Wednesday, July 21, 2010
Today was chaotic but in a good way, the way that I am used to. Michael is home now after a 5 week admission. Today consisted of 9 breathing treatments, 2 g tube hookups, 1 central line hookup, countless medications, a dressing change and the weekly wiping of door knobs, mattresses and light switches. That's on top of meals, snacks, diaper changes, refereeing sibling spats, baths and everything else kid related. Plus, I managed to get a load of dishes and a load of laundry done and supper cooked. I'm exhausted just typing that but it isn't as bad as it sounds. Matthew went to clinic yesterday and has gone from being completely off the growth charts to now in the 20th percentile for height and weight. He is also now big enough for a vest. I am excited since that will make my life so much easier. I am just happy to have all my kids back together again. I will take the chaos of a house full of children over quiet and boring any day. This is my life and while it may be hectic and crazy at times, it is also rich and blessed.
Monday, July 19, 2010
Everyone has been talking about love deeds lately and it has gotten me to thinking. I have been trying to do my part to be kind and helpful to strangers but sometimes it is easy to forget to be that way to the ones you love. It is easy to take them for granted and stay angry at them for some hurt in the past. When I thought about that, I thought of my husband. I don't know how I would do all that I do without his support. So I want to salute my husband. To the man that goes to work every day to provide for us so I can stay home and take care of the children's medical needs, to the man that listens to me gripe and moan on a daily basis about how much I hate cf, how bad the kids were that day, and how much cleaning I had to do and still wants to come home every evening. To the man that takes over after a hard days work so I can get a break. To the man that has gone through 3 diagnoses with me, numerous hospitalizations, clinic visits, night time feedings and hook ups, home iv courses, countless breathing treatments, ER visits, surgeries, and many many late nights. To the man that has been there through it all and has never left our side, I salute you. Thank you for being on my team in this daily battle against cf. I couldn't have picked a better team mate.
Monday, July 12, 2010
Ok today I am just angry!! I am angry that my children have cystic fibrosis. I am angry that they have to do vests, and nebulizers, and take so many damn medications. I am angry at the insurance company that says they won't pay for their enzymes unless they are on a generic form when there is no generic form! I am angry that my 6 year old son has to lay in a hospital bed for 5 weeks instead of enjoying his summer like a "normal" 6 year old boy. I am angry that they had to cut into my 11 month old to put a feeding tube in and that I had to say it was alright to do it. I am angry that I have to watch my son cough until he's blue and needs oxygen. I am angry that cf steals so many young lives that have SO much potential. I am angry that it is stealing my children's lives one breath at a time and there's not a damn thing I can do about it. I am angry that I feel so helpless all the time. I am angry today at cf and what it does to my children.
Tuesday, July 6, 2010
So happy today! The kids are gaining weight. Abby is up to 61.6, Michael is up to 35.8 and Matthew is 18.4 pounds. At this rate, I will have to buy everyone new pants! I am glad that Abby comes home tomorrow. It has been kind of boring and quiet around here. I am so used to the chaos of three. I have gotten into the routine of hooking up Matthew's tube up at night. We are using 24 calorie an ounce formula and can't buy it, so I have to mix it at home. I am still trying to work out the recipe because the one they gave me is for ounces but the bags use milliliters. Math is not my strongest subject. I will be so glad when Michael comes home. I will have all my kids together under one roof for the first time in over a month. It is always hard being separated from them. I am so thankful that at the end of all of this is a trip to the beach. We will have time to spend together, as a family. After the past few weeks, I think it is just what the doctor ordered!
Sunday, July 4, 2010
Phew, I am glad Matthew is finally asleep! This separation anxiety he is going through is killing me. If I even think about leaving the room, he has a meltdown. I feel so bad for him, but I have such a small window to get housework done between treatments, medicines, meals, baths, dressing changes, and g-tube hook ups. Some days I feel like I am running in circles between all three kids and never stopping to give any of them my full attention. Then the mommy guilt settles in and I vow to do better the next day. It is hard being nurse, respiratory therapist, housekeeper, wife and mommy to 3 all at the same time! I talked to the pediatrician about Matthew's separation anxiety and tried the things she suggested. Things were getting better for awhile and then he went into the hospital and now it's worse than ever before. I'll just keep telling myself that it means I am doing a good job since he looks to me for comfort. Hopefully, I can get him out of this phase before Abby and Michael come home. I am so thankful that they are staggering their discharge dates, so I can ease back into things. Abby comes home on Wednesday. I am glad, but at the same time, that leaves Michael in the hospital alone during the day. I hate that I can't be with him, but I have to be here for the other two. I am constantly pulled in so many different directions. I am not complaining though, I am truly blessed to have such amazing children. I just wish there were more of me to go around. I really need to clone myself!!
Friday, July 2, 2010
Matthew came home yesterday! It is so nice to have him here with me. Michael and Abby did their pfts yesterday and both of their numbers were up. I have been so scared for Michael for the past two weeks. His numbers were right around 43 for a long time. When he was admitted they were 21 %. We were told when they dropped to 30 and stayed there, he would go on the transplant list. Yesterday, his numbers were in the 50s!! That is the second best he's ever done. It eased some of the worry that I have been feeling, although as a parent the worry never disappears. Abby's numbers were back up in the 80s where she normally is if she is not sick. I am so happy that they are both doing much better. Matthew is doing well with his g-tube. It was such a major decision to have him get one but now that it's over I am glad that we did. He has already started gaining 300 grams a day, instead of the 8 grams a day he was gaining prior to the tube being placed. He is such a happy, lively child. Well, they all are really. I don't know how they go through all this stuff and still remain happy, upbeat, loving, and gracious, but they do. My children make me proud every single day and I am honored to be their mother. They are my heroes.