Hello everyone....I am sure you are anxious to hear about Molly's progress. I can't tell you how proud of her I am. She is a rock. I wish I had some of the strength she has. That kid never stops......I figure once she starts talking it will never end! =-) She is always curious.....I am scared to know what has been going on in that head of hers. I know she has had so many questions for so long. Last night, she wouldn't go to bed.....she was having fun jumping on our bed(Joe was on the bed with her!). aahh! Our words...."Molly it is 11p.m. just go to bed!" She has been tired in the afternoons so we have been taking naps.....that stopped today! So she got up and jumped some more! Most parents would say "don't jump on the bed".....we say "not so high" =-) I guess when you have a kids go through what she just went through you are a little more flexible with the rules. =) Joe and I are both suckers for her cute smile.
It has been a busy week. Our poor nurses.......the moment we walk in the door they have to go through our discharge summary from the hospital. They have to make sure the t's are crossed and the i's are dotted. What are the post op instructions for her sites? What are the extra meds? Do you have scripts for that? What are the orders? This doesn't have a doctor's signature. Was this information faxed to the agency? Have you thought about that?.....what about this? AAAAAHHHH! The thing is that I can't blame them b/c it is their job and if things aren't in order they could lose that job. The state could come in and look at their notes...see that things aren't in order and write the nursing company up for disciplinary action. I just want to bring my kid home and worry about her. Other parents just get to come home and rest. It seems like we spend our whole time at the hospital taking turns entertaining Molly and sleeping when we get a chance, come home get everything in order from being gone and are expected to carry on like we aren't exhausted. Becca was awesome today.....she hung out with both kids so I could sleep a little. It was nice. Guess what we get to do it all over again on Monday. Molly has to be at the hospital at 6:45 A.M......ahhhhh! I hate to get up early. So does Molly so this may be a chore.
So on to........updating you on Molly and trying not to whine anymore. Molly is doing great. Today, we took the gauze off of the incision on her rib area. She was scratching so we figured it was healing nicely (which it is). Actually she was scratching the tape.....it was bugging her. Once, we took that off she hasn't had any trouble with it. The stitches will dissolve. Her trach area is a little different. We changed her trach today because she had some dried up blood around her stoma. Even after that there was still some discharge. After discussions with Cincinnati, we are good to go. Nothing to be alarmed about if it isn't coming from inside the trach. That would mean the airway is having issues. It is actually healing very nicely and the seepage is probably from old stuff. As long as it isn't bright red blood no worries. We just have to keep the area cleaned. We have to be careful because the stitch attached to her stent is under the trach ties. When they remove the stent on Monday, they will cut the stitch and remove the stent. After that, we will just periodically check for swelling. We go back a week from Monday for the first check. Once the swelling is at a point where the doctor is comfortable, we will start a capping process. That means we will cover the trach with a plastic cap, so that Molly realizes that she needs to breath through her nose and mouth. Since she has been breathing through her trach since she was 5 months old she has to learn a new way. It may freak her out at first so it may be only 2-3 min. at a time to start. We will work out way up to all the time. At that point, they will remove the trach and stitch her stoma closed. That will be a scary day! Exciting but scary. When we start capping, she can work on talking through her mouth. It will be crazy to hear her voice. We have only heard her whispers. That may be what we hear at first but it should get louder as she practices.
We have had a really tough time this week with Molly not sleeping through the night. I am about to cry so bear with me!!!!! She wakes up in the middle of the night and has to sleep with us. We stop her food for a while. She comes in to bed with us to sleep....eventually we start her food again while Joe sleeps on the couch.(We can't all fit plus the food tubing in the bed....someone would get tangled) She fights us tooth and nail to get to sleep and then she doesn't stay there!aaaahhh! She has started hitting herself in the head just to get our attention, along with hitting us. It is really crazy and very tiring. Well tonight she and daddy had a talk b/f she went to sleep. After discussing some things will her, she is afraid to go to sleep b/c she thinks she is going to wake up in the hospital and something else will be done to her. My heart is breaking!!!!!!!!!!!!!!!!!! I hate that she feels like this. He assured her that we are at home and she can sleep comfortably.....nothing is going to happen or be done to her. We love her very very much and she is safe! On the other hand.....it kills me that we have to continue doing stuff to her. She is just a little girl and the only thing she should be worried about are the monsters under her bed, what toy to play with and what color hair ribbon to put in her hair.....well not our tomboy but you know what I mean. She is now scared that she is going to go to sleep and she is going to be cut open again. She is going to wake up hurting. We are going back on Monday so they can put her under again and it will hurt again. She will have a very sore throat, stay in the hospital over night and have to have an i.v. again. I seriously don't think I can hold her down this time to have them connect the circuit for the anesthetic. Last time she covered her trach and didn't want anyone to touch her. One of the nurses had to hold her hands down. That makes me sad b/c she is just trying to protect herself from the inevitible. I cry just thinking about it. I know God has really big things planned for her.........I hope they are bigger than Niagara Falls because she deserves it! I love my little girl. She wants to be just that.....a little girl. She want to explore and learn. She is a great big sister and awesome helper.
On a different note, Jonah is a feeding machine. He loves to eat and will definitely let you know when he is hungry. He has been trying plums lately. He does like them. We have tried lots of food and not one was to his dislike. He wasn't so sure about the avacodos but came to like them. Hopefully his love for food will include all of the good stuff for our bodies. =-)
O.k. I really should go to bed, but I thought everyone would want to know what is going on around here!
P.S. Thanks to the girls who came and organized my house........you guys are the bomb. I actually can find my living room floor!!!!!!!!!!!!!!!!!!!!!!!!!! What a thought, a room without toys. =) Thanks again.
Comments (1)
OK Myra - deep breath in and ahhhhh - let it out. I know you're tired. You are doing such an awesome job with everything that's been going on. 90% of the reason Molly is as healthy and as able as she is comes from the wonderful way you and Joe have raised her. I know there are still some tough hurdles to pass through, but soon you will be past all this and yes, Molly will thank you for enduring it with her. For now, just keep talking to her and praying with her, and trust that her Heavenly Father loves her as much as you and is actively working to bring about His best for her in all of this. You are all in my prayers - Becca