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.