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Sunday, September 25, 2011

We Finally Did It!!

Hello everyone! Sorry it took so long for me to get this blog post up. We have been so crazy busy lately! The week before Caelyn's surgery we went to the Labor Day parade and Caelyn had so much fun! Her favorites are the marching bands, police cars, and fire trucks. She loves her loud noises!! And she even got a sucker or two!

Now onto the reason why your here: surgery. We got to Rainbow around  3pm on that Sunday and they did not have a room available for us so we had to occupy Caelyn for about 20 minutes until we could get a room. It was kind of fun checking into the floor because all the nurses remembered her and were amazed at how great Caelyn had been doing! After Caelyn went to sleep that night Caelyn got hooked up to all of her monitors for the evening for her testing. When her nurse came in to check on her in the middle of the night, she informed me that Caelyn's surgery was going to be at 10:30am the next morning and  that they would probably be there to get her around 9am.

The next morning, we went out to the car to get some things that we had forgotten and when we got back they were there to get here already! It was only 7am!! We were not ready for them yet! We walked Caelyn down the the pre-op area and stayed there with her while they got her prepped and we talked to her doctors. They were going to do an MRI first and then would do her bronchoscopy and trach removal. Her ENT doctor said that they would do the bronch, cut out the scar tissue and then sew her closed. She would go back to her room and we would go home the following day. Then I talked to the pulmonary doctor who said that her test results from the previous night was kind of iffy so they were not sure if they would remove her trach or not. They did a CO2 study and she said that Caelyn's levels overnight went to 60 (with normal being 35-45). At this point we were very nervous. Of course we wanted Caelyn to get her trach out because it would be so much better for not only her, but all of us! On the other hand, we were really nervous because of the test results. We for sure wanted to do what was best and most safe for Caelyn. All we could do at this point was pray and see what happened when she got out. They told me that Caelyn would also be getting an echo cardiogram because of the high levels of CO2 they wanted to make sure her heart wasn't working too hard. They told me that Caelyn would be in surgery for an hour or two. Now time to wait...

3 hours in and we still had not heard anything. I asked the secretary at the desk and she called back to surgery. She said that Caelyn was with ENT now (which was last on Caelyn's to do list) and that they were just finishing up. Now I'm so nervous I'm shaking. I just want to see my baby. Does she have a trach? Does she not? Another hour goes by and we haven't heard anything again. So once again, I go up to the desk and list the things that Caelyn was supposed to have done and asked her if Caelyn was finished with all that. She calls back and tells me that Caelyn had her MRI and her bronchoscopy, but she did not have an echo cardiogram and that the doctor would explain why. They said  that she would be heading to recovery and they were be calling us soon. By now my mind is racing? Why didn't they do the echo? Maybe the decided to keep her trach in. I'm so nervous I can't sit still and I'm nauseous. Finally after all this time, Caelyn's pulmonary doctor came out to talk to us. She said that the test results they had given her from the night before were wrong. Caelyn's levels stayed between 17-30. Which is awesome. I was so relieved. She also informed us that they did remove Caelyn's trach. I let out a huge sigh of relief. She said they didn't do the echo because the test results were wrong and they were running extremely behind schedule. Then she explained Caelyn's situation to us. She said that they removed Caelyn's trach, but they did not sew the hole closed because the was still a small area above where her trach was that was kind of narrow. They did not want to sew it shut in case there was an emergency and they had to re-trach her. Also, with letting the hole gradually close on its own, it would give Caelyn more time to adjust to breathing on her own through the narrowing. She informed us that Caelyn was recovering in the PICU and that we could go see her.

I just about ran the halls to get to Caelyn! I was so excited and anxious to see her! What I saw when I walked into the room, however, was a very scary site. Caelyn was screaming at the top of her lungs (however she was hoarse so you could barely hear her) and she was kicking so hard she was throwing herself almost a foot off of the bed. She had a nasal trumpet in her nose and she had an oxygen mask on. I had never seen her act like this before!! She was being a wild woman! As I continued watching her, I realized what was going on. She was freaking out! She kept reaching for her trach and it was gone! Poor baby was crying and hyperventilating and everything! She had a really rough time for about 4-5 hours. They did not want to give her anything to relax her because they wanted her to be awake and alert to learn how to breathe on her own. However, after about 5 hours of non-stop screaming and kicking they finally gave her some Morphine. Then she finally settled down. We got to breathe for a little and update the family on Caelyn's situation. Then, Caelyn woke up again. She reached up and grabbed for her trach and off we went again; screaming, hyperventilating, kicking. So she got another dose of Morphine. This time she actually managed to sleep through the night.

The next day we went to the regular floor and ended up being able to go home to the next morning. The next few days were pretty sad. I felt so bad for Caelyn! She would reach for her trach and just cry and cry. It was so heartbreaking! I would imagine it would have to be so hard for her to have something that was a part of her and her comfort taken away.

After coming home for the hospital, recovery has been great! Caelyn was breathing better everyday and is now back to normal. She is back to her giggly little self and we are looking forward to her spending the night with grandpa and grandma sometime soon!

Thank you to everyone for your support through this time! We appreciate all your thoughts and prayers. It means a lot to us!

Saturday, September 3, 2011

How To "Manage" Your Special Needs Child and the Importance of a Medical Notebook

First a quick update on Caelyn :)

She has been continuing to do well. She got to try out her stander at Early Intervention this week. She did so good! She did not fuss at all! She was in it about 10 minutes before we took her out. I'm anxious to see what she does in 2 weeks when we go back! I know that when we bring it home she will love being able to be in it and see/play with her big sister.

We went to the movie theater last night and watched Winnie the Pooh. Caelyn had so much fun! She giggled throughout the first 30 minutes and then she fell asleep! Hahaha. We went shopping today and I just had to share this picture. It's too funny! Caelyn's daddy set his wallet down on her lap and looked away for 5 seconds. When he looked back this is what we found:

Looks like someone is learning early!! (Miss Amy, you would be so proud of her reaching and grabbing!!)

I wanted to make a short post on the importance of "managing" your special  needs child. I cannot express the importance of being involved in every aspect of your child's care. You are your child's best advocate. If one doctor will not listen to you or you do not get the answers you were looking for, go to a different one. Go to 50 different ones if you have to. I went through 3 doctors until we could finally find one that was willing to listen to us and start us on the right path. Trust your instincts; you know your child best.

Go to every doctor's appointment possible. Attend all therapy session when you are able. Find out what you can be doing with your child at home to maximize their care. Know what medication your child is on and the dosages. It is also helpful to know which medications your child has been on in the past. Know what past surgeries/procedures your child has had. Know your child's diagnosis and gain as much information about their condition as possible.

As helpful and important as all that is, it will do your child and their doctors no good in an emergency situation. If there was a situation in which an emergency would arrive and you were unable to be with your child, the doctors would be in the dark as to your child and their situation. That is why it is really important to have a medical notebook that stays with your child at all times. Check out this website for really great information on a care notebook, how to create one, what information should be in it, etc.

Please comment on our facebook page here and let is know if this information was helpful to you and if you have any questions! Thanks! See you next Friday :)