Ha recovery... This child is amazing! Ok so Wednesday the 17th we arrived at the same day surgery and were taken into a room. About 45 minutes later someone finally came in and told us surgery had been cancelled. What the heck! We should have known but I guess we all were just to nervous to notice we had been waiting 45 minutes. Anyways I guess they didn't have any rooms available in the ICU but they were hopeful that a couple kids would get moved to the step down unit later that day. So they told us to come back the next morning at 6:30 am and that hopefully we would have surgery! So of course we were all upset and poor Lainey was so confused!
Ok so Thursday October 18th we made our way to the hospital at 6am, we were not gonna be late! By 7 Lainey was given versed and ready for surgery. She was so good, calm and cooperative. She had us all cracking up and I think her being so at ease made us much less nervous. So we all got to walk her back to the operating room and she was so loopy she didn't care, it was so cute. So we told her bye and went out to the waiting room. They told us surgery would be 416 minutes and they would update us every 1.5-2 hours. We got our first update around 9 o'clock saying surgery was starting, so from 7:30-9:00 she was getting all her lines and getting prepped. I can't remember all the updates but the time went really fast. At noon or so they came out and said that they were finishing up and closing her chest. I think by 12:30 or 1 Alex and I were allowed to go back to the cicu and see her. As soon as we got back there Lainey was awake and just kept saying she was thirsty. She wasn't allowed to drink anything for at least 4 hours after surgery, poor girl! The only time I shed any tears was when she cried to me "mommy I'm sssaaaadddd" I felt terrible. I didn't expect her to be awake ten minuets after surgery let alone crying she was thirsty and telling me she was sad. Mostly she was pretty calm just thirsty a couple of times she tried to sit up and a couple of times she started freaking out about all the stuff connected to her.
So later that afternoon she was finally allowed to drink and she was so happy! She did good they finally turned off the sedation medicine and once that weirded off she got very anxious. She could feel all the tapes and stickers and what not on her. She didn't sleep good because every time she moved she would feel the catheter taped to her leg and she would freak out. So they removed her cath and then she had to put a diaper on which didn't make her happy.
So Friday afternoon she was moved out of the cicu and to the step down unit. Before she could go they removed her a line and her pic line. That was not fun! Her a line shot blood across the room it was gross. Later that afternoon they removed her chest tube. That was not great she flipped out and kicked and screamed. But once it was out she could get up and walk and go play. Well they removed that at 4pm and at 5pm she got to ride a little car down to get a chest X-ray. As soon as we got back they said that there was air in her chest and she couldn't go down to the play room. They thought about putting her on oxygen but she wasn't having it. They also said there was a chance of being moved back to the cicu and getting a chest tube. This was on of our biggest fears because she had one put in last surgery and they said they were very painful. So the rest of that night they told her to take it easy so she did crafts. They said the next day she would have another chest X-ray.
So on Saturday I saw the doctors out doing rounds so I went to listen. Dr. Manning said that she could go home that day or the next depending on what the chest X-ray showed. So her X-ray was scheduled for 3pm. Before that she was able to go to the playroom so she was having a ball. After her chest X-ray we were discussing changing her dressing and giving her a bath. At 4 they gave her Tylenol and then she was gonna come back in a bit to do the dressing change. Well instead she came back in and said we could go home. So we were going home after they removed her iv and took off her dressing.
So I forgot to mention that the only medication she was on for pain was Tylenol and ibuprofen and after the day of surgery she was only using Tylenol. How crazy! Since Saturday when we came home she has had a little appetite and really no pain. We made her take Tylenol because she would get the hunched back look, but once she got Tylenol she was up jumping and running all around. So today she has refused and Tylenol and has done great, maybe too great! She has been walking around in her play high heels, playing soccer, running, twirling, dancing and playing with balloons. So the only issues we are having are, first she still won't let us take off the stickers for her heart monitor leads. I mean seriously you would think we were murdering her if we even touch them. And two she has too much energy and no fear or understanding of what she went through.
So thank you to everyone who thought of Lainey and prayed for her! They also said they were able to put in the same type of homograft conduit and one big enough that it should last her at least ten years! Woo Hoo! They are hopeful it will last until she is an adult. I'm so happy about this! This Friday we go back to meet with the surgeons nurse practitioner and probably him, and to have another chest X-ray. So let's hope her chest still looks good.
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