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It all started with a twin high risk mono-amniotic, mono-chorionic pregnancy which means there was no membrane between the babies, they shared the same sac.  After 30 weeks 4 days gestation, the twins were born due to tachycardia. Salma was born on August 17th, 2008 along with her identical twin Lina. Lina (twin A) weighed 2lbs 14 oz and was 15 in. in length. Salma (twin B) weighed 3lbs 6oz and was 15 1/2 in. in length. They were born via c-section with each baby having the umbilical cord wrapped around the neck. Salma had it wrapped around her neck twice and the umbilical cords were knotted and braided. After their birth, we found out that there was Twin to Twin Transfusion. The girls spent 7 weeks in the neonatal Intensive Care Unit (NICU). I'll never forget one of the NICU nurses telling me and my husband it was going to be a bumpy road. She was so right. Sure it was a bumpy road with the girls being intubated, on CPAP, oxygen, having blood transfusions, and so many different tests, exams, and so much more. But we thought the bumpy road had ended and that we had been through the worst when we brought the twins home. We brought Lina home October 4th , 2008, and Salma came home on October 7th, 2008. Little did we know that the real bumpy road was just about to begin.
 
After about a week and a half of bringing Salma home, she started having "blue episodes" where she appeared to be drowning. Her sister had similar episodes and they both needed to be suctioned or they couldn't breathe. Her sister always managed to adjust herself easier and faster though. On October 18th, 2008, I called 911 because of back to back "blue episodes" that happened within a couple of hours, one lasting a full minute that felt like an eternity. Salma was admitted into Hope Children's Hospital and remained there until October 24th. During that week Salma had an EEG, EKG, Echo, BMP/CBC, UA, UC, BC etc. Of course she had no blue episodes while she was in the hospital because they maxed out her doses of Reglan and Zantac. A sleep study found episodes of Sleep Apnea (which I believe was another problem but not the main one). So on October 24th, 2008, Salma was discharged on an apnea monitor and caffeine, and an increase in her Reglan and Zantac doses.  
 
When Salma's 4 year old sister Nadia, started school in mid November, she got sick and got her sisters sick. So November 22nd the pediatrician prescribed home nebulizer treatments with Xopenex for congestion and wheezing. Two days later on the 24th we ended up in the ER for wheezing, stridor, and retractions. Salma was treated for croupe, sounded and looked beter after a few hours, so she was sent home. Two days after that we had NICU follow up appointment and the neonatologist said she was still wheezing and to keep up with the neb treatments.
 
Somewhere during this time Salma became a noisy breather. When we asked the pediatrician he said that was Trachemalacia (floppy airway) and that she would outgrow it. Salma continued to get worse through December and January. My husband and I were never convinced she would "outgrow" the problem. We always felt there was something not right with our baby. In January of 2009, the pediatrician discontinued the use of caffeine and apnea monitor. On January 23rd, I finally asked the pediatrician to give me the name and number to a pulmonologist. He did, and I remember him saying he wasn't sending us because he thought something was wrong because 95% of cases that sounded like my daughter were just trachemalacia and the child would outgrow it with time. I should have known that we are almost always that small percentage, the rare case, after all my pregnancy was 1 in 35,000 to 1 in 60,000 pregnancies and since it was a mono-amniotic, mono-chorionic pregnancy, the mortality rate was 50%.
 
On February 3rd, we went to the pulmonologist. His words when we saw her, "I really wish you would have brought her to me sooner." Obviously not a good sign. But the look on his face after he examined the x-ray told me how serious the situation was. After seeing the narrowing in her airway, he told us to return the next day for a bronchoscopy so he could take a look inside. We were so scared but we went, and he looked, and he diagnosed her as having subglottic stenosis (narrowing of the subglottic airway). I really tried to understand what the pulmonologist was telling us at the time, but I couldn't quite comprehend the medical terms. He said, "There is nothing else I can do so I have to refer you to a surgeon." A surgeon? Why, what was he going to do I thought. Once I heard that I knew that this was more serious than imagined whether I understood what was going on or not. He said he was referring us to an Ear, Nose, and Throat surgeon that would see her the following day and that he couldn't let her go home because she was so bad he had to admit her to the hospital overnight. We were confused, there is really no other way to put it. What and why was this happening in her throat? Why did she all of a sudden need surgery when a couple of weeks ago and for months before that doctors were telling us it was something she would out grow. Did I do something wrong? Is there somethingI should've done that I didn't? What was narrowing in my daughter's airway/throat? All questions that no one had answers to.
 
The next day we met the E.N.T. surgeon in the hospital and he explained that he was going to do a rigid bronchoscopy to take a better look at what the stenosis was and to see what he could do to remove it. He somewhat threw the idea out there that if worst came to worst and the narrowing was so bad and he couldn't remove it, he would have to put a little tube in her throat. That's it, no details about the tube, how long it would stay, the care, complications etc. and maybe it's a good thing he didn't . Maybe they don't want to give more information than needed and scare the family if it isn't for sure yet.
 
So on this day, Thursday February 5th, 2009, he performed the rigid bronchoscopy and did a laser ablation. He opened the airway by a lot in doing so. Salma stayed in the PICU Feb. 5th, 6th, and 7th and she came home on Sunday the 8th. While in the hospital Salma slowly started back up with the tracheal tugging, some retractions, and a little bit of stridor. Her 02 sats were good, she was eating/nippling okay. Now I never had a preemie before, never had a child with respiratory issues, and I never had a child that had a surgery. So I had no idea what to expect, what was normal or not. I had no medical background whatsoever. Even without all of that, I did know one thing, I knew my daughter. I knew Salma and what she was normally like. That Monday Feb. 9th, I took her for a follow up with the ENT surgeon at his office and although he was seeing some retractions and hearing how she was a little noisy, she seemed okay. She didn't seem like she was in respiratory distress. Salma was supposed to go back for a one week follow up bronchoscopy on Thursday, exactly 1 week from the surgery so the surgeon could see how her airway was healing. On Tuesday, 2 days before the bronchoscopy, something was telling me not to wait. I think in my heart I felt that way on Monday night, but it wasn't until Tuesday that made me act on what I felt. Salma was smiling, she appeared okay, and she was still arching her back and turning her head to the left how she had always done almost non-stop for the last couple of months. But as I carried her, her little arm would tap me on my chest as if she wanted to tell me something, like "mom, help me..." Salma just wasn't Salma. Something didn't feel right, and I didn't want to wait until Thursday to find out what was going on so I called the surgeon and I told him I wanted him to check her. He said he didn't want to almostforce putting the tube in by looking too early. I said, "She seems fine but I just want to make sure and I'd rather play it safe." He said he'd meet me at the hospital. I made arrangements for my mom and mother-in-law to stay with my other two children and my husband and I took her to the hospital. When we arrived there, her O2 sats were still okay. Low 90's, not too bad. The doctor was already waiting and they took her in. As my husband and I were waiting in the waiting room we didn't know what was going on, but at least the doctor was looking at her now we thougt. The next thing we know, the nurse/lady that goes around updating families calls, "Salma Ayyash." Sowe wave at her and she comes over. She says, "She is doing well, everything is going good, and yeah, the doctor did have to end up putting the tube in her throat."
 
What? What did she just say? Did she just say the doctor put a tube in my baby's throat? And in such a calm voice! I replayed it in my head like three times before asking her to repeat. Once it clicked I looked at my husband and said no and just started crying. This lady says, "Oh hun, I thought you knew" and gives me a Kleenex. No I didn't. I didn't know that I was going to bring my five month old baby to you and I was going to get her back with a tube in her throat! Something I didn't even know existed until a couple of days ago. Did she not realize that with that one sentence she flipped our world completely upside down? We were completely lost, and had no idea what to do, say, or think. I later found out that most tracheostomies are planned and not really emergent. I lost it in the hallway of the waiting room while on the phone with my mom and mother-in-law, my husband lostit when he saw her with all of that blue tubing coming out of her throat and her hooked up to the ventilator, feeding machine, and medicine machines. He said he didn't know what to do, he was supposed to protect her and there was nothing he could do to help her. Not even the most amount of money in the world could make our baby girl breathe right. I was all in the will of God now. We both felt helpless.
 
The ENT surgeon sat with us to tell us what happened and said that the swelling all came back and worse so he had to trach her because her airway was over 95% occluded. Although my husband didn't want me to ask, I did anyway. I asked how much time did we have left, would she have made it to Thursday. Only God knows what really would have happened but the doctor aid no, he didn't think so, and that we were probably dealing with the last hours. Hours to losing our precious baby girl. After that I will always listen to my motherly instincts. It had worked so far everytime in the past. We never thought that what took months to get so bad in her airwaay would get that bad or worse in 5 days, so we really weren't considering the trach tube a possibility. I guess we were being invulnerable. After talking to the doctor, we somehow felt better-somewhat. We didn't like how things happened but we accepted our new life and thanked God for not letting the outcome be worse. For giving our daughter a second chance at life. Because we realized the only way we could've had our daughter without that tube was if the worst hapened. We'd rather take our daughter with a tube in her throat, alive. We were thankful for that. It was very hard to adjust in the beginning, I'm not going to lie. It was our faith and love that kept us strong. I don't think we could ever adjust to not hearing her coo, giggle, laugh, cry, or even scream. The best thing that we were able to use in the future was the Passy Muir Speaking Valve and the cap.
 
Salma remained in the hospital recovering and me learning her care for the next 6 weeks. Our whole family was split for 7 weeks total. I don't know what I would've done without my mother that watched my other two daughters, and my mother-in-law helped too. Initially, I didn't carryy her for days, I didn't know I could or how to. She was hooked up to so much I didn't want to hurt her. It was so scary. Then I slowly started becoming used to it and it wasn't a problem anymore. When we were moved to the regular floor, a couple of th nurses remembered how she sounded a few days before she was trached. They said they could hear her from down the hall she sounded so bad. They were right, we had two cameras at home, one for each twin. Our monitor only showed us one so we used to put the camera on Lina because as long as we could hear Salma we knew she was breathing. I can't believe we actually accepted that it was just tracheomalacia for awhile. Salma was discharged from the hospital March 24th with home duty nursing 16 hours a day. She went back and was admitted from May 4-6 due to Para influenza. Around May Salma started receiving Physical and Speech Therapy, each twice a week. On June 11th the surgeon performed another rigid bronchocopy and found healing and opening of her airway so he approved use of the Passy Muir Speaking Valve (PMV) with supervision.
 
From June to December she got sick every now and then, but managed to stay out of the hospital. It was a slow start with the PMV but once she got the hang of it by increasing frequency then duration, she took off. December 10th, 2009, Salma's surgeon performed another rigid bronchoscopy and found further healing and opening up of her airwayn so he approved use of the cap after she went to the one month follow up. He told us she had to sleep with the PMV on all day and night before we could start capping her in small intervals. At the one month follow up the surgeon noticed the hemangioma on the top towards the back of Salma's head and said that depending on how the airway looked in June, he thought the narrowing in Salma's throat was a Hemangioma. It made so much sense because they were both midline and they were both biggest at the same time (when Salma was trached) and they were both decreasing in size at the same time. So I guess her diagnosis is more of a subglottic hemangioma because we pretty much confirmed it in June.
 
On January 21st, 2010, we tried capping and it was unsuccessful. There was just too much stress on the system. Salma was doing reversed breathing so we took her to a physical therapist that was also a respiratory specialist and she ordered for Salma to use a custom abdominal binder while awake. That binder got Salma over the bump because in March we re-introduced the cap slowly with increasing frequency and then increasing duration and were successful. On June 3rd, 2010, the surgeon performed the latest rigid bronchoscopy and was pleased with the original area of subglottic stenosis. He found a granuloma though on the inside of the trach site and therefore downsized the trach tube from a Shiley peds 3.5 uncuffed to a 3.0
 
We took Salma to see another physical therapist that is also a respiratory specialist and that is internationally knokwn on June 23rd. She is really good and we will be seeing her every 6 months for the next couple of years. Salma wore her cap all day and night with no removal and no suctioning from June 14th to June 24th and that night the cap had to be removed and she had to be suctioned for a plug. Her cap went back on that same night and she has been wearing it since 24/7 with no suctioning and no removal whatsoever until today August 11th, 2010. Salma had a laser surgery on July 15th, 2010, to remove the granuloma that was not resolved with downsizing. She also had a sleep study done July 18th, 2010 and the results showed some apnea. The E.N.T. doctor wanted us to got to Salma's pulmonologist to see if this was of concern. Her appointment was on August 10th, 2010 and he said that it wasn't of great concern and that he would talk to her E.N.T. doctor. So now we are waiting to hear from him. We will move from there.
 
I just want to thank all of the families for sharing their stories. I have learned so much from every single one. You are all in my prayers. I hope our story can help someone the way all of yours helped us.
Thank you Cynthia Bissell, for creating a site where all of us can share our stories so we can learn from each other, and support each other.
 
Please keep Salma in your prayers and I will try to update as soon as possible. Thank you.
 
 

• Gender: Female
• Demographic Region: North America
• Siblings: Two
• Medical Conditions: Laryngomalacia, Subglottic Stenosis, Tracheomalacia

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