OT: Update on son

WOW Susan!! He is in my thoughts and also sending him POSITIVE vibes and prayers your way that he gets to feeling better soon. I was also hoping to hear good news about how he was doing today. You are doing great with him. Keep us posted on his progress and the tests. BIG HUGS~~ Deanne

Thanks Deanne. That means so much. Susan

Susan, I did not get a chance to post yesterday but I hope that he is doing better very soon. My heart goes out to you. It is tough when the littel guys are sick and there is nothing you can do. Hugs and get well wishes are coming your way. Keep us updated. Hugs, Melissa

Thanks Melissa!! Wish I had lots of positive news today, but don't. He's a bit better.....but with the weather change coming in this afternoon/evening, I'm expecting him to get worse again. I hope I'm wrong....but this has happened over and over again for the past 6 weeks. He starts to get well, the weather changes and BOOM, he's sick again. So, I'm watching him VERY closely. Susan

I'm so sorry to hear he's having a rough time. Both my boys have asthma (7 year old and 10 month old), so I'm used to the whole routine when one of them gets sick. Hang in there, and I hope he gets better real soon. I'll be thinking of you, your son and family! Jeannette

Hi Jeannette. I'm so sorry to hear both your sons have asthma. It's awful, isn't it? We've never had an episode last this long so I'm Hoping we are about to turn the corner onto Wellness Ave. Thanks for thinking of us! It means a lot! Susan

SUSAN, HOW FRUSTRATING AND PAINFUL TO HAVE TO SEE YOUR SON GOING THROUGH THIS DAY AFTER DAY. EXHAUSTING FOR BOTH OF YOU, AND STRESSFUL ON THE YOUNG MAN'S HEART. HOW OLD IS HE? I HAVE TO AGREE W/ YOU, IF HE'S NO BETTER BY WEDNESDAY I WOULD INSIST HE BE ADMITTED TO THE HOSP. SOMETIMES THAT'S THE ONLY RECOURSE WE HAVE. IN MY OPINION (for what it's worth, bupcuss) SOME TIMES THE ONLY THING THAT HELPS IS THE IV STEROIDS. AFTER VIEWING ALL OF HIS MEDS I CAN'T BELEIVE HE'S NOT BEING RELIEVED. POOR BABY. BETWEEN THE PREDNISONE, AN ORAL STEROID AND THE XOPENEX, AN INHALED STEROID HIS SYMPTOMS SHOULD, BY RIGHTS BE RELIEVED. HAVE THEY TESTED HIM FOR A FUNGAL INFECTION IN HIS LUNGS? THIS IS USUALLY DONE AS AN OUTPATIENT, DONE UNDER CONSCIOUS SEDATION, KNOWN AS A BRONCOSCOPY. THIS IS WHERE THEY TAKE A LIGHTED SCOPE AND GO INTO THE LUNG, LOOK AROUND AND SOME TIMES TAKE A SAMPLE OF TISSUE. HOPEFULLY THEY WON'T HAVE TO DO THIS. IF HE IS ADMITTED, THERE'S ALSO A NEB TREATMENT CALLED A "HEART INHALATION TX", AT LEAST THAT'S WHAT THEY CALL IT IN MY HOSP. IT LASTS FOR ABOUT AN HOUR AND THEY CLOSELY MONITOR THE PT'S. HEART RATE AS THIS TX. CAN, AND USUALLY DOES INCREASE THE HEART RATE GREATLY. I DON'T REMEMBER IF YOU MENTIONED IT OR NOT BUT DO YOU HAVE A WARM MIST HUMIDIFIER IN HIS ROOM? ALOT OF ASTHMATICS SWERE BY THEM. IT HELPS MOISTERIZE AND LIQUIFY THE AIR PASSAGES. MY FAMILY AND I WILL CONTINUE TO PRAY FOR A RECOVERY TO NORMAL HEALTH FOR THE LITTLE MAN. THAT HE DOESN'T HAVE TO STRUGGLE FOR EACH AND EVERY BREATH. AND DON'T FORGET, TAKE A FEW MINUTES FOR SUSAN. IF YOU CONTINUE AT THE PACE YOU'RE GOING, YOU'RE GOING TO BECOME RUN DOWN AND END UP SICK. WHICH WILL BE NO HELP TO YOU SON AND THE REST OF YOUR FAMILY. EVEN IF YOU JUST TAKE 20 MIN SOAKING IN A HOT BUBBLE BATH. INSTEAD OF YOU COOKING HOW ABOUT YOUR HUSBAND COOKING OR GET TAKE OUT, USE PAPER PLATES AND PLASTIC KNIVES, FORKS AND SPOONS, NO HASSLE AND EASY CLEAN UP. MAY OUR HEAVENLY FATHER LAY HIS HEALING HANDS ON YOUR SON, RELEAVE THE PRESSURE FROM HIS LUNGS AND INABLE HIM TO BREATH EASY AND STRESS FREE. PLEASE KEEP US UP DATED. DONNA, SFY

Hi Donna... Time to get technical. Yes, he's had the hour long treatments before. Back in January in fact. Helped greatly. He was only in the hospital for 24 hours then....and IMHO sent home too early because he was sick again in 48 hours. But, I'm just the Mom.... UGH..... I agree, he's on so much and has been for so long that he should be doing fine by now. The bad thing is that the treatments really aren't helping him. He gets very little relief from them. The pulmo doesn't like doing the treatments more often than every 4 hours - so stepping up the treatments really isn't an option either as I won't be able to get more meds. They have not even considered the broncoscopy yet. They've tested him for microplasma pneumonia and now flu A & B. They've also done a sinus CT - a sinus infection is his usual trigger. And, they've treated him with 4 rounds of Zithromax. I am keeping an eye on his heart rate here at home as well as his respiratory rates - and also how deeply he's breathing - most of the time its pretty shallow. When we go to the doc, his 02 sats are 97-98%...so doing okay there, thank goodness. We use humidifiers like crazy around here...plus I take him into our small bathroom and run the shower on hot and fill the room with steam to help open him up too. So far, it's not really helped. I've tried everything I've ever heard of to help and so far nothing really has. All that to say, he's actually sounding better....sort of. But, then again, he may be so tight that he's beyond wheezing today. He says his chest is really tight, but there is no wheeze and no congestion moving around in there like there has been. He's still coughing and his breathing is a shallow - but not too fast. He says it hurts to breathe too deep. So, I am continuing to watch him closely, doing the treatments, giving the vitamins, steaming and feeding this boy. Oh...he's 13. We've been dealing with this his entire life. Thanks for asking about him and sharing your info/expertise. Sometimes it helps to have someone else think about what's going on. Thanks also for your prayers. Those will do more than anything the pulmo can do! Susan

SUSAN, I'M OFF TODAY SO YOUR SON HAS CONSTANTLY BEEN IN MY THOUGHTS. I'VE BEEN RACKING MY BRAIN, BOTH AS A NURSE AND A LIFE LONG ASTHMATIC ON WHAT OTHER TRIGGERS COULD BE AFFECTING YOUR SON. YOU SAID THIS HAS BEEN AN ONGOING THING SINCE THE NEW YEAR. IS THERE ANYTHING NEW IN THE HOUSE SINCE THEN? NEW FLOORS, RUGS, FURNITURE. MAYBE NEW PILLOWS ON HIS BED. A NEW PET? NEW PLANTS? THERE'S A REALLY PRETTY HOUSE PLANT(IN YOUR NECK OF THE WOODS IT CAN BE PLANTED OUTSIDE) CALLED A "CROTON", THIS SOMETIMES CAN CAUSE SEVERE EXACERBATION OF ASTHMA. HAVE YOU CHANGED YOUR WASHING POWDER OR BODY SOAP? FOR HIS ASTHMA TO CONSTANTLY FLARE UP FOR THIS LONG THERE'S A TRIGGER IN OR AROUND YOUR HOUSE THAT'S CAUSING THESE FLARE UPS. NOW, DON'T GET MAD AT ME, I'M NOT PLACING ANY BLAME ON ANYONE, JUST TRYING TO HELP IN ANYWAY I CAN, EVEN IF IT IS JUST WITH SUGGESTIONS. THE POOR BABY, MY HEART GOES OUT TO HIM. AS I SAID EARLIER, HIS COMPLAINING OF HIS CHEST HURTING BOTHERS ME. IT TRUELY IS AMAZING THAT W/ HIS BREATHING SO BAD THAT HIS O2 SATS ARE SO GOOD. THANK GOD FOR SMALL MIRACLES. WHEN YOU SAY HE'S NOT WHEEZING IS PROBABLELY DUE TO HIM BEING SO TIGHT AND NOT BEING ABLE TO MOVE THAT MUCH AIR, ESPECIALLY SINCE HIS BREATHING IS SO SHALLOW. HERE'S ONE SUGGESTION YOU MIGHT TRY. IT MAY NOT MAKE HIM BREATH EASIER BUT IT MAY, AND USUALLY DOES HELP BREAK UP THE CONGESTION AND ALSO RELEAVES THE PAIN IN HIS BACK THAT HE'S PROBABLEY EXPERIENCEING AND NOT TELLING YOU ABOUT. THE PAIN IS FROM BEING HUNCHED OVER TRYING TO GET MORE AIR IN AND ALSO KEEPING THE BACK SO STIFF. IT'S CALLED PERCUSSION. YOU CAN DO IT W/ EITHER ONE OR BOTH HANDS. 1) HAVE HIM SIT AT THE KITCHEN OR DINNING ROOM TABLE, LEANING OVER, RESTING ON THE TABLE. 2) CUP YOUR HANDS AND PAT ON HIS BACK AS HARD AS HE CAN STAND IT, PAT AS IF YOU'RE PLAYING THE BONGOS. 3) GO UP AND DOWN HIS BACK IN THE AREA OF HIS LUNGS. FROM THE BASE OF HIS SHOULDER BLADES TO JUST ABOVE HIS WAIST. DO THIS FOR AS LONG AND BOTH OF YOU CAN STAND IT. IT REALLY FEELS GOOD TO THE PATIENT AND HELPS LOOSEN UP THE CONGESTION. PLEASE, PLEASE KEEP ME AND ALL OF US UPDATED ON HIS PROGRESS. MAKE NO MISTAKE, I WILL KEEP ALL OF YOU, ESPECIALLY YOUR SON IN MY THOUGHTS AND PRAYERS. KEEP UP YOUR FAITH AND STRENGTH. DONNA, SFY

Hey Donna! As a Mom of a chronic persistent asthmatic I learned LONG ago to not bring anything new into the house. We have used the same detergents, soaps, shampoos, etc for most of his life. Same thing with the house...no new carpets, I only have 3 plants and have had them all for YEARS. Nothing new in his room....no changes. The ONLY thing that is continually changing is the weather. Every time it changes, he gets worse. The docs all think it is the extremes in heat and cold that are doing this to him. Every time he gets a little better we have another extreme change and BOOM! He's sick again. As for the percussions....I was taught by the respiratory therapist at the children's hospital to do those back when Matthew was 5. BTDT, got the t-shirt. But, thanks for thinking about different things we can do to help him. Now, for the latest update. He does not have flu. They finally called me at 2:00 today to give me the results and to find out how he's doing. They were NOT pleased with my report today. We discussed it at length and finally came to this decision. IF he is the same or gets worse tonight, he will be admitted tomorrow. He has an appt tomorrow at 1:00. Thanks for the thoughts, prayers, and suggestions. I appreciate it!! Susan