Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, September 30, 2011

And how are you?

So just an update.... Gator has been doing okay, we have been doing his normal troughs. These check the levels of Vanco in his system. The also do a CMP or The Comprehensive Metabolic Panel a test that gives important information about the current status of your kidneys, liver, and electrolyte and acid/base balance as well as blood sugar and blood proteins. Abnormal results, and especially combinations of abnormal results, can indicate a problem that needs to be addressed. We have been watching Gators Creatine levels. It seems those crazy antibiotics are messing with his Kidneys. Gator doesn't seem to be affected too much by all of this business except that he has to stop playing for nurses to take blood. That PICC is a blessing after all because getting this many pokes would be torture. I totally have a sweet/funny story to tell and I won't name names to protect the innocent, and I hope the mommy doesn't mind... It's just too good not to share.

Yesterday we had yet another blood draw. This time Gator had a little friend over! Let's call her "Tiana".... While Gator was having his blood taken, Tiana was worrying about her little friend from the other couch. The nurse was trying her best to get something out of that stubborn PICC and nothing was happening. It was very frustrating to Gator who wanted to play and not be bothered by this situation anymore. Also, he had just finished getting a dressing change due to some irritation that had caused some bleeding under the dressing and it looked pretty "angry". I was seated near Gator boy on the couch and asked Tiana if she would like to come and sit with me so she could see better. I thought for sure most kids would think that was kinda cool and she could see that her friend was in no real danger. It never even registered with me that she would be different from my own children who see these things ALL the time. She came over, hopped up on my lap and looked over... She said "oooooo that looks like it hurts!" then she sat straight up and clamped her mouth shut tightly. Her little cheeks began to bulge and her eyes teared up.. She could hold no more and barfed. Poor little thing. The nurse and I just looked at her, like that was a totally common thing to do. I moved my shoes out of the way, in case there would be a second episode. I covered it with a piece of paper and helped her to the bathroom. We stepped into the room and she made it to the sink. Her whole lunch. Bless her heart. She was probably starving later that day. She just kept saying "I am sorry".... I felt so bad for her. It was my own fault for thinking she had a stomach of steal. She stayed near the toilet the rest of the nurses visit while I cleaned everything up. Then the kids played again after the nurse left like nothing had happened. I love kids... Tiana certainly did not need to say sorry. It was a reminder to me that I should be careful of those sensitive eyes and stomachs.  The best part was, her mom came to pick her up and the first thing she said was "GUESS WHAT?????? I threw up on the carpet" HA!

Well, the nurse was never able to get blood, so we had to do the TPA again. This time I was going to be in charge of removing it before administering the Vanco. For some odd reason I was a little freaked out by that. I had to write myself a note to remind myself to pull the TPS out instead of pushing it into his body with a flush. I did fine. Late last night the nurse came to get the CMP. Somehow we missed the order for the trough so we got to see Dillan again today. Infectious Disease called and said his Creatine was trending up and would chat with Dr Su to see if we could reduce his Lasix in order to preserve his kidney function. One thing I have learned is that this heart business is all about the tuning.... Once you tune one things you have to check all the other things and fiddle here and adjust there. It's all about the TUNING. Well Dr. Su didn't want to mess with his diuretics until he had seen an x-ray to make sure he still wasn't developing any effusions. We are so lucky to have the Riverton location. I only had to drive him over there for his "pictures" instead of all the way down town... AWESOME I tell ya! The x-ray looked awesome, and we lowered his Lasix to once a day instead of 2. Then we will do another trough tomorrow and we see Dr. Su Monday for clinic.

It may not seem like a lot, but between feeding, napping, bathing, diapering, school getting to and from, hair and other crazy mommy things my days fly by. Is tomorrow Saturday already?
Well then,
Happy Conference Saturday!

1 comment:

berrymom said...

Oh Brynne, that seems like A LOT for sure! You are super mommy! Love ya!