Tuesday 8/4 - One Month

Yesterday morning we spoke with Kameron’s pulmonologist on the phone. I was in and out of the conversation because I was trying to keep Kason happy. But, Matt & Daniel were able to listen.

He told us that hopefully this week we will see the positive effects of the Cytoxan. The medication usually starts working 7-10 days after it’s given and they gave it to Kameron LAST Monday (7/27). It is lowering his blood counts but, that will lower the effects of the lupus. Like yesterday his White Blood Cell Count was something like 0.2 (and today is 0.3) – when normal in above 4 (If I remember correctly). So, he has almost NO infection fighting cells right now. We have to wash our hands before we go into his room and we can’t touch him at all. His platelets were at 35,000 yesterday and they did say that his H&H count (which I believe is hemoglobin and something else hemo) is at a good level. His sodium levels are low and his potassium levels are high so they are adjusting his TPN (nutrients in a bag) levels and will mix all his medications in salt water instead of sugar water. They also increased the amount of liquid food they are giving him. This food is basically like Ensure, specifically for ICU patients. And his oxygenation levels are at 70%! Just on Friday they were up at 90%.

Dr. Hueng also told us that Kameron’s pancreatitis is completely resolved so, there are no concerns there. Everything left, that is being affected, is because of the lupus.

Dr. Hueng used a lot of medical terms that I didn’t know so, I would get confused about a lot of things and then have to run off to check on Kason and I would miss parts, it was hard to not be able to just sit and listen and ask questions.

He was saying something about some equipment that they have at University Medical Center (UMC), that they don’t have here at TMC. It would help Kameron in his breathing (I THINK! I wish I could remember) but, he is so sick that they don’t dare transfer him to another hospital. They aren’t even taking risks to transport him out of his room for a CT Scan so, there is no way they would move him to another hospital!!!

And … he is thinking that Kameron still has another 2-3 months in the hospital followed by extensive physical therapy. We have got a long road ahead of us and I need to make some decisions about what I am going to do. I want to be with Kameron now because he is so sick – but, he is sedated and I can’t even talk to him. Then when he is on the mend and not sedated, HE will want me there and I will want to be there. It’s so hard to know what to do!!!

Dr. Hueng also said that Kameron has a high risk for mortality. Like … 60%. But, the doctor’s are all hopeful and they say they are going to do everything they can to get him better. I have faith in his doctor’s and I have faith in Heavenly Father that he will fulfill the promises he has made to Kameron, through Priesthood Blessings, that he will make it through this.

It doesn’t make it easy to hear that 60% chance of mortality though. It kind of shakes your faith a bit and it makes you question what is stronger – medicine or God? But, we all know the answer to that and I know that miracles happen and that I have one strong husband who isn’t going to give up. He has too much living left to do to give up now!!

Today when I spoke with Dr. Hueng on the phone he said that Kameron’s lungs are improving. They are also being very cautious about infections. Last night Kameron spiked a fever of 101.8 so they cultured all of his lines to see if he has any infections. Cultures take 2-3 days so, we will know the results of those in a few days. If one of them is infected they will pull it out and replace it. They did start him on a new antibiotic today, just in case.

His nurse today told me that they are no longer pulling fluids out of Kameron, which they were doing for awhile. This makes him look so skinny because he doesn’t have all the extra fluids in his body!! Also, they were able to lower his blood pressure medication and hopefully will be able to stop it completely by the end of the day. His oxygenation is at 70% and he also has 70% of oxygen in his blood – which is good. His carbon dioxide level is down to 50, which is the lowest it has been in several days. A normal carbon dioxide level is 45 – so close! They are continuing the CRRT (dialysis) which is pulling the toxins out of his body. And, today Kameron’s brain activity has been high. He will be normal for awhile (normal is around 30…and I don’t know what brain activity is measured in but, 30 somethin’!) and then all of a sudden it will jump up to the 70s or 80s! So, his nurse increased his sedative this morning but, he has still be doing it and they aren’t sure why. Maybe it’s his way of telling us he is sick of this. Who knows?

I think that is all for today. Some very encouraging news today – proof that Kameron is fighting! I sure love him and I am grateful that he is so stubborn. See, before I would always complain about him being stubborn but now I am very grateful for that trait!!