Boys and Girls Night

Several months ago, we bought tickets for Jamahl and Paul to see the Star Wars in Concert show.  Jamahl has been counting down the days, and even hours until the show.  In case you don’t know, Jamahl is a Star Wars fanatic…ask him anything about any of the movies and he can tell you more than you would ever care to know!  Our nurse Steve also went and from what I hear, they all had a great time.  Steve has most of the pictures, but he did send this one while they were there.  Jamahl told me that he got to see the real Chewbacca suit, three different kinds of storm troopers, C3POs suit, a Yoda puppet, and lots more.  The narrator for the show was the guy who played C3PO and Jamahl thought that was VERY cool.

So, while the boys were away, Grammie, Poppie, Mommy and the girls got dressed up and went downtown to a fancy restaurant for dinner.  The girls did so good, that Poppie stopped for ice cream afterwards.  We all practiced our good manners and trying new food.  I think overall, it was a successful night.

Quality

Today was a day full of adjustments for all of us.  It is interesting how the kids still go to my mom for everything despite the fact that I am sitting right there and poor Keyan is having a difficult time not being the only child.  Of course, it is just as hard for me trying to transition from sitting in a very quite little from for two months to the “chaos” of family life.  But, despite all of that, we had a great day and made sure to live it to the fullest.  Abagayle is camping overnight with one of our angels, Grandma Gretta, and Jamahl spent the evening with a friend, so that is why they are missing from some of the photos.

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I was determined to get Keyan in the pool and that we did.  We wrapped all of the IV connections in tegederm and we double bagged the backpack with all of her stuff in it.  She was so happy.  She would like to be in the water more, but with the central line, this is as good as it is going to get, but I do think that we did a pretty good job, if I do say so myself!  We had to deliver some medicine out to Abagayle at the beach, so we had dinner out there and went for a walk.  Keyan had so much fun maneuvering her wheelchair.  Look real close and you can see that my friend Debbie brought her some little gloves to use when she is pushing the chair by herself.  She loves them and thinks that they make her go even faster!  I realized today that although a lot has changed in the last three months, we are adapting to those changes and trying to embrace life. The days will not always be as carefree as today, but we will meet them all head on!

Home!

Keyan and I made it home yesterday afternoon!!!  We are both so excited.  She slept the whole way home, but when she got into the house, she immediately sat down in front of the doll house, pulled all of the pieces around her, and began playing.  It was so great to see.  She played there for quite awhile and than spent some time downstairs with Grammie and Poppie.  She is currently sitting in her bed surrounded by books and stuffed animals.  I think she is glad to be home!

In other exciting news, we finally heard back from Cincinnati and we have an appointment scheduled for July 22.  They are still hoping for a cancellation so that we can go next week, which would be the safer route, but we will aim for the 22nd if nothing else.  It will just be the one day, but we will see a couple of different doctors and spend most of the day in the clinic. We are working on freeing up both Paul and I to go and are clinging to the hope that they have some answers.  Now, we just need to keep her healthy until than! 

So, back into the swing of things, with some new meds, new IV meds, lots and lots of appointments to get to, but doing it all at home!  What a great feeling.

A new “life”line

It is 8:35pm and we just brought Keyan back up to her room after her surgery to get a new broviac central line placed.  The surgery went well overall and due to an emergency surgery before ours, the anesthesiologist that has done all but one of her sedations was able to make it here and do this one also.  I am sure the day will come when he will be unable to be part of one of her procedures but I was thankful that it was not today.  There was some concern about whether or not that would be able to get good venous access but in the end, they were able to insert the catheter on the left side of her chest and tunnel it out at the center of her chest.  Strange, but functional.  At this point however if we can get the access we need, that is what we will do.  She is still sleeping from sedation in this picture, and I know it isn’t easy to look at , but this is her life and I really want to share the realities of it.  I am just thankful that this surgery is behind us!

As long as things stay stable tonight, there is no reason that we should not be able to go home.  Just the thought of it brings tears to my eyes.  I miss my husband, my kids, my parents, and even the dog!  I am exhausted from “sleeping” on my pull-out chair, have heard enough Barney and Dora to last a lifetime, and am totally sickened by cafeteria food.  Most of all, my heart yearns for some normalcy for Keyan.  Again I am amazed at how my outlook has changed just in the last 2 months.  I clearly remember my thoughts the night of May 19th after she had the first seizure, and my thoughts today are so vastly different.  I long to give her a different life than the one she leads in the hospital and am seeking out ways to give her the quality back into her days. 

As far as a second opinion, there are several people working on it, but for some reason, we are having problems getting Cincinnati to call the doctor back.  I feel better knowing that our GI doctor here understands the urgency and also wants her seen by someone in the next week…I just desperately hope that we can make that work.  It is all SOOO overwhelming, but I know that someway, somehow, all of the details will work out and it does me no good to stress about them right now (much easier said than done)!

As I end, she is still sleeping comfortably, her blood pressure is a little low, but nothing alarming, and I am overcome by too many emotions to speak of.  Thanks to everyone who has called, sent cards, sent gifts, visited, prayed, and just kept us in your thoughts.  Please continue to do so, I have a feeling this is just the beginning of some very difficult decisions!

A good day

Today was a BUSY day but a good day overall.  Paul was able to come up for some meeting this morning about Keyan’s overall health picture and finding her a second opinion.  I was so thankful to have him here and am so grateful for a husband who is an active partner in this crazy ride.

Immediately after that, my best friend Gretchen, her mom, and kids popped in for a quick visit.  We were able to eat lunch together, and the kids cheered Keyan up quite a bit.  It was fun to see her light up when she was interacting with them.  They shared hugs, laughs, and even a quick movie…Keyan’s favorite distraction!  My bestest friend in the world will be moving to Maryland so this quick visit was bittersweet….not sure when we will see each other again, but thank goodness for cell phones and the internet.  Quite a different world from when she moved to Ecuador when we were in third grade!!!  I love you guys and am so thankful for your visit.  It means so much to have someone to cry with!

And to top it all off, another dear friend surprised me with a visit as well this afternoon.  She has walked a very similar path to the one we are currently on so her ear gets probably gets pretty tired from me talking so much! I can say things to her that not many moms understand…what a blessing!  She brought Keyan a bag full of goodies with an extra special surprise for her.  I finally have it up and working so I can’t wait to let her try out the new “toy” in the morning!  All I can say, is that it will make Keyan’s days just that much better!  Thanks my friend!

Tomorrow brings a rescheduled audiology evaluation in the morning and surgery to put a broviac back in at 3pm (hospital time that is!!!).  Please pray for her as she is sedated and pray that things will go smoothly.  I will update when we get back to the room and she starts to wake up.  The best news of all is that we are aiming for discharge Thursday or Friday!!!  I can’t wait!

A weekend break!

Many of you know that I was able to sneak away from the hospital late Friday night and I did not return until this afternoon thanks to great friends and even greater parents. The nicest thing my mom said to me when I called this morning was “I have no idea how you have done this for so long!” It was so kind of her to acknowledge the difficulty of living in the hospital 24/7. We had a really nice weekend all things considering. We had perfect pool weather, so on Saturday, I made it my mission to never leave the pool and it was a mission accomplished. We ended the day with smores by a fire. Besides the obvious emptiness of not having Keyan there, it was a birthday day full of relaxation of fun.

Basically, the rest of the weekend was the same. More pool time, kids learning to swim without swimmies, my favorite foods, sleeping in my own bed next to my great husband, snuggles with my kids whom I miss so much, trying to find my place back in the family temporarily, hashing out Keyan’s situation, and just taking a short reprieve from our crazy life. it was really nice.

Before I left on Friday, I “snuck” Keyan outside for 15 minutes or so. It felt so great to me, but unfortunately, she gets used to being inside that she is pretty grumpy about the brightness of the sunshine, and doesn’t really enjoy the breath of fresh air like I do, but we did it anyways! This picture was basically the only smile I get while we were out there. The rest was crabbiness….understandable when you look at her situation but it makes me sad none the less.

This next picture can sum up Keyans life of fighting through life-threatening illnesses. She tries her best to smile thru it all and not let on how miserable she is. We often comment on what a trooper she is but sometimes it just breaks your heart. Here you can see she is bruising VERY badley where they took the old broviac out and where they put the temporary central line in (the pics do not do it justice). She has NEVER bruised like this before and while not worrisome to the medical staff, it worries me because it is just another thing that is new. However, despite how sore her entire chest was, she still smiles for the camera. That sums up Keyan’s life. Smile thru it all and keep LIVING thru this infection. She has an undeniable strength that we can all learn from and the willpwer to keep battling this life that she calls her own. Amazing!!!!

This week should be a busy one. She has a hearing test scheduled tomorrow because she did not pass a hearing screening while at Mary Free Bed. Hopefully, that will turn out OK, we don’t need new issues! Then sometime this week she will go into surgery to have a new broviac placed. After that it is crunch time for a second opinion. We need one and we need one NOW. We can’t wait or she will just be sick again. Please pray that we have clear direction on what to do about all of this…it is a lot of big decisions! Enough for now…I hope you had a great holiday weekend. Here is to a productive and busy week!

Oh, by the way, it seems that all of the IV meds are doing there job because she is feeling more and more like herself. She is talking more, bossing more, and feeling more frustrated about being in the hospital...all good signs!

Another rough day

I am not sure what to write, so this may end up being a bunch of rambling..if so, I am sorry.

Nothing went right today.  I really wouldn’t need to write any more because that sums up the entire day.  Keyan continues to fight diarrhea, low grade fevers, her stomach is very distended, and she just feels an overall crumminess! The infection disease doctor came in this morning to tell me that the cultures had grown to the point that they could tell that the antifungal that they started yesterday for the yeast is not the right treatment.  The type of yeast she has is resistant to the more common therapy, that means that she went 24 hours without treatment…not the news we were hoping for!  No wonder she is still feeling yucky!  We have the right medicine going now, so it should start making a difference.  So, because yeast is so persistent, and she was untreated, she needs to have an echo done of her heart, a kidney ultrasound, a dilated eye exam, and a urine specimen by catheter.  these are all done in case the yeast has “landed” other places.  Some of it was done today, some will not be done until next week.  Which brings me to the other bad news….because we do not have negative cultures yet and she does not have a line that we can go home with, we will have to stay here until the end of next week….also not the news we wanted to hear!

We also got word that the insurance company has denied our request for additional nursing hours.  They are willing to send out skilled nurses to check her vitals, but not a nurse to actually take care of her.  I told them that could take their offer and do you know what with it.  I need help, not another appointment!!!  I HATE insurance battles. 

Let’s see, what else?  My birthday is Saturday, and once again, I will be at the hospital….the 4th of July is my favorite holiday, and we will spend it here.  But, what can we expect?  We have spent plenty of holidays here, and I guess if Keyan can spend her birthday here, why not me?  Those are just the facts when you spend more time in the hospital than you do at home.

I guess that the hardest thing to hear today was that several of the doctors feel that this cycle of things is just showing us that Keyan’s intestines are failing.  No one knows why, no one knows what to do about it, no one wants to talk about what that means, but none of it is good.  I fear for the day that she can not fight the infection off.  That is where we are headed if we can’t get further answers.  Basically, we need a second opinion, another set of eyes and brains.  We have our approval for outpatient appointments in Cincinnati, but she has to stay healthy enough to go.  The reality is that we have been trying to get there for three years.  Paul and I are doing a lot of brainstorming on our next step in the whole thing, but none of the decisions are easy.

So, I rambled long enough…not a whole lot of emotions because I can’t even go there right now.  This is tough…very, very tough.