Moving, moving and moving!

The last month has been crazy GOOD! T-man is doing great. His lab markers are looking good and his weight is moving up. We are still giving him daily antibiotics to help him fight bacterial and fungal infections, We will be doing this for the rest of his life or at least until bone marrow transplant. We also are doing the immune boost shots, which we strongly believe are helping him so much! We just had a follow up with ID and our CGD doctor at PCMC, both departments are very impressed with how is his doing. He did develop a rash from all the antibiotics. They called this rash a from of lupus. Because of the strength of the medications and the length of time he had been on them, it makes his skin very sensitive to the sun! We have to be very careful with him from now on in the sun. We have to keep a hat on him as much as possible and sunscreen as well. We have to even watch the sun in our house coming in from the window or even reflecting off of things. We feel like we can handle this although we do live in the heat of heat and a very sunny town.

Through all of this Tanner is still being Tanner and a growing baby. He is officially a MOVING BABY by army crawling all over the place, which is so fun but stressful because before I could keep him contained to an area on the floor that I knew was clean but now I cant. It will be fine, I will just be cleaning a lot more!

We also MOVED into our new house. We are in love with it and are loving the space! Although it is a lot more for me to clean but it is worth it.

THANKS FOR ALL THE THOUGHTS AND PRAYERS! LOVE  YA ALL

Life at Home.

May 30, 2016 - Jeff sent this picture saying- Well looks like we're going home! T's inflammation markers are all down in normal range. (0.9 compared to 11.3 a few days ago) So the doctor feel good about letting us head back to St. G. Hopefully we can keep it down this time!

Love waking to this happy bright blue eyed baby! T-man is doing great and was able to come home from PCMC yesterday. They are still not 100% sure what was going on in the lungs but they did a slight adjustment on one of his antibiotics and all the many prayers in T's behalf did wonders. His inflammation maker went from 11.1 (normal is <.8 ) last Tuesday to .9 yesterday.  He is still a little low on RBC but we are giving him an iron supplement to hopefully help with that. For now the plan is to keep him healthy and continue to push forward with the BMT (bone marrow transplant) #prayers #blessings #Tmantough #toughliketanner #jolleyfamily2016

Tanner has been home for over a week now. Its been great to have him home, but also nerve racking because I am always trying to keep things clean and make sure he stays healthy as possible. We have still been able to have fun together and enjoy the summer heat of ST. G.

T had been put on two forms of strong antibiotics. One is to fight fungal infections and the other is bacterial. Once we feel we have tanner in a stable part of his sickness they will change the dosage of the antibiotics to more of a preventive dose rather then a fighting dose. We have not received a pathology report yet on the procedures T had on our last visit to PCMC. We hope to get them soon so we can get some answers of what made him sick.

Another blessing is being approved for immune boost shots. (These shots are similar to insulin shots) this medication is extremely expensive but thanks to a number of things, our insurance has approved the shots.  Jeff  and I are the lucky loving parents who give him these shots 3x a week. He does not like it one bit but who would. Because of drug and the company who makes it, we had a nurse come to teach us how to give the shots along with teach us more about CGD. She help us relax a tad and gave us hope for this medication for T. She said that she has had many patients who have CGD and have done the 3 preventive medications (the shot and 2 antibiotics) and are living life fairly normal and doing well. This gave us hope for T man.  We are still planning on BMT tho.

Our baby boy has turned 6 months old.  Where has the time gone.  Its crazy how much our lives have change in such a short amount of time.  Tanner is still tanner.  He is rolling all over the place, loves to laugh,and can get in moods where he is very talkative. He enjoys watching his sister play around him and sometimes with him. In a general he is developing well.... although he has not gained any weight in the last two months. He still weights right around 15 pounds. This has Dr. M and or team Doctors at PCMC concerned. So they have giving us the OK to start solid foods. They hope with solids, breastfeeding and supplementing with formula that we can get him to gain weight.

Back to PCMC

Tuesday 5.24.2016

Jeff and T drove back to SLC to PCMC. They were admitted and things started slow. The only thing done was a blood draw and the team of doctors looking at him.

5.24.2016 This sweet boy and his amazing daddy are head back to PCMC. Unfortunately T-Man's numbers where not that great yesterday and he needs to be re-admitted and evaluated for a new infection and to try and find out why his inflammation in going up and why he is still on verge of becoming anemic. I know he doesnt even look sick and thats what i said to the doctors. And they said that whats har...d about his disease and his age. He can't tell me what wrong or hurting, all we had is labs and imaging. I stayed home to work this week and if he is still up there next i will go up then. It was so hard to let them leave, cause i just want T to stay home but I know this is what is best for him. And his daddy is amazing and make sure they do everything right and what he thinks is best for T. #herewegoagain #Tmantough #toughliketanner #jolleyfamily2016 #missthemalready

Wednesday 5.25.2016

They just kept evaluating T today along with ordering a CT of his body to see if we could see anything that could be causing a hidden infection and to check on his lymph nodes. Unfortunately CT was booked for the day. Because Tanner was an inpatient and it wasn’t an emergency they did not get it done until 5PM. So we didn’t get any results until the next day.

Thursday 5.26.2016

T’s CT showed that is lymph nodes were doing well, but something going on in his lungs. It could be the reason for his numbers rising and why his blood count was still low (If you have low blood and get an infection your body has a really hard time producing new RBC and building them up). The next step was to find out if the stuff in his lungs is a viral infection or fungal/bacterial. They did a nose swab to test for viral infection, but the only way to know for sure is to do a biopsy on the lung. They worked on getting it scheduled for later the afternoon or Friday sometime. Also with the CT, we wanted to look at his bowels for inflammation or any other abnormalities. His bowels looked great on the CT but felt they needed a scope and biopsy to double check things. We were fine with this because we would love answers and to make sure we can get him healthy so we can move forward with the transplant.

Friday 5.27.2016

They were not able to get T into surgery on Thursday so were being squeezed in today. The bad part of that was T had to be only on clear liquids all day and nothing for like 3 hours before his surgery. It was a rough day and he did end up getting into surgery around 3:30. I felt so bad for him because I am sure he was starving. The last time he had food was at like midnight. He did have some clear liquids but he did not care for those very much. I am sure glad Jeff was there and not me because I would have given in and fed him.
  

5.27.2016 this handsome babe has some procedures/surgery today. When they got to PCMC they did a CT of his body and found some yucky stuff in his lungs. They are calling it a hidden form of pneumonia. Although they don't know if its a fungal or viral infection. So today they are going to do a biospy on the lung to get cells and send them to pathology to get testing for which infection this maybe ...is and so they can know the course of action to take to get him better. With this surgery they will have to leave a drain tube in him for 48 hours to allow all the fluid to drain from his lung.

Also T-Man has had problems with blood in his stool since he was born. Most common cause is do to a milk/egg allergy in the breast milk. Long story but blood in stool is also a sign of #CGD. CGD can cause inflammation in his bowels which can cause blood in the stool. So today they are also going to a scope of his intestines and stomach and get a biopsy as well to see what's going on there as well.

Be brave and strong my son. Mommy loves you and I can't wait to be with you tomorrow for the day. I am sorry i am not there and i hope you will forgive me for it. But i am extremely grateful for your amazing Dad who has been with you this week and is there today. I know you don't understand what's going on but its all because we love you and its part of the great big plan. #surgery #Tmantough #toughliketanner #PCMC #jolleyfamily2016



And He is off!

 

The surgery and scope went great. It took about 2 hours to do both. The scope doctors were very happy with what they saw. Although they did see some granulomas, they were very small and not too concerning to them right now. The surgeon that did the lung biopsy was very pleased with the surgery and felt that they gave pathology some really good samples. Tanner did awesome. He had a hard time coming out of his anesthesia but managed to hold up fairly well. He had a tube left in his side to drain the excess fluid in his lung. It could be in anywhere from 24 to 48 hours.

 

Post Surgery - He is So HANDSOME!

Saturday 5.28.2016

Reunited with my little man and it feels so good.

One of the many blessings of Jeff’s work. I was able to fly up for the day and be with my baby. I just wanted to hold him the whole time. He is doing really well with everything. He is still sleepy and in pain but doing a lot better than expected. Not a lot of fluid has drained from the lung so they think maybe they could take that tube out TODAY. After doing a chest Xray this afternoon, we were able to take the chest tube out. He did so good during the process, and I hope it allows him to feel a lot better. It has been great being here with T and Jeff. Even if it is just a short time.

Home

The next two weeks consisted of us getting in our new routine as a family. We were able to play with friends, and go outside as long as it wasn’t windy. We were enjoying life and looking forward to moving into our new house in a little over a month. We had a follow up with Dr. Marsden one week after we got home. He just talked to us for like 30 minutes about how we are all going to be working together and learning together. Tanner had a blood draw the first Monday home. This is when his numbers (inflammation and WBC) started to rise and his anemic was still low (after T’s surgery he was really low on blood. We don’t want to give him a transfusion or iron because we’re on the path to do a bone marrow transplant and also because of his disease. If we were to give him iron or a transfusion while he had an infection, it’s possible that the infection will feed off the new health stuff and grow and not get better). Because his numbers where the way they were, Dr. Chen and infectious disease wanted us to see Dr. Marsden on the following day. Dr. Marsden was great to get us in, even on his lunch. He looked over T and called the other doctors to inform them on how he looked and acted. They decided that we could just keep him home and keep a close eye on him. The next week his numbers went up again and his blood count dropped. Dr. Marsden and Dr. Chen talked and felt it was best for T to go back to PCMC and be evaluated again.

Sister loves to watch Shows with you.

Happy Sunday with out Daddy

5.22.2016 Just an update on this Sweet Boy! He is doing great at home. And we are loving being home although We are busy with him and all his medications and trying to keep everything clean and spending time with C and one another. Before we left the hospital, the wonderful team of Doctors sat with us and gave us guidance on how to help our sweet little man and keep him healthy. One thing they di...d say and they had to keep reminding us is that he CAN FIGHT off viral infections, just not bacterial and fungal stuff. He is on daily antibiotics to help him fight infections. One thing they did say is don't live in a bubble but also take more precautions then normal. There is no black and white but a lot of grey guidance and how we feel as parents about what we do or don't do. We have been approved for immune boost shots and our transplant. So now we just need to get training on how to give him shots and the meds, along with finding a donor. Transplant is still probably over a year away. Just cause we want him to be a little old and healthy as possible. We have a couple doctors appointments this week and then our follow up with our Primary Children's team to make sure everything is going good next Tuesday. #Home #Tmantough #toughliketanner #jolleyfamily2016

Coming Home

Tuesday May 10^th

Was an early morning day. I had to get up and get ready to leave for home. I also had to get Caroline’s and my stuff ready. I could tell that she was so ready to be home. Jeff ran us to the airport and then came back to the hospital. After only waiting a little while, the team of doctors were happy with how well Tanner was doing and how his labs were looking. They said they needed to see if home health was arranged and if it was T could go home THAT DAY. We needed home health because T has a PICC line in his arm for his medications, and so that blood draws could be done weekly. It was a very happy moment when home health was all arranged and we got the YES to go home. They had to plan things just right because T needed meds every eight hours through his PICC line. Jeff had until four to get things ready to leave so he had to run down to the McDonald house and do everything there. He then came back to the hospital to gather everything up and do all of the discharge stuff. He is one amazing daddy to do all of this by himself. Our family in ST.G was also awesome. I wanted my house very clean before T came home to make sure no bacteria or fungal stuff was lingering in my house. Our family came and helped us clean our house really well and wipe everything down so it was ready for T. While I was at work I was able to help arrange things with home health and get T’s meds and everything he would need at home. It was kind of a crazy process but we made it work. Jeff and T left PCMC about 5:30 pm and made it home around 11ish. They we had to wait up for home health to come at midnight and help us give Tanner his meds. They didn’t have to come every time we administered his meds, just the first time to make sure we knew how to do everything and we knew what everything was.

Monday May 9th

Monday May 9^th

We were able to arrange a time for us to meet Dr. Chen today. I was happy about this because there was talk that she wasn’t going to be able to meet us until Tuesday and I was leaving early Tuesday morning to go back to St. G and work. We met with Dr. Chen and our bone marrow transplant doctor. We talk for about an hour and got all of our questions answered on both ends. Dr. Chen gave us a lot of hope in how our new lives were going to be along with really pushing for a bone marrow transplant. She wasn’t pushing in the sense of we had to it, but more in that for him to have mostly normal way of life and to live long and happy. Jeff was able to come back up Monday night after his shift.

The Weekend / Mothers Day

Friday and Saturday

Two great days of recovery for sure. We all just sat around and enjoyed the time we had together. Jeff was leaving to head back to work for the weekend on Friday afternoon, so we got his things together and took him out to the airport. Friday and Saturday consisted of lots of visitors for our T-man. He did really well after everything he had been through.

Sunday mother's day

Mother’s day at PCMC; It wasn't anything big and spectacular but it was one I will remember. T was doing amazing. He was responding to meds wonderfully and started to get a little personality again. Smiling and talking up a storm. The best however was his laugh and I was able to catch it on video which was even better. I felt comfortable to leave for a few hours and go have dinner at my sisters. It was great to get out of the hospital and have a home cooked meal. I love my family and the support they showed for us. We still were not sure when T would be coming home but we made arrangements for the next week, hoping we wouldn’t have to use them. We knew that we needed to see and meet Dr. Chen who would be our doctor for life with Tanner. When we were first diagnosed, we met another doctor who works alongside Dr. Chen. I did not like him at all. He did not have very good bedside manners and everything was black and white for him with no grey. This made some of his comments very contradicting. After talking with him, I was ready to meet Dr. Chen and get my many questions answered by someone who works with a large number of CGD patients and who had better bed side manners.