Every Second Counts

You know that show 24. The one where Keifer Sutherland saves the day one hour at a time.  Everything is in slow motion, and your really not sure what's going on until the very last seconds of the show.  I felt like that yesterday.   Not the save the world part, the realization that every second counts.

Kamryn has a routine.  She gets up, I change her diaper, she has a bottle and takes her medicine.   Later a shower, her hair is fixed and heart beat monitored, then her temperature taken. So yesterday she didn't really want her bottle.  She laid on the couch, as I tried to convince her into taking the bottle.  I realized then, her eyes had shifted to the right and she wasn't responding to my voice.   I placed my hand on her chest, and desperately tried to make my self heard.  After about a minute she came out of the episode and was better, but tired.  She then did it again 10 minutes later.

We needed to be at the church for VBS and so we showered, fixed hair, monitored her heart and temp and were on our way.  My very good friend Jaime asked as we arrived, "Is Kamryn feeling alright?" I try really hard not to be alarmed.  Drama is not where I thrive, it makes me crazy.  I asked her what she was thinking.  It was good to know I wasn't alone in my motherly instincts. 

We left the church and took Kamryn to he play group.  She was fully recovered by this time.  She then had another one, I think.  It's really hard to tell when your driving.  She didn't seem any different this time, so I took her into play group. I spoke to one of the ladies there and she was going to watch her.  It didn't happen again.

I called our pediatric Doctor.  He wanted the Cardiac team to weigh in.  Their thoughts were to have her seen by her peds doc and go from there.  Kamryn was squeezed into a very tight schedule.  Of course that's when my car wouldn't start, she was at school, and I needed my neighbors help.  With my car jump started, and Kamryn picked up we headed to the Doctor.  Mark in tow.  (poor boy)

At the Doctors office we discussed the episodes.  Kamryn had experienced MINOR seizures. These are not at all harmful to her.  She will need to have and EEG, and see a neurologist.  While her medication can cause seizures, it's not likely.  With everything she has been through this might be a left over brain trauma, related to her long stay in the hospital.  Again, not likely.  The possibilities are endless.  Will it happen again?  Possibly not.

After Kamryn's nap  yesterday she was fine and back to her exploring, sing song little self.   My heart jumped every time she went up and down the concrete stairs. As hard as it is, I have to let her explore, discover and learn.  (My fear is she has a seizure and falls.)  She has no idea how desperately I wish we lived in a plastic bubble. 

This was what I woke up to this morning.

 

Because Every Second Counts.

Kelli

 

Constant diligence

This last week Kamryn saw her Dr. for a fall she had taken while we were in Idaho and some imbalance.   The fall she took was scary,  but she recovered quickly and was cleaned up and returned to playing.  Her adults were almost in tears, and fearful of what could have happened.  She was fine, we were a mess.  (Mike was not with us in Idaho, and didn't know about the fall until we came home.)  A few days after arriving home I noticed her imbalance.  I made an appointment with the Dr.  We discussed her fall,  knew she didn't have a concussion, but were a little puzzled by the imbalance.  A quick look in her ears and the imbalance issue was solved.  She has a blocked ear tube.  Hooray for simple things. 

However, the same day she saw her dentist.  No cavities, but I asked a question.  "Is Kamryn's palate smaller than her lower jaw?"  The answer was, "Yes, and I would recommend you see your orthodontist."  A week latter she was able to see the orthodontist.  He made specific notes and recommended she see someone who could see patients with these kind of issues, that can be related to heart problems.  A children's hospital.   

Children's Hospital has trained me well.  I sent a message to them and to Kamryn's primary Dr.  There are several possibilities.  One of which is the pacifier, that comforts Kamryn, is causing the muscles to shape a smaller palate.  Other ideas are her ears, her adenoids, her familial genetics (small people) and a possible unknown syndrome.  While there are no syndromes currently related to non compaction, we may help discover more about non compaction. 

So what do we do about this.  Kamryn will be seeing a Cardiac geneticist, and possibly a dental specialist.  Will we start to widen her palate any time soon.  NOOOO!  She is to young.  The point of all of this is to discover as many of her medical issues as soon as possible, so that they can be addressed when needed. 

There are days when I could kick myself for asking so many questions.  Sometimes ignorance is bliss.  However, if this can help her grow to be happy and healthy, I'll do it.  I'm so happy she is growing and changing and beginning to spread her wings.  That little "run" of hers make me giggle with joy. 

So as we approach July and August, we will have several more appointments in Seattle.  It's standard procedure to do a neuropsychology evaluation after a transplant. She will have that in July.  August is a neurology appointment and then the genetic sometime in the near future.  Kamryn doesn't have to go to  the Cardiologist until September,  she is doing very well. No issues there. Hooray. 

Please pray that this issues for Kamryn's jaw are purely structural. That the neuropsych appointment goes well and supports the services she needs. That neurology will know what and where to look for signs of non compaction among Kamryn's other systems.  She continues to have no issues with her heart.

Thank you

Kelli

 

A weekend away with family...

Last week we prepared to go out of town.  For most people that means a suitcase and maybe a travel bag.  For Kamryn it means much, much more.  She of course has your normal baby stuff.  Diapers, wipes, bottles and a pacifier.  (We really need to get rid of the bottle and pacifier.)  But Kamryn requires 5 different medications, a stethoscope, thermometer, syringes for medicine, and the just in case stuff.  Like:  Ear drops for that ear infection she doesn't have, but could get.  I wrote lists, added to the lists and checked them just like Santa. Needless to say I over packed,  especially on the clothes part. 


It was beautiful....

We spend days on the Oregon Coast without jackets!  Here are some pictures.

 

We had so much fun!!!  Kamryn was such a good girl even with few naps and sleeping in a strange place. 

 

Prior to getting to the beach we visited the OHSU ER for what appeared to be a return of Kamryn's C diff.  The nurse gave us hospital grade bleach wipes to keep everyone else healthy.  Her test came back negative, however the symptoms remained the same.  With probiotics we made it through the weekend.

 

Kamryn was able to roll around and play in the sand. She laughed and giggled, playing with her siblings and her cousins.  The girls were an enormous help to me,  they took her and played, or got her dressed and fixed her hair. 

 

 

It was a very relaxing weekend.

 

(posted by Kelli on Lexi's site)

 

 





 

 

My belly hurts!

Kamryn has been feeling under the weather.  She got the cold that has been circling the house hold.  With a stuffed nose, coughing and little to no sleep she has been on edge.  On edge for her means, "hold you mommy". 

On Monday Mark saw the Doctor for ear pain.  She just had a cold then.  By Tuesday she was complaining, "Mommy my rib hurts."  With a 100+ degree temp, pain in both her ears and her side, I decided to make have her seen by the Dr.

In his office, she filled her pants.  When I changed her I noticed blood in her stool.  This wasn't blood from a large bowel movement, this was blood from her intestinal tract.  Something was wrong.  Labs were drawn, stool delivered and we waited. 

Finally, we had and answer.  C Difficile toxin.  By this time, Wednesday, Kamryn is feeling better. The question is do we treat a child that feels better?  C Difficile is a bacteria in your intestines.  Its there with all the other bacteria.  When the good bacteria is wiped out, say with an antibiotic, this bacteria can take over.  In the average human not a big deal, it's rarely even treated. 

Kamryn is not your average human being. Immune suppression means she doesn't fight things like the average person.  Most parents can take their child to the Doctor get a diagnosis, a plan, medication and be done.  Kamryn can't.  I'm required (gladly) to share everything with the transplant team.  Nothing is done for her without their approval.  Certain medications make her anti-rejection drugs ineffective.  So the question was, do we treat an child who feels better?  That question was posed to an Infectious Disease Doctor.

Thursday night the question became inert.  She once again became symptomatic.  Complaining, "my belly hurts".  By morning she has double ear infection, blood instead of stool, and a cough that would break your heart.   I was on the phone with her doctor and she was being seen as a work-in, with the idea that she may need to be hospitalized.

As we waited in the Doctors office I called Cardiology.  The nurse and I discussed Kamryn. Is she drinking , is she peeing, how is her over all well being?  My opinion was she wasn't sick enough to put into the hospital.  I was to have her Doctor call the Cardiology Doctor and discuss her care. 

I am pleased to say Kamryn is at home.  She wasn't admitted to the hospital, and is being treated with a medication that wipes out this bacteria, and possibly her anti-rejection medication.  She'll have to have more blood work next week to check levels. 

I feel very blessed that Kamryn is able to be treated at home.  Blessed too, that I can weigh in on her care and be heard. 

She hasn't said her belly hurts today.  That's a good thing.

Off

Today Kamryn seemed off, her lack of bounce, her need to be held and her complete compliance were clues.  It could be her ears, or something else.  We are only 6 days out from Cath Lab, which went pretty good.  There is no sign of rejection, the arotic arch is growing both from the donor and the native side.  It's still miss shaped, but it's functioning correctly.  I am fully aware of how quickly a little one can go from good to bad. My choice is to always error on the side of caution and go with my gut.  So I made her and appointment for a potential ear infection.  

The appointment was an hour and a half from the time I made it.  As I hung up the phone, she vomited all over me.  After a quick shower for both of us, our second one today, her hands started turning blue, and her feed didn't turn pink immediately after touching them.  Her chest was pink and she looked fine. 

It the Dr office her oxygen saturation levels were low and her heart rate was high.  A different pulse ox and warm hands changed the sat readings and the heart rate.   The doctor then examined Kamryn.  As he listened to her heart, he heard a murmur. He asked me about it, I thought she did have one.  In one thousand healthy kids 800 could have murmurs.  60 of those could be from birth defects the rest are benign and more than likely will go away by the next visit.  Dr. F is an amazing Dr.  What he heard wasn't alarming to him.  We finished our talk and I took Kamryn home.  It wasn't until I got home that I realized I didn't know if Kamryn had a murmur before. So as every  heart mom does, I called her cardiologist.  There response was really are you sure, we need to call him. 

The Drs talked.  The murmur is in her pulmonary artery and not a concern.  The blue hands and low profusion is probably dehydration and I'm to follow her symptoms. 

As I said before her primary Dr is amazing.  He called me last night after work and talked with me for about 20 minutes.   With the procedure last week there could have been a possibility of endocarditis.  Invasive procedures sometime allow vegetation to grow in the heart, that creates symptoms such as murmurs, fevers and swelling. 

We are confident that Kamryn doesn't have endocarditis.  The murmur isn't in the right place, there are no fevers or swelling.  She is good.

There are times I feel guilty for pushing my child into an already crazy schedule.  Not this one.  The key is to go in prepared with observations, and be ready to defend those observations. 

Cath Lab

Yesterday, we were at Seattle Children's Hospital for Kamryn's Cath Lab.   This is a yearly procedure that measures pressure, looks for rejection and over all health of her heart.  It is a long day full of waiting, entertaining a 2 year old, and speaking to multiple doctors, nurses and staff. The hard part,  letting a very sleepy, pre medicated baby out of my arms and into the arms of the anesthesiologist.  Prior to her departure Teed Nail prayed for all those involved in Kamryn's procedure. 

We then went to have breakfast with Teed.  The pager around my neck reminded me of the seemingly  unending days when the hospital was our home. It felt heavy and burdensome.  Then it rang,  I just about jumped out of my own skin.  Not because it startled me, but because of the memories of a day just 2 year ago.  The day my sweet baby got her new heart.  That day the pager would ring when the surgeons wanted to update the family on the progress during surgery.   Yesterday, as we reached the surgery desk, we were greeted by a smiling Doctor.  The surgery went very well.  Her heart looks good, the pressures have improved and he was excited to tell us the news. 

Later the pager went off again,  the nurse wanted the mom.  Kamryn was in tears, disoriented and just plan mad.  The little hoarse "hold you"  just about broke my heart.  But I couldn't hold her.  She needed to lay flat for 4 hours after the procedure.  So I laid across her bed, singing in her ear, holding her and stroking her little head.  She calmed and was ready for the ECHO, EKG and Dr Law. 

Kamryn's condition prior to the heart transplant is a rare form of cardiomyopathy. Non compaction is not a well studied or understood disease.  Kamryn has gross motor issues.  Dr. Law wants us to pursue more aggressively the cause of her delay.  Kamryn doesn't jump, go up or down stairs, or run and she falls frequently.  We will be seeing a neurologist and an orthopedist. 

Keeping a 2 year old quiet and unmoving for 4 hours proved difficult.  We resorted to almost 3 hours of Blues Clues, a dark room and lots of crackers.  The dose of Tylenol helped too.

Today Kamryn is back to her chipper little self, with a lot of clinging. We have nothing better to do today, but cuddle and watch some TV.  Maybe a nap too.  


Remember... our Blood drive

https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086


Thank you for your prayers. 

Psalms 111 1-4
Praise the Lord.^[b]

I will extol the Lord with all my heart
    in the council of the upright and in the assembly.

² Great are the works of the Lord;
    they are pondered by all who delight in them.
³ Glorious and majestic are his deeds,
    and his righteousness endures forever.
⁴ He has caused his wonders to be remembered;
    the Lord is gracious and compassionate.

Gifts (from January)

Welcome, I'm glad you stopped by. 


My blog posts have slowed down as our lives have sped up.  This month alone Kamryn has/had appointments, OT/PT, Doctor, Eye, blood work, and ENT. It has left us with only 4 days of "nothing scheduled" for the entire month.  If we aren't going to an appointment the phone is in my ear about an appointment, blood work, SSI, and medication refills.  Over all Kamryn is doing a great job of being two.  She is stretching her little wings and going to a class without mommy.  This is a big step for both of us really. 


Each person in Kamryn's life is providing her with a gift.  These gifts are of health, movement, site, hearing, and independence.  One of the gifts she received this month was the delivery of her medication.  A dear friend, working near one of the pharmacies we use, picked up the Rx and was able to deliver it to  us.  This gift saved me time, a trip and gas, Kamryn a car ride and a long nap vs. a short nap. 


While Kamryn was in the hospital waiting for her heart she received another gift.  With her hearts inability to efficiently pump blood and get oxygen throughout her body, a decision would be made to give her blood. After about 6 hours the blood would arrive and they would begin the 5 to 6 hour process of the transfusion. This small unit of blood would do miraculous things. It warmed her up, lowered her heart and respiration, the monitors on her head and kidneys would show improvement for oxygen saturation. Her color would improve a little, and she would begin to relax.  Her body didn't have to fight so hard.  This simple gift of blood gave her another moment, day and eventually a life time. 


I think of  a transfusion like this. 
Image your favorite cold weather drink.  Mine would be a cup of hot dark chocolate.  I hold that warm cup up to my face and feel the heat permeate my cold hands.  It's aroma fills my nose and senses with calm.  I give myself permission to sit and enjoy the flavor and aroma.   This simple cup of cocoa, gives me the gift of joy.


We are planning a Blood Drive with Puget Sound Blood bank for February 22, 2014.  You can sign up for this blood drive by using this site


https://schedule.psbc.org/DonorPortal/grouplanding.aspx?s=4086




Please consider giving someone the gift of blood through this Blood Drive. 


Thank you