Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Tuesday, December 21, 2010

They're home!

Krystal and Ayzac arrived home on Sunday night. So far, so good; it's all about keeping him on schedule while trying to organize all the new gear he comes with, his supplies and meds etc while also tending to the other toddlers and an attempt at getting Xmas going! Krystal barely has time to catch her breath! She will update when she has time but for now, you are stuck with gramma's lame update! :D

-Lorna

PS: New Article in the Free Press.

Sunday, December 5, 2010

Bahumbug!

It certainly doesn't feel like Christmas is only 19 days away. I'm not home, so no tree...no decorations...no singing Christmas songs together while we bake holiday cookies for Santa. I'm totally bumed out but I am trying to stay hopeful that we will get out of here soon. I really, REALLY, want to be home to see Kazzdon's first Kindergarten Christmas concert on the 15th. There are not many things cuter than a bunch of 5 year old kids singing jingle bells out of sync! He sang 'Oh Christmas tree' to me on the phone. I got "Oh chrisis tree, Oh Chrisis tree, how big your green fat brancheeeees!" I'm pretty sure those are not the lyrics Mrs. Dickson has taught him, but so cute! I told the doctors about it and they are going to try to have us discharged by the end of this week, but I have been told we might get discharged many times now and I know better than to get my hopes too high. It's a long fall when things change and we wind up staying. I have already decided where to set up a Charlie Brown tree and hang stockings in the hospital room just in case.

The plan as far as I know is to stabilize his electrolytes (Sodium and Potassium) the best they can with a treatment that is easy for me to do at home. That is the only thing still keeping us here because everything else has been looking better so far (knock on wood). They tried him on a new medication last week called hydroclorothiazide (thiazide for short) to try and replace his fludrocortisone, sodium chloride, amlodipine and kayexalate. It didn't work unfortunately. His potassium went through the roof along with his blood pressure. This is partially due to a staff error too. The doc discontinued lactate from the blood work and somehow a nurse read it as kayexalate (??), so he was off of kayexalate before he was supposed to be. Now he's being weened off of the thiazide and put back on everything he was on to begin with. Another week wasted on experiments. The test results from his muscle biopsy and blood that was sent for special testing should take about two months. Hopefully we will have a clearer picture of what's wrong with him sometime in February.

Last week we had a few clinic appointments and a couple of very busy days. The BC Lions (football team) were here and we missed it. I think I was more disappointed than he was though, obviously. I don't think Ayzac is a sports fan yet but I was hoping to get some pictures taken with big muscly men holding little man wearing his football sockies GGma got him. A little eye candy for mom never hurt anyone either! On friday I got to learn how to do his Subcutaneous (Sub-Q) injection and starting Monday I have to do them by myself three times a week. Its a shot of Erythropoetin (Epoetin or Epo for short) that he gets in his thigh. It's a hormone booster for the bone marrow to encourage red blood cell growth. It seems to be working well for him as his hemoglobin has come up from 61 to 79 in just a week and a half of treatment.

This week the nurses are going to review everything for discharge with me again. They are even going to get pharmacy to send up all of his meds in vials so I can start to draw them up myself. Usually pharmacy sends the suspension meds up pre-measured and I only deal with the pills but I want to start doing it all before we go. It already takes about 20 minutes to get his meds ready so this is going to be quite a process. I am going to learn how to use a portable pump for feeds as well. I will need one for home just in case Ayzac decides not to eat or he goes exorcist on me. He has to have a certain amount of formula everyday and he can't miss feeds.

The nurses had to change the needle in his VAD today. It has to be changed every 10 days if he remains accessed. I was a really surprised when they pulled out the needle! It's an inch long and fairly thick. For some reason I pictured it being much smaller than that. It looks monstrous going into his tiny little chest. I felt like he was being stabbed with a flagpole and despite all rationality telling me how necessary it all was I stood there imagining myself drop kicking the nurses like something out of a Jackie Chan movie. They didn't use Emla cream on him either the poor little guy. The nurse told me they don't usually use Emla on babies because they cry anyways and it's over quickly, but after I saw the size of the needle I will never let them do it without Emla ever again! It just seems cruel to cause him pain if he can be numbed! Then at least I know he's only screaming because he doesn't like to be pinned down. I'm also going to ask if I can use Emla cream on his leg before I do the Sub-Q injections. I don't see why not?

On Tuesday I should find out if we are approved for the 'At Home Program' and on Wednesday Ayzac has an Ophthalmology appointment to make sure he can see properly. Ahhh the Ophthalmology clinic...sitting in that waiting room is worse than watching an episode of jeopardy. It's dull and boring and takes hours to get in. Last Wednesday we sat in there for two hours just to get told we had to go back because Ayzac was sleeping. "I'll take 'Things more painful than death' for $1000 Alex." Answer: "What is...waiting in Ophthalmology clinics?" Ding ding ding!!! Correct! She gets the daily double!! Well, hopefully if it all goes well we will have a discharge order for Friday or the following Monday. I will keep you all posted ;)


For a few of you who were wondering what all of Ayzac's symptoms and medications are here you go.

Symptoms:
Lactic Acidosis.
Brain damage (to the white brain matter specifically).
Epilepsy.
Heart damage (thickening of the left ventricle).
High blood pressure.
Severe to profound hearing loss.
Visual disturbance.
Developmental delay.
Kidney dysfunction (causes his electrolyte imbalances and frequent urine output).
Adrenal dysfunction (causes his hormone imbalances).
Muscle weakness.
Severe anemia (low hemoglobin/red blood cell production).
Several vitamin deficiencies. (causes hair loss, peeling skin, etc...)
Severe metabolic deficiencies. (causes sugar intolerance and the need for a high fat diet etc...)
Heat and cold intolerance.
Autonomic dysfunction. (causes profuse sweating, mottling of the skin and inability to respond appropriately to stress in the body).
Respiratory distress ( hyperventilation).
Reflux disorder.
Chronic thrush.

Medications:
Clobazam (anti-epileptic )
Ranitidine (reflux disorder)
Amlodipine (blood pressure)
Dicloroacetic Acid (lactate)
Fludrocortisone (electrolytes)
Sodium Bicarbonate (electrolytes)
Sodium chloride (electrolytes)
Sodium polystyrene/Kayexalate (electrolytes)
Epoetin Injection (hormones)
Acetaminophen (pain control)
Ibuprofen (pain control)

Vitamin therapy:
Riboflavin
Vitamin E
Levocarnitine
Ascorbic Acid
Biotin
Folic acid
Ferrous Fumarate
Coenzyme Q10

And through all of this he smiles everyday! :)

Friday, December 3, 2010

We're on TV!! (Sorta)

Help Portrait BC was at the hospital. Ayzac and I are right after Elaine and Kade, at 1:43 into the video. It was a good day!