A bad day

Ok, here is what we know… the bacteria that is causing this infection is the same one that caused the last central line infection, not good news.  Four weeks between infections is just not normal, nor is it acceptable.  The original plan was to salvage the current line since it is not that old.  However, today changed all that.

This morning she was just not as perky as she was yesterday and she was laboring a little bit to breath.  At rounds we talked about really staying on top of her pulmonary status and making sure that it didn’t get worse.  The plan was for me to go ahead and go home for the day and the docs would call if they needed me.  The other problem discussed at rounds was that one of the cultures had started growing yeast but at that point this morning, everyone was hoping that it was a contaminant.  So, I left at about 12:20 knowing that she was in good hands with Steve.  I was 20 minutes down the road when the hospital called and said that Keyan’s temperature was starting to rise, but everything was fine.  I continued on my way.  Five minutes later, the hospital called again to say a second culture had also grown yeast, which meant it was a true infection.  They were consulting infectious disease and would call me back.  By the time I made it to watch Jamahl dive, Keyan had a temperature of 104.7, heart rate between 180-200, and was in distress.  I decided to watch a little diving and than go back up to the hospital, knowing that nothing happens quickly at a hospital.

Just as I was leaving to go back, the hospital called and said they were taking her into peds sedation to remove the broviac and place a different kind of line right then.  The ICU doctors would call me when she got there to get verbal consent.  I drove as fast as I could safely go, knowing that she would want Paul and I there, but that Steve is such a comfort to her.  Just as I was pulling into valet parking(because that is the closest way to get there), the doctor called.  I was literally throwing money at the valet girl, money was flying everywhere and Paul was just headed in.  It was quite the scene.  We ran to the sedation room and went over everything.  I think Steve was relieved to give the responsibility over to us!

So, at the end of the day, Keyan now has a second infection that must be treated with a different type of IV medicine.  Her broviac was pulled and replaced with a CVL, which of course you can’t go home with!!!  If everything stays smooth, she will get a third kind of central line on Friday with the plan being to come home as soon as we are out of the woods infection wise. This is not what we wanted to happen.  Yeast infections can be hard to treat and very stubborn.  The next 24 hours will tell us more about how the infections are progressing and what our new plan will be.  Besides the fevers, the most disturbing thing for me is that her tummy is extremely distended.  We have stopped all tube feedings and are hoping that her tummy will start to go back down but it looks like she is about to explode.  She is uncomfortable, requiring a little bit of oxygen, is tired of being poked and prodded, and just plain feels crummy.  But, as soon as she had come out of sedation, she asked to watch a movie (her coping method of choice) so I know that my girl is still with us! 

Thanks to all of you who took my frantic phone call today to tell you about the situation.  I didn’t feel so alone!

Not even 48 hours later

Keyan came home from Mary Free Bed Friday evening.  She was so happy to be home and basked in the family life. Saturday was a gorgeous day that we spent lounging around in the morning and spent the afternoon by the pool.  Keyan put her feet in and laughed and laughed at the other kids jumping in and splashing Grammie.  Poppie kept filling a water gun for her and she thought is was hilarious spraying Mommy.  The seven of us ended the night having dinner at the Chinese restaurant where Keyan wheeled her little wheel chair all over the place showing off her new talent.

Unfortunately, through the night Saturday, Keyan spiked a fever that our nurse battled all night long.  We continued to monitor her in the morning but knew that we were headed back into DeVos Children’s hospital eventually.  I took her later in the afternoon where she again spiked a very high fever. They admitted us to our “home” on the 9th floor.  We were not even home for 48 hours.  We are all very devastated.   I used to pray for healing, patience, strength, and endurance.  Now, I pray for this just to stop. 

This morning it was confirmed that the cultures from both lumens of her broviac central line as well as the regular blood draw are all growing bacteria.  She is once again septic.  We will not know what bug it is until tomorrow and at that time we can put together a plan of how to manage it this time around.  She was started on some big gun IV antibiotics and we will wait for the cultures to continue to grow and show us more information.  Her body is tired, her spirit is even more so, and I am so scared that we are doing so much emotional damage.  She begs to go home, she yells for the germ bugs to go away, and she cries every time the doctors leave the room.  This NEEDS to end.  Of course, the rest of the family is in no better shape.  The other kids are suffering, my poor husband is beside himself, and my parents are living a nightmare that no grandparent should have to live.  Somehow we are all putting our feet in front of each other but that is about all we are managing.  I expressed all of this to the team of doctors this morning in tears and I believe that they are on the same page.  They know that she is suffering emotionally and the doctor said he would do everything he could to have us out of here by Friday.  At this point, we have to assume some risk to take her home but I think in the big picture, it is our only choice.  Of course, I am not getting my hopes up…there are a whole bunch of other doctors that have to sign off on it!

Anyhow, that is the story for now.  I will update again as we have further information.

If all goes well…

we will be discharged Friday in the late afternoon!!!!  I am so excited and when I told Keyan she threw her hands in the air and shouted “yeah!”  I think the doctor was a little taken back but he agreed that it would be fine.  I told him that if Keyan were our only child, we would stay until they kicked us out, but that is just not the way it is.  The therapies have been amazing and everyone has gone out of their way to help us figure out different accommodations for various things.  We will still be coming back 2-3 times a week for outpatient therapies and clinic appointments but at least we will be able to have dinner with the family and sleep in our own beds.  Anyhow, just a quick update to share our exciting news.

Finally, an update!

I am so sorry that it has been so long since I last updated. Our days are busy but progress is slow so there isn’t a whole lot to report every day. Keyan is working so hard that by four in the afternoon she starts to get a little crabby…a mommy does too I think. Her days are filled with therapies, playing, crafts, movies, and chasing the bigger boys around the hall in her wheelchair. It is so funny to hear her little voice “screaming”, “I’m going to get ya!”, as she goes tearing down the hall with me trying to keep up with the IV pole. it is quite a sight. It has been very encouraging to see her make friends with all of the other kids, never discriminating based on age, abilities, or anything else.

One of the best things about being at a rehab facility versus an acute care hospital is the ability to go outside! Keyan is never thrilled about it because we don’t usually get a chance until her crabby part of the day so the wind is always bothering her and she just wants to watch a movie, but it is amazing how a few minutes in the sun can refresh my soul.

She is to the point where she is alternating between using the walker and the gait belt. Her balance is still an issue but she is learning to correct it herself. Her endurance needs to continue to develop and than she will be able to do more on her own. While talking to the physical therapist today, he said that it will likely take months before she is able to do all types of different terrains by herself, but that summer is the best time to relearn this type of thing because the outside lends itself to natural challenges.

I end my post with a couple of sleepy pictures. She works so hard during the day that I can’t help but capture these restful and peaceful moments. She is such an amazing little girl and it has been fun to see her leave her heartprint on a whole new group of people. God gave us such a special angel, and people surrounding her can definitely feel it.

Last night, we were woke up at 1:30 in the morning due to a tornado drill! We all had to move out into the hallway until the weather advisory had cleared. It was completely insane, but Keyan slept right thru it...that is how tired her body is. Healing take a toll on her that is for sure. Think of us tomorrow because we have a big team meeting in the afternoon to update on her progress and to talk about a discharge date….I will keep you all posted!

one week later

We have been at Mary Free Bed for one week and Keyan has received 7 very full days of therapy.  She is making nice progress, even if it isn’t as quickly as I would like.  She is walking without a walker, just needing a little support with the gait belt.  She is bending part way down and transferring objects from one place to another.Her standing tolerance is coming along also…she is able to stand for 30 minutes with  minimal support.  We are not to the point where she could just stand and not have someone with her but it will come eventually.  Occupational therapy is working on using both hands instead of forgetting she has a left on, brushing her teeth safely, and several other things.  Speech is working on following commands, remembering age appropriate games,and only talking on her exhale…since getting sick, she wants to talk on both her inhale and exhale…give it a try, it is actually really hard but it is not the correct way.  Every day brings at least 4 hours of therapy and lots of new goals and improvements.

There are some other things that are happening that are very exciting.  First of all, she got new orthotics which she has needed for several months.  She choose pink ones with butterflies and they seems to help with her balance.  There is also an engineering group that has taken on her backpack as a project.  They could not believe that she carries that much weight on her back and they were very excited to work on making it better for her!  I am trying not to get my hopes up, but we have exhausted every avenue that we know to get a better supportive backpack and have not gotten very far…this is very promising!  Lastly, while we are here, they decided to offer her a manual wheelchair to use that she can learn to maneuver by herself.  This will give us a better idea whether or not it is time to move in that direction.  It is the cutest little wheelchair and she can actually get it to move down the hall and reverse it.  She is still working on the turning but it is awfully cute!

The therapy dogs came to visit last night and Keyan was scared out of her mind.  However, her friend “R” moved his wheelchair right next to hers and held her hand..it was so sweet.

By the end of the night, she let “charlie” put his head on her lap and was laughing at the tricks that the dogs did.

As you can see, we have been busy getting stronger and building relationships.  However, we did have a scare this morning.  Right as I was leaving to go watch Jamahl swim, Keyan had another seizure.  It wasn’t as massive as the one 4 weeks ago, but still worrisome.  The fortunate part was that the doctor was standing right in the room and saw the whole thing.  He let our neurologist know and so hopefully we can once again try to figure out what is going on.  I am very worried about why this is all happening and would love to understand why her brain is misfiring.  Here is hoping we can get some answers!

In other news, Jamahl had his first swim meet of the season today and he did awesome!  He took three whole seconds off of his back stroke time and qualified for the “A” meet with his back stroke time.  He also was in two relays that took first place and third.  It is so fun to see how much he has improved in just a short time.  We are so proud of him!

Just a few pictures

Doesn’t this one just melt your heart?  There is a teenage boy here who has cerebral palsy and he has taken a liking to Keyan.  He is a very nice young man and is very concerned about her.  Keyan just loves him and this picture shows why…he makes her laugh!  She was cracking up at him today.  He plays little games with her and sings songs.  It is really neat.

This other picture is of her practicing standing.  Boy, is it hard to watch but every day brings more strength.  This picture is especially for my family…notice the book she is reading?????  She loves to go to the therapy room because they have her favorite book there!  Hey, whatever motivates her!

Mary Free Bed

I know that I keep saying this but I need to keep this short because I am extremely exhausted.  With a new hospital comes new monitors and pumps and they just kept going off last night and I had no idea what was even alarming.  Now that I have my bearings a little bit, tonight should go much better and I really need the sleep.

We left DeVos around 11:00 Thursday morning with lots of well wishes and a few tears mixed in.  I was very anxious that morning and Keyan would talk all about getting to leave the hospital but would not talk at all about going to a different one.  I was really wondering if we had made the right decision.  It would have been so easy to just stay there until she was able to get stronger but we knew that wasn’t the right thing to do.  So, we packed her and all of our stuff into the ambulance and away we went.

We sort of got cheated with the whole room situation though…when I came to take a tour they showed me a double room that was going to be our but it would remain private.  That would have been great because I would have had an actual bed to sleep in, the room had a beautiful view, and it would have been more spacious.  However, an actual private room opened up and we were put there.  Not a whole lot of space, looking into a service parking lot, and I have to sleep on a cot that sinks in the middle.  It does have more storage space than our last room so I am trying to stay positive.  As you can tell from the picture though, Keyan settled right in to the new room and likes it because the TV is bigger and they get more channels!  Plus, you can actually go both up and down on the channels and not just up!!!  What a bonus.

After we saw a few therapists, nurses, and the doctor, she wanted to get to the play room…she LOVES it.  She loves the activities, toys, other kids, being out of her room, and the extra stimulation.  Even when she was so tired today, she did not want to rest, she wanted to go to the play room.  As you know, this was one of the highlights for us about coming here was that she does not have to be in isolation so she goes all over the place.  It has really helped her spirit.

Today she stated therapy at 8am and got in 8 different sessions by 3pm.  It is such hard work for her but she keeps on at it!  The therapists and nurses are very nice and are trying their best to learn Keyan and figure out all of her medical needs.  Keyan is not their average patient so this has been a learning curve for all of us.  The have been great about asking questions and not just acting like they know everything.

Overall, we are adjusting quite well.  They keep Keyan busy enough that the down time we use for resting and than the evenings she spends socializing with the other patients.  It is a lot more relaxed than an acute care hospital so we can go outside, wander the halls, ect.  Paul and the kids came up and we had pizza delivered and all ate in the playroom.  It was so nice.  The average patient that is here right now is middle school and high school boys…Keyan thinks they are hilarious and they take me right back to my teaching days.  They are all here for various reasons: surgery recovery, spinal cord injury, broken ones, or trauma, but the ones that we have met are all vary friendly and positive…they are a lot of fun and their favorite thing to do is to just about give me a heart attack by popping wheelies in the wheel chairs.  They all are very inquisitive about Keyan and can’t believe that she doesn’t eat anything by mouth…they can’t imagine!

To end, I must say that I have said many times that I can only hope that our family, especially my kids, are better people for having Keyan in our lives and having different sorts of life experiences.  I saw tonight that they are well on their way. All four of my other kids came into this hospital tonight, went into the play room and never thought a single thing about the boys who talked differently, were in braces, wearing casts, made funny noises, or anything else.  They talked with them, laughed with them, played with them, and treated them as equals.  They were completely comfortable with all of it and as a matter of fact, didn’t even seem to notice.  I was so proud of each of them!

Well, I must get to bed..therapy starts again in the morning…seven days a week to help her gain her strength to the point that she can safely return home!  We can’t wait.

A very busy day

Ugh, I sit here trying to wrap my head around the day and it just gives me a massive headache. After some further miscommunication with the operating room, she finally got into surgery around 10 this morning. They placed the broviac on the left side of her chest, took the PICC line out of her left arm, and took the skin and muscle biopsy from her left thigh. She is experiencing some discomfort from both the broviac site and the biopsy one, but we are able to keep it under control with some Tylenol. I am so glad to have it all behind us. We will of course be anxiously awaiting the results form the biopsy, but they could take anywhere from 7 days-6 weeks! Nothing like keeping us in suspense.

Soon after she was back up to her room, we started working out all of the details for her transfer to Mary Free Bed. I actually went and took a quick tour of the pediatric floor, they even have her room waiting for her! Yesterday I was so excited about going, but today I was dealing with a lot of anxiety, worry, fear, and wonder. I wish I didn't have to do this by myself, but after being over there, I feel better about the whole thing. It is a smaller floor than the one we are on now, but it has a very large playroom and therapy room right on the floor. The staff was very friendly and overall, I think things will be alright.

So, as long as everything goes as planned, the ambulance will be here to pick us up at 10:30 tomorrow morning. There have been hundreds of intricate details to work thru but I think we have done it. I was pretty emotional today and I couldn't really put my finger on why. While Keyan was taking a late nap this evening, I found some time to give it some thought. Keyan and I have spent more time on 9 center in the last 10 months than we have at home. I have made some very real friendships over the last five years and it is always a little sad to say goodbye, but this time has been different. We have been in crisis mode for most of our three week stay here. The nurses, doctors, therapists, aides, and volunteers have walked right beside me thru the whole thing. The have been scared for us, and scared themselves when Keyan had her seizure and continued to act so not herself. The staff here on 9 center see trauma, sickness, and pain everyday, but they have not lost their compassion. They have cheered Keyan on while she was trying to use the walker, and than looked at me with tears in their eyes, because they felt my frustration and pain. Why am I emotional about leaving tomorrow? I am leaving my support, my cheering squad, my advocates, my "peers" in this medical life, and my friends. I am going somewhere where they don't know Keyan and all of her quirks (and mine for that matter!). I have to prove myself to another group of people, I have to earn the respect of a whole new team, and I have to open myself up in order to gain their trust. Boy, I sure hope I am up for the challenge! I am hopeing for great things. Off to a new adventure!

no surgery

I am just signing in to let everyone know that Keyan did not get her surgery today. Because of some major traumas and overall delays, Keyan's surgery was later and later into the day. By the time we got down to the peds holding area, the surgeon realized that it was too late in the day to do the muscle biopsy because someone has to be in the lab to receive the biopsy right away. Luckily, they discovered this BEFORE they took her back for sedation. I could tell that the surgeon really wanted me to just postpone the biopsy to a later date but there was NO WAY I was letting this opportunity go....so, we are on the books to be in the OR first thing tomorrow morning. Hopefully, this time is a go! Keep us in your prayers again please.

YEAH!!!!!

I just wanted to quickly update on our situation. After much distress last night, as I finally closed my eyes, my prayer was this, "God, if Keyan is supposed to go to this rehab hospital, you are the one who will have to make that happen. Please let this bacteria be our guide. If you want her there, open all the doors wide open and make it happen...it is beyond me!" This morning, before I was even up and around, an e-mail had been sent from the doctor to the infectious disease person, who than sent an e-mail to the admissions lady at Mary Free Bed and everything has been cleared for Keyan to go to intensive inpatient therapy. She needs a private room, but other than that, she will have access to ALL common areas, and be treated no different. I have verified this with Mary Free Bed, and they said, yes, everything is moving forward for her to come "as is"! The preparations are underway for a transfer on Thursday. We are so hopeful that this session of rehab will open pathways for Keyan that she has never been able to do herself. I firmly believe that she will come out of this not only "tuned-up" but stronger and more able bodied than before. While I wish we were just going home, I am putting that aside and am now excited and hopeful to see Keyan world open up to her in new ways.

To top it all off, she is headed to surgery at any moment, but we just got word that the neurologist has added on a muscle biopsy to the agenda. We could not be more thrilled. We have been asking about this test for the last year and have been getting no where. Today, the nurse practitioner just walked in and asked if we would be open to the testing....open, we are ecstatic! The results are not definitive but should at least give us a few more answers and guide us to further needs. They will be testing for mitochondrial disorders as well as some other things.

Anyhow, a much happier post as we head off to surgery...I will post again when things are settled down. Thanks for all of your encouragement. It means a lot.

At the end of the day...

...we don't know a whole lot more than when we started. How frustrating. I am not prepared to go over all of the details of our meeting with Mary Free Bed, but I will say that no decisions have been made and we are waiting on further information from them. We waited all day for the doctor to show up so by the time he did (after 6:00) my nerves were all ready on edge. Basically what it comes down to is that he could feel Keyan's muscles resisting his movements and that she definitely requires a really good "tune-up". However, due to a bacteria that Keyan has colonized in her body, the doctor was unsure if they could provide services for her. Here is the bottom line....before he walked into the door, I desperately wanted him to say that she did not need their level of rehab....after he stood and told us that she most certainly does, but he is unsure if he could give it to her, I wanted to scream. I am so angry. Again, to protect Keyan, I am leaving a lot of details out and I am sorry, but getting this response is not what I was prepared for. The doctor is going to talk to the infectious disease people at Mary Free Bed, and hopefully give us some more answers tomorrow.

Speaking of tomorrow, Keyan is scheduled for surgery to put her broviac back in tomorrow around 1pm. I never thought I would be so happy to get a line put in, but the one in her arm has got to go!!! It is impeding on her movement, coming loose, and just plain in the way. We have the best anesthesiologist taking care of her but please keep us all in your thoughts and prayers. Our strength is dwindling--and I do mean everyone--myself, and the rest of the clan at home. I apologize for the gloom...some days it feels like the world is caving in....and tomorrow, I will find my hope and be renewed.

Very Quick Update

****I wrote this last night but blogger was down...

Before I go to bed, I wanted to let everyone know that the ballet recital was wonderful. I will post more pictures when I have them available, but the girls did a fantastic job. Lots of smiles from Abagayle, McKenzy knew every move (evn though she never pays attentions), and Sidney was busy keeping the whole group in check. She even pointed to one little girl and motioned where she was supposed to be! They were beautiful in their costumes and so fun to watch!

I am not sure what is going on with our camera...sorry that the pics are so grainy...I had better look into that when I get home!

On the Keyan front, tomorrow she will be evaluated by Mary Free Bed Rehabilitation Hospital to see if she will be needing a short stay there for intensive inpatient therapy. I have VERY mixed feelings about it, and a lot of people have some pretty strong opinions on it, so it could be and intense meeting. Obviously, I would love it if the doctors just said they didn't think that she would need it, but I have to be prepared for them to say she does...which comes with tons of questions and even more decisions. We need a lot of wisdom and guidance as we navigate this potential new path. That is all for tonight...I am exhausted, and going to try and catch a little bit of sleep. Here is a happy picture to sign off with.

Up and at ‘em!

When Keyan and I were woken up by the student nurse this morning at 7:30 after being up on and off thru the night, I stared at her with great disdain and thought that I would write a post about “a day in the life of a hospital stay.”  Luckily for you, Keyan did something much more exciting so I will have to save the venting post for another day.  Check it out!!!

She was walking with the assistance of a walker!  It worked pretty good because it took the balance issue right off the table.  It has wheels in the front so she doesn’t have to lift it and she did fairly good making it go.  She walked to the nurses station right outside her door…by the time she got there, I thought she was going to pass out, she was staring and looking a little peeked but after a short rest she made it back to her room.  She was very proud of herself and loved the attention that she got from everyone who saw her.  Obviously I am thrilled to make this progress and continue to have faith that we are on the road to recovery,even if it is a slow one.

Paul and the rest of the kids came up to visit and it was great to see them all.  The kids LOVE to eat dinner in the cafeteria, but every time all six of us go down there I end up having a major anxiety attack.  The kids are running from this thing to that trying to decide what to have, running into everyone else along the way.  Once we do decide, we end up with 500 Styrofoam containers and that is before getting everyone their drink.  Then we have to pay which is a nightmare because everything has to be rung up individually and half the stuff has to be weighed…of course the kids don’t know that and I haven’t caught the fact that they put weighed stuff in with non-weighed stuff…the cashiers are always SOOO pleasant thru the process, so by the time we pay the million dollars to eat the crappy cafeteria food, I am sweating and just about in tears.  Of course we can’t forget the thousand times we have been asked if the girls are triplets… “they are actually quadruplets, but the other sister is here at the hospital and so everyone is here to visit.”  That is my pat answer which of course is not good enough and leads to 50 more questions all while I am trying to keep track of the kids who are hovering over all of the desserts!!!!  I am sure it is quite humorous to those watching but you get my drift…

So, tonight we decided that it would be better for Mommy if we ordered take out Chinese and had it delivered.  A volunteer stayed with Keyan and we all head down to the back entrance to pick up our food.  A very nice Chinese gentlemen pulled up, we signed the credit card receipt, he commented on all of our kids, we grabbed the food, and made a beeline for the cafeteria.  Paul was getting things arranged while I got drinks for everyone when I see Paul walking toward me with the bag of food.  “What is going on?”  To make a long story short, someone else had ordered Chinese takeout from another restaurant and we had gotten their food.  OUR restaurant driver had called to say he was at the back entrance waiting with OUR food!  Can you believe it?  What are the chances?  In the end it all worked out but talk about chaos!  If you know me at all, you are not surprised because my life is full of these crazy things happening.  Abagayle was sure it  was because we did not speak Chinese and wondered why we spoke English…and further more, maybe they should learn Chinese instead of Spanish at school!  She cracks me up!  One thing is for sure, there is never a dull moment in our crazy lives!

A few days

I am so happy to report that we have seen such a difference in Keyan over the past couple of days.  She has all sorts of weird things going on physically, but every day we see more and more of her personality, and I can not be more thrilled.  She is talking, counting dominoes, reading her books, and making more eye contact with us all.  Yesterday she was even crabby in the afternoon and was asking about going home….it means so much that she cares!!!  I can honestly say there is a side of me that is so relieved to have her talking and laughing with me again that the rest of the stuff just takes a back burner.

However, I can’t let the physical stuff stay in the back of my mind for long because her muscles and brain need so much therapy.  She continues to struggle with the strange movements of her body and she has very little strength or coordination and that is still heartbreaking.  She is determined to stand up by herself but only ends up toppling over into our arms.  I believe that she will be running around on the playground again, I really do, but once I again, I stress how absolutely hard it is to watch.  She is struggling with pain and can be overly emotional.  She spent a large portion of the night crying….she realizes more and more what is going on.  She understands that her body “feels funny.”  She looks at me with the look of desperation that only a chronically ill child can give and asks about going home.  She knows her body is tired and that at this point, even her strength cannot will her body into compliance.  I wish beyond anything that she did not have to go thru this…I wish none of us did.  I would do anything to take away the pain, all of it, mental and physical, but as we all know, that can not be done.

So, we wait….I hope that the next few days continue to bring healing to her body.  I hope that she gains enough strength to renew my hope in an absolute and complete healing.  I pray that she is comforted by my hugs and that she really hears my voice telling her how brave she is.  I beg that she is able to fight off the demons of discouragement and fear and that every day brings more and more sparkle to her eyes.