Made of Gray

Post-op Day Six & Seven

Raising the Rare ChildHolly D. Gray2 Comments

Post-op Day Six - Father's Day

Saturday night into Sunday was a blur to me. Caleigh was up for over 24 hours and so was I. At one point I remember feeling woozy and needing a chair to sit next to her bed instead of standing. She would cry every time I tried to walk away. 

Caleigh was hating the oxygen canula and the NG tube. The NG was to suction and her g-button was to gravity to keep gastric contents from going through the intestines. She was gagging and coughing a lot which just made her abdomen hurt more. By the end of the afternoon Caleigh was breathing on room air and the NG tube was removed. Her face was free of tubes. 

We had removed the orange plastic diapers when Caleigh broke out in a rash all over her abdomen and developed blisters. We tried to add back in the white plastic diapers that we had used in our previous inpatient stay with no issues. Within an hour she had red whelps on her thighs and stomach. Needless to say, Caleigh is allergic to all of the diapers in this hospital. Bad manufacture. She's hanging out on some really fancy underpads right now until we can figure out a game plan. I'm pretty sure the whole rash and blisters thing was from the diapers. Coincidence, maybe. 

Caleigh pulled out her own arterial line on Saturday. One less thing to deal with. 

Saturday night and into Sunday, Caleigh was having withdraw symptoms. Her muscles were jerking, the clonus in her legs was constant, and of course, the no sleep aspect of things. Going from three different pain and sedation meds to tylenol and morphine wasn't cutting it. They added in Toradol to ease the pain. Her fevers continued to spike and hang around. 

Eric came up to the hospital about noon and I immediately fell asleep for a couple of hours. Caleigh was able to sit up in a chair for the first time that afternoon, but I really don't recall what happened after that. I made it back to the apartment for some much needed sleep. 

Just the highlights... awake, rash, pain and moving uncontrollably. 


Post-op Day Six & Seven via madeofgray.com

Post-op Day Seven

Today, Monday, was different. Eric reported that Caleigh slept from 10pm-4pm. In the morning her fever spiked again and wasn't responding to tylenol. The morphine seemed like it wasn't doing much for her restlessness. The muscle spasms and jerking seemed worse. 

Caleigh's Artane (Trihexyphenidyl) had been removed last Monday since it was a g-button medication. We talked to neurology here and they said it shouldn't be an issue stopping it cold turkey and then restart it later. She's been on this medication since she was three years old without missing a day. She gets 8mg three times a day. It helps with dystonic movement. Now I know if really really helps. They've added it back in and her movements are better right after the dose, but not back to baseline. It may take awhile before it's built up in her system again. 

She also started to need oxygen more and more throughout the day. Right now she's on 3.5 liters and that's only keeping her between 92-95 on her O2 sats. Caleigh's breathing is more rapid as well. She's working really hard. They did a chest x-ray and an abdominal x-ray and her left lung that had collapsed looks good. Her abdominal x-ray didn't show anything significant, but they plan to do an ultrasound tomorrow. 

We actually had a room on 10 South that we were headed to early this morning, but with the fever, oxygen and unknown they kept us in ICU. It's better that way because I can feel she's not ready to move. 

They sent the first PT in to do therapy. She did some arm stretches and sitting upright for a little while. We were still in "going to the floor" mode when the nurse and I gave Caleigh a good sponge bath and tackled her matted and tangled hair. The tangles took forever, but we had nothing else going on. Her hair care took the entire length of Adele's album 25. She was exhausted after both PT and care. 

Caleigh's PICC line dressing was hanging off this evening and it needed to be changed. Another source of infection we'd like to avoid, but it happened. 

The ICU team decided to start her Vancomycin antibiotic back up since something is going on. They discontinued it a couple of days ago and then she started having higher fevers and breathing trouble. Something is brewing they just haven't found it yet. She's still on Zosyn as well which is a broad spectrum antibiotic. They've also added Diazepam (Valium) this evening to try to help with the muscle spasms. We got a couple of smiles out of her (photo above) with the first dose and a ten minute nap, but so far she's still moving and feeling pretty miserable. 

There are a handful of guesses as to what's going on. I don't like any of them so I'm not going to list them here. We'll know more tomorrow and I'll update as I can. 

Thank you for sticking with us! 

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