Day 4 Well a little more sleep   October 10th, 2011

From Linda…
Most of the day Jake rested between receiving more platelets and whole blood. We also learned that while whole blood must match your blood type exactly, platelets don’t have to at all. Jake’s whole blood was an O negative while the platelets were AB positive. Something new learned every day.

We walked Jake a few times and kept him company. The dry mouth is still his most frustrating side effect, but he keeps trying different things. He bravely tried a lemon ice (too strong), orange sherbet (too thick and gloopy), marinara sauce (too spicy) and hospital pizza (too doughy). He is still looking for just right but will settle for tolerable.

On another note, several people asked about isolation or not for neutropenia (zeroed out immune system)

We discussed this with one of Jake’s nurses a couple of days ago. And yes here at the research center someone has done a study on it. The difference between isolation and just good precautions was pretty much even when it came to infections.  The nurse actually said that Jake was more in danger from the microbes he came in with than anything we might bring in. A patient might have a fungal infection or a bad gut bacteria that their immune system had been holding at bay which could run rampant once the immune system is weakened. Although in Jake’s case, we would know that by now. And part of the precautions is a litany of preventative medicines like antibiotics and anti fungals. Plus if his temperature starts to rise they do immediate cultures on his blood, this has happened a number times but it has never been an infection, knock on wood. 

For us the invasive visitors, we have mandatory antibacterial cleansing of hands at his door. We don’t share cups, utensils, or food. No kisses except in the air and from a distance. If we get the least bit snuffy or whatever, we can’t visit and we even have to report ourselves to the clinic to be checked. Jake walks around the hospital with a face mask on to protect him from errant germs. Since we walk outside, we take off our shoes at the door. No plants, flowers, fresh fruits, etc. in the room. Only Jake gets to use his bathroom.

Of course, since the infection level is equal, there must be some benefit to the patient having family under foot. Human contact even if it is though a blanket means a lot. We are also a great distraction – talking, playing games, watching shows together. We are also extra help: getting warmed blankets, retrieving his special foods from the patient refrigerator, doing his laundry, taking him for walks, massage his feet, etc. But really the benefit to both sides is an emotional one, we get to feel like we are helping and Jake doesn’t feel alone either. Again studies have shown that patients do better if they have family and/or really good friends to help them through these things.

 

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7 Responses

October 10th, 2011 at 21:58
LaDonna Says:

Linda, I know that my Jake always does better when he has you and the kids by his side! I wish I could be there too :D Give him an extra hug from me!

Love you!

October 10th, 2011 at 22:05
Barbara Leary Says:

You are so right about the emotional, spiritual and psychological benefits of family and good friends! Jake is a very lucky guy there! I am impressed with all of the information that the nurses and physicians there share with you, what a great resource you have all become for others facing similar issues. I know the nurses appreciate all the help too! Hugs to all! XXOO

October 10th, 2011 at 23:40
dara Says:

It really is great news that good general hygiene and cleanliness habits are sufficient to protect Jake from germs in his weakened state. Thanks for ‘splainin it, Linda! I am sure having all of you “underfoot” is much better for everyone, especially if games can be played :-) Hugs all around!

October 11th, 2011 at 01:22
Angela Says:

Wish we weren’t separated by this big ocean, wish we could support you in person. But Linda, you and the kids are really doing a great job. Jake, take care, you are on your way to NED!

October 11th, 2011 at 01:53
Dad Says:

Jake, Linda, kids and friends: We all can see that the light at the end of tunnel is getting larger. And what is the thing outside, just a few steps from the exit? Three large letter: N-E-D.
Go for it!

October 11th, 2011 at 05:23
George & Laura Says:

When we read these blogs we can hardly breathe. What it must be like to live them we can’t begin to imagine, The clinical language does a poor job masking the affection and closeness of the family. If love conquers all you’ve already won.

October 11th, 2011 at 07:54
Denise & Teddy Says:

Thank you Linda. More hugs today, to you all.