What our life looks like right now

I wanted to give an idea on what our daily life looks like now that Jordan is home and after our meeting with the Liver Specialist.

Jordan is still in a lot of pain. He is taking 7 different pills a day, some twice a day for various reasons. They didn't give him anything for the pain. The pill that reduces pressure in the abdomen and the pill that coats the stomach lining will most likely be medication that he will be on for awhile.

Because of all the pressure in his abdomen eating is uncomfortable. He will be really hungry and about half way through his meal he will get the feeling that if he eats one more bite he will throw up. So he eats small meals throughout the day and snacks on things like Jell-O, popsicles, and sour candy. Apparently the same taste buds on your tongue that register salty tastes do the same with sour tastes. So in a sense eating sour candy satisfies that salty itch.

He is drinking lots of caffeine free Pepsi, protein shakes and fruit smoothies. Right now Jordan is on a low sodium diet with an emphasis on protein intake. It’s amazing what foods have low sodium that we didn’t realize. We are still getting a handle on what our diet can consist of. We are reading lots of labels on food and grocery shopping takes twice as long.

The pill for the portal hypertension, which helps reduce the pressure in his belly, makes him dizzy and disoriented. There will be times were 5 minutes will pass and he won’t be able to recall what happened during that time. It takes longer to form thoughts and harder to focus on simple tasks. Because of this he has not driven since taking himself to the ER.

Sleeping is becoming a problem again. He cannot fall asleep until around 4-5am and will have restless sleep until about 12-1pm. He will just lie in bed wishing for sleep to come. During his next meeting with the Primary Care Doctor he will be asking for a prescribed sleep aid.

He is getting out the house and walking around to get exercise. Today we volunteered at the Indiana State Fair Grounds with the agency that we adopted our greyhound from, Greyhound Pets of America, at the Flower and Patio Show. We took Tommen down there and talked to people about greyhounds. It was a good time and nice to get out of the house for a few hours. But it did wear Jordan out. That’s about all he can handle at this point. No strenuous activity, just walking and interacting.

Jordan will continue to work from home by doing paperwork for his dad’s business, which we are very thankful for. We will be reevaluating our financial situation once we start receiving bills from IU Health and make a plan for the past medical debt.

So that is what our life looks like right now. I have had the last few weekends off work so it’s been nice to spend that time with Jordan. We have really been enjoying each other’s company. We have talked a lot about how our relationship and marriage has grown and how it is so much richer and fuller. I am not sure how to describe it exactly, maybe some thoughts for another day. I truly believe that we were meant for each other and I am so thankful to call him my husband. We are very hopeful for our future together.

Also, Happy First Day of Spring! 

The Results of our Meeting with the Liver Specialist

Jordan and I would both say that we were a little nervous about our meeting with the Liver Specialist. We didn’t know what kind of doctor he would be and we had a lot of questions on our minds. It had been a long week and we needed some good news. What we needed most was hope.

The clinic was literally across the street from our neighborhood so we were there in less than 10 minutes. Once we got signed in we didn’t even wait a full 5 minutes until we were taken back into the room. Everything there was so efficient and quick; another reason why we love IU Health.

After getting some vitals and waiting less than 5 minuets the Liver Specialist came it. He was the kindest, most sincere doctor that we have encountered this whole journey. He was patience with us and took the time to explain everything to us and answered all of our questions before we even asked them.

One of the first things that he asked Jordan was when the drinking started. He congratulated Jordan for stopping completely on his own without any intervention or rehab. He said that was a big deal and the first step in this whole process. He was very impressed with Jordan’s ability and resolve to quit when he did back in July 2015.

After assessing all of his medical records from all of his hospital visits from August 2015 up until the most recent one this month he was able to give us a clear and concise prognoses and plan moving forward. He was very hopeful in Jordan’s case and proceeded to explain why.

Jordan’s liver is what he would classify as Type B. Meaning that yes, it is damaged and there is cirrhosis of the liver but with some care and time it could become a completely functioning liver again. Just a quick side note, he did say that doctors use different terminology for cirrhosis of the liver; some say liver failure or end stage liver failure. While all that is true, the liver is failing to preform efficiently and not working properly, there are different stages of cirrhosis that vary in severity.

He gave the analogy of a car that has been in an accident. There is Type A, where the car has been in an accident and has suffered some minor bumps but it starts just fine and runs well. There is Type B, where after a car has been in an accident it makes some noise, needs some attention, needs some repairs, but it will turn on and run OK. Then there is Type C, where the car is damaged so much in the accident that it will not start and is totaled and needs replaced. Jordan’s liver is not totaled, it just needs some repairs and careful attention but with time it will run and function just fine.

Therefore at this time the doctor did not foresee a liver transplant in Jordan’s future. He said that if Jordan did what he said to do he could live the rest of his life with the liver he has right now. He was hopeful for Jordan’s future and said that within one year’s time he will see improved quality of life and live a long and productive life.

So the doctors gave us 4 things to do to help his liver. Abstain from ever drinking again, quit smoking completely, eat nutritious food, and exercise. He said if Jordan does these 4 things and continues with his medications and follow up appointments he will see a complete recovery and his liver function will go from a Type B to a Type A. Which is a properly functioning liver that has some scarring from the cirrhosis.

Right now Jordan still has some portal hypertension in his abdomen causing swelling. He is taking medication to reduce the swelling but will have to take it easy to avoid causing too much pressure. The doctor said that his veins are like a tight balloon right now, a little too much pressure and it could burst causing more bleeding. With medication and rest the pressure will subside, as the liver will continue to heal with time.

He reassured Jordan the reason for the most recent hospital stay was nothing he did. It was just a symptom of poor liver function and said people have died going through what Jordan went through. And that he was pleased with Jordan’s progress and is hopeful for his future.

We were very encouraged after meeting with the Liver Specialist. He said his liver is in better shape than it was in August 2015, that his blood pressure was beautiful and his kidneys look great. With rest and time and following what the doctors say he will make a full recovery and have a great quality of life.

We are so thankful for this news and the many doctors that have helped Jordan this last month. We are encouraged with the state of his liver and that it will continue to improve and heal over time. We thank God for allowing us the opportunity to trust him when life is hard and give Him all the glory.

Bilirubin Blues: Home at Last

The last two days at the hospital were long and boring. Jordan was not hooked up to anything, eating solid foods and still taking his medications my mouth. He was mentally ready to come home on Sunday when I last saw him at the hospital. But he knew that they wanted to keep him longer because he had been running a low temperature for a few days and they wanted to check for an infection. They also wanted to see how we did with solid foods and watch for anymore bleeding.

He told me it was hard for him to sleep in the hospital for obvious reasons so he tried to keep busy by doing puzzles and walking around his floor and down to the gift shop.

When he did come home after 6pm on Tuesday he was so tired. After trying to eat a salad because it sounded good he showed me his prescriptions. We laid them out on his desk and divvied them out for the week; it looked like a small pharmacy. He will be taking some for maintenance; like vitamins and another for itching, some for several days like antibiotics, and some to help with the pressure on his organs until he can get a transplant.

Today, Wednesday, he slept for almost 24 hours with some bathroom breaks here and there and also to eat something. He will continue to rest a lot and take it easy. He is still in a lot of pain. He will not be able to work for a while and we are going to explore disability options.

We are going to try to do a soft foods/puree diet for a week just to make sure his body continues to heal and only eat things that are easy on his stomach.

We have our meeting with the liver doctor this Friday morning. I will be taking the day off and going with him. We will be asking specific questions about what to realistically expect going forward and to get a clearer sense of our options. Please pray that we will have the wisdom to determine what are the best steps to take right now for Jordan. Also pray that the liver specialist would identify the best options for us.

It’s going to be a long road of recovery ahead and just because he is home does not mean that this is close to being over. Pray for continued perseverance and strength through this season.

Also pray for me. I have been riding the emotional merry-go-round the last 10 days and trying to do a lot of things. Some days I have energy and do things like get my car fixed and then there are other days were I come home from work and just go to bed because I have no energy.

This week I have felt like I was getting sick but it could be allergies, either way I don’t feel the best. And for those who know me I have had back problems for a few years and that started up again so I basically hurt all over.  

Through it all I know it’s a season and that we will make it through. Its times like this when I think to myself, “Hard is not bad, it’s just hard.” That’s were I am at, it’s just hard.

Bilirubin Blues: Waiting to Come Home

I got a text last night from Jordan saying that they were transferring him to IU University downtown. I knew it was the best thing for him but selfishly I wanted him close to me.

After a productive morning of running errands, I drove downtown with Jordan’s mom and sister. This was such a relief to me because I get anxiety when I drive to places I have never been before alone. Thankfully they had been to IU University when Jordan had his surgery a few days earlier so they were familiar with the area somewhat. It was one less thing for me to worry about.

When we walked into his new room I was struck by how small it was compared to the room up north and noticed he had a roommate. Once we sat down he was telling us that everything there took 10x longer. Granted they are a much bigger hospital with not a bed to spare. IU Health really is one of the best hospitals in the country for liver and GI related issues. We were just thankful that Jordan got a bed after waiting a few days, even if he had to share one in a room with another patient.

Anyway, at first I was saddened when I saw Jordan because I could just tell that he was tired of being in a hospital room. He was sick of being sick and ready to come home. Before we arrived he asked that we bring him a venti white chocolate mocha from Starbucks because they had cleared him for a full liquids diet. No more Jell-O and chicken broth, now it’s ice cream and chicken broth! But the nurse did say that he could have caffeine and that Starbucks was OK. He said it was the best damn thing he has had all week.

After he finished his drink and we settled in we were able to talk. Because he was not hooked up and trapped in wires and not on lots of drugs he was alert and talkative and relished conversation. It was so enjoyable and refreshing. We had a precious time of talking and being together.

Basically they have been monitoring him all day. He is down to 2 IV’s with 1 drip. He is able to take pills by mouth instead of through the IV. He has not had any bleeding today but that is what they are watching out for. The main reason why they wanted him at IU University was in case he started bleeding again they could do an emergency colonoscopy to find out where the bleeding was coming from and stop it.

He had a number of visitors today, which really helped encourage his spirit. He was so tired of being in a bed so we walked a few laps around the hallway. He was pretty worn out after that. He is so weak from being a bed for 7 days. He did say that today was the best he has felt all whole week.

Pray that he will get a good night’s rest tonight and continue to improve. Hopefully by being on the full liquids diet and getting rest his body will begin to heal so he can come home tomorrow. The only reservation with this is that they still don’t know what was causing the bleeding on Thursday night. 

The last thing they want is to send him home and then something happen where he starts to bleed again and wind up back in the hospital. We are longing for the day where he can come home and sleep in his bed and see his dog and be with his family.

Encouraging Music

Music is powerful. These are some songs that have been encouraging to me this week. Take a listen and follow me on Spotify @tonickitten.

Bilirubin Blues: Unexpected Turn of Events

I got a text from Jordan at 11am today saying that they moved him back upstairs in intensive care on the 4^th floor because he was having bloody stool. My heart dropped. "But he was doing so well last night," I thought to myself, "why he is bleeding again?" I had already decided to take a half-day that day because it had been a long week and I needed a break.

Once I got off work at noon I went over to see Jordan. He was back in his hospital gown sucking on swabs and looked miserable. He told me that they wanted to do a colonoscopy to hopefully find where he was bleeding and put a stop to it. He was getting ready to head to the OR soon after I got there.

Because they went in with the endoscopy and bond 4 varices they wanted to take a look at the other end to see if maybe a varice on his lower stomach or colon was causing the bleeding. I kissed him good-bye as they wheeled him away and called his parents.

Thankfully his parents were able to be there when he came out of surgery because I had to go home and let the dog out. (I had lunch with my Mom, which was so nice and very encouraging. Love you Mom!)

Once I came back to his room and asked his parents how the surgery went I could read the answer on their faces. They didn’t find anything during the colonoscopy. They didn’t know what was causing the bleeding. They said they wanted to send him the IU University to have more specialized doctors look at him.

Needless to say I was distraught. Living so close has been a blessing. Driving 30 minuets downtown is going to be challenging.

After Jordan heard the news of the results he was very discouraged and depressed. This was day 6 and he was weary of being in the hospital and not getting better. Any progress that he made would be met with another set back leaving him feeling like this was not going to end.

The hope of being transferred downtown is so that more specialized doctors can monitor him and figure out why he is still bleeding. If he does start bleeding again they will be able to respond more quickly. But because of the bed crisis in Indy he is waiting for a room tonight. It is possible they could transfer him tonight if a bed becomes available or they will wait until morning. He was put on a clear liquids diet today so he at least he is able to eat, even though he is sick of Jell-O and chicken broth.

Please pray for perseverance and encouragement through the spirit for Jordan. He is very weary and ready to come home. He wants to get better and do what the doctors say but this stay is taking a toll emotionally.

Bilirubin Blues: Jordan's Surgery and Recovery

After the events of Tuesday night Jordan is recovering very well and in a much better state. Wednesday was a long day. He had to wait most of the day for the doctors to coordinate his transportation and surgery downtown at IU University. He recalls it being miserable; just waiting in bed for them to transport him. They wanted to do another endoscopy with the doctor’s downtown with equipment that IU North did not have to find a permanent solution to stop the bleeding.

After being taken down in an ambulance and scanned into the new hospital they started the procedure. They found 4 varice enlarged veins, on his esophagus that were bleeding into his stomach. So they placed 4 bands around them to stop the bleeding. From my understanding once the swelling and pressure goes down on the varice the bands will denigrate and fall off. He will still need a follow up endoscopy in 4 weeks to make sure everything is healing and there is no more bleeding or ruptured veins.

Once this procedure was done he was in recovery only long enough for them to call an ambulance and take him back to IU North. Remember the bed crisis? I am so thankful that he was taken back to Carmel because being 5 minutes away is a huge blessing and had taken away a lot of stress.

His parents and sister were able to be with him during his transportation downtown and back which was a relief to me knowing that they were with him. They filled me in on what the doctor’s said after his procedure.

They were positive that if Jordan will do exactly what they tell him to do; attend all the follow up appointments and take all the medications and meet with the liver specialist, that he could be a candidate for a liver transplant or some type of procedure in the not so distant future.

Today, Thursday March 10^th, Jordan was feeling much better. He was kept on the intensive care unit on the 4^th floor all day only to monitor him after his surgery. He is on a clear liquids diet now, i.e. Jell-O, chicken broth and popsicles, instead of swabs. All Jordan could have after surgery on Wednesday night were these swab things. Basically he would dip a sponge in water and suck on it. They ordered this because the surgery was so invasive that he needed to use this method until his stomach could handle more.

I was very encouraged to see his progress from last night to tonight. It was a complete turnaround. He was up and walking and much more alert and talkative than he had been all week. So tonight he was moved back to progressive care on the 3^rd floor from the intensive care unit on the 4^th floor.

As he was packing up his stuff to go downstairs the nurse was joking with him that he better not come back to visit. By the way, I just wanted to mention that during both our stays we have had great nurses. They truly do amazing work and I am so thankful that these people choose to do it everyday.

They want to keep monitoring Jordan tomorrow and we will hopefully have him home by Saturday. I want to thank everyone for their support during this time; it has truly meant a lot to Jordan and I to know that there are people praying for us.