Life with Leukemia: Visit to the Bronchs

After many prayers we experienced a miracle this morning. The pulmonologist came in and told us they WOULD do the bronchoscopy today. PHEW! At first they were thinking they would do the procedure at 12, Tyler quickly asked for them to consider doing it earlier. The next pulmonologist to come in (around 9:30) said they would do it at 10! Hallelujah. In the next 10 mins they came and took him away.

The procedure only took about 30 mins, but prep and other wait times meant Tyler was gone for about 3 hours. I got antsy and kept asking the nurses to check in. I found out they had taken him back to Huntsman for the surgery, wish I had know I would have gone along! He came back at about 12:45ish feeling pretty gross but not loopy to my dismay.

They did a wash of his lungs doesn't that sound pleasant. Basically they squirt in salt water and then suck it out like a day at the beach. But, he was left with some still there so he was coughing a ton. His breathing took a step back today as he recovered from the procedure. The Pulmo, Dr. B came in to check on Ty. She says the way he feels is normal and talked about all the tests they will run of the stuff they pulled out.

He's napped some and got yet another fever, probably one of his highest (but they told him to expect this). His breathing is sounding better now. Dr. E says we should know by late tomorrow morning the results on the TB and if all goes well we can be headed back to Huntsman!

We are really doing ok here at the U. Tyler is a nurse charmer and they all love him. We find many ways to laugh, like every time his bed takes flight Tyler announces it's lift off time.

We haven't figured out why it makes the noise is does, but it is loud and gets louder, then slows down. The wall behind it will rattle at the same time. Hilarious.

We've slept really well here. I even napped during the day and through Tyler's many convos with the nurses.

They are not as strict about me using the bathroom in the room which is a nice blessing. The "family bathroom" here is way more public and occupied then at the Huntsman. So I was able to just shower in the room.

Our spirits are high and we are finding plenty of ways to occupy our time like by watching American Greed and learning how to execute a perfect Ponzi scheme.

I had a little anxiety today about not moving forward with things, you know like cancer treatment, and all sorts of silly things. But, my friends know me well and I received a FABULOUS gift from a friend that made my day!

Here's to hoping that tomorrow we move forward.

Life with Leukemia: From Taj mahal to Holiday Inn

So more updates!

Our ID doctor came in and told us they wanted to test Tyler for TB. A more comprehensive test then just the skin prick, no big deal. He would just have to do some flem testing a few times a day, no big deal. We may have to switch rooms, no big deal. They aren't really convinced that he has it so we aren't too worried.

Fast forward an hour and our aide walks in with a mask on while we are playing card games. Instantly I joke with her and asked if we are being quarantined. She looks at me funny, then I ask why she's wearing the mask. She asked if the doctors have talked to me, uhh no. So I ask her what is going on. She looks like a deer in the headlights and backs out of the room and says "I'll be right back, I'll go get someone to talk to you." WHAT?!?!? 

Our most favorite nurse C comes in, also wearing a mask, and sits down with us. She asks if they Dr explained about the TB, yep he did. Ok great she says well then he told you that you would have to switch to the U hospital right... uhh no. (no one tell Hilary and Rustys kids, they might come try and break us out for fear we will become Ute fans)  but ok, no big deal.

Tyler was pretty bummed. C has done a lot to help us feel comfortable and taken care of and we have grown to love her, We even shed a few tears. So she talked us through what would happen and how they needed us in a negative pressure room so the air from our room doesn't filter out into the other patients rooms in case there is TB. understandable.

So we quickly packed up, you wouldn't believe the stuff I have here, and we were wheeled through some tunnels to the U.That's when it hit us.

This is a big deal!

First of all, it's definitely not as nice as Huntsman. Big deal. It smells weird. Big deal. We asked for the menu and they laughed, food is made three times a day and unless you have food restrictions you will eat what they make, when they make it. Big deal. The bedside table is sticky. gross. My bed/couch has some seriously unexplained stains on it and the walls rattle every five seconds.

I could go on.

They laugh because they can tell we are a bit shell shocked.

The second BIG shocker was we were under the impression that we would be here a day and half then we would get to return to the palace. lie. This doctor here says the test has to be done over a span of three days. So we are here till Friday at the latest.

We laugh because we know it's a test. We know it will help us grow. We know that miracles happen and can happen here in this hospital. We know we were spoiled. We know that by being here, we don't have to see Dr. Pool for a few days:). We know amazing Dr's work here just like at Huntsman. And we know this wont last.

There is better cell service here and I'm pretty sure we will have an awesome view of some fireworks come Thursday night. The nurses went out of their to find us food, and get us settled.

We are hoping for huge blessings from this place and to be back to our home at Huntsman (we miss our nurses terribly already) and our real home soon.

p.s. please realize sarcasm is how I cope and I truly am grateful for an opportunity for Tyler to get better.

Life with Leukemia: Saturday Night Fever

Update 7/7/13: I made reference to Dr. P in this post. It seems that he was made aware haha. Which is actually a good thing because it was something I could see was affecting Tyler and I didn't want to have that happen. Since then he has been amazing to us and we appreciate his willingness to change to meet our needs. We are grateful for each and every Dr working on our case.

more like every night fever...

Every day around 4 or 5 Tyler spikes a fever. They measure it in Celcius here so if he hits 38.5  they will instantly bring Tyler ice packs and tylenol (or a cooling blanket). It has happened so frequently (at least once a day for the last 3 weeks) that Tyler can tell you when he feels it coming. He will get the chills and call the nurse in for the treatment. He has even gotten to the point where he can guess his temp as they take it. And he usually guesses right the nurses love that. Unfortunately, no one can figure out why he gets them... But we know they will.

He also gets a cough on and off. It starts as shortness of breath and turns into a cough. It usually perks up right as the dr. will ask if he's been coughing dang Dr. S. They are attributing that to some nogles they have found on his lungs, and have grown, since he has been here. The guess is that there is some type of fungus that is reactiving due to Tylers compromised immune system ummm what?! Insane right? So, the Infection Disease (ID for short) doctors just came in as I am typing and said tomorrow they will do one of two tests.

 1. Stick a tube with a camera down into his lungs and do a wash to test the junk in there.

2. Stick a needle into his lung from the outside and get a sample.

Ummm they both sound awful to me... Poor Tyler.

Speaking of this needle into his lungs... so this is a teaching hospital and the doctors rotate around once a month or so. Lucky us, we came in the week everyone is switching. So there's this new doctor like day 2 new named Dr. P.  He came in before rounds to check on Ty. Oh man he has the worst bedside manner EVER! He told Tyler some mumbo jumbo about how they can't send him home because he has some 30% chance of dying.... what?!?!? Who says that stuff? Oh man, anyways after he spews this nonsense he looks at his lil reminder paper and then back tracks with more nonsense. It was really just as hard to follow what he was saying as that last sentence was. 

THEN he comes in with the 6 billion doctors on rounds (just like in all Dr shows they do rounds) and Dr. G who we really enjoy, shes a small lady with a big brain is kindly telling Tyler about the above mentioned procedures and we are feeling informed about it. She mentions the needle and Tyler asked if it was very big. Dr. G says no, but Dr. P jumps in with "No it's pretty big" again WHAT?! Oh and that there will be no meds, just a stick to bite on and some jack daniels or some acholic beverage to numb the pain... this guy.

 We have decided that instead of complaining about him, we will just make fun of him behind his back (and I'm only kind of kidding about that). So ya, not a huge fan of Dr. P, which is a shame because I LOVE swimming.

UPDATE: Sweet little intern M just came in and said they will do the scope, official name is Bronchoscopy if you google that you WILL see a video of the inside of a person. Tyler won't be allowed to eat after midnight, which surpringly enough he has been. Last night he got up and some a homemade granola bar (thanks Lisa) in the middle of the night.
They will sedate him for the procedure, which puts him at ease.
I will video tape him once he is back in the room because I KNOW it will be worth watching later.
Tyler is doing awesome though and we really want everyone to focus their thoughts and energy on that. He can do everything for himself! Eat, drink, shower - the works. We are up and walking more. I love that the nurses here are getting to know us and will cheer him on as we walk laps. He sits in a chair instead of in his bed he did get a lecture from one of the dr's about staying the bed too much lol.
We had a wonderful visit from his mission president. He and his wife are so in tune with the spirit and have so much faith. We got a lot of great insight from them and more strength to go forward with faith.
We continue to be amazed at the love we feel from family and friends. We appreciate all your comments sent through facebook and we appreciate your prayers. Tyler asked me to ask you to pray that the doctors will find the source of his infection and cough so that we can go HOME!
p.s. why is blogspot so lame? I have 7 fonts to choose from and they all look like this.

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.

10 Months Old

After taking these pictures for 10 months I finally remembered there is a lock on the chair that can keep it from rocking. Man, does that make a difference!! Once again he was fussy, but I got a couple of ok shots. Some of Sawyers latest include:

Waving Hi and Bye and I'm so convinced he is saying Hi as he does it. When we say "bye bye" he mades a "da da" sound.

Eating everything he can reach. He enjoys pieces of bread, and we enjoy that he will occupy himself at a restaurant or in the car by eating a piece of bread.

He has 5 teeth in with one more on the way.

Walks great with his walker toy.

Doesn't enjoy swimming like we hoped.

Crawling even faster then last month.

Says "More" in sign language.

Start to clap on command.

and it still the happiest kid around. He LOVES his daddy and honestly lights up when he hears or see Tyler.

 We took a trip to St. George for the weekend. This pic is after Sawyer finished a bottle, he was full! The car ride was ok. He got fussy near the end both ways. We tried taking him swimming and he was scared. It took some coaxing from dad for his to stay calm in the water.

Seriously isn't this the cutest picture?