Yes that is right...we spent yesterday in the ER with Miss Madi! She came down with her first cold last Monday and was getting much better as the week went on. She woke up Saturday morning and was having a hard time breathing...something that is not totally uncommon for Madi. She was diagnosed with chronic lung disease after her heart surgery (which sounds much worse than it really is) but it has been getting better with time. On Saturday I knew she was working really hard to breath and you could hear the fluid built up in her lungs. We took her to her pediatrician's office and they checked her oxygen sats which were reading 85%...yikes! They have never been that low and since surgery she has been around 98%. The Dr recommended we take her straight to the ER. They were concerned she may have pneumonia. The ER had a more accurate sat machine and there she was reading 87-93% which is better than we thought but still not great. That was definitely a relief! They did a chest xray and ruled out pneumonia but her lungs do look worse. They are enflamed and have more fluid in the space surrounding the tissue. They gave her some IV lasix and after talking to her cardiologist, decided they felt comfortable letting her go home. When she was released from the ER her diagnosis was pulmonary edema and heart failure. WHAT...heart failure?!?!?! The Dr explained that heart failure sounds horrible but really it just means that her heart is overworked and therefore not functioning to it's full capacity. I thought the fear of heart failure was behind us now that she has had surgery! So, we will most likely be visiting the cardiologist and possibly pulmonologist tomorrow. She seems to be breathing a little easier today but is still struglging and has quite a bit of fluid in her lungs. Of course, Madi is still her happy little self. Even as she is struglging to get a good breath, she continues to smile and laugh. She amazes me everyday and is so much tougher than I could ever be!
I am so grateful she is okay and was able to come home but honestly I am a little frustrated right now. Just as she seems to be making great strides forward, we have to take a few steps back. When will she just get to be a HEALTHY baby?!?! I thought these issues would be resolved after her heart surgery...which I guess was wishful thinking! She has already been through so much...it just doesn't seem fair. I know it could be much worse and I truly am grateful for the health and happiness that she does have. Of course this also has an effect on her development. We were making huge strides with her gross motor development and I have noticed a setback just in the past few days. I know I need to be patient and focus on her health but it is hard to see her take steps backwards. I am trying my best to stay positive and focus on the fact that she WILL hit all the milestones at her own pace. I just sometimes wonder where she would be if she didn't have to deal with hear defects and chronic lung disease! I will keep you posted on how she is doing over the next few days. Please keep her in your prayers!!!
I will also post some fun summer pics from the past few weeks very soon.
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Jen! I'm so sorry. I was actually working the day you first called the clinic and one of our (new) nurses told you just to wait and watch her. I didn't feel good about it so called one of the other nurses that was working the next day and told her to check on you. So glad that you had the intuition to bring her back on Saturday, you are a good mama. Thinking about you guys.
ReplyDeleteGosh that little girl is SO tough! We are thinking about you guys and hope that Madi's breathing gets easier very soon!
ReplyDeleteThinking about you. Yes I have learned that once a heart baby always a heart baby. My son had his avsd repaired in May. We always have to be cautious of his breathing and colds ect. I think because of the heart some babies may have more setbacks...but they will all get where they need to be in time. Hang in there...wishing for better days. Ps.At least she didn't have to stay in for longer:)
ReplyDeleteYes, she will hit those milestones. Sometimes it seems like we have to wait a long time for things to happen and other times, milestones happen so rapidly in succession that you can hardly remember all that's going on. You'll experience those joys, too. Hang in there. I'm glad she's doing well.
ReplyDeleteHi Jen,
ReplyDeleteCouldn't find your email so sorry to reply on the blog. I'm totally SOLD OUT of the "i did it" tees. I thought I might have one 6-12 mos here but I don't. I'm so sorry!!!!! I do plan on ordering more and I'll post when I do so little Miss Madi can get one. She certainly DESERVES one :)!!!!