Stuff I have Learned

Landon teaches me something new every day. Here are a few of the things he's taught me, in no particular order.

1. I can function on just a few hours of broken sleep.

2. I will stay in very uncomfortable positions for long periods of time if it makes him feel better.

3. Although I always said I wouldn't be a co-sleeping Mama (other than the first few months of his life), I have been sleeping with Landon at my side for the last two months. He feels more secure and I feel better knowing he's comforted. I will do this for him as long as necessary. Besides, waking up to his sweet smile is a pretty good way to start the day.

4. Poop is a hot topic!

5. Love is infinite and our capacity to love grows each day. Just when I think I can't love Landon any more than I already do, something shifts and the love multiplies. It's amazing.

6. Landon will learn in his way, on his own time, and that's really ok.

7. There are WAY more important things in life that will always trump how clean the house is.

8. Even when I think I'm doing everything right, I'm probably not.

Power of Positive

We are powerful. Our thoughts are powerful. Our prayers are powerful. Our intentions are powerful.

I have been asking for prayers for Landon regarding his health. I would like to ask for something a bit more specific, for those of you who would like to help.

Here's what I am asking.

Hold a vision of Landon being completely healthy, happy, playing and laughing. When you think of him, focus on the gratitude and joy we all had when he was released from the hospital. When you are praying for him, include a special prayer asking God to fully restore his health so that his body can function at an optimal level, like it is meant to do. Your prayers are yours. I am in no way telling you how you should pray. I am simply asking you to include this special prayer along with all the others you're saying.

If we all stay in a place of love and gratitude while holding a vision of him at his absolute BEST I think we will really be able to make a difference.

The love and support we have all had during this difficult time in our lives has moved me in so many ways. I am grateful to you all.

Lasagna

This is what's going on in our house this morning. Mmmmmmm....

Happy Sunday!!

Words.

The other day I was talking with another Mama and we were talking about our children. She has three kids, two boys and her youngest is a girl. Her daughter is six years old and honestly one of the most sweet, thoughtful young ladies I have had the privilege of knowing. She is her Mama in a six year old body. I told my friend this as we were talking. The conversation ended and we went our separate ways. A couple days later we were chatting again and she says to me, "Do you remember the other day when you said H was just like me? Well I wanted to tell you that is by far the nicest compliment anyone has ever given me." Wow! I made a very simple statement of fact and it in turn had a huge impact on my friend. The moral of this story? Heartfelt words can make a difference in the lives of others. Say "I love you" as often as you can, when there is an opportunity to complement someone (and by the way, there ALWAYS is) then do it, smile at strangers, be generous with your heart, be kind with your words.

Sleep.

Dearest Landon,

Mama and Daddy are very grateful to you for sleeping all night. Especially after the madness that ensued the previous night. Thank you, Baby. We love you.

Smoochies,

Mama

Heaven

It's for real. 59 pages in and I have already cried like a baby more than once...or twice.

Children's Mercy Hospital Stay 1: Part One

The last time I posted I was at a very low point.  Landon's progress (the little bit he made) had not only halted, he was getting worse.  The day after I made that post, we were transferred to Children's Mercy in Kansas City.  These next few posts may be lengthy and detailed.  This is my therapy. 

Saturday December 17th was supposed to be a day of hanging out and waiting.  Landon was set to get another scope Monday morning so we were pretty much just waiting out the weekend.  It was mid-morning and I was enjoying a visit with a couple of friends, while Landon and Scott walked the halls at Wesley Medical Center.  Our nurse came in, handed me a piece of paper with our GI doctor's cell phone number, and said the doctor would like me to call her.  I knew at that point something was going to happen.  

I called our doctor.  She was extremely concerned about Landon's lack of progress and continued blood loss.  He had received 3 blood transfusions and had been on IV steroids for 6 days and they clearly weren't working.  After speaking with her, she recommended transferring us to Children's Mercy, for a second opinion, and because she felt we needed a higher level of care.  In her words, "if this were my child, this is what I would do."  It's so nice to have a doctor who is also a Mother, because there is the bond of Motherhood.  They get it on that level.

We were told that we would be leaving in just a few hours.  A few hours!  We had nurses and a transport person come in and talk to us about the process.  By 3:15 that afternoon the transport nurses from Children's Mercy were at our door.  Landon and I went by plane and Scott drove.  

Landon and I arrived at Children's Mercy around 5:30 p.m.  We got checked in to our room and met our lovely nurses.  It would be another two hours before Scott would arrive.  Landon was cultured for a bacteria called VRE and we were told he would not be able to leave his room until those cultures came back.  We wouldn't know those results for at least 24 hours.  Landon was so used to being able to walk the halls and explore while we were at Wesley.  He must have asked to "Wooook" about 56443 times that evening.  

The resident doctor came in and spoke with us and it was decided that he would remain with out any food or drink (other than water) in preparation for his scope Monday.  They hooked him up to an IV.  That night was pretty much the same as we were used to in Wichita.  Scott went to sleep at the Ronald McDonald house while Landon and I stayed at the hospital.  Landon slept with me.  The nurses came in to give him meds and check his vitals throughout the night.  They were very gentle and quiet.

Sunday morning we met Landon's team of doctors.  We talked about a plan.  They were going to test him for several different viruses, bacteria and parasites.  He would need another scope on Monday and they started him on an antibiotic they had seen work on others experiencing the same symptoms.  It was supposed to help with the diarrhea.  They told us we would need to give him some stuff to help prepare him for his scope.   The nurses came in to insert a feeding tube.  This was necessary in order to get the stuff in Landon's system to clean him out for the scope.  I stood beside him as they prepared to insert the tube.  Before they even started I began to weep.  After two long weeks of holding him down, subjecting him to pokes, prods, forced medications, etc., I was just emotionally spent.  Our nurse teared up too.  I just couldn't do it.  I had to step away.  I felt like a horrible Mother.  How could I not be right by his side?  He needed me!  I just couldn't.  So, I stepped away.  I was in the room.  Crying.  Sitting on the side of my bed, head in my hands, crying.  Within minutes they were done and he was on my lap.  He was now hooked up to the IV along with the feeding tube.  Landon asked to walk and for milk constantly.  All.  Day.  Long.  He still offered up smiles though.  We did a lot of snuggling and rocking that day.  He also went through a lot of diapers.  And hospital gowns.  And hospital pants.  Let's just say, the stuff was working and he was definitely getting cleaned out.  On one occasion, all over Daddy's arm and the floor.  TMI?  I guess if you're still reading, it isn't.      

By that evening his system was clear and they were able to remove the feeding tube.  I was relieved to know he wouldn't have to try to sleep with that thing in.  He was still losing blood in every single diaper.  We were worried but trying to stay hopeful.   

He went for his scope Monday morning.  We were able to stay with him right up to the point of sedation.  Scott and I were the last faces he saw before going under.  We walked away from his little body laying on that big bed.  We both cried.  Within an hour the doctor came out to speak with us.  He has been a GI doctor for over 30 years and is semi-retired now.  He comes in to Children's Mercy to help out when they need it.  He was extremely concerned by the look of Landon's colon.  He said it was one of the most inflamed he had seen in a child that age.  He said every time he touched it, Landon would bleed.  He was able to get a couple of biopsy's to send off to pathology.  Landon was awake pretty quickly and by the time we got to him he was enjoying some Goldfish crackers.

We got back up to his room and were informed that he would need to remain without food or drink by mouth.  Try telling a kid who hasn't eaten in 2 days, then is given Goldfish, that he can't have anything else.  Oh, and he was also coming down from the anesthesia.  Talk about a grouchy bear!  He screamed and cried at us for a while.  It totally sucked.  

The first diaper I changed following the scope was essentially all blood.  The worst one he had in weeks!  His hemoglobin dropped a whole point following his scope. We knew at that point that there was a pretty high chance that he would need another transfusion.  I was concerned.  The doctors came in to speak with us and that's when we found out that Landon had tested positive for the VRE (the bacteria he picked up at Wesley), which would mean he would have to stay quarantined to his room.  At the time, that seemed awful!  We spoke with his doctors and decided to try a new medication called Remicade.  We were told that it had a 60% success rate and if it was going to work we would see some progress within 48-72 hours.  It was our last hope before considering surgery to remove his colon. 

Tuesday morning the nurses came in to get him to remove the central line and replace it with a PICC.  They took him to another room for the procedure and we weren't able to go with him.  We told him what was going to happen and he went right to the nurse.  No tears, no hesitation.  Landon received his first infusion of Remicade.  We were hopeful.  We were visioning him being in the 60%.  We also made the decision to keep him off all food and drink by mouth, in order to allow his body to fully get a jump start in healing.  They switched him over to the full nutrition IV, which included electrolytes, fats and lipids.  That day we watched Toy Story and Cars and Elmo pretty much all day.  He was very lethargic.  He spent the majority of the day on my lap.  Scott and I hadn't eaten all day because we didn't want to leave him and couldn't eat in front of him.  Around 3:00 that afternoon a volunteer came in so we could get a quick bite to eat.  It was nice to step away for a moment but all I thought about was getting back to Landon.  

Wednesday morning Nana, Papa and Grandma showed up to visit.  It was wonderful to see them all.  You could see the excitement on Landon's face when they walked in.  That afternoon he had his very first diaper with NO BLOOD!  We were elated!  However, his hemoglobin had dropped to 7.2 so he received another blood transfusion.  We were feeling good.  Things were looking up.