Today's plan

Spencer was able to sleep pretty good last night after he finally got a breathing treatment.

He struggled through the evening with asthma attacks and it took until 1:15 this morning for the breathing treatment to happen.  The Respiratory Therapist said his lungs seemed diminished but they are using this little plastic stethoscope because of the infection risk so I'm not putting a lot of worry into that.  The therapist mentioned that his heart rate is not very regular and gets up there pretty high.  This is actually the first time anyone has mentioned this though I'm sure it's been a problem all along.  Spencer has been having problems with a racing heart and has complained about chest pain all last evening.

The hospital has been great to try and get things back on track for us.  I'm not really sure what has happened with this stay because it has never been so weird like this, but things are improving.  I know that mistakes happen and I know they have been slammed with patients so I really am trying to be patient.  I hate more than anything to be the squeaky wheel but I am also really worried about my son. I do appreciate their renewed efforts.  I'm the kind of person who is really into communication and when a problem arises; don't make excuses, don't lay blame, just correct it the best you can and move on together.  I feel that is how the hospital has handled the nursing glitches we have had and I appreciate that a lot.  I don't have much of a temper and just really want to be a team player and help each other.  I am not some spoiled brat with grand expectations.

I am still upset that we have not seen our Primary Care doctor.  Maybe I am wrong to be.  I just think that considering how sick Spencer has been for two weeks before anyone would even start testing for something big, and then to see that his bone marrow is so stressed and all the peripheral cells are messed up, it would have been nice to have our doctor come and assess Spencer himself instead of sending a PA who has never been our provider at all.  He really knows nothing about Dyskeratosis Congenita, the chemotaxis or toxic neutrophils.  I don't even understand all this.  I just needed, wanted our doctor to be here to reassure me that things would work out.  I needed him and trusted him to care.  Sometimes, the job of a doctor is to just be present and show some empathy and compassion.  Instead, we have been made to feel like we are in the way and a burden.  I need some support.  I can't do this by myself.  I need him to educate me,  and lead us along.

I hate being, here's a heart warming story.  I have these amazing clients right now that I am doing a remodel and addition for.   They happened to call me just as we received the news in Salt Lake.  I was pretty upset.  5 minutes after I hung up with them, I got a text saying the wife was packing her bags and coming down to stay with me.  They had called their daughter who lives in Murray and had her ready to come when she could get off work.   I was so touched.  Yesterday, she came up and brought breakfast and Jamba Juice.  Last night, her and her husband came to see us.  He is a physician and has been so concerned about Spencer.  They are just an amazing family and have been such a great blessing to us.

Also last night, the surgeon who did the kids' colonoscopies and endoscopes last month had heard about Spencer and he and his wife came by to see what they could do to help.  He was so good to sit down with me for nearly an hour and go through the labs we had done in Utah and he explained the process of this C-diff and how a bowel becomes perforated and he also taught me about Salmonella and explained what is happening in Spencer's gut.  He was so helpful and he let me express some of my fear and concern and he didn't make me feel like I was crazy or unreasonable.  He was loving and just helped me through this whole process.  It was another really great blessing from the day.

So...with the reassurance from my two doctor friends and their wives, the compassion from Infectious Disease doctor, Dr. Webb at Inter Mountain Medical Center, I feel more confident that I can take Spencer home and take care of him appropriately and at the same time, keep Shelbie and Sam safe from getting sick.   As long as the blood cultures at the 48 hour mark are still negative, that will be the plan...well, if we see the PA and he agrees.  He's the boss.   I spoke to Dr. Webb yesterday afternoon and he was so nice.  He reassured me that even though he isn't our doctor and he isn't getting paid, I can call him anytime I get scared or nervous about what comes up and he will help me.  That is amazing and that is a doctor that I want on my team.

The prayers and blessings are certainly helping.  I am so grateful to the many, many people who are praying for Spencer.  I feel much better about his situation.  I am so grateful to my family too who all were willing to drop everything to come and be with us.  Family is really what matters most.  Spencer's dad has been really great to be here around the clock too.  It will be nice to be home and together as a family.  One of the hardest things for me is the fact that I haven't been at the crossroads of the day for Shelbie and Sam.  I know they are adult children and all but it has always been the most important thing to me.  I have a rule that we eat together, we pray together every night, we are together for each other...when it can't happen like's just hard.   They have been understanding.  I haven't seen Sam in days.  He hasn't been up to the hospital.  He is incredibly susceptible to C- diff so we really couldn't take any chances.

I will post more tonight when I know for certain if we can go home.



  1. Your doctor didn't come, so the Lord sent 2 others! If things can't be easy, it's at least good to know He is in your corner.


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