Emily Lind Hollifield
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My daughter Emily was born 10-27-97 after a normal pregnancy and scheduled c- section, weighing in at 7.5# and 19.25 inches. Emily was born with cranial stenostosis and left leg displacia. One was treated with surgery at six weeks and the other with a harness for four months. Emily first started having respiratory problems after her craniotomy. She was having major episodes of desaturations with "bradys". She was in the ICU for six days before she successfully weaned herself off the o2 and she was allowed to come home. No one seemed very concerned about the episodes and blamed it on her size and age ( 10# 6 wks). At her 3 mth check up her pediatrician was concerned about the labored breathing and suggested a pulmonary consult. Because my first son was a "heavy" breather, I never was terribly concerned about the breathing. She went to a ENT and was diagnosed with Laryngeal malacia and was told it was fairly common and just be patient with feeding( she was also refusing bottles at this point, but still breastfeeding.) Three weeks later she respiratory arrested at home after nursing. After rescue breathing she revived, we called the pediatrician who said it was probably a reflux reaction and to watch her, and do all the precautions ( lowering one end of the crib, thickening feeds, and sitting her upright 30 min post meals.) After three episodes of stopping breathing, I took her to the ER at the hospital where I am a nurse. She was admitted and observed for four days with no improvement and on 1l O2. She was transferred on the fourth day to Baptist Hospital in Winston-Salem ,NC. Finally she was getting somewhere! The pulmonologist came in the next morning to examine her before the bronch and said after his quick exam, that she would need a trach. I don't really remember too much after that due to shock and exhaustion (I had been staying at the hospital 24 hrs/day). He confirmed the diagnosis after the bronch and said they would be doing an MRI and a ENT consult the following Monday and we would see where we were then. Monday she saw the ENT who tried to be hopeful, but Tuesday they ended up traching her when they couldn't extubate her after the MRI. Because she was sedated with a unstable airway, the MRI technicians were afraid do it without anaesthia in attendance. After they reentubated her in the PACU, they sent her to the PICU. At this point hysterical, I called my husband who came right over and he stayed and I went home with my son. When he called later and said they were doing the surgery I went right back over after getting my mom to watch our 20 month old. The surgery went well and the only complication was the next day when she started hemorrhaging and they took her back to surgery. They kept her in a sedated state for three days to let the incision heal. After a week she was back on the regular peds floor, on 28% o2. It took her 4 more days but she came home that Friday on RA. Unfortunately she was readmitted Monday for RSV and spent 5 days in the hospital and was on o2 for about three weeks.
Emily is doing really well now. It was like bringing home a different baby. Much happier, more relaxed and smiles all the time. I finally got her weaned from the breast at 11 months, and now is eating everything that doesn't eat her first. She's 12.5 months old and is trying to walk. In case I forget to say, her diagnosis for the trach was tracheomalacia and upper airway collapse (severe laryngeal malacia). Our kids are the joy of our lives and were are grateful for every day with them. We are hoping for decannualation in 7/98.
- Update:
As of 1/21/99, Emily has been trach-free. She was to have tubes for her ears placed and
her first post-trach bronch. She had all that done , plus gave us a surprise, her trach
was able to come out!! She came home 1/22/99 and has done well. She'll be monitored for
about a week with the pulse at night and at naps, but that is precautionary- her ENT says
she's doing really well. Thank you all.
The Hollifields
- Jennifer Hollifield, mom to Lucas 2.5 yr. and Emily 1 yr.
