Tuesday, February 17, 2009

SMA


I don't think I have given a very real picture of what happened or how this diagnosis and hospitalization has affected our family. So I had the most perfect pregnancy, no problems, normal amount of discomfort. Micah kicked me in all the same places my 3-year-old Joseph did and We had no reason to think there was anything wrong. My labor and delivery were probably what most women think they want, 3 1/2 hours from beginning to birth. Micah was healthy, pink, and had a great set of lungs. He screamed!! Joseph didn't even cry when he was born so this was different to me. We thought for sure he was going to be the exact opposite of Joseph, loud and wild. A few hours later he was mellow and content, nursed well and slept great. PERFECT!!

The first couple of months babies don't do much except eat and sleep, poop, pee and cry. Micah did all that very well. It wasn't until we took him to his pediatrician at 2 months old to get a check up and shots that he realized something wasn't right. Micah wasn't holding his head up yet and his muscles were very weak. He wasn't as wiggly as most 2 month old. So this began our process, botulism??, myotonia??? Nobody was sure. Until we saw the neurologist. He was very comforting telling us he knew exactly, just by looking at Micah what was wrong. Myopathy, congenital myopathy not botulism. He was sure and at that he thought that Micah would eventually grow out of it. No further testing was need and even if we did further testing it may not give us any answers anyway. His physical development would be way behind but he would walk someday and run and do all the things that kids should be able to do.

So with that diagnosis we began to research and he never quite fit all the symptoms just a few and only in part. Next we began to get involved with physical therapy and occupational therapy with 2 different organizations and every week Micah seemed to be improving. We saw a pulmonologist, cardiologist, neurologist and the pediatrician. Everybody said that everything was great!! So we continued to do what we were doing and I also began to do massage therapy to help stimulate his muscles. The physical therapist and occupational therapist both, for weeks, told me that his breathing was different, not right. More like a teeter totter, paradoxical. I didn't listen to their concern. He also has a rattle in his throat and I asked the Dr. every time we went and it was never a problem always in his throat and never in his lungs. After awhile I began to ignore it. No big deal!! He had a brother that was always sick anyway from the kids at school.

One Friday my husband and I were talking about a wedding we were going to go to the next day. I hadn't had an excuse to dress up in a very long time and was excited and nervous at the same time. I had my hair done and new makeup and i had a new outfit to wear. Micah began to cough( he had always had a weak cough and couldn't clear very well) and cough. Suddenly I panicked because his face turned BLUE!! I tried to make sure he wasn't chocking and then he began to cry! WHEEEW, but his breathing was funny. We decided to take him to the emergency room right now. We dropped Joseph off at my in-laws house and went to the hospital.

They put him on a pulse oximeter and oxygen and he did okay for a while. they took 1 x-ray and noticed his heart and trachea were deviated to the right!!! That is not normal. He had a collapsed lung. The doctor and staff transferred us to the best place we could have gone, Santa Barbara Cottage Hospital. The doctor there pretty much knew what was going on before he even saw us I think. After one whole month in the PICU, machines to help him breathe, monitors constantly alarming, panicking and worrying all day, no sleep for 3 nights, a terminal diagnosis, wondering if I will even be able to hold him again, being told he cannot nurse any more and having a tube feed my baby, he almost died, watching chest compressions and bagging him, and not knowing why, we got to go home. He smiled at all the nurses and most of the doctors and they almost became my family. I knew every one in the PICU. Micah fit every symptom of his new diagnosis, weak mucles more in the legs than arms, not able to lift or hold head up, never reaches physical milestones such as rolling over , crawling, walking, difficulty swallowing, weak cough, sneeze, cry.

Now we are home. Everything is different. Joseph is a wreck because he has been passed around our family for 30 days and Mom was never there to take care of him. Micah has more equipment than I ever though a 6 month old could have. I am responsible for all of it. We have to take care of all of it!!!

Bi pap machine is used most of the time, he can be off 2 times a day for up to 4 hours each time. We usually do 3-4 in the morning and 2-3 in the evening. Or all the time if he is having difficulty. The machine has 2 filters, one cleaned monthly and one weekly. The mask needs to be cleaned every time we take it off, and the humidifier needs to be cleaned and replaced daily.

Suction: when ever it is needed, part of Micah's disease affects his ability to swallow and has to be watched closely because he could aspirate and cause more problems. The tip, tubes and canister need to be rinsed daily and disinfected weekly. The battery needs to be charged every couple of days.

Feeding: Micah had a feeding tube surgically placed in his abdomen and this is how he eats. during the surgery he also had part of his stomach wrapped around his esophagus so he cannot spit up and aspirate. Feedings are at 9am, 12noon, 3pm, and 6pm with a continuous feed throughout the night from 9pm to 7am. before each feed I must flush the tube and this is also how I give his meds am and pm, and after the feed I must flush the tube. Feeding bags are changed daily and rinsed between feeds.

CPT: Chest physiotherapy is done 2 to 4 times daily. There is an electric percussor and I have rubber manual percussor. I also work on positioning with Micah on his belly to loosen up the junk in his lungs and work it out.

Micah has a pulse-oximeter which I usually only use at night of if he falls asleep off his Bi pap.

We also have a nebulizer for breathing treatments, oxygen concentrator, and oxygen. We haven't had to use the oxygen yet, knock on wood. Bath time is getting hard we have no fancy things to help and Micah man is getting big, 23 lbs and 29 .5 inches, hard to lift in and out of a bath tub. He loves bath time he can move his legs a little bit and his arms well.

Micah is now an 8 month old happy baby. We are working on getting a medical grade stroller to accommodate all of his machines so we can do outings, but he laughs and smiles all the time. He talks with coos and grunts and he is learning to make choices with his eye movements. We still do physical therapy once a week to push his range of motion and work on new positions and strengthen what little muscle he has. Right now he does well off the Bi pap for about 3-4 hours but definitely needs the help. He does not lift or turn his head, move his legs or roll over, but he does move his feet and arms. He has lost a lot of strength in his swallow and tongue and lower jaw.

Micah loves to be outside, he loves his brother and running around the house to chase him. Yes we chase brother and play hide and seek with him. Micah laughs so hard. He is getting used to being held again and sitting up a little more often now. It is hard for him. but our life is getting more normal, what ever that is, and enjoyable. It has been very hard to learn to live to enjoy the day at hand and not be upset and wonder when Micah is going to die, but if we focus on here and now life is manageable with lots of prayer. Micah is an amazing child and we are so blessed to have him.

5 comments:

hestermom said...

Thank you for sharing... I am praying for you and I love you and your family.

Todd Weedon said...

Chelsea, you are a great mother. Most people would turn and run. I wish that we could be there for you guys. We will continue to pray for all of you. If there is anything that we can do, please let us know. We love all of you.

Anonymous said...

Hi Chelsea. I'm in awe of your story and your courage - it shines through. I have a 5 month old son myself and cant even imagine how I would be handling things if he had SMA. I know that I can never understand what you are going through, and that it might be nice to have a friend who does. Are you in contact with the Srtong family in Santa Barbara? Their little girl, Gwendolyn, also has SMA. A link to their blog with their contact info is below.
http://www.gwendolynstrong.com/

God bless you and your family.

Harrell said...

you are my hero! you are so strong, so full of hope, so grateful for the gift that Micah is, and you always give God the Glory! I have a lot to learn from you:) God is doing big things in your families life and I can't wait to see all that He will do with you and your 3 men. We love you

Rachel Tenpenny Crawford said...

Chelsea. I know it is a lot of work. And I know you worry. But you are doing a great job with Micah. You are making memories you will have forever. Keep it up. I am here for you. I promise, it will be ok, well never ok, but you know what I mean.

 
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