Exhausted

Just a quick note.  Kyle is now starting his second day in the CICU.  He is very tired.  He is still in and out of it.  He doesn't remember everything and I am hoping that he won't remember most of it here in the ICU.  

They started the his anti rejection  medication yesterday.  He received his first dose of IV thymglobulin.  It is a very strong anti rejection medication which can have some severe side effects.  About 2 hours after he got his first dose he started running a fever which is one of the side effects.  The doctor was considering stopping it if the fever did not stop rising but luckily it did stop rising and although he still has a fever they feel it is safe to give the medication.  He will get the second dose today.  Last evening about the same time we noticed the fever we also noticed a change in his heart rate in that he was having some irregularity.  He looked to be in a junctional rhythm.  This was not a severe or unexpected occurrence.  He still has pace wires in so they just hooked up the pacer on him for a while to help his new heart out.  They said it occurs sometimes just because of inflammation of the heart due to the surgery.  This morning they have taken the pacer off again and he is back in a sinus rhythm.  The CICU doctor who was just in told me that his urine output has been down a little.  Kyle has been complaining of some shortness of breath and is having to have the head of the bed up.  The doctor said they would probably give some additional diuretics today.  Just another expected occurrence after heart transplant.  

I was finally able to get a little sleep last night in between the CICU alarms and nurses in and out.  Last night was definitely the most exhausted I have ever felt.  

Kyle continues to have a long road of recovery ahead of him. He keeps asking when can he go home and how much longer do I think it will be.  He is awake now so I am going to read him your blog comments.  He always likes to hear them.  Keep praying for him.  It is working.

  

Update

I will do my best to post about the day but it has been long.  I have been awake going on about 36 hours with out sleep so bare with me if something doesn't sound right.  

Kyle was brought to the CICU about 3:40 a.m. this morning.  They wanted to get him settled in his room so they had Kenton and I waiting in the little waiting room off of the CICU.  We had not been sitting there too long when a "CODE BLUE" alarm went off and people began rushing into the unit.  I immediately thought it was Kyle and broke down in tears.  The ward clerk tried to reassure me that it wasn't us but the tears still kept coming because it was still someone, some little child who was in danger.  Needless to say it has been a busy and rough day here for the staff.  They have worked so hard, especially Kyle's nurse.  This morning he had a little NG tube inserted for his morning meds.  He received 3  units of PRBC's so far since surgery.  He got a unit of plasma as well as the 8-9 he got with the plasma pheresis they did this afternoon.  His HGB was down to 6.4 this am and that is why he needed the blood.  He was looking quite pale.

He was suppose to be sedated but didn't cooperate well.  Anyone who knows Kyle knows how he has the gift for gab and he kept wanting to talk to us.  I finally gave him a pen and paper and he wrote, "I love you guys so much" and pointed back and forth to Kenton and I.  We were both in tears.  He hugged the night nurse good-bye and gave the day nurse a hug when she let him have ice chips.  He was pretty restless most of the day with all of the noise and things going on here in the unit.  This afternoon they took the breathing tube out and he is on mask O2 with the nitric oxide.  There was some concern early on about the amount of bleeding from his chest tube and the fear he would need to go back to the OR.  It has slowed down though. He has had sips of water and has been talking to us this afternoon.  Finally now he is sleeping well.

This experience has been amazing.  His chest looks smaller and you can not see his chest throbbing anymore.  We got a stethoscope and listened to the beautiful quiet and normal sound of his new heart.  For 12 1/2 years he has had such a loud murmur and now it sounds so healthy.  One of the night doctors told me I couldn't stop smiling this morning. I am so happy and excited.  For Kyle it has been a good but exhausting day.  

But there is a sadness in the air as there is in every ICU I have been with Kyle.  

I found this poem by Mattie Stepanek

which for a child I think best describes what it is like here:

Intensive Sense

In the PICU I see bright lights.

But there is no sun.

and almost a loss of time.

I hear machines alarming.

But though they are ringing warnings

Lives are not always saved.

I feel pain, intense at moments.

But I also feel the hurt of anxiety,

And neither anguish is good for the spirit.

Someday I will leave the PICU again.

I will see the sun,

Rising into new days.

But I will know it must set too soon.

I will hear music sounding 

Ringing from so many instruments.

But most of all will be memories of my Heartsongs

I will feel my spirit rejuvenated,

And I will be filled with hope again.

But I will feel a sad sense of loss 

For the children

who will still be with the anguish sounding loss of time.....

in the PICU.

Thank you for your comments and prayers.  We feeling so blessed that Kyle is doing so well.

Done With Surgery

The donor heart arrived about 11:25.  Kenton and I were sitting alone in part of the waiting room and heard the helicopter come and both wondered if it was Kyle's heart and it was. 

The surgeon, Dr. Huddelston, came out a few minutes ago to talk to us.  The surgery is over and Kyle is doing well.  The donor heart started beating right away and there have not been any problems yet.  They did bring back lymph nodes from the donor that they use to check to see how strong the antibody that Kyle carries will affect the new heart.  There was a glitch with the nodes that were brought back so they are unsure about how strong the antibody is.  More than likely he will have to have the plasma pheresis daily for the additional 5 days to be safe.  They have him on nitric oxide right now to keep his pulmonary hypertension under control.  They are going to keep him pretty heavily sedated for the time being.  He is on the ventilator of course and we don't know for how long. 

 

Kenton's family took Jess with them to go get some sleep back at the Ronald McDonald Apts.

My parents told me not to worry about them and they would be back in the am.  Not sure where they are staying and told my dad I didn't like the idea of him roaming around St. Louis in the middle of the night but I'm sure he will be OK.

Kenton and I are staying here.  We can see Kyle in about one hour.  I don't want him left alone and want one of us with him all of the time.  I am still wide awake but know I will eventually crash.

Thank you everyone for your prayers today.  We are very blessed things are going so well.

Keep praying for Kyle.  He still has a lot to go through yet but he is a strong boy and he has taught us all so much.

The Day is Here

At 8:21 this morning we got the call!  We were getting around to go to our clinic appointment with Dr. Canter and Kathleen the transplant coordinator called us telling us they had a possible donor heart for Kyle.  We had 30 minutes to get to the hospital.  Luckily, Kenton has been here the past few days with us.  We arrived at the hospital and Kyle was admitted.  They did a CXR and then took 8 vials of blood for testing.  The rest of the day went rather quickly.  About 1:00 pm we found out that the donor heart did have an antigen that Kyle has an antibody to so Kyle was going to have to have plasma pheresis before the transplant.  He was taken to ICU and another peripheral IV site was started.  He was sedated and a catheter was inserted into his left groin.  The plasma pheresis took about 3-4 hours. It basically took his blood and took out the plasma, gave him back the RBC's and then he was given about 9 donor units of plasma. The purpose was help him not reject the new heart.  Not all heart transplant patients have to have this done.  This is a picture of the machine. One special nurse is in charge of this process.

They had to monitor Kyle's calcium level frequently and at one time right after the process was started Kyle started having tingling on his chest.  They checked a calcium and it was low at 2.29.

Normal for kids is 3.9-5.1.  Immediately two doctors who are in charge of the pheresis were there and he was given additional calcium through his IV.

We were finished with this about 6:00p.m.  Kyle was then taken to the OR about 6:30 p.m.

Surgery was then delayed for a little while.  I was worried because at any time during this process they can changed their minds and decide the heart is not good enough.

At 7:57 p.m. Kenton and I kissed and hugged Kyle good-bye.  I told him how lucky I am to be his mother.  He gave me "Eskimo kisses" and they took Kyle into the OR. 

Luckily, my parents, Kenton's mother, his sister, Krystal, Kenny and nephew Kody, and our Jessica were here to tell him good-bye before he went to surgery.

The nurse just came in and told us that Kyle went to sleep very well.  He is doing well.  They made the first incision 9:07 p.m.  She said the new heart should be here about 11:00 p.m.

Thank you for all your prayers, keep them coming and I will update when I can.

More Pictures

 This is Kyle making out his Christmas List.  He did this on Monday. 

Here are some pictures of our little trees we put up.  Kyle spent most of last night decorating them.  We had some little ball ornaments that my friend from work, Beth Davis, sent us.  They were perfect for our little trees.  And Beth, Kyle used all of them.  Thanks so much for them and the fiber optic tree you sent.  I got him some little tractor and fishing ornaments too.  You can see one of the tractor ornaments here.

I was trying to talk some seriously sweet pictures of Kyle putting on  the ornaments but ended up with several comedy shots like this.  This is typical Kyle.  He is not too serious!

I got a surprise in the mail this morning.  When my friends, Brenda McQuinn and Sandi Walker were here to visit, Sandi had this cute purse that I just loved.  I was so surprised when I opened a package from them this morning with a purse like Sandi's in it. I was so excited!  Thanks girls!

Isn't it cute?  I think Sandi said they found them in Stanberry at some store there.  I so love it!

                                               Finally, a picture of our finished trees.  

I love decorating for the holidays but we are going simple this year.  If we are still waiting and not in the hospital by the weekend I hope to go to the St. Louis Science Center.  They are having a Children's Holiday Festival to benefit the hospital.  They are going to have 12,000 square feet of winter wonderland with more than 70 holiday trees decorated by the area's top artists and designers.  

Kyle still has his cold but no fever.  The home health nurse just left and thinks his lungs sound clear also.  Good news.  We are trying to have him take it easy today hoping he can get over his cold.  He is enjoying his time with Kenton.  It is amazing how close they have become. 

Other Weekend Visitors and Good News for Macy!

I wanted to add that we had other visitors this past weekend also.  Dean and Tam Meyer and their children came out to see us.  They too were headed to see the Spoofhounds play football at the dome.  Thanks so much for the visit guys!

Kenton made it out last night and we were so happy to see him.  These past 3 weeks have been the longest he and I have ever been apart.  Kyle was so excited to see him.  This morning they worked on Kyle's new puzzle together.  After lunch we went out to do a little shopping.  When we got back we took Kyle down to the McGift shop downstairs.  Every year at Christmas time any families who are staying here can go to the McGift shop one time to get some Christmas presents for free.  We let Kyle do his shopping for people he wanted to get gifts for and the volunteers helped him do the wrapping. I was afraid if he goes to the hospital soon he wouldn't be able to do any shopping for xmas and this way he would be done and feel good about it. 

Tonight we put up the little trees we got.  At home I usually put up a huge tree with the ton of ornaments we have collected over the years.  This year will be more simplified though.  Even if we would get to go home by Christmas I don't think we will put up the big tree.  Too much work.   

I went over to the house tonight and was told that Macy, the little girl from Omaha, who is living above us, got her new heart last night!  The person at the house said her family got the call about 7:00pm and her dad flew out here and made it to see her right before they put her under anesthesia.  She had her surgery during the night and was recovering this am.  I had to cry.  I don't know them well, but know she has been here since the beginning of August.  I was so excited I couldn't eat dinner!  I kept telling Kenton about what we needed to get around and ready in case we get the call for Kyle.  Pray for Macy that she has a full recovery and will get to go home before Christmas!  

On a side note, Kyle has come down with a little cold but no fever.  I called Kathleen yesterday and it won't affect him getting a new heart.  She said he would have to have a bad infection before it would stop a transplant.  We bought a humidifier for the apartment and are encouraging fluids, hoping that will help.  He is faithful about washing his hands and using hand sanitizer when we are out and about.

I will try to post tomorrow pictures of our little trees.  Kyle worked quite a while decorating them and they look really cute.

Busy Weekend

   We had several weekend visitors.  My step-sister Chris and her husband, Mike came out for the Maryville Spoofhounds game.  Their son, Brad, and their daughter, Mikayla also came along.

Mikayla is in the third grade at Jefferson.  She and her fellow students worked very hard on a fund raiser for Kyle.  They had a penny war to raise money.  They did wonderful and raised a good amount of money for Kyle's medical expenses.  Mikayla brought one of the penny jars with her.   I am not sure how she carried it because it seemed so heavy to me.  Her class won the contest.  I know she herself worked very hard collecting pennies.  She is a very special little girl.  We had a great weekend with them.  Mikayla's big sister, Nicole, couldn't come because she is is nearing her due date(xmas), expecting her and her husband, Chris's first baby.  We are all very excited for them.

Two friends of mine from work, Nancy Lewis and Barb Runde came out to see us also.  They brought us many things for us to use while we are out here.  They also had gotten on the Ronald McDonald website here in St. Louis to see what donations were needed and did some shopping.

This is them with some of the things they donated.  We helped them carry it over to the house.  The House was very happy to get the donations.

On Saturday we went to Hard Rock Cafe with them.  That was a place Jess has wanted to visit.

On Sunday we went to Dave and Buster's with Mike, Chris and Makayla.  After eating and playing some video games we said good-bye to them.  They took Jessica back home with them.

It was hard for Kyle and I to let Jess go back home.  It has been 8 weeks since we came out here and we are both getting homesick.  Kyle had a hard time the past few days. The good thing is that Kenton is on his way out.  Because of the snow back home he has a few days that he can't do a lot at home so is coming out to see us.  He wants to be here on when we go to the doctor on Thursday.  

The benefit in Bedford went well.  Thank you for all those who attended and participated, volunteered and donated.  My family said it was a lot of fun!