We are a typical American family of four…mom, dad, and two kids. We are like any family you find wherever you go on any block of any town. We have a modest size home, a minivan and a work car. Our six year old daughter plays soccer, we attend church, support our schools and community. I am a stay-at-home mom for our 20 month old son, and we enjoy our family and friends. But there is something that makes us different than your typical family – we have learned to not take anything in life for granted and to live each day of our lives as if it were the only day. We do not make many plans for the future. For example, my daughter’s birthday is this Friday. While she has been asking me for weeks about whether we are having a party or going to Chuck E. Cheeses, I cannot give her a straight answer because I don’t want to let her down if it doesn’t happen. We cannot plan weeks in advance for things…and many times we cannot plan even days in advance. I have finally decided on having a small surprise party so that way if “something” comes up she will not even know to be disappointed. You may be wondering why we live our lives this way. To understand you will need a little background about us.
On Dec. 3, 2002, we welcomed our 2nd child, Noah, into the world. After a very normal and healthy pregnancy we were expecting to have a very “normal and healthy” son. Within two hours of his birth we learned that was not going as planned. Our son was born with Down’s Syndrome and a condition called Esophageal Atresia – approximately 5 cm of his esophagus was missing. He was immediately transported to our local Children’s hospital, which luckily for us, is only about 20 minutes from our home and is one of the finest in the country. He spent two uneventful months in the NICU and finally came home to us, with an unrepaired esophagus. We were taught many things about how to care for a medically fragile child before he came home. He came home on continuous suction for his upper esophageal pouch and with a G-tube. We did not care though as were just happy to have him home. He spent two months at home doing very well, but began having respiratory problems. This started us on a journey that has proved to be the most difficult in our whole lives.
Over the course of the next six months our son spent four months in the PICU and two months in a transitional care unit at the Children’s Hospital. During this six month stay he underwent surgery to have a tracheostomy placed because he had three serious upper airway obstructions and a condition called tracheomalacia. He was put on vent support indefinitely after coding once because of his weak trachea. He had two surgeries to repair his esophagus and then many complications after. He also contracted a staph infection during his stay and we were informed at one point that he was critically ill and there was nothing more they could do for him. If his lungs gave out that was it. But, he pulled through. At 10 months of age he came home . . . with his trach, on vent support, and with a GJ-tube. We were very blessed to have him home and we were able to keep him healthy and well all winter. We did not take him anywhere except to the doctor.
At 14 months of age we learned that the surgery to repair Noah’s esophagus had not worked and would need to be redone. While our Children’s hospital is one of the best in the nation they are not as familiar with the problem Noah had so we sought out the expert surgeon for this problem. We took Noah over 700 miles from home for a four month period to have his esophagus surgery redone. During this time we also had heart surgery and a Nissen Fundoplication performed. Also during this time we were able to wean him off of his vent support. And finally at 19 months of age Noah came back home, having spent 12 out of his 19 months of life in a hospital. He is now doing well, but there are many obstacles for him to overcome.
A typical day for us starts like many other families. My husband has to be at work at 7 am. He leaves our home at 6:30 and does his best to not disturb his family while getting ready. But occasionally I am awoken to hear him at Noah’s crib repositioning him or suctioning out his trach, and talking to him before he leaves. After telling me bye, I usually try to snuggle back into bed for just another half hour after checking to make sure that Noah’s feeding bag has enough formula in it to last until 8 am and checking to make sure his heart rate and O2 levels are okay and sometimes giving him another suction. At 7 am I get back up and go about preparing to get my daughter up and ready for school. What should be an easy thing to get her dressed, teeth brushed, something to eat, and off to the bus stop is not always so easy depending on when Noah awakens. Some mornings Noah sleeps very well and never stirs during this time, but on those mornings that he awakens, in between getting my daughter ready for school, I have to constantly run into the room to suction Noah’s trach because he is always pretty junky in the mornings. Finally at 7:45 am my daughter has to head out to the bus stop. It is not far from our house, but I always try to stand outside and watch to make sure she gets on the bus safely. So I am usually standing outside with baby monitor in hand watching my daughter . . . this is in between having to run back into the house to suction Noah. Once she is on her way, back into the house I go. I get together Noah’s morning medicines and get those into him and then stop his overnight continuous feeding. Luckily for me he wakes up very happy and ready to play. We also have a crib in our living room and a shelf with medical equipment and supplies. This is where most of Noah’s care is done.
In the morning I put him on the floor in the living room and let him play while I get his clothes and supplies together for morning care. Morning care for a child with medical needs is much more complex than a typical child. I have to get trach supplies, G-tube supplies, special lotion, new humidivent, scissors and tape, breathing treatment medicine, plus the normal things like clothes, bath time stuff, diapers, etc. We end up with a nice pile on the floor. We first do a bath in the kitchen sink where he loves to splash and soak everything then back to the living room floor we go for all of his cares and to get dressed. Usually by 9 am he is cleaned up and ready for the day. I then consult my planner, which I cannot live without, to see if we have any therapy or appointments for the day. Currently we have two different therapists (but we are supposed to have four) who come to our house one day a week each for sessions and we always have at least one doctor’s appointment each week. We also have respiratory therapist who visit from our equipment company once a month, a nursing supervisor from our nursing agency who visits once a month, a service coordinator from our Early Intervention program who visits once a month, and various other individuals who come out. So I spend a lot of time with my planner and have to stay on top of who’s coming on which day and at what time. This helps me to know if I need to get dressed right away.
On the days there are doctor’s appointments, if it’s early, I try to get everything together the night before. There are many things that a child with a trach needs. We have an emergency bag that we keep in our van so that we don’t have to carry that in and out of our house each time. We have to take our portable suction, extra suction catheters, Lysol wipes to sanitize anything he’s going to be touching like a shopping cart at the store, toys he drops, etc, portable O2 (just-in-case), a diaper bag with normal baby items plus some, I have to think about how long we are going to be gone and whether we will need the feeding pump for a bolus feed and how much formula I need to take with me. On top of this I need my purse and I always grab my planner and my medical notebook that I use to record information about the visit, questions, and to provide the doctor’s with information they may need.
On days where we do not have any appointments, our day is pretty typical. Noah plays, naps, watches cartoons, we take walks, go outside and swing, run errands, etc. However, there is a burden that always follows me around whether we are just at home or going somewhere. While he needs many things at home and on the go (suction machine, O2, emergency bag, etc.) there is also the way he gags and chokes that makes things harder to handle. Because of his esophagus problems, he does not know how to eat by mouth and cannot handle his oral secretions like other people. He gags on these throughout the day. After the umpteenth suction for the day, there are many times where I just sit and cry and wonder how I am supposed to continue to do this day in and day out. While it may not seem that bad to someone on the outside, it’s so hard when there seems to be no end in sight. In addition to this, he gets three bolus feeds everyday. There are some days where I feel like all I do is hook and unhook him from his feeding pump.
A big part of the care I provide for Noah is not only as his mother and as his nurse, but as his therapist. Because Noah was born with Down’s Syndrome, he was already set up to be delayed developmentally. Add to that all of the time he has spent in the hospital and it’s easy to see that he is way behind. I try to spend time with him each day working on the skills he should have already mastered months ago, doing oral stimulation in hopes that one day he will eat by mouth, working on sign language, and working on his poor muscle tone throughout his whole body. Sometimes this is so overwhelming and I have to admit there are days where I don’t focus on anything specific.
There are many challenges, frustrations, and joys that come from having a child with special needs. Financially it has taken its toll on us. Everyday I think about how there are things we cannot afford because I no longer work. We are lucky to have good insurance and because I stopped working Noah qualifies for Social Security and Medicaid. Unlike many families, we know that Noah’s medical expenses are being taken care of. Everyday I think about how nice it would be to get away with my husband alone, but know that’s not possible not only financially but just because there is no one else to care for Noah. We do not get any help from family or friends in caring for Noah so one of us always has to be with him. We have nursing care 3 nights a week, but it seems to be more trouble than it’s worth. We have had several nurses . . . one was stealing from us, one was incompetent about how to care for him, one makes everything little thing into a huge medical problem with him, one gave him medicine and then lied to me about it. It’s so hard to trust someone else to care for him so we opt to do most of his care ourselves.
There are times where we feel alienated from our family and friends with “normal” families because they just do not know everything that is required. When you just see bits and pieces here and there, it’s hard to understand the frustrations, hurts, disappointments and how hard it is to care for a child who has extra needs that are life or death. Things can happen very quickly with Noah’s medical condition and he could be in the hospital before we even know what’s happening. We have all four had colds the past week or so. We have been on pins and needles with Noah taking him for a chest x-ray, calling the pediatrician, doing breathing treatments, etc. because we are so terrified it’s going to turn into something bigger for him.
But overall, we are a happy family of four. This is our life and it’s what is “normal” to us. After bringing Noah back home from having his esophagus surgery redone, my husband made the comment that he was glad things were back to normal. Then he started laughing because other people do not see our lives as normal at all. But to us this is what has become normal. Suctioning Noah is just like wiping your kid’s nose, going to the doctor at least once a week is no big deal, having to pack up a ton of stuff for one child, while may be frustrating at times, is just second nature now, and having your 5 year old walk into the kitchen to tell you her brother needs suctioned…we don’t even think twice about it. We try not to complain and just accept what God has given us — a precious little boy who needs us more than ever. While we do not accept that our lives will always be like this, the biggest thing we have found that has helped us to deal with it all, is just to accept this is the way things are right now and when it’s time for us to be out of this situation and on to something better, it will happen. And while Noah will never be a typical child, that’s okay. We love him exactly as he is. We worry about our daughter and how this is affecting her, but try to stay positive that it’s only going to make her into a better person.