So, sorry that I have not posted in a few days. My sister came in town to do some trach teaching, plus Justin had to do his 24 hour stay and be completly signed off on his education. Then he left to go home and back to work, this was so hard for me and Jenna. She asks for daddy and I just say he is not here right now. So sad. But, hopefully we will be home soon and we can get back into our life again, it won't be the same as before, but we will make it work. :) He will be back next week for Thanksgiving, but we still miss him lots. I was so blessed to have him here this entire time, I don't know what I would have done with him not being here by my side. Even though at times we were ready to snap (15 1/2 weeks together straight), I still love him.
So, lets see. Jenna is still vomiting everyday, she had slowed some, but then picked back up. It is mostly just stomach contents, with formula sometimes. They are still trying to determine what may be the cause, still not sure. We have done a gastric emptying test, normal, swallow test, normal, changed her feeding pattern, no change. So, again, GI is coming in to check her out. When they were in last week, they said it was possible if she did not improve after the feeding change, that they may have to scope her again. So we are waiting for them to come in and talk to us. She has no pattern really with the vomiting, just random, always in the middle of the night, first in the morning and sometimes in the afternoon. So, hopefully we will figure out the problem. We did not come in vomiting, so I don't want to leave with vomiting. We know that her stomach has been through so much and expect her to have issues, but just want to know what may be happening. We will keep you posted on what we find out.
Aunt Stacey came in last Thursday to learn trach care. Jenna was happy to see her, excited to see someone besides Mommy and Daddy. We were able to get her educated on most of her care with her trach and ventilator. She was even able to learn about giving meds via her G tube too. Go Aunt Stacey!!!! She left on Monday to go back home to her babygirl, which she missed. I was sad to see her go, but so happy she was able to spend time with us. It was nice being with family. Meme and Aunt Missy come tomorrow to learn, so this will help with me being lonely.
Since she passed her swallowing test (which by the way was not an experience I ever want to do again-she was so ticked off!), we were given the go on eating! Yea!!!! So, Saturday she got to eat her first meal Since July! She ate little bites of cottage cheese, mashed potatoes, mac n cheese, pudding and cranberry juice. We were so proud! Since then she has ate little bites of fruit loops and graham crackers. She has also drank juice out of her sippy cup at home! Our goal right now is to have 240 calories by mouth each day, the remaining 720 via the g tube. They tried condensing her feeds to bolous-6 a day over 2 hours 1 1/2 hour breaks between. But so far, it is hard for her to want to eat because she does not get much window to make her stomach hungray. They don't want to push her stomach too much, so it is a trial and error game. Fun fun, hopefully we will figure something out soon.
Yesterday the care manager stopped by to let me know that she spoke with the nursing group at home. They asked her for a tentative discharge date so they could set the case up, which means basically that they have nurses available! She told them right now, depending on Jenna of course, it looks as if we could be home by the week of Nov 30th!!!! What a great birthday gift for Daddy, we will get to come home! SO hopefully we will figure out her vomiting issue soon and be able to go home. She is setting up our supplies with our group from home, so hopefully that will get squared away. I have heard that insurance limits you when you go home on your supplies, so this should be fun. Hopefully it will all work out.
So, Jenna has been doing ok. She has been quite moody lately. I think that she is still having trouble adjusting to her new home. She has not really grown close to anyone yet, not like on CICU. So this makes it harder, she just wants to hit and cry and scream when someone new comes in. I don't really blame her and tell the staff that she is just irritated and tired and wants to be left alone. Once everyone has left, she is fine. She has not been sleeping the greatest either, which makes her exhausted. One positive note is that they tested her stool for c diff yesterday and it came back negative! So two more of those and we can be out of isolation! I feel like that she will probably not ever comepletely adjust to her new home, just because she has had a lot of change. But, we will be home soon enough and we will get on a routine and she will be fine. She just really misses the other unit, which we do too. It is pretty quiet and no one just comes in to say hi. You get used to seeing the same faces everyday, becoming friends, and getting close. We are going to keep in touch with our CICU crew though-don't worry you all, you can't get rid of us so easy :) Besides, it is not like Jenna's heart condition is ever going away, so you are stuck with us. :) Miss Jenna also got her stitches out around her G tube yesterday, which is still painful for her, because it moves around now and not in place. They only had it secured so that her inside walls could form together. So, hopefully she will adjust to this soon. We are having to give her Tylenol for pain some.
Anyway, we will try to keep everyone posted. Hopefully we will get squared away soon, I have to get signed off on a couple of more things and I am deemed trained fully too. We will get there! Oh, and for all of you CICU crew that did not see Justin before he left, he says good bye-don't cry too much-he will miss you all too. He will be here Thanksgiving and Black Friday if you want to stop by! I can't wait till he is back! I hope that everyone is doing well at home, we miss you and hope to be home before you know it!!!!!! Thanks for all of the prayers and support-they mean so much to us!
Love, Jenny, Justin and Jenna