Will It Get Easier?

[mpgolden]

I think the first year is the hardest. My son came home with a trach and a vent and A g tube. Because of his condition, he will require some form of mechanical ventilation the rest of his life. This took some getting use to. The first year was filled with many therapies and doctors appointments. We had to learn to travel with the vent. Trach changes were scary. Now two years later, we have no g tube and only see the pediatrician once a year for checkups. Trach care is just another daily routine like taking a bath (our older kids even help). Therapies consist of twice a month. If we are going to be close to home, I even leave the vent at home sometimes. You will create a routine and life will settle after awhile.

Mgolden; mom to Noah; CCHS 20/25; trached and vented while sleeping
Mom to Beth and Hannah

[IzzyB]

I agree, the first year is the hardest. We just pasted our one year home mark with our son. I look back at the first couple months and wow, I was a wreck and practically broke down once a week. Now we enjoy our son more and things are way easier. Doctor appointments become less and less, care becomes easier, and you eventually learn to have fun with your children and enjoy life. Now we go to Disney all the time, we started going to the beach this year and even got a year pass for parking to go more often, we take him shopping, to restaurants, and we are even thinking of taking him on an airplane sometime this year. None of this seemed possible a year ago. A year makes a huge difference, BUT it does get easier before a year is up. Things started getting slowly better in October (our LO was released the end of April last year) and at first it seemed like a little improvement, but when I look back, we have come a long way.

[johnnyw12781]

It's very encouraging to hear all these things...especially the Disney thing! I have always fantasized about the look on my child's face the day I could bring them to Disney. Now that I finally have a child, I'm optimistic that a day will come that we can surprise Ellie with a trip...or surprise myself with a trip!

We're still fighting a few battles with her. Her sats have been all over the place today and we're not really sure why. We've been chatting with her Pulmonary Doctor all day hoping to incorporate a few more steps into her daily regiment that will avoid another re-admission. She may be coming down with something or maybe her reflux is acting up again.

[sadiebean]

First, ditto to what everyone's said about things getting easier (Paul has been home a few months shy of 2 years -- wow, I can't believe it).

Amino acid supplementation has been a huge help to us as well, to cope with the inevitable stress. I highly recommend The Mood Cure, which outlines what you can take when.

To oversimplify, amino acids are teh building blocks to neurotransmitters, and we use our supply of them up quite rapidly under stress (and drinking coffee, alcohol, poor diet, etc.)

Things like seratonin, dopamine, etc -- the chemicals that calm us down, ease pain, give us energy (the right kind, not the nervous kind.)

I used to reach for wine at, oh, 3pm? sometimes earlier. No not every night! though it was tempting... and hopped myself up on cups of coffee in the morning. Sugar, you probably know the drill, or some version of it.

After about 4-5 months home, I went on antidepressents, and even got a prescription for atavan which I would use during the 5pm "panic" time. I weaned off these things, but still needed help. Since November, which was just over a yaer home, my husband and I have been using the amino acids, and with far better results, no side effects.

Anyway, that's my tired long winded input. I guess my point is that those panicky and overwhelmed and depressive feelings can be helped with physical support -- and for anyone under stress SHOULD be helped, b/c stress depletes us physically.

Just sent a prayer up that Ellie is home for good, and that things go continuously smoother for you

[MelissaRyan210]

I am the parent of triplets - two of whom have trachs. Here is my advise.

#1. Keep your marriage strong - be extra forgiving!

My husband and I have been through absolutely the worst time of our lives in the past 3 years. There were times when I totally hated my life and wanted to just walk away. Thank god, I kept going because things did get easier. My husband is my lifeline. We have had to be tremendously forgiving of each other. We both are irritable and grouchy with what life has thrown us. We deliberatly try to be more forgiving because we love each other deeply. Divorce rate is high for those of special needs families. Keep this in mind. Try do to do something special each other each day - even if it is something as sweet as turning down the bed for her or drawing a heart on a peice of paper in her pocket.

#2. Get support from all you can.

Social workers can drum up volunteers. Churches can bring meals. Family can rotate who comes to provide relief.

#3. Keep your chin up... time is your friend.

Its going to suck - no doubt about it. But you will survive. It isnt forever. Think of it like a semester at college you particularly hate. What doesnt kill us makes us stronger. I feel so for those just coming home. But with time, things WILL get better and then time will help you forget how much it sucked.

I think the first year is the worst. Each year gets easier and easier.

I wish you the best!

[Bradley's Mom]

welcome!! It will get easier! It'll be 1 year this Thursday since we brought Bradley home. We we're just saying how last year over the summer (we both teach so we were home) that we were petrified to bring him anywhere. We never took our eyes off of him. If my hubby went out to play 9 holes I would call a million times scared to death because of something...I was just nervous being alone at first. Now we go everywhere with him and we're never nervous to be alone. I don't really know when it happened but it did. You learn as you go and you get more comfortable as you go. I totally get the new baby stuff...we are 1st time parents too. It's always a joke b/c we go out and remember the trach bag, the O2, the suction, the pulse ox and forget 'typical' things like diapers, wipes and clean clothes This board has been an amazing help with all the things that do and will come up!! Good luck with everything!!