The sleep study results are in, more bad news!

Many of you know Tiara completed a sleep study at CHOC several weeks ago which was long overdue.  After talking with the technician I got the feeling the doctor was going to suggest/order Tiara use oxygen to sleep, but I figured I wouldn’t worry about it until he confirmed my suspicion.

Friday afternoon we had our appointment at CHOC to review the results.  Her pulmonolgist is the head of the department and obviously very smart but he doesn’t always have the best bedside manner.  He isn’t rude, he is just a little spacey, kinda of like an absent scientist that doesn’t function great in society.  After we waited in the room for 45 minutes, he finally walked in to greet us.  The first words out his mouth were,

“Well, looks like she didn’t do well with the sleep study?”

I was confused because I thought she did great with the process, so I kept my mouth shut for once and waited for him to continue.

Doctor:  ” She has significant oxygen desaturation during sleep so much so that it is probably effecting her the next day.  This desaturation puts strain on heart and over time can cause more problems, so she needs to sleep with oxygen every night.”

me:  “Oh, Ok then.  How was her Co2?”

Doctor:  “Hmmm, let me see I have the report printed out here somewhere?”

He gets up and walks out of the office and returns with a few papers and hands them to me.  In the meantime, Tiara leans over and grabs a big chunk of my hair because she is tired of sitting in the office and he just looks at me.  He doesn’t move to help, he doesn’t say anything, he doesn’t even look surprised.  He just waits until I get free and we continue on talking.  Funny guy!

Me:”  I have no problem having her sleep with oxygen but she normally throws it off during the night.”

Doctor: ” It’s not the end all of everything if she takes it off, but if she wears it some of the night it will be much better for her than not wearing it at all.  I want to get an x-ray of the lungs and see how they look when she isn’t sick.”

Me:  “That seems like a good idea.  Do you want me to do it today?”

Doctor:  “Yes, if it isn’t too much trouble or you can come back another time.”

As he walked out of the office he said “Oh, I am leaving for vacation next week, so if her x-ray report comes across my desk and is fine you won’t hear from me for several weeks.  If there is a problem one of my colleagues will call you, they can handle it.”

Me:  “Ok, sounds good, thank you.”

I then started thinking about whether Tiara could wait any longer and complete the x-ray.  We had to walk over to the new building, check in with admitting and then wait our turn.  The nurse called ahead for me and said we could get straight in so I decided to go for it.  With the help of myself and another technician we finally got the pictures of her lungs after 4 attempts.  Not bad.  The whole thing only took 20 minutes which was a miracle.

Once we got home, I looked over the report he had handed me and there on the page were these words: “Sleep stages were difficult to differentiate due to abnormality of EEG.  Seizure activity noted throughout the night.”

My heart ached and I felt so sad when I read those words.  I know she has seizures during the night but sometimes seeing the truth in black in white just sucks.  I picked myself back up out of my wallowing mood and we all went to dinner at the Yard House, our Friday night tradition.  As soon as we sat down, I looked at my phone and saw I had missed a call.  It was 5:15 (only eat happy hour at Yard House) and we had only been home from the doctors for 1 hour and yet the phone number was a 714 number. It looked like a CHOC number.  I decided I better listen to the voice mail.

I listened to the message and it was her Doctor.  Apparently the x-ray wasn’t good and had already come across his desk, or rather they rushed it over to him.  His voice mail went something like this:

“Mrs. Goff, Hi, this is Doctor ——.  Tiara’s x-ray came back and both of the bases of her lungs are collapsed in areas, which would explain the oxygen desaturation during sleep.  Ways to treat this are to have her cough more and exercise, anything that will get her huffing and puffing to open up those areas of the lungs.  Hummm, maybe tennis, tag, running, walking, anything she enjoys that is exercise.  Ok, bye.”

Really?  Tennis, didn’t he just see her sitting in her wheelchair trying to beat me up.  Ohhh, the man was just trying to brainstorm for me and help, but I had to laugh at his suggestions.

The weird thing about this is that when she was in the hospital at the end of December they kept talking about the base of her lungs being significantly collapsed.  I am wondering if they were already like that before she even got the flu?  After dinner I did a little research and based on what I read it is no surprise their are collapsed areas in her lungs.  Chronic pneumonia’s, asthma, and obesity can all attribute to this condition.

After hearing this news I spent some time thinking about her unknown future.  No one has ever given me a real life expectancy for Tiara but hearing about her lungs really scared me.  Coupled with the fact she is allergic to several antibiotics, is on 5 hard core seizure medications and still has so many seizures of which I can’t even see, now her lungs are even more compromised than I realized.  Not a good situation!

xoxo tiffani

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