January 12, 2015

Update of her cath....

Hey everyone-

Sorry for the late post, Been a busy few days.  During her cath she decided to throw a curve ball. As I predicted prior to her cath, I knew her left artery with one of her stents would need work. Mama always knows :)  Her doctor came out around 11:30 and said that her heart pressures were worse and she had an artery in her left lower lobe (the one with the stent) which was significantly occluded (blocked) off. The actual size should have been between 10-12 mm and it was about 4mm.  Her pressures in the right heart were back up above to even on both sides close to 80.  Which was higher than her last cath in the summer. He said since she is only getting about 47A% blood flow to her right side this is putting strain on her and he wants to try and balance her as much as possible. So he was very firm about wanting to take care of the issue that day, if possible. He had already accessed her via the neck and groin, and administered Heparin (a blood thinner). Due to him doing so, getting a catheter with a stent through the neck to this area would be very difficult, but he would try.  Otherwise, he would need to bring her back another day because accessing through the liver at this time (because it is so vascular with blood) would be dangerous for her due to the blood thinner. Great.....Jenna of course wanted to show Dr. H who was running this show.  LOL   This was his second cath with her and I knew it would be a little more complicated. He said it would be at least two more hours before he finished and then he would update us.

Sooooo......two hours later he came out, just as he said.  He explained that unfortunately as he expected, he was unable to get a stent to the area needed. However, he was able to balloon (stretch) the area open with high pressure and was able to keep it open to the size needed.  He was very pleased with this and her pressures lowered as well. We were thrilled.  He provided pictures to me to show the change and it was great.  He said her heart function and output was unchanged, which was good. However, at this point he is not sure about if the medication is working for her. So, with that said he does not want to make any changes. He said that because he opened a new area to give better blood flow there, it was not meant to make a difference with the medication.  He said it is a very complicated process, that we are still trying to understand if it will even work on Jenna. He said the purpose of the medication is to "remodel" her arteries to be open and allow better flow to help lower pressures. So the effect of the medication can take time.  So he was happy with just giving her more balanced flow to help with fatigue and he hopes that in time the medication will help also.  He wants to see her in 6 months for another heart cath to see where our next will be.  He performed a lung scan the day after her cath to see if the blood changed from the day before and of course it didn't. She is getting about 57% to her left lung and 43% to her right. He was disappointed I think, but she is doing well and he was pleased that she tolerated the procedure well. That is what matters. He stopped by to see her that evening and played with her legos a little, answered questions and said she did great. So she a fairly quiet evening, she remained on oxygen until the next morning which is her normal after getting anesthesia, she likes to drop in her oxygen levels. She had a great night, loved her nurse because it was a boy (haha-she is such a flirt) and she enjoyed seeing those who love her so much there.  They could not believe how big she was getting and how much she was talking.  At one point in the stay, I was ordering her dinner on the phone and my mom was sitting in the chair reading and next thing we know we hear "can I help you" over the intercom and Jenna responds "yeah, there's something wrong with my tv, can you get my nurse?" I got off the phone and I said seriously Jenna?! She said well you were busy and I needed help. Mind you the nurse had showed her about 30 minutes before this, if you need me for anything, press this red button. Boy, she will regret that soon enough lol! She is hilarious!

So the next day we made the trip home, she slept and relaxed. Thankfully she had gained her appetite back, which didn't take long. When we got home, daddy was there and he was feeling much better, which made her happy since he was unable to be with us. I was very fortunate to have my mom be able to make the trip since he was sick.  She returned to school today and was thrilled. She got lots of homework to make up, which she felt she had to do all tonight, but I told her it was not necessary. She tries so hard.  Mama returned to school today and worked, so I am quite tired.  It is going to be busy, I started my third semester and nursing school and I can't believe it. I want to say thanks to everyone who prayed and thought about her and us during this time, it means so much to us. We can't truly say it enough.  I will try to keep everyone posted on how she is, but know that she will have her next procedure in the summer unless something changes. We love you all!!


January 7, 2015

Here we go again.....Cath # 14

Hi everyone,

Sorry for not posting in such a long time, things have been quite busy with Jenna and school and mommy and nursing school. I barely have time to eat, sleep and breathe! LOL Anyway, Jenna has been doing well. We have been doing well and she has been going to school partial day. She has only been sick once, which was in December. Thankfully two rounds of steroids and an antibiotic took care of that! She has been her usual rotten self and loving every minute of school.

Today we are having our Heart Cath #14 to see if the new medicine to help with her pulmonary hypertension is helping her or making things worse. There is no plan for intervention at this time, he said possibly in the future but not at this point. Her echo and lung scan completed yesterday were unchanged from the previous tests, but hopefully in the cath lab there will be a little decrease. We will see.  She arrived this am at the hospital around 7 am and did all the pre-op stuff, got her loopy medicine (which was quite hysterical to watch-she thought her stuffed Timmy the Elf had 3 eyeballs!) and they took her back around 9:30am.  The nurse came around a few minutes ago and said they accessed her through her leg and neck well and Jenna is tolerating everything just fine.  They are hoping to be completed in about an hour. I will keep everyone posted on how she does, hoping for no worse issues and maybe some improvement! Thanks for the prayers in advance!! Also be thinking of daddy because he is sick and was unable to make the trip (first cath he has ever missed), thankfully my mom could make it with me. Love you all!


Jenny, Justin and Jenna

July 30, 2014

Lucky Number 13.......

Hi everyone-

Sorry for the late post! I have finally been able to get on to the website to post via my laptop which is way easier.....So this morning Jenna went back for her heart cath about 10:30am.  She was crying when we left her, but quickly recovered with the nurses when they began to play Frozen on their phones-haha. Dr. H(cath dr) was able to access into her around 11:15a and completed her case by noon.  We were so shocked-this was her 13th cath and all the times before this was by far the quickest one.  During the surgery he was only able to look at her "diagnostically." Which means basically he just reviewed her numbers and tried a couple of medications to see if her vessels would respond.  There were no areas to open or place stents in at this time.  In her previous caths she has ranged in the 70s for her pressure numbers in the right ventricle.  When he looked today she was about 60. So, there was some improvement, which to him he feels that it is possible that the medication she has been taking has helped a little.  He said that he tried giving her nitric oxide(which is the same as the oral med that she takes to see if she responds), which she did in one area.  He said that she does not have blood flow to all areas of her lungs so obviously this means that they cannot function properly like normal.  So he wants to focus on the areas which do have some or more flow to them to help improve them.  He explained that she has two vessel areas off to the right and two to the left (each that provides the most to certain parts of her lungs).  The remaining vessels are really small and not able to be worked on.  These areas of focus have either limited flow(containing stents) or one area is very open.  The plan is to discuss with her regular cath dr., Dr. B about the next steps. Dr H is going to recommend starting another medication (Bosentan) in addition to her current one that works with each other.  He said that depending on how she reacts it could help and open up these narrowed areas or it could possibly do the opposite and push too much through causing some issues. So he is currently weighing his options. He increased her Lasix dose also to help with her heart function.  If she begins the medication, then she will start in about a month(once insurance approves) and then we should come back for another heart cath in 4-6 months to see if it is working or causing strain on her heart.  He told us that this interventions are strictly to help improve her quality of life and hopefully the longevity. He said that it is the case that her pulmonary hypertension will progressively get worse over time. He does not know how long before she would begin to decline, but she is doing well at this point. He doesn't want to do any major interventions, as she is doing so well at this point. Her heart function has not declined which is good news. He also said that since her condition is caused by her heart problem, it is not like he can give her new lungs to immediately fix things, but he said if at worst measures at this point in his area it is not something that is out of the question. She is doing well so that is a very last option.

She did well through the afternoon, except for being very fussy because she had to lay flat for 4 hours. They accessed through her neck so she has now begun to complain of some pain there. Dr H said if she was able to walk, eat, drink and pee he felt she was ok enough to leave this evening and return to the RMH for the night before returning to WV. And guess what?? Lil Miss behaved and we were discharged late this evening. Yay, so we are all 3 in the house until tomorrow and then we will head back in the am! It is so weird because we have never done this before, a little scary for mama. But she is doing well just very tired.

We were thrilled to see our old crew, as we were on CICU for a short period of time. Great to see faces that we love and feel comfortable with.  We thank everyone there for the great care and feel that Dr. H was very thorough and did well helping us understand everything.  We appreciate all the love and prayers and please continue. Justin and I are happy that she improved a little and are hopeful that we can provide this medication and help her life. We don't know how long we will have her, so we take it day by day. Some people may think that seems harsh, but in reality in our lives you have to be prepared for anything. I will try to keep everyone posted, she and I are starting school in a few weeks so things will get busy again soon. Love you all!