Morning after surgery-back to eating eggs!
What are you lookin' at?
This is the exact position Jenna was in the majority of her recovery. Very much Daddy's girl :)
First of all, I want to apologize for not posting before now. Yesterday was busy filled, and by the time we returned to the hotel room it was after midnight. We are just all three so tired from this whirlwind trip. So the good news is that Jenna did very well in her procedures, considering everything that had to be done.
Monday evening we arrived late into Cincinnati, around 9pm. We had to do our nightly routine once we made it their, which typically takes 2 hours. So finally got her settled for bed, close to 11p. We had to be back at the hospital at 6am the next morning, which was very exhausting. So Tuesday morning we arrived at the hospital, checked in with surgery, completed paperwork, answered tons of questions and prepared her surgery. They came in to give her medicine to make her sleepy for the surgery, Versed. Previously when she has had this medication, she has busted right through it and it never has any affect on her. Well considering she has not had any narcotics since October, yesterday was a different story. I was holding her because she was fussy, when all of the sudden she straightened up really quick and looked at me with a huge grin and said "Heeeeyyyyy Mommy". It was so comical. We wished that we had a video camara, because the next few minutes were very funny. She just kept wobbling around, all loopy like, but yet not wanting to fall asleep. Who is surprised. So we got her in her gown and wheeled her to the OR. She was excited to be going to a new room and it never phased her that we were leaving, which is a good thing.
So her first procedure up was her flexible bronchoscopy, which looks at her lungs, making sure that there is no extra mucous or plugs and her anatomy looks good. Dr. Boesch, her pulmonologist came out after about a half hour and said she did great. He gave us more pics of her, showing us where everything was. He said that he "washed" her right upper lung since she always seems to have issues with illness there. He sent it to be tested to make sure nothing is growing, which is not likely since she is not showing any symptoms, just a precaution. He wants to see us in again in 6 months for another look, to make sure everything is still functioning well. Her next procedure in line was her dental rehabilitation (as they like to call it). They were in with her about an 1 1/2. Dr. Greenhill came out with us and discussed in detail what all was performed. It turns out that Jenna had 7, yes I said 7 cavities. They were a little surprised once they got in her mouth. He showed us a pic of her xrays which shows her issues. He ended up extracting the one he expected to, then he had to place four crowns on other teeth, put on 2 sealents, and did 2 fillings. He made a little joke, because Jenna has one on her front tooth, that he decided to not give her a grill today, he just filled it with white. I said, geee thanks doc. :) So now her mouth is very sparkly when she opens it. I felt so bad when we found out the amount they she had. Even though I know that it was probably contributed to the junk that she eats, but also from her medicines that she takes, how sick she was last year, vomiting for a month and a half, etc. So, he told us to try and limit the amount of juice she is drinking, even though it is needed due to her eating needs. So, we are going to try and water it down more, follow it up with water sips, brush her teeth 3 times a day. He also wants us to make sure our water has fluoride in it, because this is very important. So we are checking into that. He first wanted us to return in 3 months, until he found out we lived out of state. So, he said it was ok to follow with our dentist here with the fluoride and plus her followup in a few months for a cleaning. We are to return to Dr. Greenhill for any more issue and work that needs to be done. He does want us to see him though in 6 months to a year for a retainer device since she has a tooth missing, he is afraid her teeth will shift forward. If it does not work, we will be looking at braces way down the road. Lovely. But thankful that she did so well in surgery. The next procedure done was her ML&B which is a scope that looks at her trachea(her throat) to make her trach is not causing any issues. Dr. Arjmond did discover that she has some granulation tissue, which builds up when kids have trachs since they lay against their throat and rub. He said that when he removed the trach to look, it went flat, so right now he is not concerned to remove it since it is not causing any issues. He said that once the trach is removed, he may have to clip it out though. He wants to scope her again in 6 months also. He did say that her left side branch to her left lung is still compressed a bit, but this is due to her anatomy (her heart lays on it causes it to be squished). So there is really nothing that can be done. Once he goes past the opening though she opens right up, which is good. The last procedure performed was her echo, which went fine. We were able to speak with the cardiac fellow Matt this morning about the results. He said that there was no change from previously in January. Her bloodflow in her heart is still going both ways, when it should be going left to right, which is what it was doing in November at her last visit. So most likely this began, not due to her illness but another issue. By this happening it is causing her pressure levels in both sides of the heart to be even again. The right side is supposed to be 2/3 less than the left and hers is the same on both sides. She has never been normal with the pressures, but she was better before. He said that they decided to keep her on her oxygen continuously, keep her oxygen levels up, at least until we return in April for her heart cath. He said that most likely what is happening is that her pulmonary arteries (which supply the bloodflow to her lungs) are narrowing off some. He said that now that her VSD(large hole in her heart) was closed somewhat, there is not as much room for blood to go across, so it will back up causing it to have to across in the upper chambers out to the left lung, making her oxygen levels dip and her to turn blue. This should mainly only occur when doing activity. She has only on occasionally done it while sitting, but we should only be concerned when it starts happening all of the time. I asked him if it is possible for this to damage her heart over time, which he said is always a risk. But this is why she will continue to return for caths for work to be done to help open her arteries. They also hope that as Jenna grows and her lungs get bigger that some of the arteries will grow with her, which will help her bloodflow. However, the areas which are already narrowed off, won't ever grow. So this is where there is a problem. Hopefully when we return in April, they will be able to reach more arteries and help increase the bloodflow to her lungs. It is also possible that the stent in her right lung is narrowing again (it does this within 6 months after the last few caths), which would cause the pressures to increase. He did say that since we are coming for a cath in April, her plan will not change before then. They are already planning on doing work on her, so unless she would make a turn for the worse, we will stick with that plan. He is going to speak with Dr. Beekman (her cath cardiologist) about possibly starting a medication which may help dilate(open) her arteries way out in her lungs. But he is not sure if it would be beneficial to her. We will see. But, for now we are glad that she is still doing well and her right side heart function is still doing well.
Yesterday afternoon and evening for Jenna was a bit rough. She was very grumpy, tired, in pain and basically not very happy to be in the hospital yet again. She was very much attached to Daddy almost immediately coming out of surgery. She would not let him put her down all evening, until we finally got her to calm down and go to bed. This morning she was getting back to herself again. Not quite as clingy, but still very upset when he left and wanted to know where daddy was. She just kept calling his name over and over. She had a great night, slept the whole time which is good. We are still giving her Tylenol for pain a few times a day, just to help with comfort. Once we let her know that we were busting out of that joint (the hospital) she was thrilled. We got everything settled, papers signed, packed our bags and made it out of the hospital close to 1pm. The car ride was good for the first half, but then she woke up, played for a bit and then wanted out. So about the last hour she cried off and on to be out. This was a little exhausting, but we made it. She is now playing, eating and we are going to start getting settled for the evening.
While we were in the hospital, we were able to see our friends, which was nice. Of course, she always has visitors every time we go. Her "boyfriend" came to see her, she was so thrilled and made him hold her, it was so sweet. It makes us feel so good, that we have get such great care while there, we are getting used to being on the TCC(trach unit), even though we still miss our fav CICU. They are the best! We will be back to see them though in April for her cath and sleep study.
I hope everyone enjoys the pics I posted, was able only to get a few while there. We want to thank everyone again for the thoughts and prayers, we don't know what we would do without our support team. It means a lot. I am not sure how people would make it through life, not being considerate of others, because what goes around comes around. Justin and I learned that lesson long ago after going through everything that we have. Jenna has taught us quite a lesson and we try to enjoy life as much as possible. She is our little inspiration! So, thanks again and until next time. Buh Bye!
Love, Jenny, Justin and Jenna