are at in all this. We've had a lot of doctor changes lately, so it makes it hard to stay connected to each of the different teams of doctors and nurses. We're just tired of feeling so helpless and not knowing.

Overall, we just want things to be back to normal. Its hard not being able to talk to him for so long. We miss being together as a family. I know things will be okay. I know we will all get through this, but it is just hard.

I need to say thank you to all the amazing people who have been helping us get through this. We appreciate all the emails, texts, care packages, and many other wonderful ways you've shown your love and support. It helps me so much each day. I read all the notes to Duben everyday, and he appreciates it. I know he's overwhelmed by all the support. It means so much to us.

Thank you.

there is reason to rejoice

Wednesday, March 14

Happy Pi Day

I spent the night to keep Duben company. At night he really struggles sleeping, plus he's woken up all the time to do breathing treatments, take pills, or give blood. Its frustrating not being able to help him. The doctors said he'd be getting his port out today, It will be nice to get that out and not worry about it any more. He was doing well that morning, just anxious to get the port out.

I went home to be with the kids and would come back when he'd be out of surgery.

At the house we received three packages in two days. I can't believe how many wonderful people we have in our lives helping support us. Ainsley was so excited and kept asking if it was her birthday party.

The surgery went well, poor guy was awake the whole time, I know how much he hates that. Overall, a good day. We took things easy for the most part, just let him relax and get his strength back.

Thursday, March 15

Today was a harder day for Duben. We've had so many big days this week and now its back to focusing on the little things. We're realizing how far we still have to go. Doing the little everyday things still wears him out. He still can't get up and walk around and it frustrates him. Its hard to go from being so independent to struggling so much and having to rely on others for everything. I have to remind him that its a long road ahead of us. We've had a lot of big wins, but we have to focus on the little things each day. Everyday he gets stronger and can do a little more.

I stayed the night again to keep him company. It was nice to relax and watch a little basketball and try and not worry about things. When he went to go to bed he tried laying down pretty flat, this caused the gunk in his lungs to work up and made him cough. The coughing led him to get short of breathe, so we had to get some help. They upped his oxygen and gave him a mask and he was able to relax and breathe normally on his own.

Friday, March 16

It was an okay night. He was able to sleep for a few hours. I stayed for breakfast and he was doing well with his breathing, he said he felt up for trying to go for a walk that morning too. I left to go home to feed the kids and change for the day.

I wasn't home for an hour when I got a call from the hospital, Duben had a grand mal seizure and have moved him back to the ICU.

I just put my head down and cried.

After I got back to the hospital I went to his room and saw they had put the breathing tube back in. I feel like we made so many great improvements, now we're back here.

After talking with the doctor, they said when they moved him it happened - they aren't sure it was a seizure or not. He is still confident Duben will bounce back from this, but its just hard being back in the ICU after such a good week.

I received a wonderful gift in the mail today along with this quote, "Hope sustains us through despair. Hope teaches that there is reason to rejoice even when all seems dark around us." Deiter F. Uchtdorf.

This obviously isn't what we wanted, but I know we will get to where we need to be. It is easy to let my mind wander, but I know he'll be okay. It is all I can hope for. I have faith our Heavenly Father is aware of us, and know we are in His hands.

Tomorrow will be a little better.

thanks for the confidence - part 1

What an eventful few days it has been.

This is a little lengthy and in depth, but it was mainly for me to remember everything.

Thursday, March 8

It was a rough day from the get go. Duben woke up really early coughing and was struggling breathing so they had to bring in the respiratory team. They gave him a face mask to help him breathe better. I know at this point he was just exhausted. I tried to spend most the day with him to keep him company and keep his mind off of everything. We haven't been getting any new information yet, nothing good at least. The doctors told us his chest is looking a little worse than the day before. He continued to struggle getting in air. We still are waiting to hear back on his lab results. Because of the different tests they do we will slowly get more and more information. His spirits did seem a little better today.

For lunch I went downstairs to get Duben a smoothie and started talking to a man in the elevator. We said a little about why we were here and where are from. We stopped and chatted a little more, then he asked if he could pray for me. Sure. Then he grabbed my hand and started praying in the middle of the hallway. Only in the south. I needed it though, so thank you to the nice man from Shreveport.

I went back home for a bit to play with Ainsley and hold Anderson before I went back to the hospital. I'm so grateful my mom is here to take care of them. Ainsley loves her and she is so patient with her. I wanted to be able to take her to the park and do fun things with her, but I just don't have the time. So I'm grateful that she can do it. Its hard not to feel like I'm not being a good mom to them sometimes, I wish I could play with Ainsley more and cuddle with my baby boy more. I just want them to know how much I love them.

Duben had another hard night tonight, so I'm glad I decided to stay with him. We both fell asleep around eleven then he woke up coughing around one and was scared he was going to have another episode like the night before. That gave him anxiety and he asked if I could just hold his hand or rub his arm. He continued to tense up and he just wasn't able to get enough oxygen. The respiratory guy came in and did a treatment with him to help open his lungs and break some of the stuff up and that seemed to help for a bit. Nurses kept coming in to check on him and at four o'clock they did a chest X-ray. His chest infections continues to look worse. After that they still were concerned with his oxygen levels, so they brought in a breathing mask that straps to his head,kind of like a catchers mask. This keeps in all the air and does more of the breathing for him. The next step for him would be the ICU. Poor Duben is just so exhausted physically and emotionally. The nurses were finally able to give him something for his anxiety, and it helped put him to sleep. I just pray that he sleeps and is able to get some strength back. We have a long road ahead of us. It's hard to see someone you love struggle so much and not be able to do anything for him.

Friday, March 9

This has easily been the hardest week of my life. Duben had to be moved to the ICU this morning because he just couldn't breathe well enough on his own. I came back to the hospital to see him and he was just exhausted. He was still using the mask to breathe and was struggling to stay awake. He was so tired from having to work so hard to breathe. The nurses said it was like he had been running a marathon for the past two days.

They notified the doctor when I arrived and she came to talk to us. Basically, Duben wasn't doing well enough on the breathing mask and his chest xrays were looking worse. We had to make the decision whether or not to move him to a breathing tube right now, or risk having to put him on one in an emergency situation. On the tube he can't talk, he would need to be highly sedated, there is a risk his body would become dependent on it and he won't be able to get off of it, and who knows when he will be able to come off of it. She left us to talk it over, and we just cried.

Duben was just exhausted and we both knew this was the best way to let his body rest. We were both scared. I hated the thought of not being able to talk to him and not knowing when he would be off of it. I felt like I was having to say goodbye to my husband. We cried and kept saying how much we loved each other and proud we were of each other. It killed me not knowing when Ainsley would get to see daddy again. We had a quick prayer together and after a lot of tears we told the doctor to go ahead with the breathing tube. They immediately started getting everything ready. I kissed him again and we exchanged more I love yous and they started the procedure. I stayed for a bit and we kept looking at each other trying to smile. The last thing I saw was him wink at me before they sedated him. Once he was out I couldn't stand to be in there and had to leave. In the waiting room I let myself go and just cried.

After the procedure I went back in and it broke my heart. He was laying there heavily sedated with the breathing tube in his mouth. I felt like I lost my husband. The nurses were wonderful and helped console me. They encouraged me to go home and be with our kids and they would take good care of Duben. They said I should call as much as I liked. I kissed him goodbye and cried the whole way home. Never during all of this cancer process had I ever worried about losing Duben until tonight. I felt like my world had just come crashing down.

I was able to talk to friends at home and our Bishop. What amazing people and friends we have. They quickly sent out an email to the ward asking everyone to fast and pray for us over the weekend. It gave me so much comfort knowing I had so many people behind me ready to help me fight this battle. We couldn't do this on our own.

Saturday, March 10

I called first thing in the morning to see how he was doing. He was still pretty sedated and was just sleeping. Later when I called he was somewhat awake so I rushed over to see him. When I got there he was really sedated and he woke up occasionally and would try and write something to me. It was hard to see him like that, but I knew this would help him get stronger.

When I left the day before he needed 100% oxygen, now he was at 60%.

**Quick amateur explanation of oxygen levels. A normal person breathes 20% oxygen 80% nitrogen and their blood oxygen saturation level is usually 99% or 100%. Duben has required 100% and his saturation levels were down to high 80s low 90s. The doctors would like to see it be closer to 94% then get back to 99%**

It was good to see a little improvement in some way. His x-rays continue to look worse though.

I stayed a bit longer and just held his hand and let him sleep.

I came back later that night and my heart jumped when I saw him awake. We were able to write back and forth a little. He tires easily so it wasn't long before he was ready to sleep.

His oxygen was down to 50% now. I'm grateful for these little wins, they give me the strength I need to function. Especially grateful for all those who are fasting and praying for our family right now. I know its because of those prayers Im able to keep it together.

thanks for the confidence pt 2

Sunday, March 11

We were able to get to church and meet the ward. Everyone was very friendly and I couldn't believe how many people came up and offered to help with anything I needed. I was able to get a blessing, and it was so comforting.Duben is doing a little bit better today. His oxygen is down to 40%. He didn't remember that I was there the day before. He kept saying he was hungry, the poor guy hasn't eaten since Thursday night.Tonight he was more alert, it's nice we can write and talk, or just sit and hold hands and watch tv. I miss him.Hopefully tomorrow brings more answers.My aunt wrote me a great email about dealing with trials. She shared the story of someone who experienced trial after trial and he said when hard things happen he always looks up toward Heavenly Father and says, "Thanks for the confidence."I can do this.

Monday, March 12

Duben looked good this morning. His oxygen was at 40% and he was awake and looking good. The girl from the respiratory team was hopeful that he would be able to get the tube out. She was going to run a test to see how well he could breathe for half an hour first. If he did well he might get it out. He did perfect. One of the nurses told us not to get our hopes up because his chest x-rays still looked bad, but I didnt want to listen to that. Today was our day. The dr came in and said things did look good, but she wanted to wait just a little bit to watch his heart rate, because it was getting low. She was slowly taking him off his sedation to see if that was the cause. She also wanted the cardiovascular team to come have a look at him. HOURS later they finally showed up, but his heart rate had come back up at that point. Then, she finally gave the okay! It was awful for Duben to actually get it out, but then after....what a relief. Hearing him talk again brought tears to my eyes. We were so happy. Finally a win! I had missed him so much. I had been three days since I heard his voice. We've never gone that long since we started dating. What an emotional time that was.The doctors said he could even get out of the ICU in 24 hours, which would mean he could see the kids! I know how hard it is on him not to see them. Ainsley misses her daddy and he misses her.

Poor Duben still can't eat, dinner tonight was ice chips. I keep telling him, today was our turning point, good things were happening. I'm so glad we had a good day. I just feel happier knowing we made a little progress. We still have a ways to go though, so I don't want to expect too much.It's hard trying to split myself between him and the kids. I feel like I'm always neglecting someone. It's emotionally draining. What a day. It's exhausting running back and forth to the hospital all day. I just sit and worry about him and our situation. Its hard being helpless. I realized this weekend how heavily I rely on prayer. This experience has really helped me put things in perspective. Hopefully I am learning what I need to from all of these experiences. This has been the hardest week of my life. Going through a trial is hard, but going through it without Duben, that has been near impossible. I can't imagine my world without him. Going to bed each night without him was awful. I can't wait to get him home and get our lives back. I hope I never take it for granted.

Tuesday, March 13

Went to the hospital first thing in the morning and Duben was sitting in a chair! What a happy surprise. His occupational therapist came in and helped him get up and move. Such a small thing, but it is a big change for us. We're hoping to get out of the ICU today, so this is a good start. He's on a clear liquid diet right now, I've had to convince him to drink. Each improvement is a step closer to his recovery.Our doctor came in and gave us a breakdown of his current situation:- His port is causing problems and needs to come out as soon as he is stable enough. His arm has swelled and he was getting blood clots.-X-rays are looking better today.- We are out of the woods for his breathing, we just need to get this infection under control now.- One of the ideas of what happened was that Duben has bacterial pneumonia. He's had it for a while, but his blood counts have been so low, his body hasn't been able to fight it. It finally got so bad and thats when the breathing problems started. They gave him a shot to boost up his counts, and once that happened his body was able to fight the disease, which caused it to get inflamed and get worse. So now that he's healthy enough to fight it, its fighting back.

- He's letting us out of the ICU today!

While we waited his occupational therapist came back to take him for a little walk. It took like 20 minutes just to get his IVs under control and his oxygen ready. He was able to walk around his bed before he felt tired. He did great though. Its all about the little victories. It sure makes me appreciate all the things Im able to do everyday.We moved out of the ICU finally! Our new floor is so nice, I feel like we are starting over. They finally cleared off his IV pole and there are only 2 bags left. He had about 6 or 7 different bags at one time. I got to bring the kids up that night too. Ainsley was so excited to see Daddy.

It felt so good to be together as a family again.

I dont think we can say enough how much we appreciate all the prayers and support we've received. I have felt so much love from so many people and from our Heavenly Father. I know he hears and answers our prayers and is there to comfort us. I've felt that so strongly this week. Thank you!

i can do hard things

I think recent events have warrented a new blog post.

We will start with some good news first!

On January 26, Anderson Duben Wilde was born. 8 lbs 13 oz. 19 1/2 inches long. A wonderful day, since he shares his birthday with my wonderful grandma. He's just perfect. He's been such a wonderful addition to our family. Ainsley especially thinks he's great. she's been a great helper and is proud of her little brother. It has been nice to another beautiful baby around us to keep us smiling.

Just a few weeks ago, Duben finished his last chemotherapy treatment. We were so overwhelmed and grateful to finally have that behind us. It has definitely been a long road getting here. We couldn't have done it without the love and support of so many amazing people.
Just a week after Duben's last treatment he wasn't feeling well, so he went to his oncologist and they found out he had pneumonia. He went in for two sets of IV antibiotics and they told him to get some rest and he should be okay. A week later he still wasn't feeling well and we were set to leave for Houston the next morning, so he went back in and had another X-ray and then had to get two shots. They said the pneumonia didnt look any worse so the antibiotics should do the trick. The next morning we packed up the car and made a quick stop at the oncology clinic so he could have one more round of antibiotics, then we were on our way. We drove five hours to Dallas and then the next morning made our way to Houston.
We plan on being here in Houston for about six weeks, so we've rented a little two bedroom house close to the hospital. We were pleasantly surprised how cute it is, and that its in a great neighborhood. Ainsley loves it, and calls it the bungalow.
We arrived in Houston Sunday afternoon and Monday morning I dropped Duben off at MD Anderson so he could meet with his radiation oncologist and then have a CT scan done. He still wasn't feeling well and by the time he went to get his CT he was having problems breathing and was in a lot of pain. He ended up throwing up and then they told him he needed to go to the ER.
Once there they discovered he had a blood clot in his lung and also an infection in his lungs. The blood clot has a pretty straightforward treatment plan, which right now is two shots twice a day. Due to the hefty price tag off the shot, he'll be switching to a pill, which will requre weekly doctor visits for about six months. Which isnt bad, if we stayed with the shots Duben would have to administer them himself, and he hates needles.

As for the infection, the doctors are unsure of what it is, and that is their main concern. This morning they performed a bronchoscopy to look at his lungs and take a sample from the infection. The procedure went well, and it will probably be about two days before we get the results back. In the mean time, Duben is comfortable, and slowly feeling better. He still struggles breathing and coughing, but we are comforted knowing he is at the best place for him. The doctors and nurses here are amazing, and since I can't stay with him all day, its nice knowing he is well taken care of.

Overall, we are doing okay. Its been hard emotionally having so much thrown at us all at once. Moving to a new city with a newborn and a two year old was hard, but adding all this immediately after arriving really caught us offguard. We are blessed my mom was able to fly in so I can spend time at the hospital with Duben and she can be with Ainsley. Ainsley is adjusting well, but still misses Daddy. A good friend of ours gave us a picture that says, I can do hard things. There have been many nights we've looked at that and had to remind ourselves that we can do this. We can get through this.

We are so grateful for all the prayers and well wishes. It means so much to us to have such an amazing support system. I know we couldn't have made it through all these trials without the love and support of so many wonderful people. I just can't say enough how much we appreciate all of you. Thank you all!