Life with Leukemia: Thoracentesis, because I know you want to know.

Since being here Tyler has developed a sort of shortness of breath and dry cough. It got bad sometimes and made it so he couldn't talk. Or so that he sounded like a 90 year old man with asthma. I would have to talk him through breathing, because it obviously made him nervous. By day 2 or 3 the doctors could actually see the labored breathing and ordered oxygen for him. That definitely helped, but didn't fix the problem. Eventually he had another scan done (this was like probably the 5th) and they could see fluid sitting beneath his left lung. The next morning they ordered a Thoracentesis. A procedure where they drain the fluid. This first one the girl just took enough to sample. They wanted to make sure that it wasn't infected and causing the fevers. The next day he was still coughing and so the main team of doctors ordered a second Thoracentesis to drain all of it. They used an ultrasound machine to find the fluid then drew marks on his back. They do numb the spot, so Tyler said it wasn't so bad. The worst part was just sitting up and so still for it. He got uncomfortable before they even went in for the fluid. 

I'm sure you all want to details so let me explain what I saw happen, you're welcome to research it on your own too. Once the area is numb a super long needle is inserted. They place it just above a rib, because the bottom of a rib is way more tender then the top, who knew? Probably you people who paid attention in school. The needle has a plastic tube covering so once the needle is far enough in, they actually slide it back out and leave the tube in. They pulled out 33cc's with a syringe to get it started. Next they hook up the tube in him to a vacuum tube of sorts that drains into a bottle. Then it just comes rushing out. They filled that bottle to about 400cc's. He couldn't feel any of it and I insisted he look at the fluid after. Even though it wasn't as much as they usually drain I could tell it was enough to make a difference. 

Any procedure they do, big or small, wipes Tyler out. So he fell asleep. We sleep a lot so I can't remember exactly at what point, but eventually he woke up from his nap. I had left to go make a call (and walk to the other side of the building to use the facilities) and when I came back Tyler was sitting in a chair chatting with the nurses. They had changed his bedding and his gown, normally this all is stuff he holds off on because he wants to just stay in bed. He looked so much better and was sounding great. He got tired quickly, but it was a different tired. More normal then a I'm going to be sick and die (no ones dying on my watch) tired. He fell back asleep and had an awesome nights sleep. I did hear him complain to the nurses about some random bought of itching, but he didn't seem too concerned this morning about that. 

Today he woke up, and still feels good. He's already back down for a nap, but he ate his breakfast by himself while I showered. Also a HUGE step! The eating by himself, not my showering.

Speaking of our morning, right outside my window today were two deer. I felt like I was at the zoo behind this glass window, they were so close!

Our nurse yesterday, M, was fantastic and we get her again today. Which makes me wonder, do the nurses pick the patients or are the assigned to them daily?

Thank you all for loving us! I read Tyler all of your comments and texts. Someone even made us a meme, stuff like that brightens his day. 

Life with Leukemia in the hospital

Living in a hospital is different when A I'm not the patient and B it's not for having a baby! 

This place is super nice and I do get good sleep. I've managed to start sleeping through the nightly visits. At 10 and 4 round the clock they draw Tyler's blood for labs and sometimes cultures. We are happy that he finally has a picc line in him so those labs and things don't require extra pokes. We were really fond of the two guys who inserted the picc line. We talked about Disneyland and kids and other normal life things. We love anyone who can talk normal life and joke with us. We also love people who can do a painless procedure which this was.

The intern doctor will come in earlier in the morning and check Tyler's breathing and ask the standard questions. Then a nurse comes in to do the same, as well as an aide... they are very thorough, which we love, well I love, Tyler I'm sure wishes it was more consolidated. 

At some point during the day our team of Dr's come in to give us updates and ask questions. I feel like I'm on the show House. I'm constantly watching the other doctors faces searching to see if this head doc is telling me the truth. Then I have to remind myself I'm not on the show House and this head doctor is probably not addicted to vikaden and is not all sorts of crazy. (Although there is a patient here who resembles Dr. House) He's actually really great and will even throw in a joke or two for some comedic relief (which I think there should just be stand up comedians in hospitals I NEED more laughs!). And even though I know I'm not on House I think imagine they all go back to their glass office and write Tyler's symptoms on a white board trying to figure it out. 

Today has been slow so we have been napping, but normally there are tests, tests, and then some more tests. 

We usually see our Infectious Disease team a couple times a day, and I just learned we are adding on the Pulmonary team to our list of new found friends. (Dear Indiana... thank you for filling my husband with crazy weird fungus) Tyler has some calcified spot on his lungs from a fungus called Histoplasma. Which apparently is everywhere in Indiana. When we first arrived, Dr. J asked Tyler a lot about his hobbies, Does he go Spelunking? Do we camp? Have we traveled to foreign places? Does Tyler like to go into caves with bats? I laughed at every single question, this man obviously does not know my husband. His hobbies include golf, working, and reading. And unless some bats pooped on the golf course, he's never been around any sort of weird fungi. He did however forget to ask where Tyler grew up (and in his defense he may have asked, I can't even remember). Dr. Snyder (the Infectious disease doctor) did ask that and pretty quickly knew it must be Histo. So all you Indiana peeps... watch out! Turns out there was a large out break at Tyler's high school (from bird poo) that probably led to these spots of it on his lungs. 

Anyways, so we obviously eat our meals and watch TV. There are volunteers who bring around DVDs and magazines for us to read. Later today we are meeting Jodi, who's going to hook us up with art supplies! I'm determined Tyler will become an artist in our down time here. 

The physical therapist takes Tyler for walks once a day (it's really cute) and today he gave him some pretty intense leg bending exercises (for reals, they make him exhausted and it just shows how tired he is).

There's always more labs to be done, and questions to be asked.

My couch is very comfy, Tyler seems happy with his bed. Our room is a good size, and don't worry I brought my camera to record it all. 

We will still be here awhile and we are continually grateful for all the love and support from everyone.

Life with Leukemia

I never thought I'd have to write a post even similar to this one. My life is way too easy.

I read a lot of blogs, a lot of traumatic ones. I get sad, because those poor peoples lives changed soooo fast and how horrible for them, and paranoid, because what if one day my child drowns too? or something else crazy like these peoples lives and then move on because it's not my life and I don't have to deal. Well, I guess I forgot to knock on wood at some point.

A few weeks back Tyler got sick, he assumed he just picked it up from someone else so it would eventually go away. He was headed out on a business trip and got a blessing from our neighbors. He felt pretty good. His flights went really well (which is huge for Tyler because he hates flying) and he felt mostly good the whole trip. He came home and the following week he was up and down to the point where I eventually decided to take him to the Urgent Care. We got there and they took some blood, a chest X-ray and gave him an IV with some meds. The IV made him feel great! We picked up a Z pack and headed home. He didn't sleep so great that night and the next morning his fever was up and he was still sick. As I went about my day I got a call from the urgent care asking us to come in and chat with the doctor about the results of the blood tests. That made us nervous, but we assumed that his pneumonia was just worse and he would need to be hospitalized.

We had to wheel Tyler into the office, he was still not feeling well. The nurse sent us back into a room. I knew the doctor was outside our door and I thought he was taking a little too long for my liking. Finally he came in. He said lots of stuff, all of which I don't remember. What I do remember is his talking about Tyler's white blood cell count and how it should be 10 but it is 99. That seemed wrong. He said some more things and then he said "You have Leukemia". I'm sure he used some nice segway into that statement, but I didn't hear it. We reacted as you can imagine, lots of tears and questions. Poor Dr. He couldn't really answer most of them for us. Just kept telling us that there was treatment. He sent us to get some blood work at Timpanogas Hospital. They weren't able to get it done on a Saturday so we headed back to Tyler's parents to wait and let it sink in. The Urgent care doctor called within the hour. He let us know that after talking with the oncologists at Huntsman Cancer Hospital they have decided to get started on all the testing right away. We waited just another half hour and the HCH was calling us with a room number. We left Sawyer at Nanas and headed up to be admitted.

I made a few calls in some of these waiting moments. Most were just a few sentences long, because what do you follow up "Tyler has Leukemia" with? Thank goodness the people we called were gracious enough to handle these insane calls.

We have been at the Huntsman Cancer Hospital since Saturday afternoon. The first few days were a blur full of testing and questions and scans and blood work. I've met more people this week then I have all year! Each one had been amazing. They are all kind and have happy demeanor's. They encourage us to ask questions so there is no confusion. They break things down for us so we can better understand. They have let me watch Tyler's procedures so I know what is happening. They will show us his scans and x-rays and point out what they are looking at.

The worst procedure by far was the Bone Marrow Biopsy. Don't google it... I can't imagine finding anything pleasant. It was not fun for Tyler but provided us with the results we needed. On Monday Dr. Sour head doc brought us the news that they were officially diagnosing Tyler with CML, Chronic  Myeloid Leukemia. Strangely enough we let out sighs of relief. We knew we were up against one of 2 types. AML and CML. Google those and learn the differences, but AML has a much more aggressive treatment. CML, once stabilized is a pill a day and lots of follow ups. By no means does this mean that Tyler's life wont be different, but it will be livable and he will enjoy life with Leukemia.

Since Sat Tyler has had a fever daily. There is some infection in his body that we are chasing down. Hopefully the latest tests can tell us what it is. He is extremely tired and worn out, which I would be too, well actually I am, just not as bad as he is

Thank goodness for family and friends. Sawyer is at his Nanas. He loves her and their house. The dogs are at a neighbors being taken care of. So many people have called texted and visited as word has spread and we love the love! Tyler needs your prayers to keep up his strength as he fights off this infection.

Each day it seems we learn we will stay another day. Right now I'm thinking it will be Tuesday before they let us go home. But who even know??

Tyler is amazing and this situation has been hard on him, but he's staying strong. He's going to pull through this. I've been trying hard to journal each individual day and maybe eventually I will blog about those. As for now we will update Facebook with any important or maybe not so important news so everyone can know whats going on.

We love you all!

Oh! Please don't post anything on Tylers facebook wall about this. If you have questions we are so happy to answer them through my Facebook or by texting me. Phone service is not the greatest in our room, so it will probably be delayed response.