The month of April started out so calm and peaceful. Our new house got started being built, I just received a new job – part-time status instead of PRN. Jeffs work was going good and Caroline and Tanner where healthy little people. Then we all got allergies/cold because the cotton trees and the wind started to blow like crazy. Tanner seemed to get the worse of it all. He received his 4 month old shots and then a week later was in the doctor’s office again for what we thought was a simple ear infection. That was not the case. About 5 days later tanner started spiking fevers of 104 about every morning and night. This was a constant thing. We took him to the doctor and we ran what then felt like a million tests in one day. From all of these tests we found out that he had what was called Parainfluenza 3B (very similar to a really bad cold) Our Dr. was happy about the result until the fevers still did not stop. With a couple of his fevers he got a rash, heat rash like. So we took him back in. He ran a ton more labs trying to find something. He called us multiple times and had other colleagues look at him. He called a couple other doctors that work for PCMC, and they gave us a couple of suggestions of other tests to run. When tests still came back either negative or didn’t give us a reason for his fever, we got the call we didn’t want, telling us to head to PCMC and be admitted for further evaluation. At this point it had been about 10 days of fevers at 104, at least 2X a day. So Sunday April 24th we drove to SLC to go to their ER and be admitted for further evaluation. When we got to the ER we did a lot of waiting around at first, and lot of explaining what was going on trying to hopefully find an answer. We did another lab draw, noise swab, urine sample, chest x-ray, and put in IV. At this point it had been a long day of driving, worrying, and making our little T-Man crying and it was far from over. One of the main concerns that mainly sent us to PCMC was the risk of Atypical Kawasaki disease (condition that causes inflammation in the walls of medium-sized arteries throughout the body, including the coronary arteries, which supply blood to the heart muscle.) The time frame for this disease is about 10 days of fever and then by this point, if you have the disease then you need a really strong antibodies to help your body get rid of it and to help it heal and have you return to normal. Well that was the first disease they wanted to rule out so we had an echo as soon as we got to our room and then we waited. We met with a couple of our team of doctors, explained things again and answered a million questions. At this point some test did come back that he did test positive again for the parainfluenza. With the echo and lab report back, the cardiologist came in to talk to us, at this point he was pretty confident that the fever was coming from the parainfluenza and the echo looked great! He didn’t think he had Kawasaki disease. The other doctors agreed with this and said they thought it was just the parainfluenza and that we would probably go home the next day. We were not comfortable with this answer, and neither was our Dr. in St. George. As we went to bed and said our prayers we prayed that our Team of Doctors would take a closer look at things and maybe find another reason for his fever rather than just the parainfluenza.
4.25.2016
As we sat and waited for our team of Doctors to come in, I was just sick and nervous that they were just going to send us home with no new answers than the answers we already had. We felt the parainfluenza was not the only reason for his fever. Our Team came in and introduced themselves and from the get go I could tell I was going to like the lead Doctor, Dr. Bernhardt Fassl, for a number of reasons. The first being that he did not agree or think that his fever for this long, and abnormal labs were caused by just the parainfluenza. Also, he had a really cool
accent and knew how to make this mom feel comfortable. With him not agreeing with parainfluenza we had to start with a whole set of things. First came the history all over again. Next came information where we lived and lifestyle he has had up to his point in his life, more labs and finally came the time for poking around and seeing if everything looked normal on him. They did find something abnormal. His lymph nodes in his neck were abnormally large and felt infected. We started the antibiotic that should have helped any infection in his neck area to go away.
Tuesday 4.26.2016
24 hours after you start an antibiotic you should usually see some improvement. Mr. T did not have any improvement. We did a CT to double check for any masses or abnormality. The good news was there was not prominent abnormality like a mass or lesions on his lymph nodes. We were happy with this because the way it seemed at the time was that it was an infection that just needed a stronger antibiotic to help it get out of the body. “Sweet!” we all thought! An antibiotic and some labs to see what infection for the next 24 hours and then we would be out of here.
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| 4.26.2016 Being sick is NO fun at all. Being sick and not knowing why is even WORSE. Our little T man has been feeling under the weather for some time with really high fevers. It all started with an ear infection that possibly lead to parainfluenza that lead us to still having fevers. Our amazing, caring, loving Dr is St.G ran all the test in the books to try to figure out what was wrong. After all the tests and phone calls our Dr and to other specialist and still no BOLD answers we were sent to the AMAZING PCMC for further evaluation! As we have sat here at PCMC we have felt the love and many prayers that have been said in behalf of our sweet family. We have been here since Sunday and with many more rest ran we are HOPING we have found the answer to the fevers. We love the amazing team of Dr.s we have for our sweet T man here at PCMC and hope to be on our way home soon with a health baby. #BigT #PCMC #happybabyevenwhensick #bigthanks #jolleyfamily2016 |
Well Folks T-Man had a different plan. He did not respond to the antibiotics. He kept having fevers like clockwork (every 11 to 12 hours) we would give him Tylenol and the fever would break and we would be good. Also his lymph nodes were still very swollen and hard. Well because of the no response after the first 48 hours on the antibiotic the doctors knew that they needed a closer look at his lymph nodes to make sure they did not create any pockets of fluid called abscesses that were keeping the bacteria in them. So we went for an ultrasound of the neck. It showed just the same as the CT, just large lymph nodes and no abscesses. So now we are back to square one… what’s causing the infections to not be touched by the antibiotic? Unfortunately, because the ultrasound did not show anything, and the report came back, Dr. Fassl was thinking that he did the Ultrasound too early for any pockets to be collected. But then again his labs were still not looking good from the antibiotics either, and they wanted to get a consultation from infectious disease. We decided that because it seemed like it was going to just be a couple more exams and testing to tell what is wrong with Tanner that Jeff could go home and work.
Thursday 4.28.216
Started out as a very frustrating day! We did absolutely NOTHING all morning! I started to get really upset because I was ready to be home. If they were just not going to do any tests then why did we need to be here? I finally expressed my concerns and WOW! The ball got moving very fast. Infectious Disease specialist came in to evaluate him and decided that they thought we needed some imaging of the abdomen to make sure there was no hidden reason for the infection to still be going on. Ultrasound had an opening and down we went. In the exam, I was watching everything like a hawk…. Then I saw it. A MASS! In the liver! I started shaking and knew I should not be watch anymore but I couldn’t help it. As the Technologist scanned the area, my mind was going through every mass that I had seen and learned about in the liver and it looked like 3 things in one… It had Calcifications, it had blood flow, and it was abnormal in texture from the surrounding liver. As I kept looking at it, I just had to tell myself to wait for the report from the Radiologist. As I waited I got more and more nervous… I kept thinking my baby is more than sick… HE HAS CANCER! Because I have access to my kids’ records through my health portal I was able to read the entire report. My thoughts came true as the report had the
wording HEPATOBLASTOMA. My heart sank… then I said wait for the doctor… but I couldn’t I needed to ask him a million questions and what we could do to be sure this was or was not cancer without a biopsy. So I had the nurse call the physician. They were very concerned by this, and came and talked to me very quickly. They said as of right now this is all they had to go off of. They needed more labs to confirm the imaging and that those labs would be drawn but would take a couple of hours…and they were not even going to draw lab till the morning! But to keep it in mind because the radiologist and team of doctors thought it was a very high chance of cancer. After they left I immediately called Jeff. He didn’t answer, I called again and once again no answer. I was going to lose it because I needed him so bad and he was all the way in St. G! Thank goodness my mom was there with me but still I needed my husband and then it hit me… I also needed our loving Savior more! I immediately went to him in prayer! I pleaded to help me and help Tanner and help me explain it all to Jeff. I called Jeff again and he finally answered and all I said was you need to get back up here, they think the mass in the liver is Cancer. The phone went completely silent. I knew exactly what my husband was feeling and that he was scared to death, as was I. We finally got everything talked out and things arranged for him and C to come up the next day! (Actually originally he was going to drive but the weather was bad and by the time he got on the road and that he realized it was probably not the best idea. It would be only 3 hours earlier of him being there and that there was nothing that was going to happen in those 3 hours.) After that came the long process of me calling my dad and all of the siblings. (Jeff called his) It was a horrible thing to have to retell over and over. As I told them I felt their hearts break and I hear the fear and concern for us in their voices. With their love for us and help I knew that our family could handle this… BUT ONLY IF WE DID IT TOGETHER. That night I knew I needed to get some sleep but I knew it would be hard. Because of the testing that needed to be done on Tanner, he was unable to eat after like 3 in the morning. So instead of me staying at the hospital with Tanner, I knew it would probably be easier for both of us if I went and stayed at the Ronald McDonald house. (We were able to get a room there after we were in the hospital for 2+ nights) I had a hard time falling asleep but I knew I needed to try so I could have the strength to help Tanner. I prayed to my heavenly father to be with me, Jeff and Tanner and to pray that we could handle whatever was about to come our way.
Friday 4.29.2016
Everything started early with labs drawn and sent for testing. Then the schedule changed for the day. We were trying to get all the testing done in the morning but we could only put him under sedation 1 time in a 24 hour period so we had to change some things. I was able to feed him in the morning and then keep him NPO (no oral food) for the next 5+ hours. Then running and getting Jeff and C from the airport. Oh, how I missed that little girl and she was just what I needed during this time. Our amazing Dr. Fassl came in early to talk with us… He actually didn’t do a lot of talking more than just giving me a Hug and letting me cry it out. He gave amazing advice and said that he had faith that he knew we could handle this. Unfortunately he was leaving for the weekend and would not be back on our services but wanted to keep in touch. He got our cell numbers and said he would call or text us for updates. Around noon Tanner needed to drink some contrast. Due to Tanner’s stubbornness, that didn’t happen. We had to put in a G-Tube to give him the contrast. Then about an hour later it was time to go get a CT of his body from his head to his pelvis, then right into a biopsy of a lymph node. During the biopsy we returned to ours/Tanner’s room to have some time together, just the two of us, (C was with grandma at the house) since this whole thing started. We cried, talked and tried to take a little nap. About an hour later the nurse came and got to us to go get Tanner. The biopsy went
well and they were about to get some good samples to be sent for testing for both infection and cancer. Shortly after we got back to our room the Dr.s came in to let us know the results of the CT and Lab work. The lab work was the big one to determine if T had liver cancer. The AFP came back normal and the CT said unless it was clinically indicated (meaning labs showed something in the cancer realm of things) it was probably just a hemangioma. So the Dr.s were pretty sure that it was not cancer but just to be sure they wanted to wait till more labs and testing came back and also call in the GI specialists and oncology teams to take a look. At this point it was already Friday evening and we all know what happens on the weekend at the hospital. It kind of shuts down to a point. So we would most likely not get any results or more information until Monday.
At this point – Tanners fevers were starting to become less frequent. I think we made it like 18 hours in-between fevers.
The Weekend brought a whole new pace at the hospital and gave us more time to spend together in a little room, hoping and praying that our little boy did not have cancer and just had a really bad infection that was going to take the strong meds and a little longer to heal. We did laundry had lots of visitors and family come up and see us. Along with lots of tears and support given to our little family.
Sunday was a day that was needed. At primary’s they have their own little branch that meets each Sunday for about 30 minutes to take the sacrament and have a speaker. This Sunday was fast Sunday. Jeff and I both needed this deeply and man what a difference I personally felt after having a day of peace and rest and time to focus on HIM, Our Loving Savior, instead of the worldly problems. It was nice to just spend time with our whole family with minimal interruptions.
Monday May 2 - Was still just a lot of waiting for labs and just making sure everything was going well. As we were waiting for lab, infectious disease decided that maybe they would check and make sure Tanner’s immune system was functioning properly. Although this test took a couple of days to come back, they still wanted it tested. As we were waiting for the Biopsy of the lymph node to come back the ENT Dr.s did not want to do anything until they had a report to make sure that Tanner did not have Lymphoma because you don’t want to cut into a possible chance for cancer unless you know what’s going on. We also saw the GI Doctors who spoke with the radiologists and looked at Tanners history and decided it would be best to get an MRI on his belly to better look at that mass – along with checking his whole belly for anything else. The MRI was scheduled for the next day – and because he needed to be sedated again that meant NPO after 6 AM for our T- Man.
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| 5.2.2016 Happy 5 months baby boy! You are such a joy in our lives. We are glad that we are getting you back to happy and healthy. Yes we are still at PCMC but he has finally gone 48+ hours without a fever, which means he is responding to the meds. Our wonderful team of doctors are doing everything to make sure we know what caused his fevers all along to make sure that if he gets sick again we wont end up at PCMC again. Thanks for all the fasting and prayers in our behalf. They have been felt and are being answered. #toughliketanner#Tmantough #jolleyfamily2016 #PCMC |
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