Tag Archives: surgery

What a week!

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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

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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!

Results of the Great Return

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I survived the day.

There were only tears as I made THE turn. They hit me out of the blue and after blubbering for a few minutes, I was fine. The rush of emotions was really quite unexpected. I had no idea how I would react once we got there. I worried the tears wouldn’t stop and I wouldn’t be able to go in with Charlotte but they subsided rather quickly as I forced myself to breathe and Chris reminded me we weren’t going to see her in the NICU.

Overall the appointment itself went well. Her plastic surgeon was very pleased with how well her jaw was growing on it’s own and didn’t seem to think surgery was going to be a necessity unless deemed so by Speech.

Guess what?

Speech said she needs surgery. Her palate is split in the back and he also wants a naso-pharyngeal flap done as well to help her not push air through her nose when it should be going through her mouth.

We go back next week for a session in their speech lab so they can teach me some things to do with her at home to help train her vocal track to do the right things.

We knew surgery was a very real possibility and as I said earlier, we’ve discussed it with her. The doctor’s office will be phoning us to talk scheduling once they get it cleared with insurance so we wait.

I’ll update here once we know more.

In the meantime, continue to pray for strength, guidance, and patience.

The Great Return

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Tomorrow we go to Atlanta with Charlotte for follow up with the Cleft Palate Clinic.

I would be lying if I said I was not nervous.

This appointment was supposed to have taken place when she was nine months old.

She’ll be three years old next month.

Charlotte in the NICU

Charlotte in the NICU

It took me this long to get to the point where I could even think about facing the hospital where she spent her first 21 days of life without having an anxiety attack.

This is the same hospital in which I tucked myself into a corner of the sleep room in the NICU area, blasted Linkin Park over the MP3 player and checked out. No desire to come back. Just wanted to stay curled up under the blanket and pretend none of this was happening. Nope. Not to me. I didn’t have a baby in the NICU. She wasn’t downstairs having major jaw surgery at just nine days old. We weren’t doing this. I was stuck in the middle of a really bad dream and I’d wake up at home with a normal baby.

I can still see that hallway, that sleep room, my nostrils fill with the scent of the surgical soap that killed my hands as I washed them every time we went into the NICU, every time i pumped, every time I went to the restroom there.

I remember the pumping rooms in which I spent most of my time staring at the clock wishing I could nurse my daughter instead of shoving my breasts into hard cold flanges, flicking a switch on a massive antique pump, adjusting the suction to just below Holy Crap that Friggin Hurts.

But tomorrow is the day we finally go back.

Chris is going with me as a safety. I don’t know how I will handle this. I’m hoping for the best. Praying for the best. I keep thinking about how far we’ve come since then and how lucky we are that we don’t have a lot of the problems a lot of parents have with their Pierre Robin kids. She’s talking, using sentences nonetheless. She’s breathing on her own. She eats – oh lord, she eats – she’d eat herself sick (and has) if we let her. No oral aversions here.

But she does have a fistula – an opening in her palate repair. It’s at the back of the throat. And her enunciation is off – it’s nasal. She can’t say “s” without blowing air through her nose. Chris and I understand maybe 75 – 80% of what she says and it breaks our hearts that we can’t even understand our own child all the time. It’s led to frustration on both sides and is now turning into a discipline issue.

I’m afraid we’ll be told she needs surgery. I’m afraid of what that will mean for us and for her. I’ve talked with her about the possibility of surgery. She knows that they would give her some medicine to help her go to sleep and fix her mouth while she was asleep. That she might be owwwy when she wakes up and that they’d have medicine ready to help with the owwwy.

She seems cool with it.

I’m not.

I have forgotten how to let her go with the doctors – I got so good at it when she was in the NICU but she’s been all ours for almost three years now. I don’t want to hand her over to be taken to surgery. I want to go with her! That’s my baby you’re taking!

But now I’m thinking too much and need to stop and let God do all this worrying for me.

Please pray for us as we face tomorrow.

Pray for a peaceful heart and soul for me.

Pray for a pain-free and comfortable day for Chris as he goes with us.

Pray for a positive evaluation.

Pray that I am able to handle any news of surgery with strength and grace and truly give it to God.