When Kennedy was diagnosed with CF we were assured that we were likely to see more trouble from her myriad of other issues than we would for CF. With the exception of one hospital stay two years ago, that’s been mostly true. When Denver got his diagnosis at the age of 13, we knew his situation would be different. Already he had chronic lung issues (pneumonia, bronchitis, etc). Still, given the unique nature of both his and K’s CF…and the fact that I have a document stating that genetics can not confirm the diagnosis in either child – therefore making them “atypical” CF cases… We still never realized how fast it would happen. We didn’t realize how soon he’d end up in the hospital. How quickly one hospital stay could change his day to day existence. Or the perceptions of those around him. How he would go from being “Oh, I don’t see how they could diagnose him with that” to becoming, “Is it safe for him do this? What about his illness? We need his doctors information to let him do…” In heartbeat. In a cough. In a moment’s time he went from one life to another. Change happens fast for everyone. This lightning speed attack of time & reality threw us all for a loop. We’re all still adjusting. It takes time. Let’s just hope time gives us a little breather to catch up before we get blind-sided with another dose of reality. Read more »
There is no way I can handle this. I’m not strong enough. How horrible a Mom am I that I can’t help my own baby? I’m so weak. I can’t even hold her hand when she’s screaming in pain and fear. I ran from the room, bursting into tears. How can they think I can do these meds at home? We were on our way home. I was trembling in fear. We arrived home and Archie kicked into “Super Hubby” mode. Trying to do everything to make the transition run smooth for me. To ease my panic, despite his own level of it. His attempts were valiant. I was just not having much success coping. The rest of the evening and night was a disaster. I was very short-tempered. So was wonder-hubs. All 3 kids were wired, over-stimulated, jealous, hyper, impatient. It was a mess. Archie had to do her meds…and I got stuck having to hold & distract Angel – who was unhappy with the PICC line in general. There was no way this was going to work. I went to bed un-satisfied, un-resolved, almost depressed. The next morning the panic had subsided. I made myself to busy work – preparing for our Christmas Eve ‘party’ at my house. The neighbor had asked Archie’s help with something…and he was preparing to go right around medicine time. While Archie took a shower, I stared down the meds. I dug down deep and called over Angel. I started the process. I cleaned the line, and started the saline…and then the meds. I had done it. With minimal sensation of nausea…I had administered her medication into the PICC line. And through it all, Angel hadn’t freaked once. Maybe…just maybe…there was a way… ********* Tomorrow, a little bit more of the ugly…how the others are handling Angel’s doses of attention…how we’re handling the schedule (not always so good)…and so on… Read more »
by Sarah CassMulti-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.
When you have your first baby. When you have surgery. When your baby is sick. You’re in the hospital. In a careful bubble designed to protect and heal. The ‘real’ world falls away. Bills are forgotten. Family drama – gone. Medicines are administered by trained professionals. Problems are solved by caring nurses or hospital staff. You have nothing to do but care for the illness (or newborn). Safe. Then they say “You’re going home.” And delicate as it is, that bubble pops. Fear attacks you. Can you do this at home? What if something goes wrong? The REAL world is out there….waiting with responsibilities and things to do OTHER than care for the illness (or newborn). You have to divide your attention. On Thursday we were granted leave. We were going home. My cabin-fever-filled husband was jumping for joy. I was trembling in fear. It has turned out all right. But on Thursday I was crippled. I was afraid. We had to administer PICC meds at home. There was Christmas. Two other kids. Family. Responsibilities. It was so hard to be joyful that my baby would be going home – free of the hospital. All I could focus on was the fear that we’d mess up her carefully maintained schedule. That a dose would be missed. That a child would play with a picc line. The other two kids would add to the chaos, feel jealousy over the constant attention to Angel’s schedule (they have). I couldn’t handle even looking at the PICC line, much less administering a dose. It wasn’t fair to make Archie do it all…but I couldn’t handle it, could I? Everything could and would go wrong. We were no longer ‘safe’. SHE was no longer ‘safe’. It was crippling. I felt guilty. I should be happy she’s improved so much so fast. I should be jumping for joy that we would all be together at home for Christmas. But I couldn’t. I was too afraid. **** *I wanted to post this last Friday, but it didn’t seem like a great Christmas Eve post. Over the next couple of days I’ll update on how we’re doing…how I’m doing…how she’s doing…how the other two are coping…how much of a pit our house currently is…all of it – the good, the bad, the ugly, the beautiful (there’s quite a bit of that – & that needs to be covered). It’s all here. Coming over the next few days. Her follow up visit with her pulm is on Wednesday and we’ll know more about when the medicine will stop & the picc line will be removed. Over the next week, I’ll tell it all…. Read more »