Today was our second trip to TCH for Ellie’s CF clinic and it was as fun filled as the first!
The weather was terrible today, so I decided to leave a little early just to make sure we were there on time despite the pouring rain…ummm…that didn’t really work out.
I took a new route to the hospital thinking it would be faster and that didn’t work out either.
I decided to valet park because…well, I’m lazy and I hate walking through parking garages…and they were full, so that didn’t work out!
I got in the hospital put both of our masks on and headed to the eighth floor (after I asked the information desk if that was the correct floor)…wrong floor.
I waited 10 minutes for the elevator to go back down to the forth floor…wrong floor.
I finally found someone to help and after waiting another 10 minutes for the elevator I finally headed up to the ninth floor…eureka!
Thirty minutes late and a “little” frazzled we were finally where we needed to be and the day sailed by flawlessly from there.
I have to admit the sight of several children in masks made me a little nervous. Our first trip wasn’t on a typical clinic day, so there were really no kids with CF there. Today was a totally different story. It is hard to explain to people that don’t have CF or children with CF why it is so important not to cross germ paths with other CF’ers. I am still in the learning process myself which makes me a little more paranoid and seeing all of the kids running around in masks in the waiting area raised my anxiety level a little. There was an adorable little girl there that was super friendly and I am sure Ellie was dying to get down and play, but I kept her locked in my lap like a prisoner with her coloring book! Poor baby!!
To say I was relieved to be called back to our room would be a serious understatement. We got Ellie weighed in and she gained 2 pounds and grew 1 inch! She is between the 50 and 75% for both height and weight. They want Ellie to stay above the 50th % in weight, so we are on the right track.
We met with the nurse and then our friend the dietician came in. If you recall our last visit and conversation with the dietician…you will understand why I was a little anxious about what line of questioning she would be engaging my toddler in. Upon her entrance to the room Ellie announced she had to “go poopy on the potty!” So, I left the room with the sample cup for Ellie’s number two and did my best to catch her in action…fun times! I made sure that Ellie had a bag of freshly cut nectarines and apples for snack today, both of which she ate in front of our friend the dietician. Score 1 point for Team Mommy!!! Today’s conversation was about vitamins and Halloween costumes neither of which came with the answer “macaroni and cheese” ~ thankfully!
Our visit with the doctor was good. I asked about getting Ellie started on Pulmozyme and I am thinking after her next clinic visit in November she will be starting nebs. The doctor did order Ellie’s flu shot and annual labs today which I dreaded. Thankfully, she watches B give me shots every night, so she took it like a champ. Then, we were off to the lab.
Oh, the lab…a breeding ground for germs! There were kids EVERYWHERE…coughing, running, jumping on the chairs, screaming…a total nightmare. I had “paranoid germ freak” written all over my face and I am sure all of the other parents could tell. I stood up for our whole 30 minute wait and watched a dying fish gasp for air in the fish tank that was in the waiting room…so sad. I was so freaked out about the germs that I didn’t even have time to worry about Ellie’s impending blood draw.
Finally, our name was called and we were on our way. As the nurse prepared the vials and needle I pulled out my backup “happy plan.” It was one of Ellie’s favorite ring pops and it was broken into a MILLION LITTLE PIECES!!! Ugh! What was I going to do? Then I remembered Ellie grabbing the “lick-a-stick” out of our candy bag and me shoving it into my purse to hide it from her. SCORE! I pulled it out and held Ellie in my lap as they gingerly searched for a vein and began drawing her blood. Six vials of blood from my precious little princess and not ONE tear was shed! She was a super trooper just like her Bubba always was.
Finally, four hours after we arrived we were leaving. We met Daddy for dinner and now we are all home and cuddled in bed as the rain still comes down outside.
Tomorrow is my CF clinic (not planned to follow Ellie’s ~ just my luck!) and then Thursday is our blood work and first ultrasound preparing for the egg retrieval. I am excited and nervous (more about the IV I will have than anything else), but I am anxious to see how my body is going to respond this time around (how many eggs, etc.). I have actually lost a few pounds which is awesome, but I know the real fun is about to begin with the FSH/LH drugs as they take advantage of my body. Eleven days from Friday is the big retrieval day, so we are getting close!
Thank you so much for all of your continued prayers and support. It is hard to be super positive 100% of the day and your comments, calls and cards have all been so unbelievable.
Rather than an uplifting scripture I’ll leave you with words from my baby girl:
“Dear God, thank you for my blessings!” Amen!!
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4 comments:
Ellie is getting to be such a big girl! Not even I can make it thru a blood draw without a tear or two. Way to go Ellie! Good luck with yours today. Now that our house is well hopefully the rain will stop so we can all go for another bike ride and we can catch up on everything. If you need anything let me know....keeping all of you in our thoughts and prayers! Love Ya my friend!
Sounds like nothing but great news! Good to hear.
Ronnie
Ellie is so sweet and her prayer is priceless! What a good girl at her clinic visit! I share your same germ fear and am borderline Psychotic about it, it's ok mommy you're just keeping your baby safe!! I continue to pray that God lays a healing and blessing hand on your family. Good luck with the retrieval. Praying it goes well!!
Oh Cf must be the worst thing with a little one. I have just started reading your blog and I'm amazed at your courage. what an inspiration you are.
I will be adding you to my blog list. Have a fun weekend.
Lucie xxx
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