Tuesday, September 14

CF Clinic Update

Yesterday we drove the "well worth it" hour and a half to John Hopkins Pediatric CF Clinic. Everytime I go, I am again reminded about how fortunate we are to attend such a wonderful place. We learned the ups and downs of poor clinics when Madeline was born until she was almost a year. Now, there is so much relief is knowing that this extra drive is worth every minute of the comfort in good care for her.

We knew that clinic this time would require M to get updated x-rays and bloodwork, all of which I was dreading. Madeline is so much like me when it comes to doctors. I remember at a young age being forced down on an examining table, which screaming and crying at the top of my lungs. Oftentimes, it was the "fear of what was going to happen" and not the pain. I grew to fear the doctor as a child, and I can see that in Madeline's eyes too.

As soon as the pulmonologist walked in she screamed bloody murder. It didn't get much better from there either. She tries to gag and kick her feet. You can always seem the extreme fear in her eyes. It is hard as a mom to watch this unfold and know that this is just the beginning of a long time Madeline will have with doctors. It is even harder to watch because I am reminded of the fear I use to have as a child too...and I can feel that and watch it in her eyes.  We always do our best to bring DVD's and a player, toys and other things to get her mind away from it. It doesn't seem to help really and I totally get it. It never helped for me either.

So as you can imagine, if the usual exam of listening to her lungs, checking her ears, etc. didn't go to well with M.....it seems obvious how the blood work and xrays went. The whole corridor of CF team members were inquiring about us as we were going through the motions. A few asked, "Is she gonna be okay?!" I smile and try to pretend that this is normal for her all the time....but truly it is not. How do you tell these people that it isn't personal....that it's just a fear issue. All i say is " I was just like her ...it is more of the unknown."

The lab work went as well as expected. She screamed, gagged herself, grunted and tears ran down her face for a very long time. The two women had difficulty finding any good viens but only had one failed "stick attempt" before they were successful. I am pleased that they were being careful but on my last end while trying to hold Madeline down in my lab as she is so scared. I explained that at 3 months M had her first PICC line and then it took multiple tries to get it in. I mentioned something about Madeline having small veins and the lady looked up at me and said..."well, I am gonna tell you ..she just a little pudgy and it is hard gettin' them veins when you is a little pudgy." She smiled afterwards and said, "Now...not that being pudgy is bad....cause I am pudgy (yes, she was rather large :)...pudgy wasn't really the right word for her. hahah) She continued " I don't want you to think I am trying to be mean..or nothing...." I cut her off and smiled. "Oh..we like being pudgy. We wouldn't want her any other way. " I think that was one of the best compliments a CF mom can get from someone else about her CF child at this age.  This of course was a lab for all 33 children specialties in the building so clearly she didn't really understand why I liked her pudgy comment. She didn't know that pudgy for an 18 month old with CF is a WONDERFUL thing!

Thankfully the x-rays went quick and Madeline clearly through her crying screamed "DONE! DONE!" She was really done. Jack and I got a laugh out of this. We finished up with the nutritionist and respiratory tech. Thankfully they came in with stickers (which M had never had before!) and was fascinated. Before too long the crying stoped and was had covered herself in stickers. She was dripping from sweat from all her crying...and had 2 bandages wrapped around her arm from the blood work. My little girl was looking ROUGH! Soon enough though....we were on our way out the door with a great progress sheet in hand.

Here are Madeline's stats:

weight: 28.4 lbs (91st %)
height:  85 cm  (85th %)
weight for height: (86th%)

We will wait on culture results, blood work, and xrays to come back. All in all everyone was very pleased with Madeline's progression. We hope that everything comes back clean.

Bandages on arms and stickers everywhere....my warrior!

The best feeling about a good clinic day is going home knowing that you get to "buy" more healthy time with your little girl. You get to relax and enjoy the comfort in knowing that she is healthy because with CF no one can ever promise that is will stay that way in a week, in a month or in years. No one can promise any length of time. Good visits like this allow you to celebrate great lungs and good health!


  1. I know the same feeling Courtney does the same thing. A few months ago she sat there for her blood draw which surprised me but still fights the throat cultures at 6yrs old. If you don't mind me asking is Dr. M still @ hopkins? Courtney went there until we moved.

  2. Yes, He is...we met him this visit. I love the staff there...they are so priceless!

  3. sounds like she's doing great! My daughter had Clinic yesterday too! It was so stressful! Even tho, I really look forward to it? But this last one was very stressful! I think it went well, so that's worth it all!

  4. I am so glad your pudgy lil CFer is doing well :)... Glad she got LOTS of stickers....:) Gettin pokes is always rough...


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