November 7, 2016 ~ Admission & Home

After travel and a tiring weekend, Cole continued to sleep nonstop. He also appeared noticeably more pale than normal and just seemed more "off" than normal. After eating at me all morning on Monday I decided to text our Visiting Nurses nurse and see if she could come do his labs one day early instead of waiting until our normal Tuesday time.  

So incredibly glad she came because his labs were extremely low and very concerning. His hemoglobin was around 4.3 or so (scary low), his platelets were gone and his ANC (immune system) was still zero even after his shots for a week and the weekend.  We were instructed to take him to the ER asap. Since we are an hour away from CMH they told us to go to our local ER to have him evaluated to make sure he was stable to ride in the car for an hour. We felt he was, but their standard is to have him assessed for stability.  In feeling him we could also tell he had a fever which would mean he would be admitted to the hospital since he was neutropenic. Experience tells us that it was probably just best to take his temp to officially declare him having a fever so they could go ahead and get our room ready on the floor.

So I called back and notified them of the fever hoping we could skip the ER and head straight to the floor for his antibiotic (protocol with neutropenia and fever) and get his transfusions started. This was kind of a debacle because they still instructed us to go to our local ER (per their protocol) but we did NOT feel comfortable with that at all to be honest. We feel it's safest and best for Cole to always go straight to CMH unless he's critical, which he wasn't. 

So long story short, we made the decision to go straight to CMH. Labs in the ER showed his hemoglobin dropped further to around 3.7 so we were glad he was there to start his transfusions faster. We were told he could start his blood transfusion faster in the ER so as not to have to wait for the floor so even though we knew he'd be admitted they still had us go there. But ER said they didn't know why we were told that as he would start until the floor. Needless to say I was very annoyed and shared as such. Further, there was a "glitch in the computer system" and we ended up sitting in the ER room for 3 hours. While he did get his antibiotic (protocol for fever and neutropenic), he had to wait until we got to the floor to get his platelet and blood transfusions. So of course I was pissed he got his blood 5 hours later when it was so crucial. Because he was so low they had to transfuse at a slower rate and divide it up. He ended up getting two full units when done.

Unfortuntely, the mucositis did further develop...evil bastard.  But, not as bad as the last time, thank the Lord. We all have bacteria in our mouths so any open sore makes us susceptible to infection. Cole got  streptococcis because the open sores in his mouth enabled the bacteria to get in his blood causing an infection. This is the first time he had a positive culture so they had to start him on another antibiotic. Monday was the only positive culture and the days after were negative so the antibiotic was working. He has to be on it a total of 14 days so we'll have to do it IV via his port from home.  We're like home nurses now.  Cole also had to be on a continueous pain med drip and pump to control the mucositis but more importantly the lower back and leg pain from the shots and his bone marrow working in overdrop to raise his ANC/immune system. This frequently happens as I've discussed before due to the body working overdrive to produce therefore causing excruciating bone pain. Fever and pain management were our markers to control to get discharged.  With him having the infection, counts recovering and his body not ready for chemo, his 5-day chemo scheduled for this past Friday had to be postponed. 

Fortuntaely the mucositis didn't get worse and we had to wait for his ANC to rise which is what fights it since that's your immune system. Like last time, it was within a few days of his ANC meeting counts that things started to heal and his fevers went away. The mouth and bottom sores are still healing but he's so much better. After being admitted Monday Cole was discharged yesterday, Sunday, and got to come home. It was such a nice day and great for him to come home for Sunday football. 🙂 He was feeling so much better Saturday night and Sunday, it was so great to see him a little more himself and more talkative. 

The IV antibiotic has to be given every 24 hours so Cole has to go to clinic today for a dose and for Home Health to give us the home med and instructions for administering since it's IV and he'll come home with his port still accessed. So we'll have to be extra careful since it'll be accessed therefore susceptible to things. Again, this is a central line so no room for error and we must be safe.

Having Cole home is the best feeling, even better when he's feeling decently good and more himself. With each day he'll heal from the mucositis therefore start feeling better. We were able to get a walker from PT so he can use for his walks around the house. From all the bone pain and muscle soreness (and lack of use) he can't walk around on his own. So to help with physical therapy and getting things better he has to walk and do his PT exercises. It hurts and he's sore, but he has to push through. So far he's used the walker a few times since being home and is doing pretty darn good. Of course..it's Cole..what is he NOT good at?? 🙂    We were also able to get him his own wheelchair so we don't have to carry him around when we leave which is fantastic. He'll appreciate not having to be carried I think...we know he's independent and strong so hopefully this will help a lot.

So we continue physical therapy, IV antibiotic and other meds to work to get better each day. Nothing makes our heart happier than seeing Cole feel good.

We appreciate the continued thoughts and prayers.

#TeamCole🎗