Faye's Fundraiser

In the midst of everything going on with Jon, I kind of slipped on helping with Faye's fundraiser. We want to get the word out about her fundraiser, it is going to be a great event!

Update.... here and there and everywhere

We left the hospital and everything got crazy!! I have been trying to play catch up and the blog made the list today. I didn't post that Jon had the blood transfusion last Monday before he even left the hospital. It took his hemoglobin from a 7 to a 9 so we hope it continues to climb.

Jon was doing ok at home, but after a few days he developed an awful cough and was having difficulty breathing. As most of you know, we have had a HUGE mouse infestation in our house. We didn't know if that could be affecting him or if it could be the swamp cooler bringing in dust or something. The morning after his cough started my mom called to see how he was doing, and I explained it to her and she said it would be a good idea to have him stay at her house, at least until we got the mice problem taken care of. So we packed him up and he is staying with my parents for now. I have been going back and forth to get our house cleaned up. I emptied every cupboard and closet and disinfected everything. I finished today, I don't think my house could be any more clean, at least the inside. We still need to take care of the garage. I am going to have help coming for that one, so in the meantime I will still go back and forth as needed and stay nights here with Jon, it may be difficult to catch us at home. If you need to contact us or want my cell phone number or anything, you can email me at hcarbine@gmail.com

Today I called Dr McDonald to talk to him about the cough and the fact that Jons swelling still hasn't gone down at all. He told me he wanted to see Jon immediately. We went in and he looked Jon over and listened to his lungs and then sent us to the hospital for a chest x-ray and lab work. We will get the results tomorrow. If his kidney function is fine, then he will go on a medication, if there seems to be problems with the kidney, he may be re-admitted to the hospital so he can be monitored again. Pray that the kidney functions are normal and it can just be treated at home.

To leave on a positive note: Our baby is turning 1 this week!!!! Kenzie's Birthday is Wednesday, she is such a joy to us!!!

Finally Home!

Jon was dischaged this morning. We are finally home!! Now it's time for me to get caught up on life while he gets lots and lots and lots of rest. I would love to say that just because he got to come home he is all better. He will get there!! Thanks for all your love and support. I will post pictures shortly!

BLESSINGS!!!

Sorry I haven’t updated in a few days. Jon’s dad flew in for the weekend and stayed with Jon and I was off spending time with our kiddos. We went to the day care of the gym I go to (it was my day to volunteer). It worked out perfect because it was the perfect excuse to spend time with the girls. Then we came to see Daddy, it was a very short visit, they were kind of out of control. That night we went swimming at the Roy Aquatic Center. It was nice to be able to spend the whole day with the kids after only seeing them an hour here and there for over a week. We slept at home on Saturday night and went to our ward on Sunday, came to visit Jon, and then went to my parents for Father’s Day Dinner--unfortunately, without their daddy.


I don’t think much happened while his dad was here. They did an ultrasound on his arm to check for infection in his arm. They also started Jon on insulin—one of the medications has caused him to be diabetic. Most likely it will be a short term thing, but you never know. A healthy diet change has never hurt anyone. Yesterday morning, Dr. McDonald came in to talk to us. He said that he had all the discharge papers filled out and was ready to send Jon home as long as the blood results were okay. Well, the culture for the infection came back positive. That means more IV antibiotics, which means Jon doesn’t go home yet. He is also going back for an echocardiogram again this morning. Just to make sure everything is still good. Also, James blood will probably not be ready until the end of the week. It doesn’t mean Jon will need to stay that long, we just are unsure about when he will get to go home and stay home.

Now that you all are updated, to the good stuff. I know that what Jon is going through is awful. I have seen him experience so much pain and be unable to move. It has been hard for him. But, at the same time, I have learned that focusing on the bad stuff makes it worse. I have found myself counting my blessings more and more each day. When Faye was diagnosed with leukemia, I was talking to Stacey and I said, “I am sorry you have had to go through all that you’ve been through.” Her response amazed me, she said, “Ya, it’s awful what Faye has to go through, but I can’t help but think of how blessed we have been through all of this. We were in the right place, Nick got his job and insurance, we had Nixon before this all started, and she went on and on about all her blessings.” People on the outside look in and think how awful it must be, but she taught me a lesson that things could always be worse and you just got to look at the positive.

So, I have to list all the good things! We are blessed that Jon graduated college before all this started. We are blessed that while our property has had some flooding, no water has even touched the house. We are blessed that so many ward members and neighbors have dropped what they are doing to come help us out, they have helped sandbag, pulled out a stuck car, checked in to make sure everything is okay. I have actually been amazed, because when we really needed people, we would have people show up and say, “I felt like I needed to come over,” or “I was just calling to make sure everything is okay.” When all of these people were coming and calling, none of them had any idea that Jon was sick. We didn’t tell anyone until the week that he ended up hospitalized. We also have been blessed that my mom is around and she quit her job last month so that she can watch our kids while I am with Jon. My parents have been the biggest help to us. We have been blessed with great doctors, who show us that they actually care. I know that people complain about doctors and say that they don’t trust doctors, Jon and I have put our faith and trust in these doctors and they have been great and have worked so hard for Jon. We are blessed that they found the problem fairly quickly (once we got with the right doctors). We are blessed with a great hospital staff. Each and every staff member that has entered his room have been awesome! They show their concern and dedication in making sure Jon is taken care of. They have stayed late hours for treatments for Jon; they have made us feel comforted with the situation. We are blessed that Jon has a good job with good insurance and that his boss and co-workers have been so supportive. We have been blessed with our relationship. We had a good relationship before this, but we were so busy in life that we didn’t take time for each other. Spending several days with the two of us has been great! We have been able to talk about things without being interrupted by the kids, or go on walks in the hospital without having to carry or chase kids—we do love our kid’s lots, but it is nice to have 1-on-1 time without them! We have been blessed with good friends, family, and ward members who have visited, called; let us know they are thinking of us, and offering their help, and for those that haven’t even hesitated to do things for us like mow our lawn, take care of our fish and chickens, come to give priesthood blessings, and just letting us know they are there for us. The outpouring of love and support has been amazing! We are also blessed because of our family members who are selflessly serving missions right now—Jon’s parents, and my brother and sister, Troy and Annie. I could go on and on, the blessings are far greater than the problems for sure! Jon will get through this, he will be healthy and strong again, and I know that without a doubt. Our faith is getting us through this. We are all going to have trials through life, which is what life is about. Our Heavenly Father is right by our side through this. I strongly do believe that he doesn’t give us trials we can’t handle, and the trials that he gives us, he helps us through. There is a reason for everything. If you don’t look at the positive of things, life is just going to be miserable! I am also thankful for the power of the priesthood. I know some of you don’t share our beliefs, and that is fine, but we need to all stand up for what we believe in. I challenge everyone to count their blessings and not focus on the negative in life--- it definitely is not worth it. Thank you for the love and support, we appreciate it!

Twin

Jon is doing much better, but he is still extremely weak. His hemoglobin is back down to a 7 and it is just staying there. It is supposed to be a 16. So, our doctor came to talk to us a few days ago and we had told him that Jon was a twin. He was talking to us and said he didn't want to do a blood transfusion because of all the risks and he thought Jons hemoglobin would go up on its own, but it just isn't. He also said that he didn't want to do a blood transfusion because if Jon needed a transplant down the road it makes it that much harder to find a match. The doctor came in to talk to us yesterday about this again. It was the same old story, these levels are back down, these ones are up, these are normal....etc. Also, he said they re-ran the blood cultures and they came back positive for the staph infection, so they hadn't gotten it all yet and had to do more IV antibiotics meaning he wasn't going home. He also said he still didn't want to do the blood transfusion, but then said, "actually, why don't you give your brother a call and have him come in." James and Liz had come down and spent the day with us, and then headed to Lizs parents an hour away, and so right after they had gotten down there, we called and asked James if he could do it. He didn't even hesitate. He came down immediately. In the meantime, the doctor called the blood bank to explain the situation. Well, James got down there and suddenly they didn't want to do it. They said that they hadn't done direct donations in 4 years because there was too much falsifying information. They talked to a few people and finally got it approved. It will take at least a day though to test the blood. That means Jon may be there a few more days. The doctor also thought about doing a PICC line since Jon has to have treatments every month. We are unsure where everything is going to go for now because our doctor is just taking things one step at a time. We are very thankful for James that he was so willing to do this for Jon. It truly is a blessing. We all want to see Jon start feeling better.

Better!

You guys probably don't care too much on these updates, but I figure this is easier than a ton of phone calls each day. No offense. It's not that I don't want to talk to you all, it's just that I have a very demanding husband right now, that requires a lot of my time and attention (I can't figure out why:)). Okay, he's not that demanding, he's doing so much better that we've started joking about it. That's right. He is becoming Jon again! I love it. He is doing so much better, all his levels are normalizing out and he is slowly getting stronger. The infection kicked his butt, but now he is kicking the infection out the door! We even went on a date last night. We walked to the nurses desk and back, then watched wipeout together. That's a huge improvement. For a few days he wouldn't even look at the TV and getting out of bed was unheard of to him! All in all he is improving. It will still be a long road with lots of treatments but he is strong and a fighter and he can do anything he wants to! Thanks for all the support coming our way!

Good News

Dr. McDonald thinks Jon is on the uphill. His levels have stayed stable. The infection that he has had is staphylococcus aureus. It is the most common staph infection. However, it is very difficult to treat. He also talked to us last night saying the infection was in his blood and urine, meaning it was spreading and because of that they need to check his heart. So Jon is going in for an echocardiogram this morning to make sure everything is fine there. He also said they will need to check the spine as well to make sure it hasn't spread there. But, the bacteria cultures they ran yesterday came back negative-- meaning he is fighting the infection off slowly but surely. It is very resistant to some antibiotics, so they are switching him to an oral antibiotic today, that works better, they need to make sure they keep it away. They will also give him a medication to prevent pneumonia-- before they thought he may have it, they were inconclusive-- but as of right now, he doesn't. I also talked to the respiratory therapist this morning when they were doing his treatment. Everytime they have done the treatment, they have said his lungs sound great. Jon has been saying he feels like he only has half his lung capacity right now. I asked them why he would be having such a hard time breathing if his lungs sound fine. They said that he is having anxiety and that is why he can't breathe. Everything he is going through has put a lot of stress on his body and so he is experiencing a lot of anxiety. The breathing treatments are to try to get him to relax. As long as his levels remain stable through today and tomorrow, he may be able to go home tomorrow night or Saturday at the latest. But like I said, it is all contigent on making sure his levels stay stable for a few days.

Another Day

Doctor McDonald just came in to talk to us. Jon isn't doing too well. The good news is that the white blood cell count is showing that it's fighting the infection. The bad news is his hemoglobin is back down to 7. His potassium is still a little high and his kidney function has decreased quite a bit. They may do dialysis, but for now they are going to monitor things. Also, Dr McDonald said he would rather not do a blood transfusion and is going to try other things to get his levels back up. He said if Jon's kidneys end up failing down the road and he needs a transplant it would be harder to find a match if he had a transfusion. Jon is still having a hard time breathing, but they have the respiratory therapists coming in every 4 hours to do treatment. He is also in A LOT of pain. His body is fighting the infection so hard and his body is getting stiff from being in bed for a week. He was able to do some walking around the hospital a few days ago, but now he struggles just to get out of bed to use the bathroom. The fever is down this morning, that's great news. We are just hoping he has reached the peak. I can't imagine things getting worse.... he will also be in the hospital at least a few more days. We would rather him be here where they can take care of him and help him get better. We would not want him going home again until he is well. Thank you all!

Bad News

Well, we enjoyed our short time at home. He woke up at 12:30 am shaking again, I took his temp and he was getting a fever again. They said if he got a fever, to give him tylenol and see if it got better, if not we needed to go to the ER. I gave him the tylenol and the fever kept going up. Finally it started going down again and by 3:30 am he fell asleep until 10 am. He woke up and wanted to eat. While in the hospital he got hooked on french toast, so I made him some french toast by his request. He was doing okay eating it, but then halfway through he started shaking again and getting a fever. Then he started throwing up and couldn't breathe. I called his doctor and his doctor was calling us at the same time. He said that Jon's blood tests showed he has a bacterial infection and we needed to head back to the hospital to be re-admitted. So, here we are again. They just took a chest x-ray and are starting him on an antibiotic. We will keep you posted, we're hoping he gets over this quickly.

The good and the bad!

After I did my last post, I was sitting there and Jon started shaking uncontrollably. I ran to get the nurse and she came in to check his temperature and it was at 102.4. She said we probably wouldn't go home after all. He was not doing well at all after that. But he finally stopped shaking and was able to eat dinner. They did the procrit shot and the final prednisone IV fluid. Then the nurse came and said they needed to give him cyclophoshiamide which is a chemo drug, he only had to do one dose through the IV which took about 2 hours. After the nurse finished that drug she took his temperature and it was down to 99. She called the dr and he said Jon could go home, we just have to keep a close eye on him to make sure it doesn't spike again.
Just because he is home doesn't mean he is doing great, unfortunately. He loses his breath really easily and is still massively swollen through his whole body. He is sooo tired, obviously, I would be too if I was going through everything he was going through. We will take it one day at a time and he will get better--- I know it!! Thank you to all of you for your support and prayers, it means a lot! I just ask that you continue to pray for Jon and Faye!

Jon's diagnosis

Jon has been diagnosed with Lupus Nephritis, which is a kidney disorder that is a complication of systemic lupus erythematosus. So, he has systemic lupus erythematosus, or lupus, which is an autoimmune disease. It is a lifetime disease that can have flare ups at any time, so we will need to live a healthy, cautious, lifestyle to avoid flare ups. He is between stage IV and V, V is the highest stage. You can read about it.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001512/

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=100&zoneid=9
 
I should also mention that he will do a 6 month aggressive treatment to get his immune system regulated. From there, he will be on a medication for life to keep things in check.
 
We are hoping he will get to go home tonight. They have to give him his third round of steroids and another procrit shot. His potassium level is still very high, his hemoglobin is up to an 8.2, his albumin (protein) is still very low. If his levels are okay tonight and Jon feels like he is strong enough to go home, they will send him home.
 
He has been waking up in the morning feeling great, but by afternoon he is so sick again, and then by evening he is okay.
 
It is going to be a long road, but we just hope his body will respond to the medications so that he can get feeling better quicker. He will need to stay on a low potassium diet for a while (my education is starting to pay off already!)
 
I'm sure I am forgetting things, but I will repost if I have forgot something. I will post pictures as soon as I get home (I don't have the cord to upload the pictures and my card reader doesn't work).
 
Thanks everyone!

JON

Jon has been very sick. He has been in the hospital for several days. This post just talks about what is going on with him. It is VERY long, it has several months of information. I am doing this post to answer questions as to what is going on, rather than repeat over and over and not give full information every time I talk to someone. Although, we still do not know exactly what is going on, we are getting there.

March 2011- Jon was complaining about joint pain and he started developing a rash on his face. We set him up an appointment to go to the Dr. The Dr. said it sounded like Osteoarthritis as far as the joint pain, and that he had eczema on his face that was infected. So he prescribed a medication for the osteoarthritis and an antibiotic and a cream for his face.


Approximately a week later he noticed that his legs and ankle area were very swollen. He went back to the Dr. The doc said that he had most likely had a reaction to one of the medications so he discontinued both medicines and was prescribed prednisone to counteract the other medications.

After 9 days of taking the prednisone the swelling had not gone down at all, and in fact had gotten worse. So he went back in and was prescribed a water pill to get the swelling to go down.

Two weeks later, the swelling still had not gone down. I (Holly) ran the Ogden Half marathon and got a foot injury (plantar fasciitis); I went in to see Dr. Beus, a different Dr than Jon had been seeing. While there, I began explaining what was going on with Jon. He said he wanted him to come in and wanted to run blood work. The next day (Thursday, May 26th), Jon went in to have blood work run. The following day, Dr. Beus called back and said he was severely anemic. His hemoglobin was at a 10 (should be 14-18), his platelets were 115 (should be over 150), and his white blood cells were low as well. As well as a few other issues. Dr. Beus said he wanted him to come back in a few days and re-run the tests.

Jon went back to be re-tested (Tuesday, May 31st). The next day the Dr called back and said the levels had dropped even lower. The hemoglobin was at a 9.6, the platelets were at 111, and the white blood cells had also dropped. He said he had scheduled an appointment with a hematologist, Dr. Stinnett. We went in to meet with Dr. Stinnett (Friday, June 3rd). He said that all the symptoms weren’t adding up. He was showing partial signs of leukemia, kidney problems, lymphoma, and autoimmune diseases.

Dr. Stinnett said he would need to start narrowing things down starting with a bone marrow biopsy. He did the bone marrow biopsy on the spot. They numb the skin, but obviously they can’t numb the bone. They go in with a thick needle and suck marrow out of the bone and then they also took two bone cores out to be tested. Jon got a call that evening saying the bone marrow came back clean and he didn’t have leukemia, but they were still testing the bone core. A few days later Jon got a call saying his potassium levels spiked and they needed more blood to check those.

His potassium levels were still high, so they told him to drink lots of fluids and he would need to go back the following week to be retested. In the meantime, they got the core samples back and they came back clean. So they scheduled him to meet with a kidney specialist, Dr. McDonald, and also said they wanted a chest x-ray, so we went to Davis Hospital to get the chest x-ray. The following day (Thursday, June 9th) we went to meet with Dr. McDonald and he said that all Jon’s symptoms were screaming Lupus. But they would need to do a kidney biopsy to know for sure what was going on.

They got us scheduled immediately for a kidney biopsy (Thursday June, 9th at around 2:30) and sent us immediately to Ogden Regional Hospital for the procedure, they also wanted a ct scan on his chest because there was something on his right lung. He went in to have the CT scan and biopsy done. The CT scan showed that the thing in his lung was just a calcium deposit and it was nothing to worry about. When they finished the biopsy, they went to put him into the wheelchair and he had an extreme surge of pain. The Dr, Dr Parr, said the kidney was bleeding internally and had Jon lay back down and had to put pressure on the kidney for the bleeding to stop. Jon said the pain was 4 times worse than the bone marrow biopsy; he started screaming and throwing up. The pain was excruciating. They brought him back to the room and he had a fever and was shaking uncontrollably trying to get warm. Originally, when they said he would need to have the biopsy, they told us we would stay for 4 to 6 hours just so they could monitor him. Because of the internal bleeding, they said he would need to stay overnight so they could monitor him, the bleeding did stop. They also gave him platelets and liquid iron and IV fluids. By 4:30 pm the next day we were still in the hospital waiting for any answers. While all of our loved ones are also stuck worrying.

Finally that evening (Friday, June 10th) the on-call kidney Dr came to talk to us. He didn’t give us much information; he basically just repeated exactly what he told us the night before, which was discussing the bleeding and levels. They told us they wouldn’t have the results from the biopsy until Monday, but Jon would probably get to go home in the morning. They discontinued his fluid, which was a good thing; I don’t think his body had any more room for fluids. His fever was also down and hemoglobin was very slowly increasing (which had dropped to 7.1 and was up to 7.4).

Sorry, the format will change here; these are emails I began sending to family members to keep them posted:

Saturday June 11th: Semi-bad news this morning. Jon’s potassium has gone way up again. They need to give him a medication to try to get it to go down. If it doesn't go down, he doesn't get to go home. Of course, we want them to take care of things as well. He hasn't been doing too well this morning. He has been feeling nauseated all morning. He has thrown up a few times. He also has a fever again.They are going to give him an anti-nausea medicine. We will keep you all posted.

Saturday afternoon June 11th: The on call kidney Dr (Dr. Mian) just came in to talk to us (Dr. McDonald is his actual kidney Dr). He is going to give Jon another dose of anti-nausea medicine (his nausea is not improving). Also, they gave him a medication last night to help him lose fluids, however, nothing happened and the swelling is actually worse today. So the Dr is also going to give him a high dose of that medicine to help him release fluids from his body. He is also getting his fever back which was gone last night. The hemoglobin levels have not gone up at all, but they haven't gone down either. They are going to do another blood test in a while to see if the potassium dropped.

** After I wrote the above, before I sent it, right after Jon had thrown up a ton, Dr Mian came back in. He is going to begin treatment. Jon will NOT be going home until at least Monday. The treatment begins with three days of steroid shots and then after that he begins an oral medication most likely for life. It is definitely a kidney problem; the steroids are used to treat that. But, the biopsy results are still unknown; he said they would definitely do the steroids for the kidney problem and then add another medication for whatever else is going on, whether it is Lupus or something else, like FSGS. When they get the results they will add whatever medication they need to add to the steroid treatment.

Sunday, June 12th: Jon is doing much better this morning. He has very little nausea. The rash on his face is going away. He is still swollen, but that is going down as well (this morning we discovered that he actually does have ankles---crazy!) He also is able to eat, he has just eaten a few bites the past few days, but this morning he ate his full breakfast! His potassium has also dropped quite a bit-- still not in a normal range, but it is lower. We aren't sure about his blood counts, I am sure they aren't going down because they would have told us if they had dropped more. This is all very encouraging that the steroids are already beginning to work. Yesterday was not a good day, but we can tell today will be great! I am getting small glimpses of the real Jon!

Sunday afternoon June 12th: Jon is still doing well, however, by 10:00 the swelling was back. The Dr. who performed the biopsy wants Jon to have a transfusion, but his kidney Dr said since he's so young, he thinks they can do other things to raise his levels. The nurse just came in with a whole list of medications he will be getting. He will get more liquid iron, they also gave him a blood pressure pill, and a pill to help his stomach, and they are also giving him a shot called procrit. Procrit is what they give cancer patients to increase the bone marrow production of blood cells. They also give it to kidney patients. He will be getting his second round of steroids in about half an hour. But for the most part, he is still doing far better than he was yesterday.

We will post things as we hear them. Thank you everyone!