RSV/pneumonia

                                                March 10th

 

Tristan has a fever again today. We were not even home 24hrs when I called the Hospital and they said bring him in just to be safe got back up at Primary Childrens and found out the nose swab test taken yesterday came back positive for RSV. They also took a Chest x-ray and confirmed pneumonia.

 

 

                                                   March 11th

 

                                         Poor sick little man!!  :(

 As a mom I am about to break. I don't know if I can watch this little boy go through much more in a 2 week period of time as well! He has ways been such a healthy child, this is so so difficult to experience!
Chris is staying for his first overnighter with him. I came home to rest with Tanner. I finally feel like Tristan will be ok. I need some rest too.

 

Tonight we have the "isolation" room again at least we have a view (can almost see home) & Tristan seems to be improving. : )

 

We will be here for sure another night and his next chemo is Tuesday, this will be over a week with everyday visits and overnight stays here.

 

                                                               March 12th

 

Okay Monday, lets try this again! New week, new attitude!

Let's go kick some Bone Cancer butt!

 

 

March 13th

The pneumonia is much better, he still has a yucky cough Today he had some IV fluid and an outpatient

Chemo treatment.

He was very tired and weak so I had to carry him to the oncology clinic (no wheelchairs & too tired to use crutches all the way). He has lost 5 lbs. thats a lot for a boy of his size. He started to cry because he thought he would get a feeding tube today. Tomorrow home health will bring supplies and I will learn to access his port (IV) and he will continue fluid and nutrients (TPN) through a constant line at home. I will also learn more about placing and using a feeding tube. He will not start using the feeding tube unless the IV nutrients are not enough.

He is not eating well, nothing tastes good and he's never "hungry". He already has some mouth sores so I don't think that helps the situation.

He wakes up every night just after falling asleep with very bad back pain. Tonight I wondering if it might be his kidneys. This type of Cancer requires heavy duty very aggressive Chemo meds so he is already having the nasty symptoms : (

Including all of the above!

No more Chemo until Tuesday, then we have an inpatient 5 day treatment. I hope he feels better tomorrow. ♥

P.S. I rented the movie Jack & Jill. Tristan was laughing so hard many times during the movie! It was good to see him laughing even though he didn't feel well! He is so adorable. Tanner is doing well too, he has been taking care of the bunnies and dogs all on his own. He is such a good brother always praying hard for Tristan each night.

 

March 15th

 

Back at Primary Childrens again today with a fever AGAIN ...This fever thing really frightens me. He is so lethargic and wiped out that he cannot even keep his eyes open. He did not want to go back to the hospital but I was super stressed something was wrong. He agreed to go willingly if Tineil rode with us again, so she came and made that trip much easier for me. He had a fever so they took us right back and started  IV antibiotics in the ER. They also took another Chest x-ray (3rd in 5 Days) Then they admitted us back to ICS upstairs, 4th floor is becoming familiar to us. 

 

March 16th

 

Long day just  more waiting to hear what is causing the fevers. Tristan's ANC (blood count) count was Zero which means he has zero immune system, no fun. They continued antibiotics and inform us that he will have to stay at least 48hrs from when they started them we are staying another night. 
Chris is coming to stay the night with him again so I can go home and get some rest and be with Tanner for awhile. I went home Cleaned a little, caught up on laundry and moved Tanners furniture into his new room. Tanner moved down to the basement, we just had the Carpet installed and finished two rooms (yes during all this chaos). Tanner's room is a Red Sox Theme. I also made Tristans room a Surf/Skate theme. I hope he likes it when he is able to return home. It was nice and felt good to get something done at home for a change. 

 

March 17th

 

Staying yet another night for observation no fever today but he did have another panic attack last night. He has had a few of these now, mainly in the middle of the night. He wakes up in a sweated panic talking or crying things that don't make sense. His heart rate elevates to the point that the alarm rings. 
 Chris had the nurse come in- No fever, but he was sweating like crazy so may have been breaking past the fever? Medications can also be causing these, its a little scary.

 

 

Today I want to whine.... Feel free to skip over this post.
Today we should be at the airport flying out to board our Cruise ship that will leave tomorrow. We should be nervous and excited for our first family Cruise adventure! -Instead WE are all fighting to keep our Tristan healthy to fight this cancer.

 

 

 

                                                     March 17th Night & 18th Morning

 

He is starting to loose his hair and told Tanner last night "it's not bad I am just shedding like Georgia" (our Bulldog)

 

 

 

March 18th

 

 

Today Trisan has been able to stay awake a little more and is feeling a little better, but we are staying another night  due to his sodium is very low it's called SIADH-- Uhm yeah another very RARE side effect that usually does not happen. (Tristan is so special he keeps having the "RARE" things happen)!

 

 

 Chris & Tanner are coming up again to spend the day with Tristan!

 

The hair is going quickly now....Chris is bringing the hair clippers....He will be bald today!

Both pictures he is swiping hair off his shoulder. he had hair all over his clothes, face, blankets, pillows EVERYWHERE. 

                                                                 Love this boy!