When our son Joshua went into the hospital, we kind of hit a major detour. Our life was consumed with going back in forth to the hospital, communicating with doctors and nurses and John and I to each other on the phone....all while trying to carry on with the day to day life of having 8 other children. I mainly shared quick updates on Facebook and email, as I didn't have time to hardly sleep, let alone BLOG :) So, we didn't share too much on our blog. If you happen to be someone who checks our blog (and sees nothing there) , I'm sorry....and I'm hoping to share more updates and pictures now that life has gotten into a new "normal" (kind of sort of!).
I am SO relieved that Joshua no longer has a trach tube anymore. If you aren't familiar with that, it is a tube that goes went into his trachea, and became his airway instead of his mouth.....he would breathe through the trach tube, which connected at one time to a ventilator or to oxygen. What this meant was that an EMERGENCY breathing situation would occur if that trach tube (held in place by little Velcro straps around his neck) came out for any reason. So we had to be trained to do emergency trach changes, carry around extra trachs, ties, gloves, Saline and more supplies, every where we went. We got used to it but now that it is out, life very less stressful. Now that his oxygen levels have been pretty steady (without needing oxygen but breathing on his own), it is much less scary to bring him on outings.
At home, he has been monitored for his oxygen levels and heart rate 24 hours a day by a monitor which beeps and alarms This sets your own heartrate climbing when you hear it.....and often it is a false alarm, because the probe came off or its not reading correctly. Stressful! Now a days, he is doing so well, that we can keep it off during the day when he's awake. He is getting back to normal and I'm so THANKFUL!
Back when he was in the hospital, as part of a program to help with anxiety, I would visualize the future, and one I often used was our family going to a park and Joshua being healthy, strong and breathing on his own again. It struck me one day how this visualization had become a reality.....what a blessing from the Lord!
Nights are still a challenge sometimes....when he doesn't sleep, when his oxygen SATS fluctuate and wake us up or we don't have nurse to do his feedings,
but in general, life has gotten easier and we are so thankful! We are working out a new normal. Yes, his care is harder than before being hospitalized with setting up his feeds and his meds, but he is eating consistently now through his gtube and we don't have to struggle to make sure he eats (like when he drank through a bottle).
In addition to becoming more aware of how great a blessing Joshua is to each of us,
my eyes were opened to the plight of so many families that have severely disabled kids....in this case, with breathing and respiratory issues that require a trach. I joined a couple groups on Facebook (Moms of Trach Babies and Tracheostomy group) . It was like suddenly I was a part of a different culture of trach changes, vents, feeding tubes, home nurses, and the scary ordeal of being responsible for the care your child. Many of these moms had been doing this since their babies were born. I was amazed by this all and I have great respect for any mama who cares for a child with a trach, or any adult who has one as well. Its not easy.
Joshuas room...like a mini hospital
Going out and about and people (curiously) looking at your son, having to worry about if someone was smoking around your son's oxygen tank, having to pack a million things each time you went anywhere, worry about infections or a cold that could mean a visit to the hospital, being on "alert" 24 hours/day for a respiratory emergency, hearing stories of children dying due to infection or a trach emergency, and having to entrust your child's complicated care to a complete stranger so you could get some sleep.....these are things these ladies deal with each and every day.
I'm so grateful that I had a place to go to ask questions and get support ...from moms just like me, trying to figure out how to care for my child. I am so thankful hes doi,g so well and that some of my load has lifted, but I'll never forget that there are many families whose children may always have a trach and may always have these challenges. The next time, you see a child with a trach or a ventilator or oxygen, please remember their life isn't easy. Help them out if you can. PRAY for that parent! Most of all, remember that that child is a regular CHILD who loves and likes to interact and has interests. Talk to them and get to know them....you will be blessed! :)
Hoping that our (ever changing) new normal includes sharing more on this blog about ALL our family, and hearing from you too!
I am SO relieved that Joshua no longer has a trach tube anymore. If you aren't familiar with that, it is a tube that goes went into his trachea, and became his airway instead of his mouth.....he would breathe through the trach tube, which connected at one time to a ventilator or to oxygen. What this meant was that an EMERGENCY breathing situation would occur if that trach tube (held in place by little Velcro straps around his neck) came out for any reason. So we had to be trained to do emergency trach changes, carry around extra trachs, ties, gloves, Saline and more supplies, every where we went. We got used to it but now that it is out, life very less stressful. Now that his oxygen levels have been pretty steady (without needing oxygen but breathing on his own), it is much less scary to bring him on outings.
At home, he has been monitored for his oxygen levels and heart rate 24 hours a day by a monitor which beeps and alarms This sets your own heartrate climbing when you hear it.....and often it is a false alarm, because the probe came off or its not reading correctly. Stressful! Now a days, he is doing so well, that we can keep it off during the day when he's awake. He is getting back to normal and I'm so THANKFUL!
Back when he was in the hospital, as part of a program to help with anxiety, I would visualize the future, and one I often used was our family going to a park and Joshua being healthy, strong and breathing on his own again. It struck me one day how this visualization had become a reality.....what a blessing from the Lord!
Nights are still a challenge sometimes....when he doesn't sleep, when his oxygen SATS fluctuate and wake us up or we don't have nurse to do his feedings,
but in general, life has gotten easier and we are so thankful! We are working out a new normal. Yes, his care is harder than before being hospitalized with setting up his feeds and his meds, but he is eating consistently now through his gtube and we don't have to struggle to make sure he eats (like when he drank through a bottle).
In addition to becoming more aware of how great a blessing Joshua is to each of us,
my eyes were opened to the plight of so many families that have severely disabled kids....in this case, with breathing and respiratory issues that require a trach. I joined a couple groups on Facebook (Moms of Trach Babies and Tracheostomy group) . It was like suddenly I was a part of a different culture of trach changes, vents, feeding tubes, home nurses, and the scary ordeal of being responsible for the care your child. Many of these moms had been doing this since their babies were born. I was amazed by this all and I have great respect for any mama who cares for a child with a trach, or any adult who has one as well. Its not easy.
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| Some of his supplies....more in closet and on shelves |
Going out and about and people (curiously) looking at your son, having to worry about if someone was smoking around your son's oxygen tank, having to pack a million things each time you went anywhere, worry about infections or a cold that could mean a visit to the hospital, being on "alert" 24 hours/day for a respiratory emergency, hearing stories of children dying due to infection or a trach emergency, and having to entrust your child's complicated care to a complete stranger so you could get some sleep.....these are things these ladies deal with each and every day.
I'm so grateful that I had a place to go to ask questions and get support ...from moms just like me, trying to figure out how to care for my child. I am so thankful hes doi,g so well and that some of my load has lifted, but I'll never forget that there are many families whose children may always have a trach and may always have these challenges. The next time, you see a child with a trach or a ventilator or oxygen, please remember their life isn't easy. Help them out if you can. PRAY for that parent! Most of all, remember that that child is a regular CHILD who loves and likes to interact and has interests. Talk to them and get to know them....you will be blessed! :)
Hoping that our (ever changing) new normal includes sharing more on this blog about ALL our family, and hearing from you too!
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