Spiked a fever

I didn’t go into work today because we were expecting Jordan to be discharged and go home. Unfortunately, we didn’t get the news we were hoping for. Jordan had a rough night last night, and wasn’t feeling well.

She was running a mild grade fever all morning, just teasing at the magic number of 100.5 She had 100.3, 100.1, 100.4 The rule for admission to the hospital is a fever of 100.5 Since she was dangerously close to the fever rule, they wouldn’t let her go home. They felt she would just end up right back here tonight or tomorrow if they let her go home.

Needless to say, this was disappointing, but we understand the risk and appreciate the doctors not taking the chance.

She also was having a lot of chest pain so they ordered another Echocardiogram and an EKG. Both test turned out normal, so they are fairly certain all the chest pain is related to acid reflux.

They called in a consult from a GI doctor to make sure it is acid reflux. The doctor felt very strongly that this is the case and ordered Pepcid to be given to her in the IV instead of the other medicine that was given by mouth.

They took blood for cultures to see if there is any reason for the fever, other than the Chemo AraC.

Initial blood results so no issues, so they believe it is related to the Chemo.

Her port bled out today, so they removed the dressing and cleaned it up. I think it was bleeding because she was sleeping on her left side, which puts pressure on the port. Since the port is accessed right now with a needle, there is an open space where blood can seep out. The nurses think that might also be the case, but they don’t take any chances and have been looking at the port again several times today to see if it bleeding any more. So far, it has not.

Her day nurse was Kim today. Tylee was off. Dani is her night nurse and came on at 7pm. By 8:30pm, Jordan was running a fever of 102.9. It’s interesting how the doctor’s nailed that one. I guess they have been doing this long enough to know it would have happened and we would have been right back in the hospital tonight if they had discharged her.

Her blood counts have taken a nose dive since Wednesday. She essentially doesn’t have any white blood cells. She is now in the danger zone for the next 7 to 10 days. Highly susceptible to all illnesses, colds, cough, etc.

They also gave her Magic Mouthwash today for the first time. They are concerned that she might have sores in her esophagus and they cannot put a scope in her mouth to check on it because her counts are too low. She has to swish and swallow the mouthwash, plus they gave her another medication to promote healing of the esophagus.

She was taken off the blood pressure medicine today. Her blood pressure is now stable since they discontinued the Decadron.

When we saw Dr. Obzut today, we asked a bunch of questions in anticipation of going home.

Jordan cannot change the paper in her bird cages and Dr. O would prefer the birds not to be in her room, because they molt and stir up bacteria in the air. She cannot change the cat box for the same reason, it makes the bacteria air born and she is too susceptible to infection. (not that I had any worries about her wanting to clean the cat box) The cat can sleep with her without any risks, but no kissing the cat.

She cannot wear her contacts, because of the risk of introducing infection into her eyes from her hands.

She cannot go to the dentist or pediatrician offices.

There is still some talk about putting her on birth control pills to prevent her from having a period. When her platelets counts are so low, they cannot risk her losing blood. When platelet counts are low, patients normally have to get blood transfusions.

I learned something new about the platelet counts. I was confused by the numbers given to me earlier. I was told that normal counts are around 150 to 450 and that Jordan’s were at 2.4 million. The 150 to 450 number is actually 150,000 to 450,000. Today her count is at 411,000, normal level, but high considering she has had 10 days of chemo, yet not really high since they were 2.4 million. She could afford to lose them and it has left her at a safe range for now. The next Chemo session will probably wipe them out.

I had a chance to look up the “Philadelphia chromosome” on the internet today. Most of what I found is that it is normally associated with CLL, not AML, so there now could be some discussion about where the diagnosis if correct. There have been documented cases of AML-M7 with the Philly, but it seems to be rare.

Dr. O said she will talk to me on Monday in more detail. She wants to sit down for about an hour to discuss where we are and where we are going with the treatment. She also wants to give me more information about the Philly, so that I can better understand the impact of it.

We found out today that Tylee (one of Jordans favorite nurses) is actually being treated for Thyroid cancer. She recently had her thyroid taken out and is still testing “hot”. We never would have had any indication that this was true, except another nurse told us.

I think this gave Jordan a bit of hope, because Tylee looks great, and it is not at all obvious that she is going through a similar situation.

Last night Jordan told me she loved this place. I thought the nurse must have given her some drugs that were making her hallucinate. I laughed when she said this and reminded her that just the other day she couldn’t wait to get out of here. This is still true, however she has really developed a friendship with these nurses and she totally trusts them with her care. They treat her will respect and involve her in her treatments. They listen to her feelings about the effect from the drugs and take her seriously when she says she doesn’t want to have a certain drug again because she doesn’t like the way it makes her feel.

This only impacts the extra drugs of course. She doesn’t have any say on the Chemo drugs, but does on things like Benadryl, Motrin, etc.

Since she was running such a high fever tonight, Dani took more blood cultures, a urine culture and a throat culture. Dr. Tebbi is on call and he’ll have everything checked to see if there is any sign of infection, especially since her counts are so low.

I have to admit that today is really the first day that Jordan looked “sick” to me. She has had some bad days, but today, I could see it in her eyes. That look your child gets in their eyes when they run a fever or have the flu is the same look she had all day today.

The nurses are amazed at how well she is actually taking the treatments and we can’t imagine how much worse it must be for others, because it is quite hard on Jordan. We are grateful that she is tolerating everything well, based on what the nurses and doctors tell us.