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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Friday, May 23, 2014

stand by helplessly and watch

Yesterday was busy and it was a heart-full day. So many things to be so happy about. But some difficult stuff too. The girls are winding down in dance, the year is nearly over. The recital is next month and we had pictures. They are excited to perform and get their trophies. Eden will performing two dances and Ry will be in three. But we had to be on our A-game yesterday because we had HTx clinic in the morning and we needed to be ready for pictures by 2. That seems like forever away but when clinic is at 10:30 we need to leave by 9:30 to be on time. We had to figure out how to get Eden's hair ready for dance pictures without the curling wand so I used rollers. She was slightly mortified to be out and about in her rollers. She felt somewhat better when she saw me pack up the makeup she would get to wear. She is always tickled to wear makeup, especially mascara. Clinic was rough.... The kids were not terribly crazy. We have been nutso before and I felt like they knew better today. Alex actually did most of the talking. They asked him the questions. It was good to see he is listening to his body and is able to vocalize how he feels. It also means he can tell him things and I can tell them observations, a much better picture. We needed an Echo to help us see what his insides were doing. The leak in his tricuspid has gone from moderate leakage to severe. This is a huge thing. It is at its max... His function looks the same. That is neither good nor bad because his function isn't good. That is what the echo showed us. Then we ran over for an anti-Xa and labs..... I was glad to have the amazing Miss Jen on my team for playing with the girls. Child Life is an amazing resource and helps us so much. We had to do two pokes to get labs this time. He didn't even cry until he they needed to search a little and that hurts. On the second poke he was already weepy so he fussed. He made it through and got to pick a prize so it was well worth it. After that we flew to dance pictures. Eden was thrilled with her bouncy hair and lovely mascara.. And LIPS!!! How could I forget the lips? She looked darling. Then home to get Ry ready and hair curled... While curling away the phone rang. The hospital had his results... Not awesome:( Alex is wearing down... His body for some reason isn't making enough white blood cells. The normal level is around 5-15 and Alex's number was 2.2... Even more concerning was his ANC.. Anything below .5 is worrisome his number is .3.... All of this means he can't fight off infections and illness. He can't go off to school anymore and he can't go to church. We can't go places were there will be big crowds and he needs to wear a mask when out and about... All of this listing/transplant business just got Fo REALS... Up until now, besides the treatments to lower his antibodies and the extra visits to see the doctor, we haven't really changed. We haven't had restrictions, school was still an option and church... With this change it means a new medication that is another injection. The good news it's only for 5 days. And some other tweaking of meds.... 
We are going to make the best of it. We go back on Tuesday for another echo and more labs. Adjusting is the name of the game. Pharmacy brought out his new meds and asked if I wanted a nurse to come show me how to administer it. I giggled a little and said I probably got it, but thanks. I made adjustments to his spread sheet and set alarms on my phone to help me remember what to give him. I feel organized. Now if I could just move past the haze of fear that threatens like storm clouds coming over the copper mine near our home. I know this is part of it. I understand that he will decline, but it is hard to be the bystander. Poor friends who wish there was something they could do. There isnt, except to continue to rely on our faith that this is His plan. When and if you question God, know that I don't feel like any of our trials are punishments for being unfaithful, rather, it is a way to gain more faith, more compassion, more strength to endure and overcome. 
If you think of it as a bike analogy... Daddy loves these..... 
When planning for a very big ride, take for instance Latoja (one of Jeff's goals) Not only must you prepare by doing tons of practicing, you must watch your weight, get the right kind of equipment, make strategies for someone to be your nutrition stops, ride in smaller rides that will prepare and strengthen you as a rider, and so much more. 
Our ultimate goal is to be worthy to be with God again. We prepare on earth by practicing being humble and faithful, watch how we react to things that could damage our spirit,  get the right kind of equipment for our spirits like prayer, fasting, and scripture study. Make strategies for nutrion of our testimony by attending church and partaking of the sacrament to renew the promises we made at baptism. Last, we must ride out and endure trials. It's part of it... Easy??? Naaaah, that is why your prayers have meant so much. Thank you! 
She waits. 

All curled up.

Labs.. At least they have video games.

My three little ladies..



3 comments:

J.B. said...

Love you.

Irene said...

Sending love and prayers your way.

Kara and Cody Markham said...

Brynn, Your faith and your strength amaze me. I love you and your family and pray for sweet Alex every night!