Marquis Allen
TrachKid Profile
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Marquis Romero Allen was born on June 10, 1997 at 37 + weeks via caesarian section. He went into respiratory distress and had to stay in NICU. Two weeks later he had the sniffles. He was taken to the doctor and I was told he just had a cold and that there was nothing that I could give him it would just have to run its course. Well months went by and he got very congested. On September 14, 1997, the night I was packing his bag for the babysitters because I was returning to work after a three month stay on maternity leave, I put him to bed and not a minute too soon, my daughter yells at me from the bedroom that his lips were turning blue. I rushed to the bedroom, picked him up and told her to dial 911. His body was limp. I took him to a neighbors upstairs. She then performed CPR on him and her husband called 911 again. Shortly thereafter she got him to breath. Then the FDNY ambulance came. They told me he was very very sick. At the hospital he was intubated. What kept me going was the fact that through the whole thing he was still fighting. He was intubated for about 4 days. They told me he had pneumonia and a condition called Tracheomalacia. I have never heard of this before. They also told me he had a reflux and that he aspirates into his lungs and VSD (ventricular septal defect). He also had a hernia in his groin which only came out when he cried a lot. He also had a vascular ring which was around his trachea being the reason for the Tracheomalacia. In October he had the vascular ring removed. In December 1997 he had tests taken to see how severe his reflux was. It was severe enough for him to have a g-tube inserted. His g-tube was inserted in January 1998. After his g-tube was inserted he still always wanted a bottle so we had to gave him a pacifier so he can have that sucking feeling (to this day it is his best friend). In August 1998 he had a j-tube inserted. It didn’t last very long because one day it came out and by the time he got to the doctor’s office the hole had closed up and they had to do the whole procedure all over again. This time they reinserted a g-tube. I think they are better than the j-tube anyway. The j-tube was just held in place by a balloon. We don’t know if the balloon deflated on its on, or if it deflated by him pulling on it, or just by him moving around. All I know is that no matter how much he may tug on the g-tube or move around, it never came out. He has been hospitalized about 10 times with upper respiratory infections. He is constantly congested. He has his good days and his bad days. He is a fighter and I know the Lord is seeing him through all of this. Knowing this is what keeps me strong. Finding Aaron’s Page had helped me to find other children with his condition. I was beginning to think that no one else had Tracheomalacia because I have never came across anyone who even heard of it.
Update 6/17/99 - Marquis was transferred to St. Mary's Hospital for Children on Thursday, June 10 which was his 2 year old birthday. He is off the ventilator and he just uses oxygen. They are showing us how to suction his trach and I did it for the first time last night. They also showed us how to use the oximeter and set the limits. They also wanted to make sure I knew how to use the pump for his feedings (even though he uses one at home). They have to make sure we know and/or are trained on all the equipment he will be using once he is home. We will also be learning how to change his trach which they said will be done every month. We are not actually sure how long he will be in there. The doctor says about a month but he is eligible for a day pass (visit home for one day) in July.
Update 11/15/99 - After 7 months of being away from us, he is finally home. He came home on Monday, November 8, 1999. I drove up there with my family. The ambulance took him home since we are an hour away and my mother rode with him. It is such a great feeling. He had two previous discharge dates. The first one was for October 28. I got a call on the 27th telling me that they weren't discharging him because he had an ear infection and a fever, so they set the new date for November 2. I went all the way up to the hospital only to be told that he was sick and was not going home. They were in the midst of giving him a treatment when we arrived and he was coughing continuously. They said he was wheezing and they put him on steroids for a few days. His new discharge date was set for Monday, November 8. I didn't get my hopes high because they told me that on Saturday he had a low grade fever and that if he had it for the whole weekend they would not discharge him. Well when Monday came I called before I took that long trip out there for nothing and when the nurse asked me if I'm ready to pick him up I was so excited. I couldn't get up there fast enough. When we got there he was eating his favorite food (banana flavored pudding). It has been a week now that he has been home and he is doing really well. Taking care of him isn't as hard as I anticipated. He had 3 different nurses so far who come on different days. I'm just hoping that their schedules will become permanent. The nurses come during the day while his father and I are working. My day starts at 4:00 in the morning and ends at between 11:00pm and 12:00pm. I am up every time his pulse oximeter alarm goes off. Yes I am tired, but it is a tired that I wouldn't trade for anything else in the world, just as long as he is home with his family where he belongs.
Update July 2000 - On February 9, 2000, Marquis had his feeding tube removed. He initially was supposed to have it changed, but the GI felt that he was ready to have it removed. It took awhile for his stomach to adjust to not being full all the time. In the meantime, he was drinking pediasure by mouth and eating pudding.
Marquis started back to school on May 17, 2000. He is doing very well. He is eating more by mouth. Now he is eating pureed foods. Anything I cook for dinner I give to him. He likes pudding (his favorite being banana). He also eats baby fruit (stage 3). He is in school from 11:30am - 2:00pm. There he gets all of his therapies (speech, PT, OT and special education). He also gets lunch (which they either mash up or puree).
He loves going outdoors. He always points to the closet for his coat, especially if someone is going outside. He turned three years on June 10. He has made a lot of progress since coming home in November 1999 from the children's hospital.
On June 21, Marquis tried a passy-muir valve for the first time. He fought at first (before we even put it on). When we finally got it on, he coughed a bit, but he was not having any signs of distress. He had it on for two hours the first day. Now he'll bring me the valve and point to his trach for me to put it on. He loves hearing his voice so all he will do is start babbling (and boy does he sound loud with the valve on).
He's had a couple of trach infections and colds since being home, but nothing an antibiotic or extra nebulizer treatments wouldn't take care of. He's been able to stay out of the hospital and emergency room. I am so proud of how much he has accomplished. I owe all my thanks to God. To God be the Glory.
Update July 2001 - Marquis was decannulated on May 16, 2001. He went to the hospital on May 15. His trach was downsized from a 4.0 to a 3.0. He kept that on for a few hours, then they capped it. His trach was capped overnight. Then at 10:00 Wednesday morning the ENT came in and removed his trach. You could tell it felt strange to him. The first thing he did was put his finger in the hole. The nurse put a bandage around it but he was still feeling his neck. He had a bronchoscopy in November 2000 but the doctor felt that it wouldn't be wise to take it out since there was still a bit of a collapse. It is so quiet in house now that his machines aren't running all night. His voice is very loud. His oxygen saturations are between 94 and 100 at home. He had it taken out just in time for his 4 year old birthday in June. He is also potty training. I appreciate the support and understanding I received from this site.
Update October 2001 - On Friday, September 28, 2001, Marquis had his hole surgically closed since it did not close on its own within the four months since he has been decannulated. The surgery went well. There aren't any stitches on the outside because they did it from the inside. They said that when it heals that it will look like nothing was ever there. Marquis was drowsy after surgery. But he did drink one and half 4 oz containers of apple juice. We went home that same day with an antibiotic and pain medicine. They gave him morphine for the pain in the hospital after surgery. He only complained twice of the site hurting him but he was saying he was tired until Saturday. He ate one bowl of farina that lasted him the entire day. He just what he could at the time. By Sunday, he was his old self again. He ate breakfast, lunch, dinner and snacks. He wanted to go outside and play and he was running around the house. He is continuing to progress well. His vocabulary is increasing and he is starting to speak more clearer. He is even starting to chew his food for a short period of time. He still takes out little chunks after saying "too big". He is going to need a lot more speech therapy and we are working with him at home as well as in school.
I can be reached at rsatchell@iie.org
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- United States
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- New York
