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

Slightly more complicated

Kamryn has had several ear infections.  The month long antibiotics took its toll on her tummy, her sleep and weren't always effective.  Her primary Dr and an ENT both agreed that she would benefit from ventilation tubes in her ears.  Several questions were asked about her cardiac status and her reactions to anesthesia.  It is good to say both are stable.  With her Cath Lab coming up it was  thought  why not do the procedures at the same time.  She would only be put under once for both procedures.  Let's do it.....


Screech...Her Cath Lab is scheduled for February 4th.  This means referrals need to be made, Cardiac and ENT need to coordinate, an appointment for ENT needs to happen before the new procedure can be added and ...   endless phone calls, emails and prayer. 


Cath lab is a scary time for parents of heart patients.  There are endless things that can go wrong, or news that can devastate.  But it can also bring reassurance that there are no problems, no rejection, no needed medication changes.   For most patients, Seattle Children's Hospital follows rejection with an Echocardiogram. They reserve biopsy to once a year or when needed.


Currently, the plan is to wait for the referral and then work Kamryn in for and appointment with ENT.  This means her Cath Lab may be postponed.  I hope not.  I'm praying for all to go smoothly and for her to have the procedures on the current schedule. 


This has become slightly more complicated, but it's manageable.

Gifts LIttle and Big

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


Kelli