3rd Lengthening

Zoë woke up about 9:45am to get ready. We sat outside the house and prayed for a speedy recovery. I tied a rope around her right wrist that I received in Mt. Athos in February. The rope was blessed and touched the belt of the Virgin Mary. I also added a few drops of Holy Oil that we received from Mt. Athos.

10:30am – Zoë reported to Mt. Sinai hospital for admitting. We were in the holding room at 11:30am and scheduled for surgery at 12:30pm.

12:15p – Dr. Standard came in to talk to Zoë and us. He was very comforting to us and especially Zoë. We reminded him about her pain in the lower leg scar where her a-plate (staple) was. He said he would avoid that area completely. Dr. Standard drew a smiley face on her Left Leg and initialed it.

Waiting in Pre-Op.

1:25pm – Zoë went in for prep. I (Stephen) put on a bunny suit and accompanied her with Marilyn Richardson Muller, the Pediatric Patient Care Coordinator. Zoë was given an anesthetic by Dr. Edward O’Laughlin while the Doctors were getting ready. The surgery is expected to last 4 hours with a 1 hour prep time. She should be in recovery by 6:30pm. Irene and I are going to the Rubin Institute at 3:00pm for a training course on how to care for the Orthofix and Taylor Spacial Frame.

3:00pm – Stephen, Irene and Leda went to the ICLL for external fixator class. Lee Brady, BSN,RN who is the coordinator of Patient / Family Education spent an hour teaching us how to care for the Orthofix and TSF.

6:40pm – Dr. Standard came to the waiting room to tell us that everything went well and as expected. Zoë’s rod that was in since the last surgery was a little harder than expected to remove but he was able to get it out OK. Dr. Standard explained the new half ring that he had to add for the knee bar that locks the knee in place. Zoë should be able to put 50% weight on her leg in a few days. We will likely start turning the screw on Monday, July 5, 2010.

7:20pm – Irene is allowed to go to post-op to see Zoë. She is still sleeping from the anesthesia.

7:45pm – I went to see her, She was sleeping and responded to my asking if she is comfortable. She was shivering so her nurse, John, put more warm blankets on her. I got a good look at the devices. The pins are very sharp so John got rubber caps for the pins. This will prevent her cutting up her other leg and clothes.

8:30pm – Irene was back with Zoë and she started to vomit. This is common with anesthesia but she will stay longer in post-op until that stops.

Picture of Zoë’s new device.

9:03pm – Zoë was given 3 doses of Zofran to stop the nausea from the anesthesia and we were released from Post-op and is in room 386 of the Pediatric wing at the hospital. She is resting comfortably.

9:30pm – Zoë was woken up to test her feeling in her foot. She is unable to raise her foot (foot drop) but feels tingling when touched. The nurse called anesthesia to lower epidural dose. Zoë threw up again while nurse was asking us updated questions for her medical record. We noticed that her weight was incorrectly listed as 3kg higher than she was weighed this morning. Nurse corrected the chart. They will give her another medication for the nausea.

10:15pm – Zoë vomited again, the nurse gave her the second nausea medicine,a medicine for stomach (like zantac) and an antibiotic. The nurse also lowered her epidural from 12 to 10. The foot drop should be gone by 4:00am. If not the anesthesiologist will be called for recommendation.

11:41pm – Zoë vomited again and she cannot feel her foot at all now. Nurse is calling anesthesiologist.

1:28am – Zoë vomited again. The nurse will lower her epidural from 10 to 8 because they want her foot to move.

2:18am – They stopped her epidural completely for 1 hour to see if she can move her foot.

2:42am – Dr. ordered new nausea medicine.

2:47am – Nurse gave Zoë new nausea medicine.

3:06am – Nurse took blood sample for labs.\\

3:19am – They will keep epidural off for another hour to see if she can feel and move her left foot.

3:49am – Anesthesiologist came to investigate why she cannot move her foot.

5:06am – Still not wiggle of toes. Calling anesthesia for advice.

6:24am – Toes are wiggling! turning epidural back on to 8.

8:56am – Dr. Standard came to visit Zoë. He wanted to see her toes move. She wiggled them but did not flex her foot. He was not really worried because he did not operate near her nerves. He said the leg looks great and gave us the schedule for turning the TSF for her tibia correction. Dr. Standard recommended phenergan for nausea.

10:10am – Team of Doctors came in to check on Zoë. They checked her pulse on the top of her feet and listened to her heart. They asked Irene and I questions about the night.

10:15am – Allison Lynn, Dr. Standards PA, came in to talk to us. She said that everything looks good. We will start therapy today. Zoë will be able to put 50% weight on her leg immediately. Trish from PT also came in to see how Zoë is doing. She gave us Zoë’s Physical Therapy schedule for the next few weeks. We will be with Moshe as requested and she will be doing a combination of Land and Pool Therapy every day.

10:45pm – Rabbi stopped by for a visit and said hello to Zoë. He is from the Bronx and chatted with me and Zoë for about 15 minutes. Tomorrow Father Paul will stop by.

11:15am – Physical Therapy (PT) came in and moved Zoë to a wheel chair. She is still a little nauseous but she started to eat an italian icee but fell asleep.

Picture of Zoë’s in wheelchair eating an icee.

12:45pm – Hospital worker Lisa came in to discuss wheelchairs, walkers, and crutches. We ordered the full set of what Zoë will need for the next few months.

12:50pm – PT wanted Zoë to go for a ride (wheelchair) down the hallway but she is still very tired from anesthesia and lack of sleep last night. They will come back later.

1:50pm – Dr. Edward O’Laughlin (Anaesthesiologist) came in to check on Zoë. He checked her back and removed some extra tape. He said he would look into the nausea and that it is caused by the narcotics not the anaesthesia. He wrote a script for a narcotic blocker.

2:30pm – Zoë is still very nauseas, the nurse checked Dr. O’Laughlin’s script for nausea and said it is mostly for itchiness. She went back to Dr. Standards prescription for phenergan and gave her half of a pill 12.5mg. She also had a patch of scopolamine for behind her ear but Zoë wanted to wait for the pill to take affect. Temperature was 99.7.

2:45pm – Occupational Therapist Ritu Goel, OTR/L came with a cart to make a foot splint that Zoë will have to wear all night and all day except for PT. She can take it off for 30 minutes 2 times a day.

Picture of Zoë’s foot splint in deep purple.

3:30pm – Zoë still nauseous, we called the nurse who applied the scopolamine patch behind her ear.

4:10pm – PT came in to move Zoë from wheelchair to her bed. The combination of the phenergan & scopolamine patch seemed to have worked. Zoë did some exercises to move her ankle and flex her knees.

5:10pm – Zoë ate some peaches and had some juice. She is feeling better.

6:20pm – Zoë ate some chicken soup, crackers, and some cranberry juice. She is developing a slight fever 100.4.

7:10pm – Irene saw Dr. Reid in the hallway and asked if Dr. Standard was coming for rounds before he left. Dr. Reid said he left already but asked if we had any questions. I questioned an incision that I noticed on her scar that bothers her which was going to be avoided. Dr. Reid called Dr. Standard while changing the dressing and he told her that it was where the saw was and that it should not affect any nerves in that area and may have improved the previous discomfort.

10:05pm – Zoë ate 2 spoonfuls of egg drop soup and a wonton before going to bed. Nurse took her temperature and it is up slightly 100.7.

5:05am – Zoë had blood sample taken and her fever is 101.3. She needs to use the device that clears the lungs more.

9:22am – Zoë is complaining of pain in her left side under her breast. This is due to her lungs not filling up completely. Fever is now 101.9 and they giver her Tylenol.

10:30am – I met Lisa from the hospital in the hallway. She came to give Zoë Disney chocolates she had from her recent trip. Zoë selected the Dumbo chocolate. She also let us know that the wheelchairs, crutches and walker was getting delivered today or tomorrow.

11:15am – Nurse came to do Zoë’s first pin care with 50% peroxide solution. It is very uncomfortable for Zoë. The bandages are all checked and changed.

11:45am – PT came to get Zoë up in the wheel chair but a nurse came in to bath Zoë and cannot do it in the wheel chair so they will come back after lunch.

12:15pm – Allison Lynn PA came in to change incision bandages and put wire tie on lengthening bar. She also gave us a set of wrenches that we will need to turn the screws to lengthen her leg. Allison also signed the temp handicap tag for the car. She checked the chart and Dr. Standard wants her epidural in until tomorrow. Zoë will likely be released on Sunday.

1:20pm – PT came back to move Zoë into her wheelchair. They did some exercises to flex her leg muscles. These were very painful.

4:00pm – Zoë was very uncomfortable in the wheel chair and wanted to move back into the bed. Zoë was crying because her back was itch and her hip was very sore. Irene and 1 PT person moved her back into the bed.

5:00pm – I picked up her prescription medication because the pharmacy at the hospital will be closed over the weekend.

6:05pm – Nurse took Zoë’s temperature and her fever is down. They gave her Tylenol.

12:00am – 6:00am Vitals taken every 2 hours.

6:00am – Zoë had blood sample taken and her fever is 100.7. The nurses lowered her epidural from 8 to 6. They gave her tylenol for the fever and said she will get Percocet at 8:00am.

8:30am – I asked a nurse about her Percocet and Zoë new day nurse came in an said that they were going to give her Percocet at 10:00am because they gave her Tylenol at 6am and percocet has tylenol. She gave her an injection in her IV of another narcotic. Zoë pain is at 1-2 on a scale from 1 to 10.

9:15am – Pediatric MD came in to check her leg and asked her how she is doing.

10:38am – Nurse gave her 1 pill of percocet instead of 2 to see how it goes. She shut off the epidural and said that if she is ok with pain the epidural will be removed at noon. Zoë ate a few grapes and some pear and peach slices for breakfast.

10:45am – PT came by and worked on Zoë’s exercises. Zoë had some pressure pain and today was the first time we released her knee bar. It was painful for Zoë.

Picture of Zoë’s knee bar out during PT.

11:08am – Anesthesiologist came in and said he wanted to remove her epidural. I said she was originally scheduled for noon. He said his was concerned about Zoë’s fever running for more than 1 day. I told him I was more comfortable waiting to ensure that the pain meds are working before we disconnect the epidural.

11:45am – Pediatric residences came by to see Zoë. They requested the nurse to ask surgeon to request urine test to find out why she still has a fever.

12:18pm – Anesthesiologist came in and said he wanted to remove her epidural. He said it was worn off by now. We woke Zoë up and tested that she could lift her right leg.

He had her sit up and removed the epidural from her spine. It was really long.

12:20pm – Zoë started complaining of a lot of pain in her tibia (shin) she said the pain was at 8 and it felt like someone puched her really hard. The nurse went to get another IV pain killer.

12:31pm – Nurse gave her the IV injection and it took a few minutes to take affect. Zoë said her muscle is spasming. Zoë is complaining of nausea again. Nurse will give her Valium for the cramping.

12:45pm – Nurse gave her 5mg Valium. Zoë fell asleep.

1:30pm – Zoë is complaining of chest pain now. They ordered an x-ray of her chest.

2:07pm – Nurse gave her 2 percocets. Zoë woke up to take them and is in a lot of pain. Pain is at 8-9 right now.

2:10pm – PT came by to get Zoë to walk to the wheel chair. She saw that Zoë was not able to control the pain yet and she said she would come back.

2:10pm – 2:45pm – Zoë was in a lot of pain especially in her tibia. I released her foot splint but it pulled the skin on the tibia pins and it hurt more. I put the splint back on. Every sound and motion bothered her in the room.

2:45pm – Medicine finally kicked in. Zoë is resting now.

3:10pm – X-Ray came to take a picture of Zoë’s lungs to rule out pneumonia. We had to move her up in the bed and she was in a lot of pain. Zoë likes cold compresses across her eyes.

4:20pm – Nurse took out catheter and took a urinalysis.

6:00pm – Zoë took 2 percocet.

6:10pm – Zoë complaining about sever foot pain. Nurse investigates and foot split had given her 3 huge blisters on the bottom of her foot. They have to bandage blisters and remove split. Zoë’s foot is propped up with pillows because her ankle has to be neutral. Zoë is in a lot of pain.

8:20pm – Chest xray results are clear but her white blood count is still very high. They want a urine sample to see where it is coming from. Zoë is in a lot of pain.

9:35pm – Zoë gives up sample and is really in pain. Zoë needs a bed change because xray technician lost Zoë’s compress and we found it on her back soaking wet.

9:50pm – Nurse came with percocet and antibiotic pills. Zoë will get new sheets after meds kick in.

10:35pm – 3 nurses came in to change sheets and Zoë ‘s gown. the movement was very painful for her hip and femur rods.