Tag Archives: pharyngoplasty

What a week!

Monday was Charlotte’s cleft repair, pharyngoplasty surgery, and ear tubes.

Tuesday morning she got the nasal tube they put in to aid in breathing removed. Then she ate. And ate some more. And drank.

So we were discharged Tuesday afternoon.

She stopped eating Wednesday morning. Stopped talking by the middle of the day. She was also refusing all medication and foods.

We were instructed to return to the hospital.

So we did.

And there we stayed until yesterday morning when her appetite and fluid intake finally picked up enough to make me feel comfortable with bringing her back home.

Our stay was riddled with issues.

The first issue was failure to get written consent for her ear tube surgery. The surgeon took the time to track down where the breakdown in communication happened and did apologize to us but then just a few sentences later admitted that post-consent happens quite a bit in her practice with her adults. Yeah. We’re SO not going back to see her.

Second issue arose during our return to the hospital. The ER had a hard time getting ahold of Charlotte’s doctor to approve admission even though we had been instructed to return by them. We arrived at the ER at 830p but did not get a room until nearly 2a Thursday morning.

Third issue was our day nurse on Thursday. She was a bit flighty and had a propensity for over-explaining things and failed to be prompt in her attention to us. My daughter’s med pump went off repeatedly as did her fluid pump with no response from her whatsoever. She was apologetic and spent some time trying to kiss Charlotte’s behind but I had the nurse replaced. It’s not my kid you have to impress, lady.

Fourth and fifth issue happened on Friday.

Fourth: A tech walked into our room and asked if I wanted to give Charlotte a bath. I said that I did. So she got everything ready and decided we needed to give Charlotte a sponge bath in bed. We had Charlotte lean back over a bowl of water and wiped her hair down. The tech realized she didn’t have water to rinse with so she went and got some while I tried to keep Charlotte calm and still. The tech returned with the water and began to pour it on Charlotte’s head. Charlotte screamed. I reached up and felt the water. It was absolutely scalding. I immediately told the tech to stop and get out of our room. The water she had gotten was entirely too hot! She acted surprised and I had to ask her several times to leave the room. I asked our nurse to make sure she was not allowed back in our room. I didn’t see her again during our stay.

Fifth: At about 1p the phone in our room rang. I answered. It was a prank call. I hung up. They of course, redialed. I was very unsettled (they said horribly mean and rude things to me) and called our nurse. He came right away and handled the situation beautifully. Unplugged our phone and had our phone number changed. A report was filed.

I don’t tell you all of this to complain. I’m telling you all of this to stand strong. I got flustered only twice during our stays. The first was immediately after surgery when we had to hold Charlotte down as the anestethia worked its way out of her system. She was angry, confused, and frustrated. Kept pulling at her IV, her nose, and wanted to be done with all of the pain. I admit that I cried. It took four hours for her to finally calm down.

The second time was when we got prank called. I was very very scared. I didn’t know if it was someone from inside the hospital or outside. I felt very vulnerable and afraid. I even had a plan in place if someone we did not know were to burst into our room. But nothing came of it and I was able to get back to sleep within the hour.

I am glad this past week is behind us.

On a positive note, Charlotte’s speech is ALREADY improved. She’s saying words that we can now understand a lot more often. There are sounds she struggled with before that she is now making with seemingly no effort. We still have quite a bit of work ahead of us but for now, we’re miles away from where we were this time last week.

Last night was rough but I have hopes tonight won’t be as bad. I think she’s got some night terrors and trauma residuals going on as a result of spending the week at the hospital. Teething tablets and a night light finally helped her go to sleep on her own last night but she spent the bulk of the evening in the living room with me. We’re going to have her return to school so her mind will have other things to focus on as well to help leave the memories of this past week behind.

Charlotte’s Cleft Journey

I went back to Atlanta this past Thursday for speech therapy with Charlotte.

They did nasometry, a test that measures how much air is being pushed out of her nose during speech. Normal range is between 15 and 30. Hers is at 48 so quite a bit of air is escaping.

Sitting in the tiny room with Charlotte and the speech therapist was heartbreaking. I realized how hard she struggles with her speech and how much she’ll have to overcome. I know the surgery to repair her cleft and create a pharyngeal flap will help quite a bit but there are physical habits she’s developed to compensate that we will have to overcome and will need therapy for once the surgery has healed and she’s been cleared to pick back up with therapy.

It was very difficult for me not to cry as I realized the road that lay before us. When she was in the NICU, I was grateful her condition would not require life-long intensive care. I am slowly realizing that while not intensive, her condition will require life-long attention and therapy. Right now our focus is on speech but there will be dental issues, potential additional cleft repairs if for some reason it splits again as she grows.I also can’t help but blame myself a bit for waiting so long to return to the clinic with her. But i know that given the struggle I’m having with it now, completely recovered, I know I could not have handled it before now. She’s been thriving and it’s ok. It IS ok. Just need to keep telling myself that!

While we were in Atlanta, the Plastic Surgeon’s office called. We have a tenative surgery date for April 13th with pre-op on the 31st of March, just 10 days after her 3rd birthday. They wanted to originally do the surgery on the 2nd but we have a trip to Grammy & Pop’s scheduled for the 5th-11th so I asked if we could move it back. Thankfully they were able to do so.

Charlotte wants me to spend the night with her in the hospital (if she has to spend the night – we don’t know this yet). As of right now, the procedures planned for the 13th are: Soft Palate Cleft Repair, Pharyngoplasty (the creation of a naso-pharyngeal flap that will cut off the air escaping through her nose when she speaks), and her second set of ear tubes.

Keep us in your prayers as we move forward with all of this. I will be doing my best to keep up with the blog here but if for some reason I disapear for a few days, you’ll know why!