We hope you all had a good winter and are looking forward to a very healthy summer.
Since the last newsletter I have made a list of things I think may be helpful to MM parents. Some of the information is being repeated but it is information that is very important and we have some new kids that we have located in the last 2 months.
1. If you are interested in using a passy valve information is enclosed. When using this valve for the 1st time, it may help to put your child on his side lying down to start. It usually takes some time for the child to get comfortable with the passy. The telephone for the Passy is 800-634-5397 if you need more information.
2. XXXX has been wearing a trach cap for 4-8 hours a day for about 10 months now and these are made by the Shiley Trach company. Their telephone number is 800-854-4071. I do not have any information on this trach cap but it looks like a passy but is completely closed so all the breathing is done through to nose and mouth. XXXX have found that XXXX's lungs are not as dry when he wears his trach cap as they are when he wears the passy all day.
3. Saline treatments when lungs are dry really seems to help. We also keep 2 vials of saline on top of the concha humidifier to keep it warm so we don't put cold saline in his lungs and make him wheeze.
4. It is very important that you new parents have your child registered with Muscular Dystrophy because when (not if) there is gene therapy that can be done for this disorder they will probably be the people doing it.
5. Exceptional Parent magazine it a great magazine for parents of handicapped children. If you do not already receive this magazine you might want to call for one free copy. The phone number is 800-247-8080. We found some of the children through Exceptional Parent magazine and through our Resource Group being listed in NORD magazine.
6. About 2 years ago we purchased a wireless door bell and but the chime in our bedroom and the push-button by XXXX. When XXXX has a choking spell or the nurse needs extra hands in a hurry for any reason all she has to do is hit the bell and I am there in 5 seconds.
7. Any of you parents who have older, more stable children and are still using a nursing agency may be interested in saving money on your private insurance by contracting the nurses directly and submitting the bill to your insurance company. Most insurance companies will not do this but a few will. We have been doing this for over 3 years now and have saved thousands of dollars. You have to be prepared to cover any canceled shift yourself since you will be the "on call" nurse. Let us know if you need information about this.
8. We have also saved lots of money by having part of our circuit disposable and cleaning the more expensive parts. We got the vent circuit manufacturer to make up a special package of tubing that has the corrugated tubing, water trap, patient pressure tubing, and exhalation tubing. We change this every other day and clean all the expensive parts such as exhalation valve, peep valve, etc. We clean vent circuit parts only 2 days a week and this has saved time and money.
9. I custom make trach ties using the packaged ties. The Dale velcro trach ties are too wide for the neck so I sew the edges and trim the ties to be more narrow and cut them down to the proper size. Then I sew the other velcro tab to the end of the new ties. For Halloween one year he was a Jack-o-Lantern and I dyed the ties orange ..very strange looking!
10. For all the new parents....the best information I can pass on is the lesson we learned the hard way. When your child is sick and lungs get tight the best thing you can do is to sit your child up for several minutes. This extra lung expansion seems to help very much with higher O2 sats and much better breath sounds. If you can give a treatment while sitting up this is even better. If your child's lungs are so tight that you have trouble getting the neb treatment medication to go in than you can also ambu bag a treatment in. It is complicated to set up the first time so is you are interested try to set it up ahead of time and call me if you can't figure it out. You need a circuit part that allows neb cut on one side and ambu on the other and they both go to a swivel that connects to the trach. You can also have the O2 in line with this also.
11. For those children who are strong enough to cough and you do not already use TB syringes to suction you may want to try this. Just cut the top 1/2" off a 1cc TB syringe (the part that has the wings, not the tapered tip) and clean with Control III or whatever cleaner you use. Stick this cut off end into the suction tubing where you usually put the catheter and use this to suction the trach. To keep clean you can put one of the unfolded boxes from the sx catheter between the collection bottle and the motor of the portable suction machine and stick the TB in there at the end. We use these TBs to suction John's trach all day and we use a different one if he has thick secretions in the back of him mouth. Be sure to use a different one for trach and mouth.
12. If anyone needs a stander and doesn't wand to spend $1000.00 on the XXXX stander we will be happy to send you plans to build one. A man in our area made one for us and Gary copied that one so that we could have one for school and for home. I made the padding for it and used dinosaur material so ours is MUCH better than the $1000.00 XXXX stander.
13. If there are any kids that have allergies such as the spring and fall pollen type, you may want to try Intal treatments. We started these about a year ago and they seem to help.
14. If anyone is having trouble with red G-buttons you may want to try putting Caldesene powder on the area before you put the dressing on. This helps keep the area dry and protected.
15. For new parents.....use Celluvisc eye drops Q2 in eyes during the day and Refresh PM in your child's eyes at night. The MM children do not blink enough in the daytime and do not close their eyes all the way at night. This dries out their eyes and can cause damage....it is like looking through a cracked windshield when the eyes dry out.
16. One of the children recently had problems with his G tube floating into his intestines where it ruptured his intestines. He almost died and is still in the hospital for a long stay so be sure to mark the G-tube and make sure it does not drift into the intestines.
17. I am sending a copy of "POTENTIAL RESOURCES FOR CHILDREN WITH MEDICAL DISABILITIES". Some of these are for Texas but your state should have a similar program. It is very important to get as much help as you can even if you have private insurance because most insurance companies have a lifetime cap and medical costs are getting higher each year. Sorry, my only copy of this was copied wrong and is cut off.
18. Most of the "managed care" programs have a pediatrician as the primary physician and some of the children do not have a pulmonary doctor. If you do not have one you may want to get one. The worst problems these children have are respiratory infections and most pediatricians are not aggressive enough for these severe problems.
19. Deleted for the internet.
20. For those parents who have a child who goes to school and needs a nurse to go to school with him, you may want to check into the STARS or the SHARS programs to see if these programs will pay for the nurse during school if you are using your private insurance for these hours. If your child is in school and your child uses sign language you can usually get the school district to pay some of the cost of a sign language interpreter. This is usually only $ 7 or $ 8 but it may help on the lifetime max on your insurance.
21. XXXX has been doing Hippotherapy since he was 18 months old and it has really helped with head control, trunk control, etc. and it is FUN. You may want to check with any horse people in your area to see if there is a program near you.
22. New parents ...... I am enclosing a copy of VZIG literature. This shot will either keep your child from getting chicken pox if exposed or make it a very light case. Two MM children have died from secondary infections from chicken pox so until the vaccine is available you will probably need to talk to your doctor about your child having the VZIG shot if he is exposed to chicken pox. Plan ahead because the VZIG is usually not available except at major hospitals.
We are constantly looking for more information for our newsletters. Please send us information about your child and any other info that can be passed on.
We have gotten about 25 requests from different hospitals, etc. since our Resource Group was listed in the Exceptional Parent Magazine and NORD Magazine. We have sent out information in hopes that new parents will have more current information than we found when our son was born........which was a big fat 0.