Sunday, September 8, 2013

Not Much Going On...Days 13 - 17 (Sept 4 - 8)

Usually I try to break things down by writing a few paragraphs for each day.  Not happening that way tonight.  Partly because I'm tired and partly because I took too long to do this post so I don't remember exactly what happened when.

Our last post led you to believe that a tagged white cell study was going to be done.  That plan was changed because Eli's hemoglobin and hematocrit were too low.  His hemoglobin was 8.2 and the hematocrit was in the 20s.  To do the tagged white cell study, about 25cc of blood (just under an ounce) has to be removed from Eli, sent to the nuclear medicine department for them to mix in their magic potion that will bind to the white cells to make them glow on the scan, and then the mixture reinjected into Eli.  Even though the blood is technically returned to Eli, it doesn't count anymore toward his total blood content.  Taking that much blood out would further lower his already low H&H.

Instead of the tagged white cell study, it was decided to do a bone scan.  He had that done on Thursday and he did very well.  Getting it done involves being strapped to a table and a series of two minute scans taken of different parts of his body.  He did much better than I expected and we were so glad we didn't have to sedate him for this.  Thursday night he also received a unit of blood to help his H&H come up.  It did but not quite as high as they expected.  In fact, it's debatable whether or not it's high enough to do the tagged white cell study this week.  It's high enough he shouldn't need a transfusion, but may not be high enough for that test.  Because of the two procedures he's had in the past few weeks coupled with the bloody drainage from his chest tubes, no one was surprised that his levels were as low as they were.  

The bone scan looked normal, which was good news.  The down side is that we still don't know where the staph was hiding out.  For now we're in another holding pattern.  Eli spent Friday, Saturday and Sunday playing, eating, drawing, being silly, arguing about baths, and making me laugh.  He's feeling so much better and it shows.  His vital signs are good and stable.  When he's awake he doesn't need oxygen and he sats in the low 90s.  While he's sleeping, he still gets the 0.5L and he usually sats >95%.  He's got more energy and it's harder to keep him occupied and happy.

The Care Conference for Eli hasn't happened yet.  Originally they wanted the test results so they could discuss those at the meeting and form a more accurate plan.  The bone scan results are helpful.  The problem is that there's no clear cut formula to deal with this.  Dr. Abraham (heart surgeon) discussed with us the possibility of going home soon and doing antibiotic therapy through his PICC line for several weeks.  How long is several?  Don't know.  After that's complete then we could revisit the idea of the tagged white cell study to see if any "bad guys" show up around the pacemaker.  Infectious Disease has a different perspective and we're expecting they would want to get the pacemaker out sooner rather than let Eli go home and eventually get sick again with another emergence of staph aureus.

Our concern with the tagged white cell study is that its purpose is to see where the white cells are gathering.  White cells are our body's way of fighting infection.  They're also a sign of healing.  Remember, Eli just had surgery a couple weeks ago to remove a lot of fluid from his right lung area.  Then he had two large chest tubes in place to drain lots of fluid for a week.  One week ago, he had another procedure to remove those chest tubes.  His pacemaker is right below the area he just had surgery on and the wires run very close to that area (under and beside it).  Couldn't the natural healing process from the surgery give a false positive to a tagged white cell study?  We've also been told that the tagged white cell study isn't a specific enough test to definitively show a small accumulation of staph aureus cells on something as small as a pacer wire.  We're just not sure what the correct next step is or if the proper step is the tagged white cell study, is now the right time?  Maybe to do it in a few weeks after more antibiotics is the right choice?  Something else we think needs done (docs have mentioned this, we just don't know when it will happen) is another chest xray.  He hasn't had one since the chest tubes were removed.  Like I said, his sats are good and he doesn't show any signs of a reaccumulation of fluid, but he's fooled us before.  Eli's pacemaker hasn't been interrogated yet either, so we don't truly know how dependent on it he really is.  We need those docs to get together and discuss some things.  We also need some questions answered.

What's nice about this confusing situation is that we know each of these doctors has Eli's best interests in mind.  It's obvious they like the kid and want what's best for him (and us), but each are coming from different specialties which means different experiences and different perspectives.

I am torn.  I want to be home.  I want to be home soon.  Especially because Friday is Zachary birthday.  When I hugged him goodbye tonight it broke my heart to think it is possibly the last time I could be hugging my five year old baby.  If we don't go home this week, the next time I'll see him is Friday night and he'll already be six.  We're making plans to have a party for him in the conference room here at the hospital.  We can decorate it and have a cake and he can open his gifts.  It would be great to do those things at home, but we are not counting on it.  I cannot emotionally afford to count on going home yet.  Even more than I want to be home, I want to get this right for Eli.  If that means staying a few more weeks then this momma will just suck it up!

FUNNY STORY:  Thursday afternoon, Eli took a nap.  I used the chance to get out of the room.  I was going to run to the grocery store for a couple items and grab a bite for supper.  Because of a flat tire on the van I wound up not leaving the hospital and I got something from the cafeteria for supper.  Eli was still asleep when I got back to the room.  Someone had been there and left a stack of Sesame Street stickers.  When I asked our nurse she didn't know who left them.  Later that evening Eli was playing with the stickers.  I asked if he saw who left them in the room and he said yes.  I asked who and he looked me in the face and says "Peyton Manning."  Again, I asked who left the stickers and he repeated it with an impish grin on his face.  We KNOW it wasn't Peyton because he had a game that night in Denver, but still if you ask Eli who gave him the Sesame Street stickers he'll tell you Peyton did!  Silly kid :)  Thank you to whomever really did leave those stickers, he's enjoyed playing with them and making up stories about them!

- for the Care Conference to happen soon
- for the doctors involved to be able to make the right decision for Eli
- for the four of us to be ready to deal with whatever is decided at that meeting, whether it's going home with IV antibiotics for several weeks with the possibility of readmit later for further testing/surgery/pacemaker removal or to stay and do those things now
- for me to have enough energy to keep up with and occupy Eli while we're still here!

Thank you all. 

No comments:

Post a Comment