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

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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Post-op Day Four & Five

Raising the Rare ChildHolly D. Gray2 Comments

Post-op Day Four

Day four in the MSICU was a difficult one. Caleigh was doing well, but still fighting the breathing tube. They decided to wean all of her sedation medication to get her more awake with the plan to extubate the tube.

The nurse turned off the Versed drip, added in Propofol (aka the Micheal Jackson drug) and then weaned the Dex off that morning. She was totally out because she's supposed to be with the Propofol. It's a quick on and off drug. When they turned off the Propofol Caleigh didn't wake up at all. Hours went by and she didn't blink an eyelash. Eventually she blinked and started to rock her head back and forth over and over all while her eyes were rolled in the back of her head with only the whites showing. She did this for hours and all night. Caleigh's fever returned as well. Not only was it worrisome, Eric and I were concerned about her sweet little brain. All of the sedation medication should have worn off by then. 

Post-op Day Four & Five via

That same morning the 13 or 14 year old in the pod next to us was having a baby. They set up for the baby to be right next to her. We were in a corner that held four spaces all separated by curtains. Curtains don't block sound or movement and when there's a high risk baby coming everyone is going everywhere. Our curtain moved back and I made eye contact with the little girl that was about to have her baby. She was curled up on the bed with her knees to her chest and she looked absolutely scared out of her mind. I'll never forget her sweet face. 

The baby came and the forty some people in the small space continued to care for the mom and her baby. Being in the NICU for so long, I know that the baby was very sick. The mom was moved out of the pod late last night. This was beyond gut wrenching to hear, see and experience. I've said it before and I'll say it again... I hate the ICU. 

When I had met my limit and frankly looked like I had been hit by a truck, I left the hospital to go to the apartment. I went to sleep at 7:30pm and didn't wake until 7:30 this morning. 

Post-op Day Five

Overnight Caleigh continued to rock back and forth and not respond to Eric, doctors or nurses. Around eleven Eric had experienced his share of the loud chatting, talk and bright lights that goes along with caring for a very critical infant through a curtain. He peaked his head out and asked the four guys chatting if they could "use their inside voice and especially you" pointing to one respiratory therapist that had been especially loud the whole evening. They apologized, joked that that guy didn't have an inside voice and Eric went to lay back down. About five minutes later the nurse asked Eric if he wanted a private room. Done and Done. It's fabulous by the way. It's quiet, has it's own loud ventilation system, glass door and curtain. It even has its own bathroom, which is entirely life changing. 

This morning the team decided that they needed to pull Caleigh's epidural. It should keep the medication localized to the area of the abdomen, but "should" usually doesn't apply with Caleigh. 

As soon as it was pulled she started to wake up and act like her groggy self. I got to the hospital a little before 11 and they had just extubated her. She was groggy and doing some intense coughing. While getting her all cleaned up she had stooled for the first time since surgery on Monday. This is huge and means that her guts are waking up. They pulled the foley catheter while getting her all clean and situated. There are plans to remove the arterial line and one of her PICC lines later today. Slowly she's getting rid of life saving accessories. 

Post-op Day Four & Five via

The redness on her abdomen is still there, but a lot better. Two nights ago, we removed the orange plastic diaper that they had been using, thinking that she was having a reaction to it. She had developed big blisters on her skin and a dose of benedryl lightened the redness but didn't get rid of it. Today the blanching, redness and swelling looks better, but it's still there. 

Caleigh has blisters and skin breakdown anywhere there was any type of tape, tubing or anything foreign to her and she still has a lot to get rid of. Her bottom has a pressure sore from the swelling, her back is covered in redness and some blisters, Her ear has a pressure sore from the NG tube laying on it, her face is torn up and blistered from tapes and adhesives. Her sweet soft skin is so sensitive that her skin enemies are all over her allergy list, but you have to use certain things in an emergency and that's what they did. Paper tape doesn't hold an ET tube. 

To add to the surgery details we received, Caleigh had a large fistula that was repaired from one of her previous procedures. There was definite "spillage" of gastric contents during the surgery since the narrowing wouldn't allow a full intestinal clean out. Today she is still running a fever and it spikes pretty high here and there. She is still on two antibiotics and an anti-fungal. 

Now that all the sedatives and pain meds have been removed she's feeling pain in between short naps. They've given tylenol for the fever and her nurse is about to give a small dose of morphine to take the edge off.

As I type, she's napping after an exhausting, but necessary repositioning. We hope to keep her comfortable with rest and naps the remainder of the day. Thank you again to everyone that is thinking about Caleigh, praying for her and taking the time out of your day to read our updates. 

Details for mailing a letter or card to Caleigh. You can read more about sending mail to a patient on Boston Children's website.

BOSTON, MA 02115

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Post-op Day Two & Three

Raising the Rare ChildHolly D. Gray1 Comment

Yesterday, the adrenaline that I had been running on, fizzled out and I had nothing left to give. I left the hospital at 5:30 in the afternoon and headed to the apartment. I survived rush hour traffic in Boston without hitting a bicyclist or getting honked at. I'm calling it a win. A hot shower, full night's rest and grocery shopping this morning helped a lot. I'm refreshed, but still tired. I don't recommend staying awake for more than 24 hours if you don't have to. Eric is holding his own. Trading out nights, seeing what's going on outside the hospital and cooking real food helps. 

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Post-op Day Two 

Yesterday, post-op day two, was calmer and less intense than the first day out. Caleigh's blood pressures leveled out and they were able to take her off of the pressers. This is great news because blood pressure issues are scary. Caleigh continued to swell, due to third spacing, throughout the day. They had to stop her IV nutrition (TPN) early in the day because her phosphorus was very low. They made adjustments and hung a new bag later in the afternoon. Caleigh received two more units of blood and two units of plasma during the day. Her counts were low, blood pressure high and her heart rate was also elevated. She needed more fluid.... remember, fluid resuscitation. They also gave her some Lasix to help her kidneys work off the extra fluid buildup and she immediately got rid of 500ml. 

Caleigh has been sedated, but angry about the ventilator. Around 9am they agreed to turn the epidural back on since her blood pressure issues were better. This helped her obvious abdominal pain and she did calm some, but she continued to fight the tube through a sedated Versed drip. This caused her to cough terribly, and need to be deep suctioned numerous times. Even though she is fighting the tube she's very out of it and doesn't open her eyes. My hope is that she doesn't remember any of this and I suspect she won't. 

Caleigh's fever has been coming and going with it getting less high. The last one was 99.8F. They did nasal swabs, vent, urine and PICC line cultures yesterday to make sure nothing is brewing. The nasal swabs came back negative for anything viral. The cultures are pending but still negative. 

Yesterday was better, but with the pain, vent alarms, coughing and suctioning it made for a very long day with no rest for all of us. Everyone agreed she was slowly moving in the right direction though. 

Post-op Day Three

Today, I made it back to the hospital at 11am after Eric held down the fort all night at the hospital. Caleigh was fighting the tube quite a bit from 1am-4am. They kept giving her boluses of Versed and it would calm her for a short time before she would start again and need another dose. She had a loud neighbor that screamed a lot during that time making her stir more. Late last night they upped the Versed drip and her epidural dose. 

I walked in this morning and she was noticeably more pink in color and the swelling was better. They gave her more Lasix to help with the fluid and she voided even more than the first time. She continues to get two different types of antibiotics, an anti-fungal, the epidural, Versed drip, and TPN and Lipids. They are starting another sedative drip, Precedex, that will help calm the vent fighting, but not affect her respiratory rate. 

There hasn't been any talk about when they will extubate her and I don't imagine it will happen for the next couple of days. As long as she is fluid positive they can't do it. Her chest x-ray shows a lot of fluid on the left side. Not in the lungs but in the tissues around the lungs. They've had to adjust and move her tube deeper a couple of times due to the fluid shifting. 

The surgical dressing on her torso was removed this morning and it looks good. They are leaving the area open to air now. There is an area that was a previous hernia, due to her last surgery and compartment syndrome, that is red and discolored. It's where the dissolvable patch was when she was left open for 5 days. They've marked the edges and continue to see if the redness grows. 

All in all, things are going well. All of her doctors and surgeons are pleased with where she is. Caleigh is taking this harder than they expected, but it is in line with the amount of adhesions and time in surgery. 

Much love to everyone for your continued support. 

Details for mailing a letter or card to Caleigh. You can read more about sending mail to a patient on Boston Children's website.

BOSTON, MA 02115

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Just can't seem to stay away

Raising the Rare ChildHolly D Gray10 Comments
Hello all,

Well as some of you already know Caleigh scared the crap out of us on tuesday evening on the way home from her GI Dr.'s appointment and bought herself an admission to the Pedi ICU at Cook's Childrens. I hope Holly approves of this message, because this is Eric telling the stories tonight. We were about one half mile or less from being home when Holly yelled at me to pull the car over because Caleigh was not breathing. So we turned off of the large road on to a side street and I ran around and took Caleigh while Holly called 911. Caleigh was blue, limp, unresponsive and not breathing. I did some CPR and rescue breathing and stimulating and after about 1 or 2 minutes she began to occasionally take some shallow slow breathes, and after helping her breathe and stimulating her she began to breathe more and more on her own and the i could her the fire truck coming, what a relief. When they got there we gave her some oxygen and waited on an ambulance. finally after about 5 minutes in she finally began to cry some and that was some more relief, but it was not the vigorous cry that you would expect from Caleigh. I road with Caleigh in my lap in the ambulance and Holly drove home to get some supplies that Caleigh needed and met us at the hospital. After a short time in the ER Caleigh was admitted to the pediatric ICU. So then all the Dr's are trying to figure out the cause of the apnea episode. They ran all kinds of blood work and her WBC count was elevated pointing toward a possible bacterial infection some were. The Neurologist ordered an EEG that monitors brain activity and they have determined that Caleigh is having seizures, she had 3 during the 30 minute study. She does not have the seizures that most people think of witch are called grand mal seizures when someone has rhythmic tonic clonic movements(shaking). Her's have no noticeable physical signs it is just disturbances with the electrical activity in her brain. This can be easily controlled with medications witch they have started her on. I just came home to shower and get some clothes and things. Holly is up and the hospital (holding Caleigh of course) so i just wanted to let everyone know what is going on. I sure Holly will have much to add to these late breaking developments because i just hit the highlights and am about to head back to go take care of my beautiful girl's. Caleigh is probably going to be moved to a regular room tomorrow and we don't yet know how long they will keep her around but hopefully the will get her fixed up and back home very soon. I hope all of this made sense because after all it is 2 am and Holly and I snuk in about 2hrs of sleep each on Tuesday night.

Thanks for everyone's prayers, Eric
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