2nd BMT – DAY +30

MOMMY: Liam loves it when the music lady comes 🙂

Results are not back yet. Maybe later today. Hoping, praying, and leaning on faith 🙂

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2nd BMT – DAY +29

MOMMY: Liam got blood today 🙁 I was so hoping he wouldn’t need anymore. Today has been a hard one for me. The waiting and wondering is not easy. I hope only good results come from the bone marrow biopsy and I can start to feel some sense of comfort. I’ve came to except this is not going to get easier on my heart but instead, I will continue to get stronger with this journey…

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What are the symptoms of adrenal insufficiency?

by Liam’s HLH Journey (Notes) on Wednesday, April 3, 2013 at 1:50pm

Liam has adrenal insufficiency, he also had this with his 1st Bone Marrow Transplant. He has be started on hydrocortisone. Here is some information about Adrenal Insufficiency.
SOURCE: http://endocrine.niddk.nih.gov/pubs/addison/addison.aspx#treatmentThe symptoms of adrenal insufficiency usually begin gradually. The most common symptoms are

  • chronic, worsening fatigue
  • muscle weakness
  • loss of appetite
  • weight loss
Other symptoms can include
  • nausea
  • vomiting
  • diarrhea
  • low blood pressure that falls further when standing, causing dizziness or fainting
  • irritability and depression
  • a craving for salty foods due to salt loss
  • hypoglycemia, or low blood glucose
  • headache
  • sweating

How can someone with adrenal insufficiency prepare for an emergency?

People with adrenal insufficiency should always carry identification stating their condition in case of an emergency. A card or medical alert tag should notify emergency health care providers of the need to inject cortisol if the person is found severely injured or unable to answer questions. The card or tag should also include the name and telephone number of the person’s doctor and the name and telephone number of a family member to be notified. The dose of hydrocortisone needed may vary with a person’s age or size. For example, a child younger than 2 years of age can receive 25 milligrams (mg), a child between 2 and 8 years of age can receive 50 mg, and a child older than 8 years should receive the adult dose of 100 mg. When traveling, people with adrenal insufficiency should carry a needle, syringe, and an injectable form of cortisol for emergencies.

What special problems can occur with adrenal insufficiency?

Surgery

Because cortisol is a “stress hormone,” people with chronic adrenal insufficiency who need any type of surgery requiring general anesthesia must be treated with intravenous glucocorticoids and saline. Intravenous treatment begins before surgery and continues until the patient is fully awake after surgery and able to take medication by mouth. The “stress” dosage is adjusted as the patient recovers until the presurgery maintenance dose is reached.

In addition, people who are not currently taking glucocorticoids but who have taken long-term glucocorticoids in the past year should tell their doctor before surgery. These people may have sufficient ACTH for normal events, but they may need intravenous treatment for the stress of surgery.

Illness

During illness, oral dosing of glucocorticoid may be adjusted to mimic the normal response of the adrenal glands to this stress on the body. Significant fever or injury may require triple oral dosing. Once recovery from the stress event is achieved, dosing is then returned to maintenance levels. People with adrenal insufficiency should know how to increase medication during such periods of stress. Immediate medical attention is needed if severe infections, vomiting, or diarrhea occur. These conditions can precipitate an Addisonian crisis.

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2nd BMT – DAY +27

MOMMY: Liam is still throwing up but they have been increasing his feeds. He is very active and loved being unhooked from his pole for two hours today!! He does have Adrenal deficiency, so he is being started on Hydrocortisone. Thank you Nana, for having the doctors check it 🙂 Tomorrow Liam will get a bone marrow biopsy. This will show if Noa’s cells have taken over. I hope with all my heart that it comes back 100% Noa’s cells. I can’t help feeling very nervous about getting the results. This will be three days… Please pray for only good news.

The only thing Liam will watch! Uncle Markie is rubbing off, along with Liam’s older brothers 🙂 Motocross

One of my four reasons, to never give up 🙂

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2nd BMT – DAY +26 ~ Mr. Cool!!

Thank you, Lisa Yoo for the adorable Elmo sweatshirt, with Liams name on it. You are such an amazing person, always,thinking of you ♥

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2nd BMT – DAY +25 Happy Easter Everyone :)

I hope everyone has a blessed day.

  

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2nd BMT – DAY +24

Today has been really good for Liam 🙂
I got a phone call this morning that left me in tears. I can’t believe anyone would call and cuss me out and threaten to take my children. Knowing I’m up here trying to save Liam’s life. I can’t believe two people would want to endanger Liam’s life. I also can’t believe knowing it upsets me and by upsetting me Liam feels that and does not need any stress. I just want to get Liam better and if you want to judge me for keeping Liam safe then go ahead. It’s not going to change how I care for Liam. I will protect him to my fullest ability and hope that people understand I’m putting Liam before my needs. Being selfless has many rewards.

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If I could ask God, for one thing…

MOMMY: I wouldn’t hesitate. I’d say “please heal all these children fighting for their lives”… As I left Liams room today, to grab something to eat. I passed by a little girls room, who’s mother I have become very close to. I stopped to say hi. As I was standing there in the hallway, I heard a little boy choking. So I ran to get the nurse. He was alone in the room and gasping for air. The nurse came running and went in ready to save this child. She asked me to hold him up and I froze with panic. All I could think was, was this child contagious? Liam has no ANC and I couldn’t do it. The mother of the little girl went running in and assisted the nurse. A code blue was called and they were able to get the little boy breathing again. As the mother of the little girl left the room, she was sobbing, shaking, and asked “is there anything I should be concerned about getting”? She went in without hesitation and knew I couldn’t. I have beat myself up over it all day. I feel horrible that I panicked and only thought of Liam. I am just so thankful that, that little girls mother was there. She just kept saying “the fear in that little boys eyes, he was so scared”!
I tell you this, because no child should ever have that fear. They should be able to play and be innocent and enjoy all the beauty in life. Not fight for every breath they take and fear it’s their last.
No mother should have to fear that helping another child, could kill hers…

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2nd BMT – Day +22 ANC 690 :)

NANA: Liam got the feeding tube placed last night 🙁 Now he has had a sick tummy, and vomited many times. Hoping it will slow down. He isn’t wanting to eat now. They gave him formula feeds yesterday, and his oral meds through the tube. They say it takes a couple of days for them to get use to having the NG tube. We wish the hospital served Elk meat or baked Salmon. At home he loves it when Papa cooks Elk & Salmon. Here is a story of a sick little from Alaska that wasn’t eating the hospital food. He wanted Moose stew. http://m.bastyr.edu/news/general-news-home-page/2012/02/feeding-spirit-nutritionist-helps-tribes-rediscover-traditional

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2nd BMT – DAY +21 Liam’s ANC is 630!!!

MOMMY: His platelets are 164 🙂 Liam weighs 39.6lbs. Last night was rough for him. He was up almost every hour and has had a very upset tummy today 🙁 Liam also had to get the NG tube placed and he is not happy about it at all. He cried himself to sleep in my arms…

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