Wednesday, September 28, 2011

Caleb's last week with us


Caleb went in on August 18th to have his tonsils and adenoids removed.  He was also going to have a bronchoscopy & endoscopy done.  We had to cancel this surgery several times over the past year because he wasn't at his best to have it....UTI, platelets, etc.  Finally the day came to have the surgery & he was starting to have more difficulty breathing at night.  Steven & I knew that going under anesthesia was a big risk, so we talked in great depths with all his dr's & anesthiologists on our concerns & to give him the best possible chance he could have.  Just a side note, Caleb did really well during the days and at night only needed blow by oxygen.  He had had approx 6 sleep studies to determine the severity of his obstructive apnea.  He would have approximately 49 episodes an hour.....extremely severe.  Rarely would the monitor ever go off.  An in depth sleep study is necessary to determine true apnea. 

The day of surgery, I snuggled with Caleb in the bed in pre-op while daddy sat by our side.  My parents and our other boys sat in the waiting room.  Doctors were in and out discussing & preparing for surgery.  We all felt it was time to do this surgery.  Without it, his body would continue to decline bc apnea at this level puts a strain on the heart, lungs, etc.  Shortly after 8:30 he went off to the OR.  We waited with family in the waiting room....impatiently.  Jacqui, with the Ocala Star Banner, was in the OR for the majority of the surgery, documenting this part of his journey.  The surgery took about an hour 1/2 & I got calls from each of the drs saying he did really well & was going to recover in the OR....someone by his side at all times.  They always took extra good care of him.   He was extubated fine...looking around, resting.   His endoscopy looked great & so did the bronchosocopy.  The main problem with his airway was the small jaw that sits back (like most of our babies)  At approximately 2 1/2 - 3 hours later his heart rate went to 225, his blood pressure and o2 sats stayed fine. His EKG showed he was having a myocardial infarction (heart attack).  They had to reintubate him.  We were not told of the MI until after they brought him to the PICU.  The Dr's wanted to make sure that is in deed what he had before saying anything to us.  It just didn't present as what they "normally" see.  Two yr olds just don't have heart attacks...usually.  Our hearts just sank.  They told us the left side of his heart wasn't squeezing & that they decided not to do a heart cath bc he couldn't handle any more sedation/anesth.  I am SO glad that they didn't.  The treatment would've been the same anyway.  We also found out that they didn't remove the tonsils bc they were hardly even there??  That was a surprise & a blessing.  It meant an easier time reintubating & less source of pain & infection.  We were prepared to be there at least a month.  They brought in so many pumps for meds...rows and rows of them.  We knew this was going to be a long process, a huge fight for our lil' man.  We fought right along with him.  Sleeping together on a small chair bed...waiting for him to wake up.  He was having s t depressions on his ekg which meant that there was damage to the heart.  They monitored those closely & we waited for each result to show they were going down.  PTL, they were improving, his blood gases were great, they were weaning him off meds, his platelets were fabulous...we all celebrated cautiously, we didn't even share this with anyone bc we knew we were still in a critical situation.  We talked about getting a trache to help him get off of some of the meds bc he was blowing through them like tic tacs. And he needed to not work so hard so his heart could heal.  Steven & I felt comfortable with that.  We were now waiting for him to get to a point where he could undergo this surgery.  One evening when Dale, the night nurse came in & asked "where's his s t depressions?"  Steven & I were confused.  Dale hurriedly changed the probes & went back to look at the paper tapes of his heart rhythms for the last 24 hours.  Sometime around noon that day, there was about a 3 second gap where the s t depressions just disappeared.  Dale said he had never seen that happen before and Steven said " write GOD in that time period".  We were over joyed...cautiously. 

There was a brief period that Caleb opened his eyes and daddy got to read him a book...Caleb watched & listened...this was the last time we got to see our baby boy interact with us.  He started having trouble keeping his o2 sats up and they had to keep bagging him.  His sats would come up briefly...the time inbetween started to become shorter.  That sunday he had a seizure.  I suggested that maybe he was having seizures & that's why he couldn't keep his sats up.  The medical staff was just as baffled...they were willing to look at anything and was going to have him hooked to a 24 eeg the next day.  Monday morning the 29th of August, he just couldn't keep his sats up.  Christina his day nurse tried so hard to help him through his discomfort.  She had to call a code bc his o2 sats went down to the 20's.  They bagged him yet once again & gave him some meds to get him back up.  I knew it was time to call the family.  I couldn't breathe.  Our Pastor, friends, family, Pediatrician, all came to be with us.  The cardiologists, other dr's told us he was having pulmonary hypertensive crisis' and they were going to start nitrous oxide to help open things up.  He shortly after went into another crisis where his o2 sats were at 0.  I about fell to the floor & the air was knocked out of me.  We asked them to silence the alarms and give us our time. 

I crawled into the crib with him we were surrounded by everyone & his pediatrician started us in singing You are my sunshine....I just couldn't let him go.  I wanted my baby back.  But I knew he was tired.  His o2 sats couldn't stay up. They were dangerously low..the machines were keeping him alive. He was cold so I snuggled into him even more. I talked to him and told him how much we loved him & how proud I was of him.  That it was ok to go Home.  For him to please watch over us, to keep mommy keep our fight up.  We were so tired.  I asked God to let us have one more nap together.  All of a sudden his o2 sats went to 91, the highest they had been in days.  His eyes opened briefly and they were as beautiful as I knew them to be..not the red, dazed look he had had.  He rubbed his nose, his usual quirks...and we napped briefly.  After a while he closed his eyes, his sats went back down and stayed at 20 for a long time.  My baby was gone.  It was time to say goodbye bc Jesus was already holding him tightly in His arms. 
Dale, our nurse was so wonderful.  He handled everything.  He had them come in to make molds of our son's hands, the foot was done prior to him passing.  He put it in a beautiful box.  He helped Steven bathe Caleb one last time and even held him & cried.  Caleb touched his heart, even in the short amount of time he knew him.  Caleb was so very loved.

I see God's hands guiding us through this whole experience.  People have often asked me if maybe we shouldn't have done the surgery.  He would've struggled without it...we believe the episodes he was having the last couple of months prior to surgery were ph crisis'.  I think God once again placed us where we needed to be, together with our son to be with him as he was called Home.  If this had happened at home by myself or with the kids, it would've been devastating.  We don't have all the answers...but I guess that is what walking by Faith means.  We have to make the best decisions we can with the information we have.  We knew Caleb's ph wasn't good and something had to be done.  Heart surgery wasn't an option bc of the obstructive apnea and ph.  If we had done nothing I think we would've been filled with regret.."what if only". 

Pulmonary hypertension is something that many of our children have but isn't discussed much in info about t18/t13.  I want to bring more awareness to the issues of obstructive airway issues (determined by sleep studies) and pulmonary hypertension. I think that Caleb had a good life bc we had such proactive and compassionate drs.  Sometimes the best that we can give is comfort care bc there is nothing more that we can do.  That doesn't mean we don't fight for our children.  It just means that we understand that there are some things that are out of our hands & we have to feel blessed by what we are given.  It is hard.  I miss him more than you could possibly imagine.  A part of me is forever gone...but I am so grateful that God held us through this.  I pray for each and everyone of my friends that are walking this same journey.  I am here for you if you have any questions.  I will answer anything you would like.  There are several things I have left out bc of the details...but will talk in private.  I love you my have changed my life....I will see you again one day.

Monday, September 26, 2011

M.O.M.S grand opening

Memories of Missing Smiles had their grand opening today. It was amazing...a beautiful place for us to remember our lil' ones. We bought a Caleb tree by the water fall so we can go and picnic and share special moments.  I can't wait to decorate his tree with some pretty flowers. 

Friday, September 23, 2011

This video was done by a dear friend of ours, Michael Robinson.  Thank you is beautiful...perfect.

Tuesday, September 20, 2011

...we'll always celebrate you

The 20th of each month won't be celebrated by birthdays anymore. God is holding you now. But we will forever celebrate this special day by remembering the amazing life you lived and all the joy you brought us. You even brought us the rain.......

Sunday, September 18, 2011

Celebration of Life

We wanted to be able to share Caleb's Celebration of Life with all our friends and family who were not able to attend in person. It was an amazing service, we truly felt like it spoke of Caleb's life perfectly. I want to thank Pastor Mike Austin and our CenterPoint family for making Caleb's day so incredible...indescribable. And for everyone involved in making this download possible so we can share. Thank you Dr. Kern's (Caleb's Pediatrician) for giving such a beautiful eulogoy for Caleb, he truly loved you...he had no doubt of the depths you would go to for him. Susan, your words spoke volumes for our T18 family...for Caleb....thank you. Thank you to everyone who made Caleb's Memorial so special...a day fit for the Mightiest of Mouses....we love you all. We love you son. You are missed more each and every day.

We also have a copy of the slide show that was playing on the back screens...I will try and get that up soon.

Friday, September 16, 2011

Our Special Necklaces

We bought necklace urns so we can always have a small part of our son with us wherever we are....close to us.  Our boys wanted to get a way this weekend & it's breaking my heart that Caleb cannot be here laughing  with us.  But I know he will be watching and playing right along with his brothers from Heaven.  And I have a lil' part of him to hold when the tears just don't want to stop falling.  Pastor Mike also said a Blessing over our necklaces last night.  Oh, I almost forgot...when we pulled into the parking lot of the hotel tonight it started to has been clear and dry all week.  My lil' one must've been saying hi :)  Goodnight sweetness....I'll meet you in my you.

Caleb has come home

Caleb finally got to come home. We thought it would be really hard, but there was actually an overwhelming feeling of peace. We had never been apart from him that long and it was so comforting to have him with us again. I was able to hold him love on him. Then Pastor Mike came over and prayed over Caleb & our family, as Caleb's earthly body was to be put to rest in our home. We had family around us, it was a beautiful moment. We shared memories, we cried, and we laughed. Thank you Pastor Mike for all that you do to help our family find peace in such a difficult time.  A dear friend of mine, Chontee, will be helping me sometime next week to decorate Caleb's Memorial Cabinet...I can't wait to make it look as beautiful as he was...always will be.

Wednesday, September 14, 2011

My Caleb's work isn't he showed me today

During Caleb's last moments I layed next to him & told him that he needs to make sure to come down & give me a swift kick in the bum every now and then. That we still had work to do & I can't be laying around crying....(eventhough I could probably fill an ocean with all the tears I've cried lately). We've been working so hard at advocating for special needs children on the medical & financial aspects of life. So we chatted a while & I know he was listening....eventhough there was no sign of him being a part of this earth anymore. Well, this morning I got a call from a gentleman with the FL House Health & Human Services Access Committee in Tallahassee. He said that one of our Representatives that we have been talking with contacted him about Caleb's story & what we have done these past 2 years in trying to make changes. We talked for quite some time about the lack of services there are for children & families like ours, etc. He said that he would like to talk more & I asked if I could call in a couple of weeks...need to try & pull it together. He also asked if I would be interested in going to Tallahassee to tell our story & talk about what changes we think are needed. Of course!!! I was so glad to get this call today. That's my Caleb giving me a swift kick...telling me to get moving. I so miss & love him...I pray that I can continue to do his work and make him proud.

Sunday, September 11, 2011

Sent from Above

I've been having a really hard time these last couple of days. Just can't stop crying. Steven goes back to work tomorrow & I think that has lead to some of my tears....I'm going to miss having him here with me. He has been right by my side crying with me...and sharing moments of laughter, remembering our precious lil' boy.

This morning we went outside to have our coffee. I sat next to one of our penta plants. It was beautiful out. Tears just kept falling. Suddenly a beautiful monarch butterfly landed on one of the flowers. He hopped around from flower to flower for about 15 mins...never leaving my side. We chatted for a while...I was telling him how beautiful & perfect he was. Then he started flying in circles around me then flew off as I stopped crying. I had my hand laying flat on my chair & a small butterfly landed on the palm of my hand. It stayed there for about 5 mins & we chatted too. I wondered who had come to visit. Was it one of Caleb's friends or family members coming to let me know he is ok? I'm going to believe that it was :) Then I started crying again as it flew away. Suddenly the monarch appeared again next to me in the penta plant. We sat a lil' longer daddy & I were both crying....but tears filled with some joy. We believe Caleb is around us always.....our hearts still hurt to not be able to hold him..but God sends us lil' gifts that bring us a touch of happiness. Love you so much Caleb...can't wait to see what tomorrow brings.

These pictures are from his Celebration flowers I took today...wish I could keep them forever...they were so beautifully done.

Thursday, September 8, 2011

Just a hard day.....

Today has been a really hard day. Steven & I got up & started working in the butterfly garden. It was full of butterflies, the wind was blowing & the sky was blue. I knew Caleb was with us...bringing us all of these beautiful things. I just wished I could be holding him watching the trees sway & the butterflies buzzing by us. Steven & I ran a couple of errands and I just couldn't stop crying. He just held me. He is such a wonderful husband...I thank God for bringing him into my life. It's nice that we can be standing in the middle of Walmart just holding each other & there's no one else in the world :) I need to write about Caleb's final days...but right now is too hard. I will soon...