Well, it's been so long since our last entry, many of you who aren't signed up as followers have probably quit checking for updates. However, I am going to try and get the word out that we have updated it. Our lives have gotten so busy since Brett came home - although it was busy before, it's different now. We're so glad to have him home!! Every time we feel as though we are too stressed and it's too hard, we just think about how much we love our sons and are so thankful first of all that he has survived the first six months, and second, that we are not in the hospital. First I'll go through an update on Brett's health, then (in another entry) I'll try to describe our daily regimen and answer a few specific questions some people have asked me that you all might be interested in reading. If you have a question, please post and I will try to answer it. So here is the timeline:
August 28, 2009 - Brett is discharged from the hospital after a 153 day stay. Whew! We were so excited and relieved to bring him home. Of course, he will always have CF, but his health was under control enough for us to take him home. He had finally started to gain weight on a consistent basis. Although he was coming home, he was/is still very medically fragile, so the central IV catheter (broviac) was left in just as a precaution. The doctors felt that there was a good chance he would be sick soon enough again that he would need to be put back into the hospital and/or need fluids for dehydration. If he was dehydrated it would be extremely difficult to get good IV placement on his little body that would be effective. This isn't the best option, of course, because anytime you have direct access to a vein/artery, there is the chance of infection. However, it turned out to be beneficial for his 2nd hospital stay.
September 10, 2009- First CF Clinic visit at UNC since discharge. Gained an average of 23 grams a day. The goal is 20-30 grams, or around an ounce a day. The weight gain was good, but his throat cultures had grown klebsiella and enterobacter, and so we started oral antibiotics.
September 17, 2009 - Doctor called because September 17 throat cultures grew klebsiella and enterobacter, and the antiobiotics we were using was not doing much for those particular bugs. Started a new oral antibiotic that night.
September 24, 2009 - Went for his 2nd clinic visit, and he had only gained 15 grams a day, so the weight gain was still happening, but certainly had tapered off. The doctors felt that after a week of the antibiotics his breathing and cough should've gotten better than it was. So they suggested re-admitting him to the hospital that weekend to start him on IV antibiotics. They really don't want Brett in the hospital any more than we do - mainly because of the viruses so prevalent in the hospital. However, the medicines must be started in the hospital. Also, they felt that we should admit him now at the beginning of the season and try to get his system "revved up" for the winter so he may not have to come back and stay during the worst part of the winter/flu season. We hope that will be the case.
September 26, 2009- A bed opened and we got Brett settled in his room around 9 PM. Started the antibiotics right away, and stayed 5 nights receiving IV antibiotics and checking the doses to make sure they were giving the correct amount for his body and to see that he was definitely improving. All this time Brett seems the same temperament-wise. If he felt worse than normal, he didn't really show it. So it was not very stressful or emotional as hospital stays go, just stressful/lonely in the fact that being in the hospital drains your energy and the family is separated.
More than anything, I was glad Brett had been moved out of the NICU during his last three weeks the first time he was in the hospital and up to 5th floor children's, which is where he will go whenever he is admitted under the pulmonary service. Because of that experience, I had sort of "learned the ropes" for 3 weeks, and I was confident and more effective as a parent/advocate this time, knowing how things worked on the floor, and also having had Brett home with me for almost a month, I knew him better as well. I knew all the office staff and many of the nurses, and I wasn't afraid to ask for things or tell them how I wanted things to go. In fact, they took my spreadsheet of times for medications I use every day and made a copy of it, so they would be able to follow it and bring him his meds the same time I do so that he would stay on the same schedule. I thought that was really cool.
One of the things we really wanted was to be discharged if possible before October 1 , because that was the date that they closed the hospital to ANY sibling visits under 13 years old. During the last stay and during this stay, Gantt was allowed to stay with me night and day. They are being proactive in infection control because the anticipation of a bad flu season, which I do agree with for the health of my patient; however, it sure will make it hard on our family whenever he's in the hospital. So we're praying he won't have to go back all winter long.
October 1, 2009 - Discharged again and met the home health care nurse that afternoon to get us started on the IV antibiotics at home. If Brett did not still have his central line, we would have to stay in the hospital 3-4 weeks, just to receive the treatment!! Needless to say, we are VERY thankful the doctors had the wisdom to do that for Brett.
October 2, 2009 - Twins turned 6 MONTHS OLD!!
October 6, 2009 - Gantt had his 6-month checkup, with regular immunizations and his first flu shot. Gantt weighed in right about 17 pounds, which is 45th percentile on the regular six month growth chart (not a preemie chart). His height is the 50th percentile, so he may be the tallest one when everyone is grown up!
October 9, 2009 - Brett had his 6-month checkup, with regular immunizations and his first flu shot. Brett weighed 11 pounds and 9 ounces, which is 9 ounces more than when he was discharged October 1. Remember, the goal is about an ounce a day, so we are very encouraged by that. Brett's weight is 23rd percentile on a preemie 6 month scale, so that is pretty good for a child with CF. His height is 50th percentile on a preemie 6 month scale. Our doctor estimated his physical development is about the same as a 2-month old right now. Mental development seems normal for a six month old. Now our whole family has had the flu shot, and the twins will go back next month for a booster. Still waiting on H1N1 vaccinations to come out.
What the next few weeks look like:
The nurse comes twice this week (October 12th) and twice the next week (October 19th) to weigh Brett and get his labs and stuff. On October 22, the early intervention people are coming to assess Brett and set up services, which he'll probably qualify for almost all of them. On October 24, we go to the special infant clinic at UNC, which is exactly what the name is. They monitor developmental progress for premature or ill infants who are behind. Just more closely monitoring than our regular pediatrician does. Also on October 24, we go back to CF clinic for a follow-up and determine whether Brett can stop the antibiotics.
So for the last week we've been trying to settle back into being home, and make sure we are getting all the administrations done. It is very tough to get any sleep. Really. Between caring for the basic needs of both twins, then all Brett's extra care, and of course, Mark - there isn't much time to get a whole lot of uninterrupted sleep. That is perhaps the hardest thing right now because without sleep/energy, it's hard to get everything done, and of course the kids have to be fed & clean, clothes have to be washed, homework has to be completed, backpack/lunch packed for the next day, etc. etc. Fortunately, Mark is old enough to take care of himself in a lot of ways, such as taking a shower on his own and many other things. Unfortunately, some other things we just have to put off until they just absolutely can't be put off any longer. Oh well, such is our life right now. We are so happy, happy to have all our boys home, and we are enjoying our family time.
