This isn't a fairy tale. Our lives have been forever changed by Congenital Diaphragmatic Hernia. We're just trying to find a way to make it work.
Tuesday, February 7, 2012
Liams breathing update/ Lanies turning 4
We started Liam's breathing treatment that replaces his QVAR inhailer in the nebulizer on sunday. Before I gave him the treatment I looked at his breathing. Already just being off the albuterol for a little over 12 hours he was breathing so much better. We should get to start his xophanex nebulized today. We've been waiting on them to get the order in. There is still some retraction in the middle of his chest but not on the right side. Im hoping that the xophanex will completly clear it up. Liam's pediatrician is starting to think that this is just how Liam will be for awhile until he grows out of it. He doesn't was to admit Liam into the hospital unless it gets worse or we see nasal flairing or him turning pale then blue. Our pediatrician is worried that if we admit him and he's not sick or needing to be admitted that he will surely get sick since its RSV season and there are a ton of people comming down with phnemonia. We're just super happy that he is doing better. I ordered a pulse ox online even though our pediatrician said he didn't think I needed one at this point. I think it'll give my mind some peace. When he's retracting I need to know if he's getting enough oxygen and Liam smiles through everything so I cant go off his moods. It'll be awhile before it comes in the mail though. Right now Liam is still sleeping in the swing or bouncer so he is upright even though he hasn't been getting sick during the night and only gots sick once or twice thorughout the day. Im playing it safe because his aspiration cause phnemonia once and we dont need it again. Even though Liam hasn't been taking anything longer than cat naps throughout the day he's been in good spirits. He's not as cranky and doesn't want to be held all the time. Lanie has been helping us with him alot. She sits infront of him and talks to him and gets him his toys and plays with him. He thinks is the greatest thing in the world to have all that attention. She gives him his paci and turns on his music. She's such a huge helper. If he needs a diaper she will bring it to me or if his pump is beeping she'll turn it off if thats what it needs. I don't know what I would do without her. She growing up so fast. She will be 4 on thursday. I can't believe I have a 4 year old! I feel so old lol. She's growing so fast, and Im so proud of her. She can count 1-12 and recognizes the numbers when she sees them somehwere. The other day when we went to get gas she told me what pump we were at. She can do addition (1+1 through 7+1 ao far. And even 4+4,5+5 and 6+6). She knows so much already and hasn't even started school. We had thought about putting her in pre-school but with Liam's health being so fragile and the frequent hospital stays we cant risk it. We can't risk her getting exposed to viruses and bringing it home to Liam. We also can't risk getting her settled in pre-school and end up having to pull her out because we had to do another stent at the hospital. So pre-school will be conitnued at home by me. I would love to get her into some sort of activity. She does need the interaction with other kids. For now shes stuck with me and Liam throughout the day. We're throwing her alittle party saturday for her birthday out here at the house. Nothing big or extravagant. Nothing like Ive been able to do the past years. Just BBQing hamburgers and hotdogs and having family over. Not even alot of family at that. Everyone asked what she wanted and I told them shes wants everything but she really needs clothes for spring and summer. I know she'd love getting a ton of toys but we just had Christmas were she got a ton. I had t think ahead and be practical. I just hope she has a good time.
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