Charlotte Peak
TrachKid Profile
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Charlotte Peak
Cameron and Charlotte were born on July 7, 2003 at UMass hospital in Worcester MA, they were 13 weeks early. Cameron weighed 2.5 lbs. and Charlotte weighed 2.4 lbs., they were both about 15-16 inches long. They were on the high frequency ventilator for at least three weeks and were finally moved to a regular ventilator. After many tries at being extubated we were told that they may both need trachs because of stenosis. We went to Boston Children's Hospital for a second opinion. They thought if we just let them grow for a while they may not need trachs. So of course we waited hoping for the best. After six weeks in Boston, they finally looked at what they were dealing with, Charlotte had improved since being moved and only her vocal chords were swollen. The doctor thought maybe she would only need her trach for a year. Cameron was extubated for 2 weeks, but the stridor never got any better. So they decided maybe they should look at him also. Well, he was 10 times worse than Charlotte and the doctor thought he will need reconstructive surgery before his trach can come out. She also thinks they have reflux and they have been on medicine for that.
Besides their airway problems, they have been great since they came home. We were in the NICU for 4 months and we were warned that the would be back in the hospital in the winter with pneumonia. Well, we almost made it, but they went in the hospital for 12 days with bronchiolitis and are now home again and doing fine. Besides the trachs, they had other very common issues of preemies, BPD, PDA, ROP (STAGE 1), a staff infection from an IV and one bout of pneumonia when we moved them to Children's.
My husband and I were absolutely terrified to take home two tiny babies with trachs. But after a couple of weeks, we were very comfortable and would rather do all the care ourselves, instead of letting nurses do it. I am so scared that something will go wrong that I am much more comfortable taking care of them myself. No one will care for my babies like I do. We have two older children ages 11.5 and 13 who are extremely helpful in the care of the twins. They both know how to suction and take care of the babies, just in case they need to. If anyone has any worries, just believe in yourself and think of the babies.
At eight months of age, Cameron is 14.8 lbs. and Charlotte is 13lbs. We couldn't be more thrilled with their progress. We are hoping the trachs will be out by the time they are two, but I don't want to plan on anything.
Update, June 2004: May,2004, Cameron and Charlotte were both in the hospital this month for a bronch, endoscopy and a ph probe. The bronch showed no change, they both still have significant edema, the doctor is not quite sure what the problem is, she thinks it is still reflux even though the endoscope and ph probe have showed nothing, they both came back within normal limits. She also thinks they may have allergies, so they have switched them to Neocate formula and kept them on reflux meds just to see what the change might be. They are going to see an allergist at the end of June and back to the ENT to see if anything has changed. We are a bit frustrated because no one can tell us anything different. They are both growing great, Cameron at ten months is 18 lbs. and Charlotte is 16lbs. I hope we find something out soon. If anyone is in a similar situation we would love some feedback.
Update: May 2006: (posted June 2008) When Cameron had his reconstruction in July 2005, we considered having Charlotte's done at the same time, but decided not to as she was a little smaller than Cameron and still required oxygen. During his recovery we were extremely glad w had made that decision as we had dramatically underestimated how traumatic that time would be for all of us. So we waited until May 2006 for Charlotte's surgery. The surgery went well and she went into the ICu for her recovery. Cameron was given a paralytic drug together with painkillers and sedatives. For Charlotte they only used painkillers and sedatives (morphine and versed). This removed our concern of her being paralyzed but feeling pain with no way to communicate it. Another lesson we learned from Cameron was to request semi-permanent IV , as after Cameron was awake he had to have several IVs inserted which he didn't like at all.
Charlotte was kept sedated for 6 days and then taken down to the OR for extubation. This was not successful, so they kept her sedated for a few more days. This time they attempted the extubation in the ICU with me holding her. This seemed to calm her enough that shewas able transition to breathing on her own. After another day she was transferred to a ward, but required another week before she was allowed home.
Update June 2008
Charlotte has been diagnosed with Cerebral Palsy (spastic diplegia) which delayed her walking until she was 3. She wears AFO braces and a night cast and receives physical therapy twice a week. The decannualtion was successful and she has made tremendous strides. She is very talkative and active. Hervoice volume is lower than normal and she has had episodes of noisy breathing, but several bronchoscopies have failed to show a cause, which at least means that the reconstruction was successful. Charlotte attends pres-school three times a week and is a delightful little girl.
We would also like to thank the nurses, they know who they are, who stuck with us for three years, we love yuo and appreciate all the love and care you took of the kids.
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