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Wednesday, September 26, 2012

Jack and the eye Dr.

I took Elizabeth to Dr. Frizzell this morning for her bad cough. He says it's bronchitis. I've been expecting her to cough up a lung soon. That makes 2 kiddos on antibiotics.

Jack is still fighting his bronchitis. I think he caught it from Elizabeth. He is getting mutiple vest treatments a day and lots of suctioning to clear the secretions he is coughing up. He is also sleeping a lot, and tiring out quickly after an activity. He had opthmology apt. today. We've had the apt. for at least 3 months because it takes that long to get in for an apt. I know Jack is sick and really didn't feel like going. He had not had his eyes checked in a year. I felt like we had to keep this apt. for his eye health. Dr. Hoehn says Jack has a stigmatism and needs glasses. She says we can try the glasses to see if Jack will tolerate having them on his face or not. She says right now things are a little blurry for him. I hope he will like them. I'll keep you posted on what he does with them.

Tuesday, September 25, 2012

An Ideal Day

It's Mito Week and I've been thinking. I don't think I've ever shared Jackson's ideal schedule with you. I say ideal because everybody knows that the day never turns out exactly how you plan it to be but you try anyway. Everybody also knows it takes alot to take care of Jack the right way but I don't anyone really knows the details. So in honor of Jackson and in order to make clear the day to day of taking care of a child with mito, I have decided to share as many details of his care as I can remember this morning.

Jackson's Ideal Daily  Schedule
7am Jack starts his day! Jackson is changed into a dry diaper first thing. Jackson is fed and gets his morning meds every morning at 7am. Jackson is fed by gtube every three hours throughout the day. Each feeding is 100ml of a formula called Nutren 1.0 w/fiber followed by  150ml of water. Jackson has a feeding tube (gtube) because his muscles in his esophagus are too weak due to Leigh's (mito) to coordinate a swallow. He will aspirate while trying to swallow. Aspiration is when food goes into the lungs. This could lead to pneumonia. The Leigh's has caused lesions (cell death) in the area of his brain that controls muscle movement. Jackson also takes his morning meds for energy, seizures, and GERD with his breakfast. His morning meds are Zonisamide 100mg, Clonazepam .5mg, folic acid 5mg, Keppra 6ml, Zyrtec 2.5ml, Pyridoxal 5-Phosphate (B6) 50mg, Co-Q 10 1.5ml, L-Carnitine 7.5ml, Ribflavin, omprezole 10ml. When he is sick he gets Mucinex 5ml to thin the mucus. 

8am Jackson does not have any self help skills at all. He can not lift his arms to help put clothes on or off or wiggle in hands in any way to help his self at all. He is completely dependent on adults for everything including hygeine. I wash face, take care of his dry lips with Beauty Control lipcare, brush his teeth, brush his hair, and dress him. At this time I will suction out his nose and mouth for secretions. He does not like his nose to be suctioned at all.

9am I give Jackson his Qvar inhaler and ProAir inhaler. He takes 10 breaths of two separate puffs from a spacer/chamber.  A spacer has a little mask at one end of a chamber that fits over Jack's mouth and nose so he has to breath the medicine that was puffed  the chamber. The other end of the chamber has a place to put the inhaler.  After the puffs, Jackson has Chest PT. He has a machine by Hill-Rom. It is called an Airway clearance system. He wears a vest similar to a life vest that inflates with air and vibrates. He has treatment lasting 25minutes. Its' purpose is to vibrate out the mucus in his lungs so that his lungs stay healthy. Jack has this treatment twice a day. When he is sick he has it more frequently.  

On Tuesdays and Thursdays at 9am Jackson has school. His schedule changes some on these days.  He is a homebound Kindergartener with Shelby County Schools. His teacher Sara comes to the home. She gets Jackson to smile and engaged by playing music, singing, and reading books to him. She also works with him with his switch. We are thinking of moving his time to the afternoon so we don't run into the sleepiness of side effects. 

9:30am Jackson gets 4ml of Reglan through his gtube.  Jackson's stomach doesn't empty as quickly as it should.  It empties slowly because of mito. The mitochondria in his G.I. system don't make enough energy to run at a normal pace and the damage in his brain slow the muscles too. Reglan is given to stimulate gastric emptying. 

10am Jackson is fed his "morning snack". It is 100ml of a formula called Nutren 1.0 w/fiber followed by 150ml of water. By this time Jack is worn out and the sleepy side effects of the seizure meds are kicking in. Sometimes he will want to get a nap. 

11am Jackson hopefully will nap. If he doesn't want a nap he will rest in his bed while watching his favorite movie Cars. We might also read a book, listen to music and dance or play with toys. 

12pm Hopefully, by noon, Jackson is getting a nap. Jackson's nurse arrives and helps with his care until 8pm.

12:30pm 4ml of Reglan given  even though he is sleeping. We have to be sneaky and not wake him up. 

1pm Jackson is fed 100ml of a formula called Nutren 1.0 w/fiber followed by 150ml of water. Again we have to be sneaky!

2pm Jackson is usually waking up by 2. He is usually very happy after he is fully awake. He feels rested and ready for the rest of his day. Jackson gets his AFO's on, is lifted and strapped into his stander.  AFO stands for Ankle, Foot Orthodics. They are plastic braces to support him in a standing position. A stander is a piece of durable medical equipment that is essential to Jackson's health. It allows him to be in a standing position. I'll have to post a pic because the equipment is hard to describe.  This is good for his organs especially his lungs. It is also good for his bones to bear weight.  He has built up enough strength to tolerate 45min in the stander. He likes to watch cartoon, read books, play with toys while he is in his stander. 

2:30pm On Wednesdays, Jackson has PT from the school. This session lasts about 30min. This usually will make him very tired. He will want to rest. 

3pm Jackson has another vest treatment for 25 minutes. We do his vest treatments while he is sitting up supported by pillows in his hospital bed. We can't do the treatments in his wheelchair because the vest inflates too large for him to fit. I or Jackson's nurse stays with him the entire time. He is suctioned of and on throughout the Chest PT therapy. 

3:30pm Jackson is given 4ml of Reglan again.

4pm Jackson is fed 100ml of a formula called Nutren 1.0 w/fiber followed by 150 water. 

5pm Jackson also starts his bowel care at this time. This is a subject that may gross some of you out or fascinate you either way it is a part of Jackson's daily care and that is what I'm talking about today. B.M's are something everyone takes for granted until you can't have one. They are extremely important! Jackson must have one everyday. I think it is important for his muscles to get used everyday. I am scared if he doesn't have one everyday his muscles may become to weak or "forget" what to do.  If you don't use it, you loose it. If Jackson is unable to have a B.M. we will have to go to the hospital. B.M.'s  can be a long process for him. Jackson never has a bowel movement on his own unless he is on antibiotics. When he is on antibiotics he has more frequent, unpredictable and large B.M.'s  They really hurt his tummy. I give him some probiotics to help. Having a B.M. has been a problem for Jackson since birth. Jackson is given rectally 2 pedia-lax liquid enemas to stimulate a bowel movement. Jack lays in his bed with at least 4 pads underneath him during his B.M. We give them after his feeding in hopes that his brain will get and send the message that something goes in the tummy means  something needs to go out. 

6pm Jackson gets a bath. He is washed head to toe. Sometimes he likes it sometimes he doesn't. We use a large shower chair that lays out and a shower wand to wash Jackson's body. This is the safest way to give him a bath. He is lifted in and out of the shower chair.

6:30 Jackson is given 4ml of Reglan again after he is dried off and dressed. His hair is combed and his gtube site is dressed. We use 2x2 surgical sponge to dress his site. It is secured with Medipore tape. Jackson is allergic to the cheap paper tape. The 2x2 surgical sponge absorbs any leakage that may irritate the site. His site is checked at each diaper change for leakage or wetness. If wetness is found, the dressing must be changed. Wetness will cause skin irritation. Jackson has been blessed to not have any skin issues associated with his tube. I know there are a lot of kids that have complications. 

7pm Jackson is fed is 100ml of a formula called Nutren 1.0 w/fiber followed  by  150ml of water. By this time of the day, Jackson is wore out and needs to rest in his bed. He usually watches his favorite movie Cars again!

8pm Jackson is resting or asleep.

9pm Jackson is resting or asleep. If he is awake when I get ready to get in my bed Jackson gets in my bed with me. I move the O2 sat machine and O2 tubes in my room. It makes it easier to take care of him if he drops his SATS and the alarm goes off. He whimpers when he wants to be turned in the night. 

10pm Jackson is fed is 100ml of a formula called Nutren 1.0 w/fiber followed by 150ml of water. 

Jack does not like to be left alone ever. If he even thinks he is alone he will have a fit. Someone must be in his sight at all times or if you go out of sight you must talk to him. Jackson's diaper is changed frequently through out the day because he can not control his bladder or bowels. It is changed at least 8 times a day for voids. At this time he is checked for skin breakdown that can occur with kids like Jack. We use A&D ointment (not the zinc oxide) to protect his skin from wetness. His position his changed often through out the day. His position must be changed every two hours. He should not be in one position (like sitting in his wheelchair) for more than two hours. His mouth and throat are suctioned to remove mucus when he coughs when he is sick. He does not like this at all. Try to imagine the suction wand at the dentist office in your throat. It is not pleasant. We try to make it quick. You also have to be careful when you do suction Jackson's mouth and throat. You can't suction right after he eats because he will vomit. If you don't do it right you can and will gag him. Guess what happens ....if you guessed vomit you guessed right. Then you have a clean up project. Jackson is blessed not to be a mito kid that vomits. I know a lot of mito kids that do. So, I try to be as quick and gentle as I can for his comfort. 
This is just an ideal day. This is just an example of how his day should go when it is not complicated by doctor appointments, diarrhea, leaking diapers, illness or pain. He is on oxygen every minute of the day for support if he drops his SATS (oxygen saturation levels). He drops his SATS sometimes when he has a seizures. He especially does this while sleeping. He also has to have his sheets changed weekly, medicine givers washed daily, suction machine cleaned daily, enteral feeding extension changed weekly, enteral feeding syringe changed weekly, oxygen tubing and suction tubing changed biweekly. I am sure I have left something out. So now you know what I do all day.  Some people that meet us say, "How do you do it?" I think the more important question is "How can I not take care of him?" You don't have a choice when God gives you a gift like Jackson. 

Friday, September 21, 2012

The results are in!

I am excited to say that Chick-Fil-a is donating $136.62 to the UMDF! Thank you all soooo very much for supporting the UMDF!

Also, the results on our second tab collection are in too! I am happy to announce that we recycled 53lbs. of pop tops and 94lbs. of cans for total of $77.00.

Chase community giving campaign is donating $10,000 to the UMDF. Thanks to everyone that voted.

It has been an exciting Mito week! Thank you, thank you,.thank you!

Monday, September 17, 2012

Ready or not

Ready or Not...It's Mito Week!

We will kick off this week with a Mito Spirit Night at Chick-Fil-A tonight Monday September 17, 2012 from 5-8 at the Millington location. I hope you all can come and say hi. Jack will be there at 5 but will probably go home early.

I will be selling green light bulbs at Chick-Fil-A tonight! Turn your front porch green for Mito! When
your neighbors ask "Why is your front porch light green?" You can say "Well, there's this little boy Jackson and he has Mitochondrial Disease." Neighbor says "Mito What?" Then you can tell about Jack and Mito or direct them the UMDF website for more info.  It would be great if take a picture of your front porch green and post it to facebook or send it to me Awareness is a piece to  puzzle of finding a cure!