Friday, June 13, 2014


We had a really long and exhausting clinic visit yesterday.  Kinda don't really feel like writing about it, but will give the basics.  Monkey was a champ through the whole thing.  Wore his mask, didn't freak out when they were taking his vitals/weight etc. 

His weight is down again (which I expected because he hasn't been eating well).  Dr. McCoy wanted him to get a chest xray, so we decided to go before we saw her so that she could look at the xrays before examining him.  He did pretty well with the xrays, but it took a bit of coaxing.  And if you know Monkey, you know getting him to be still long enough to get a good picture was kinda difficult. 

The xrays showed a spot in his lower left lung.  Dr. McCoy said it could be a mucus plug or an infection, or something else, but given the fact he hadn't had an appetite, she didn't want to wait for the culture results and thought we should just start treating it is if it is our friend Pseudomonas rearing his ugly head again.  So poor baby is back on the Tobi and Cipro for the next month. 

Because of his weight loss, we spent about 45 minutes with his dietician trying to come up with a plan to get him to eat and gain some weight without letting him take advantage of the situation.

Dr. McCoy also wanted to talk about his nose, which is runny and gunky about 75% of the time.  A lot of kids with CF have sinus issues that require surgery (multiple surgeries in many cases).  She agrees with Dr. Thompson (our favorite doc from our old newborn clinic) that Monkey is going to fall in this group.  So she had the ENT come in. 

After examining him and talking with me, the ENT decided he needs to be on a daily nasal spray which will hopefully prolong the need for surgery until he is older.  So one more medication added to the list, and one more step added to the treatment routine.  They will also do a CT of his sinuses when they do his chest CT and Pulmonary Function Test, which should be happening very soon.

So finally, at the end of this super long visit, the nurse came in to get his throat culture.  She was a nurse we had never seen before and when she came into the room she said "so this is Emperor Lex, Dr. Thompson's favorite patient".  (I guess I might as well start using his real name here)  She went into a story about how when Lex came up in their meeting about this week's clinic patients, Dr. T. went on and on about him and how much he misses him.  So that was very sweet to hear and a good way to end this long (over 3 hours) visit!