So I will talk about some ways the Chrnoic Lung Disease have affected our family while keeping in mind that I am so very thankful that he is with us still.
1) Sleep issues. These are sleep issues that aren’t developmentally normal. It isn’t typical newborn wakings for feedings or even teething and ear infections of infancy and toddlerhood. We did have all of that plus the timed feedings to get him nice and heavy for his heart surgery at 6 months old. (You don’t get to celebrate the baby sleeping a good stretch if you have to go in every 3 hours or more to feed a long forced feeding.) Ethan was certainly a good sleeper, but with the blessing of home oxygen comes the monitoring equipment that beeps, sometimes very often even though we are giving him the intervention the machines are telling us he needs. Sometimes its an error like the toe probe coming of and that is even more irritating because we are losing sleep for something that he didn’t even need and let me tell you he does not always go back to sleep even at 3am!
Also he was an amazing independent sleeper, I’m sure partly due to the fact that he was in a hospital a lot and had noises going on a lot and didn’t get rocked to sleep because he was chemically paralyzed for a month in mid-infancy. Now that independent sleep is mostly gone because he needs oxygen when he sleeps so often that we have to lie down with him to get him to sleep because otherwise he will pull the nasal cannula out and pulse ox probe off his toe. That on top of baby sister being really demanding and waking a lot a couple of years ago added up to not a whole lot of evening time for mommy and daddy! but now that he hasn’t been taking naps as much he’s out faster and we have felt a little more “normal.”
2) Missing social events. Everyone who knows us knows this is part of the deal for us anyway. It’s a personal choice on how limiting you want to be at what times of years, etc Burt also doctors have advised us to limit Ethan’s exposure this year. We are hoping the g button will help with that concern and he won’t aspirate as much. It takes a toll on us spiritually to be missing so many church gatherings however we have started to go to an equppping class/ e group and got to go to a Christian marriage conference recently so that has been a huge boost! OTherwise, unlike for our daughter, any babysitter of any kind or age or knowledge is not enough for the medically fragile child. At least not for a length of time and for our comfort level for almost any length of times which will be even more important when he also has a g button. We have lots of supportive family so it hasn’t been a major issue but depending on what’s going on, it can be hard sometimes. People get sick or have things going on and we aren’t the only ones with kids, after all. If you ever want to bless some family with a medically fragile child and you are in ministry and/or have some experience with special needs kids’ equipment (like speech, OT, or a nurse) then doing a special needs parents night out or just for a friend you know is a huge offer! Our church does that night out thing sometimes and so do other churches in our area.
3)Potty training or other skills or education training-When your kid is medically complex, you spend so much time with your child doing interventions for keeping him alive or going to appointments that sometimes what you are left with you’d like to allow your child to get a say in it. So pushing them to do things is hard and if they also have developmental issues, it is extra hard for them anyway. (Not impossible, and that varies for kids with disabilities-some get it almost as soon as typical kids but for the most part its a long, long process.) But we do it all and so do other parents-because we love our kids. I will add that when your child is very ill in a hospital bed, there is not a lot of leeway for those things and you can focus on speech all you want but the other things go by the wayside. Ethan is like Bambi after each hospitalization with his gait, and we have lost a lot of potty trips in that time.
4)-White coat syndrome-He is also kind of emotionally traumized (not exaggerating) now that he is older and can think all of that though more and remember.
5)counting blessings-Something positive I could say is we do not take our days for granted because we know how dangerously close Ethan has been to death far more than I like to think about. It was mostly when he was a little baby, yes, but also when I went to see him after work in October at the children’s hospital, they told me they were worried they were going to have to put him on a ventilator the way he was moving and acting. A good deep suctioning and prayers kept that from happening! (Deep suctioning-tube going way down, not just the straight tube in the nose, but a coiled one)
To look at where I am now and where I was back then (both of us, but this memory was just me walking in)—I remember sitting at my desk as a new working mom arriving at 8am and before I made any calls or welcomed my first kid for therapy, I cut out a number 9 from construction paper and made a “9 month” card for Ethan turning 9 months so I could take a picture of him with it in the step down unit at ACH. I was so happy he was off the paralytic for that. When he turned 8 months old, he was like a sick, sad tiny Rip Van Winkle and I did not want a picture of that for his baby book. And now look-I go to work and while I know he can get sick again like that perhaps, right now he is 5 years old prepping for kindergarten and enjoying his therapies and I Pad time! I live in the town in which I work, and I get to come home to him and his sister’s smiling faces and see them wrestling together. Yes I have a lot to be thankful for.