Cincinnati

I apologize for taking so long to update the blog upon returning from our trip to Cincinnati.  I know that many of you have been waiting to find out how things went.  I have been busy processing it all, and discussing what it all means with Paul.   I have to say a huge “thank you” to my Mom, who made it possible for Paul to go with us this time.  It would have been twice as difficult had he not been there listening to the doctors, asking questions, and helping me give all the details of Keyan’s health history.

So, what did they find?  To sum it up, the doctor told us that 99% of kids with chronic GI and metabolic problems have something wrong wither anatomically or structurally.  At this point, they can know with absolute certainty that Keyan does not fit into that 99 %.  Boy is that a surprise!  Her problems are not caused by a structural problem, so that leaves all of the “exotic” disease.  And yes, he used the word “exotic”…not the greatest of terms in my opinion.  So, now they will do their best to figure out what rare disease is causing our precious girl to be in her current health situation.  We will not put her thru a ton of invasive procedures, and the doctor reassured us that doing so would not be necessary, but it could be a long haul.  All in all, I would give just about anything to have a diagnosis, and was discouraged to not get one.  However, I am trying really hard to be positive and be thankful that at least the doctors are not giving up on her.  They are still willing to keep seeking out the answers.  Obviously, our greatest fear is that we won’t figure it our before the next onslaught of infections.  The bottom line is when a child is TPN dependant, with a central line, infections are part of the deal.  Luckily, for right now, we have the infections under control but the reality is that it is just a matter of time before they rear their ugly heads.

The plan for now is to put her food back to 7mls/hr for a couple of weeks to try and reestablish a base line and maybe get her potassium back under control. (For those that don’t know, it has been running low again and we had to make a trip to the ER for a bolus last week.)  After that, we will trial a new medication which if it happened to help, would direct the doctors to some rare disease.  If it doesn’t help, than we move on from there.  We should not have to return to Cincinnati for a couple of months which will be really good on our time and budget. 

So, for now, we keep living this life, fighting fires, trying to keep things balanced, enjoying life outside of the hospital, and just being a family.  Meanwhile, the doctors follow all of the rabbit trails until we can hopefully find the right one.  Dear God…grant us patience, and please, I beg, keep our girl safe.

A kindergarten fieldtrip

Yesterday the girl’s class went on a field trip to the “Post Family Farm.”  They had actually been on this same field trip when they were in Pre-K so they were the experts for the day.  Mom and I went along to chaperone, and boy did we have fun.  We went on a hay ride out to the pumpkin patch to choose “the perfect pumpkin”, we listened to “the pollination story” (very interesting for five year olds!), ate fantastic pumpkin donuts and apple cider, and visited the farm animals.  It was fun watching the girls with their friends and getting to know the other kids on their class. Between Jamahl and the girls, our kids have been on this field trip four different times..it was sort of sad to realize that this will be our last time.  Oh well, off to bigger adventures I guess!

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A day at Ludington State Park

We had a great time spending the day with my parents, brother, sister-in-law, and our niece up in Ludington State Park.  It was really windy but the sun was shining so we found spots to get out of the wind and had a great day.  We watched people trying to catch Salmon, we had a picnic lunch in the dunes, climbed and ran all over the dunes, had ice cream, visited the cabin that Grammie and Poppie were staying in, and ended the night at the Mexican restaurant.  It was one of those days that makes you stop and count your blessings.

Ice Cream Social

We had a great night at Cold Stone Creamery raising money for the Make-A-Wish foundation and gathering together with our friends and support team.  This is our third year to go to this event and we have always used it to celebrate how far Keyan has come in the last year.  It always means so much to see the people turn out to give Keyan a hug and show us that no matter how busy everyone gets, they are still pulling for our little girl.  This year was no exception!  We had a great night with family and friends.  It was a great reminder that we are not alone in this journey!

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A night with Duff Goldman-the cake guy

***This blog entry was written by my guest blogger, my husband!  Thanks Paul for taking the kids to the event and thanks even more for sharing it on the blog!***

We were very fortunate to be invited to this exciting event. It was Hospice of Michigan’s 30^th birthday and Duff from Ace of Cakes was the guest speaker (and cake maker for the event). Honestly, no one really knew what to expect for this outing. It turned out to be really fun and the kids, myself, and my mother-in-law Gayle had a great time. Unfortunately, due to Keyan’s planned trip to Cincinnati Children’s Hospital, Keyan and Stephanie weren’t able to attend.

Stephanie and I made a decision the last time Keyan was in the hospital to talk with hospice. This was after one of the doctors from Mary Freebed had suggested it. While this decision is controversial in many people’s minds and hearts, we were very scared with her last admittance. She was very ill and we had a lot to cope with. We started to wonder how we were going to deal with the possibility of Keyan’s mortality and this is when we decided to talk to hospice. Sheila was our case worker who came to talk to us and we went over many difficult things, but in the end it was very good. Stephanie and I have a little better grip on the possibility of something going really wrong. Hopefully we will never need to engage hospice for Keyan, but they are there for us if needed. It is a terrible thing to have to think about so I will spare you the rest of the details. Just know it has been difficult to think about and deal with.

When we arrived at DeVos Performance Hall the people at the front door were very nice, although confused about some things. We were shown back to the room they had set up for Pediatric families connected to Hospice. It was an awesome setup. There was food from Panera Bread and lots of fun activities for the kids. Once the kids finished eating we broke out the crafts and the kids decorated their baker’s hats. They also decorated cookies with frosting and sprinkles. McKenzy ate the frosting as soon as she was finished decorating the cake. No need for a cookie at all! Abby was teased by the clown for how her name was spelled. He said “With two b’s in your name it is pronounced A-B-B-y. She laughed and had fun with that. Jamahl made a helmet from his hat instead of a hat. Star Wars in mind, no doubt. Sidney was her quiet self, but laughed at the clown and had fun with the activities.

Then Duff arrived! First thing the kids said is “He’s shorter than mommy!” This was pretty close to true. I think he might have edged her out by a little bit, but not much. He was very laid back. He went around to all of the tables in the room and made a point to talk with every child. Very kind! Finally he made it around to our table (the last one he had to stop at, of course). He came and shook my hand. I quickly explained that Keyan and Stephanie were not able to make it and he said he was sorry to hear that. I asked him if he would let us take a picture with all of the kids. “Of course!” he said. I even got in on the action. All I can say is Duff is a nice guy and very kind to do what he did with all of the kids at the event. He spent more time with the kids than he did with the big wigs that spent hundreds of dollars to get into the VIP room. This says a lot about his character to me. The last thing he said to me was “Good luck with all of that!” , meaning four girls in a house all the same age, at the same time. I laughed and said thanks. I will probably need it as the girls get older, buy honestly I do feel lucky. It isn’t easy, but it is rewarding.

One of the most touching, but difficult times of the night was when the CEO of Hospice, Dottie Deremo came and introduced herself. She asked how we were connected to Hospice, and I explained our situation. She said she was sorry that we had to meet due to Keyan’s situation. She shook my hand, but in the process she said “Do you mind if I give you a hug? It seems like you could use one “. I almost lost it right then and there. The real crazy thing about it was the Ariel song “Part of your world” was being played at that moment by a small band in the corner of the room. This is Keyan’s favorite song in the world (as most people know)! At that moment I missed Keyan and Stephanie so much. Needless to say, Dottie was right. I needed a hug more than I knew. Not easy for a guy to admit, but it put me at ease about being there without them.

Then we went into the auditorium and listened to Duff talk about his career and his life. He talked about how he got into the business and shared some funny stories about his life and his philosophies on work. It got a little long for the kids, but it was entertaining for the adults in the audience. Duff has lived an interesting life so far and it shows how sometimes people find the path to their perfect job. He is lucky to have come across this in life and he doesn’t let it go to his head. He seemed like an average guy who likes to share his life with everyone. Not really any different than you see on TV. It was very cool to be able to meet him and hear his story. While I’m not an avid fan, he turned out to be a great person! The kids loved the night. Unfortunately we didn’t get a chance to have cake. It was already 8:30pm and the kids were wiped out by this time. We decided to take them home and get them to bed. They talked about the night all the way home. It was a great night out and wouldn’t have happened if Keyan wasn’t in our lives!

The Melting Pot

Keyan and I were so glad to be home but I was pretty depressed to wake up Saturday morning to thunderstorms.  BUMMER!  One of the nice things about Cincinnati is that it was still in the mid eighties and sunny!  We used the day to clean up the house (even under the girl’s beds!), do laundry, unpack, and catch up on Mommy being gone.  I was feeling somewhat frustrated though at our lack of something to do.  I have written many times about the limitations we have not only because there are so many of us but mostly because we have a child who is medically fragile.  We can not just pick up and go spend the night at a hotel, we can’t go to Crazy Bounce or the Aquatic Center, we have weather limitations, temperature limitations, and just plain ‘ol energy limitations.  Don’t get me wrong, I think we do a pretty good job at keeping the kids busy and exposing them to as much as we can, but some days, it is just depressing to realize that this is not how you envisioned your life….basically, I was having a pity party for myself…and it felt sort of good!

 

The kids had been very hungry for fondue which we make here at home every once in awhile so I was planning on doing that for supper but as I thought about the shopping, chopping, cooking, and cleaning that was required, it made me even more depressed.  That is when we decided to treat the family to a restaurant in Grand Rapids called “The Melting Pot”.  We put on nice clothes and went and had a four course meal that was all fondue…although it was all VERY good, I could have just had the chocolate dessert fondue and been just as happy!  The kids tried a bunch of new foods including sushi grade tuna, lime chili shrimp, Asian dumplings, ect, and we all got to spend three hours experiencing something new and enjoying being together as a family.  And don’t have a heart attack..we called ahead and did some research on the menu and while it is not a place that we could afford to eat all of the time, we managed to do it fairly reasonably all things considered.  It felt good to be all cozied into a booth, laughing, talking, and reconnecting after Keyan and I had been gone. It may not be a typical family outing, but it was a great family outing for the Hogan Clan!

 

 

 

And just in case any of you are worried about the fact that Keyan doesn’t eat…she did just fine using her fondue forks as drum sticks and telling us all knock-knock jokes…she cracks herself up!  She doesn’t care what she is doing, as long as she is not stuck in a hospital room!

Home!!!

If nothing changes, we got the word this afternoon that we could be discharged tomorrow!  I can only hope that everything is smooth sailing thru the night and we can go home.  The last four days have been difficult on Keyan both physically and emotionally so it will be a relief to have it behind us.  The physicians and I have done a lot of testing, information gathering, getting to know each other, hashing things out, and sizing each other up.  Trust does not come inherently in situations like this, from either side, so we have had several discussions just feeling out our similarities and differences.  I am sure that they have seen my stubborn side, but hope that they see that the stubbornness only comes in advocating for my daughter.  I have learned a lot about myself in the last week. I have been pushed to my limits emotionally and have done hours of soul and heart searching.  This team needed to know where we are at as parents.  They needed to know that we will not give up on her, but we will not let them do do things just to have something to do….it is a fine line to understand and seeing that the social worker came into talk to me after I asked them not to advance her feeds, I am not sure they totally understand our take on things.  That is alright.  My number one priority is Keyan, not pleasing the doctors.  The GI doctor and I had a good discussion about our desires.  We did not come here to advance her feeds without reason.  We have done that for the last three years.  We know what it does to her and how it makes her feel.  Without a definitive change or understanding of what her body is doing, we will only be advancing her feed VERY slowly.  So, that leaves us at the point where we can go home.  We are making a few changes tonight with her TPN and are keeping our fingers crossed that it goes alright.  The results from most of the testing will not be back for 3-4 weeks so we will come back at that point to discuss what they have found.  The neurologists were in and asked a ton of questions and observed her for quite some time and they will also be conferring with our admitting doctor adding their thoughts to the mix.

This was a necessary step of exploration on the road to discovering the nuances of Keyan.  It was difficult, but good, and boy am I glad it is coming to an end.  I have learned that it is easy to advocate for Keyan when it is with people whom I know, but much harder to stand up to people that I don’t.  I have learned that despite that, I will do what is best for my daughter, putting aside my fears and placing her needs above all.  I have learned that my husband and I have a strength that only comes from trials.  It feels good to be united in thought with him because we are the ones that God has commissioned Keyan to.  I have faced the sight of my daughter “checking out” to preserve her soul and while that makes me really sad, I am also so proud of her coping techniques.  She is an amazing little girl who has challenged me and changed me into a better person. How lucky am I?