It's been a rough couple of weeks for my poor little William! He really just can't catch a break. After our long summer of 7 hospitalizations and 5 surgeries, we thought we would all catch a break. Especially hoped that for Willie. Unfortunately on Halloween William started having trouble breathing and our Asthma Plan medications of flo-vent and as needed albuteral were not helping William and he was wheezing terribly and working really hard to breath. He is on oxygen at 0.2 LPM and I have a pulse oximiter which measures the oxygen levels in his body and an apnea monitor that monitors his breathing and heart rate here at home. These monitors are great because I can do almost everything the hospital can do for William here at home except for deep suctioning! So when he started having troubles breathing on Sunday morning, it was after we had cooked some bacon for breakfast and the house got kindof smokey and the smell was very strong (yummy, but too overbearing for Willie I'm quite sure). So I took William outside to get some fresh air and he was ok for a little while and then he started wheezing so badly. So I hooked him up to all his monitors to see where he was at and took a set of vitals. His chest sounded so tight, and he was barely moving any air. He was well hydrated. He had a fever of 38.0. He had been experiencing diarrhea since 10-11-10. His heart rate was a little high and he was only taking like 15 good breaths per minute at that point and usually does 25 to 30. And his oxygen levels had decreased to 82 and it's best to be 90%-100% oxygenated. I was able to go up on his O2 LPM from 0.2 to 0.5. and got his O2 levels back in the 90's. BUT as each 15 minutes would pass, his O2 levels would drop and I kept going up on the O2 flow UNTIL I had reached the max flow that I have at home which is 1 LPM. My travel tank concentrator goes up to 2 LPM and after I had him on a full liter of oxygen it was time to take him to the ED. I tried to get my husband to call 911, but he said NO, just hurry up! So I hooked William up to his travel O2 tank and put him at 2 LPM, and I took the pulse oximeter along. So away we went at 90MPH down I-10. William's O2 levels were in the 90's all the way to the hospital, and as soon as we stopped in front of the ED his levels started dropping and by the time I ran into the ED with him he was 50% oxygenated and was very very blue and lifeless and I ran in yelling to see a doctor and the staff directed us right back to a room and a crowd of several doctors, residents and nurses immediately start their amazing life saving skills. Since William has a very long medical history, I carry a 4 page printout that I created to hand off to the medical staff when we arrive and I also read off his medical history as they are assessing him so they are aware of the giant cysterna magna fluid filled space on his brain, his cleft pallet, his G-Tube feed needs, his pulmonary Hypertension and that it is caused from an ASD that he has, his fused cystic kidneys, his hypospadious and that he is a difficult cath. Also that he is a hard stick and I only let IV team poke him and if nobody is available from the IV team I make them find someone that has worked NICU or IV team to perform the stick for needed labs. And after we all got William stabilized with a prednisone burst, aggressive respiratory treatments with deep suctioning and a very high flow of oxygen at 8 LPM he was admitted. He recovered very well, and we were discharged on 11-2-10 just in time for his 1st birthday on the 3rd!. We had to continue the prednisone burst for 7 days. He has been doing really well. We have had quite a few clinic follow ups, and that means the more outings we go on or whenever we have numerous clinic follow ups, he is at risk to being exposed to lethal germs that his body has a very hard time fighting off. So I dread follow ups, why can't they just do house calls!! haha. After facing and conquering most of William's medical issues I decided that it was best to keep William in his home environment and to limit our car outings to follow ups ONLY to keep him healthy. He does not have much reserve, and he has spent so much time in the hospital, had so many surgeries that his poor body is really needing to build up some reserve especially for this winter's RSV/FLU season. We only have limited visitors and if anyone is sick I ask that they don't come over. We do not take him out in crowds, or supermarkets. No taking him out for a nice meal at a restaurant, no visiting grandmas. Although my Isabell goes to school and is exposed to school germs we try our best to keep our safe home environment germ free. When she arrives home from school, she has to get undressed and take a bath before she roams the house or even thinks about going near baby bubba. After all the hard work of keeping him at home, it seems that his asthma is going to give us hell. And his weak diaphragm doesn't help with his asthmatic issues. Now after cooking something that is smelly, or if there is pollens in the air he starts wheezing. After our weather change from hot to cold here in Phoenix, it also seems that the weather change has a slight effect on his little body as he has a runny nose as of yesterday 11-11-10. He had a rough night overnight. I woke up this morning and put in a call to his pulmonologist Dr. Drewek to explain that he was wheezing terribly again and I was quite concerned. Her and I came up with a plan. She called in a Prednisone steroid burst script to Walgreens and when his oxygen levels started decreasing a few hours ago I was able to start the burst. I am so thankful that my mom and Aunt Tommie were here today. They were such a great help, especially with Isabell. I also loved that my Aunt did all of our laundry and cleaned my kitchen! What a help! I was starting to get overwhelmed with the house duties because laundry was piling up, and I had destroyed the kitchen! I was also able to run a few errands by myself and that was nice. I don't get out much. Caring for my fragile baby bubba is an all day all night job and requires ALOT of dedication. And when he has asthma troubles, my job becomes way more intense. He gets medications several times a day at certain times, and is tube fed. But there is no question, I have dedicated myself totally and completely to my daughter and my son. They are both special needs, but William was faced with the medical issues and Isabell has been pretty healthy. Some say this is my calling in life, and I couldn't agree more. I have a vision that William will build up his reserve in a few years, and will be running and playing with friends and you'd never know the hardships he faced. I really see that in our future. Until then, I am keeping him as stable as I can and doing everything possible to keep him that way. Got the HEPA filter running, and a steady stock of hand sanitizer and clorox wipes. SO a little favor to ask of everyone, please keep William and our family in your thoughts and send us lots of Stay Well wishes because we all need it!
XoXo
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