So Brooklynn had a much better day today than she did last night! Last night was a complete nightmare! Her orthopaedic surgeon wasnt kidding when he said this was a painful surgery. And he told us this BEFORE he actually went in and saw what he unexpectedally saw. There ended up being much more to this surgery than we thought. She screamed in pain all night long. Her heart rate was jumping and her sat's were dropping. She was being given morphine every 2 hours, and every 4 hours was being given Tylenol with Codein and Motrin at the same time. They even started giving her Lortab on top of it all! Nothing was helping! I felt so helpless and spent some of the night just in tears right beside her. But luckily, she has had a good day. She will still have spasms of pain and will cry, but nothing like last night. Tim has to work tomorrow so he went home, and it's just Brooklynn and I here tonight. But before he left, we unhooked her from all her monitors and pumps, and she went to dinner with us in the cafeteria. We piled some pillows, blankets and her boppy in the radio flyer wagon, propped her leg up, and wheeled her down there. Of course her favorite baby doll came too. :) She had fun. It was good to get out of the room! We also took her down to our usual floor to see all our nurse friends there. They were sooo excited to see her!!! Then we went to the family library down on the 2nd floor and rented the new Karate Kid movie. I have been dying to see it. Very cute! The pain med's have been minimized to regular Tylenol and Motrin, and is still ocassionally receiving blow by oxygen to keep her sat's from dropping. She is trying to go to sleep now and is a little fussy and seems slightly uncomfortable. We are going to try and wait it out and if she needs a dose of something more to keep her comfortable, we may give it to her. But for now, I am hoping she will just fall asleep without it. I am going on about 4 hours of sleep in the last 60 hours (to be exact..oh my gosh i just added that up!..lol) Waiting on her to fall asleep peacefully and I am OUT! Hope everyone has had a good week so far and a happy Friday tomorrow! Brooklynn will be getting a hard cast on tomorrow put over her soft cast and hopefully we'll be going home soon. Have never made it out of the hospital in less than 18 days for any visit, so if we make it out in less than a week, I will be ecstatic! Talk to you soon.
XOXO
Tim and Katie
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Brooklynn's Neonatal Woe's
- Born at 5 lbs 8 oz. she was less than 4%tile in weight
- At birth she went into respiratory distress and was immediately taken to the Neonatal ICU and put under an oxygen tent for approx. 18 hours
- At day 2 of life she had shown difficulty feeding due to uncoordinated suck and swallow and required a combination of NG tube and oral feeds.
- She had hypoglycemia and jaundice which was mild enough to not require any treatment.
- Day 2 of life she had an Echocardiogram performed on her heart. It demonstrated a small PDA and a PFO with mild pulmonary stenosis and a bi-directional shunt. There was a domed pulmonic valve and an increased right ventricular pressure. She had a single episode of bradycardia.
- A swallow study was performed during her NICU stay which showed aspiration into her lungs and began feeding with the help of a Speech Pathologist 2 times a day with the rest of her feeds through an NG tube.
- She was discharged from the hospital at 18 days old on a heart and apnea monitor with an NG tube for her feeds.
Brooklynn's Medical Woe's
- After seeing an Emory Orthopaedist and an Emory GI Specialist, we were sent to Egleston Childrens Hospital for a few outpatient labs; an ultrasound on her hip to make sure it was in place due to her contracture in her left leg, an Upper GI to show possible GERD (reflux), and a swallow study to see if she was still aspirating. The ultrasound on her hip demonstrated that her hip was in place and all was well. The upper GI had shown that she did infact have reflux disease and also had shown unexpected Malrotation in her small intestines. We never made it to the swallow study as she was admitted through the ER for immediate emergency surgery to correct her Malrotation.
- On March 2, 2010, Brooklynn was admitted to Egleston Childrens Hospital and taken to the operating room for open surgery. She underwent a LADD procedure This included a duodenostomy repair of duodenal atresia and annular pancreas, placement of gastrostomy tube (G-tube) and an appendectomy. During her stay, she was seen by an Emory genetics doctor and was clinically diagnosed with Rubinstein-Taybi Syndrome at 6 weeks old. She was discharged 15 days later on March 17, 2010.
- Home for 40 days, Brooklynn had many choking spells due to Aspiration. Scheduled for surgery sometime late June or early July, Brooklynn had a choking spell in which she turned blue on April 22, 2010 and was immediately re-admitted to Egleston Childrens Hospital once again.
- April 26, 2010 Brooklynn was taken to the operating room for a Nissen Fundoplication to prevent reflux and hopefully cure her aspiration issues. This thankfully was completed laproscopically. Brooklynn was discharged 2.5 weeks later.
- During her inpatient stay at Egleston, A spinal ultrasound with a follow up MRI was completed per our request which showed an abnormally low lying spinal cord. A inpatient consult was completed with the Neurosurgeon and was decided, although aruguable, due to her syndrome, tethered spinal cord surgery would be later performed to increase her chances of normal development.
- After her discharge, Brooklynn was taken to Chattanooga, TN to meet RTS specialist and genetics doctor, Dr. Cathy Stevens. During her assessment, part of Dr. Stevens finding showed either a dislocated or missing left knee cap. An appointment was made immediately after to meet with the Emory Orthopedist once again.
- After meeting with the Orthopedist, an Ultrasound was completed at Egleston on her left knee. We've just received the results. Her left knee cap is smaller than the right one and dislocated. This will require knee reconstruction surgery scheduled on September 22, 2010.
- Surgery was completed on November 3, 2010 at Egleston Childrens Hospital on her tethered cord and her dislocated left patella. The neurosurgeon completed the laminectomy to release her tethered cord first. Everything went smooth. The orthopaedic surgeon went next to repair her dislocated left patella. After going in, he realized her left leg was a little more difficult than expected and her incision was rather large. Post surgery she was in a full leg cast for 6 weeks and now continues to be in a KAFO for approx. 20 hours per day. He completed the surgery, but there is no guaruntee that her patella will remain in place due to her low muscle tone and a higher probability to dislocate again. So far everything has been fine and she is healing well, although slow. She continues physical therapy 2 days per week to learn how to use her legs and walk. Her therapist is also using E-Stim therapy on her left knee to help wake up those muscles that have been sleeping since surgery and get her leg moving again. Lastly, her general surgeon went in the OR to repair the granulation tissue surrounding her feeding tube site. After repeated efforts of trying to rid the granulation tissue, this time...it WORKED! Yay! No more mess! All in all, her day spent in the OR was a huge success. I loved that all 3 surgeons were able to work together to keep her from having to repeat going under anesthesia more than she has to. All together she spent about 7 hours in the operating room that day and spent a total of 3 days inpatient..which was a shock! She had not left the hospital in less than 17 days prior to this surgery so we were ecstatic to be able to come home so soon.
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Woohooo! A better day...
ReplyDeleteI know there is lots of recovering still left to do, but I'm glad today was better than last night.
I remember those long hospital stays and the lack of sleep that goes with them. Wish I could be there to take a shift or two for you Katie!
Hugs!
Thinking and praying for my little friend to the south. I hope you both can come home soon, and that she has no more pain.. I have never spent a night at the hospital with Rach other then the two nights, when she was born... I know, and thank God each day for how lucky we are. He knows I can't handle it. You and many of my other RTS mommy friends are so strong, and I look up to many of you. Love you gals!
ReplyDeleteHugs, Katie. Lack of sleep is soooo hard, maybe the only thing harder than seeing your baby cry in pain and not being able to do anything for her. And then to have BOTH at the same time! I remember the two weeks in the hospital for pneumonia when Natalie was an infant and those were dark dark days. I pray you both can go home soon!
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