All I have to say is how depressing it is to be on this floor...The PICU....
I feel for the families of these Children weird to say that we are one of them, but as I look and see these other babies and children when I walk through the hallways it makes my heart hurt and I immediately start praying for all of them.
So if all of you could say a little prayer for these kids and there families.
Maybe they will have a little bit better day.
I hope they know that Jesus is right there holding there hand through these troubling times.
Hunter is still holding steady since about 2 am.
I went to suction him out and took his O2 off he started to drop a little bit.
I will post more pics later...
Thanks you too everyone that is praying for our little man, we just want to be able to go home again.
XOXO,
The Isaacson's
Hunter Nicholas Isaacson 02/04/2010 - 07/06/2011 "Our Angel is now in Heaven"
Tuesday, November 30, 2010
Monday, November 29, 2010
Hunter's 1st Thanksgiving
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| His snack before the taters... |
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| sleeping at the dinner table... |
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| mashed taters for bb Hunter.... |
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| Daddy taking a nap with Buck... |
Wednesday, November 24, 2010
Tuesday, November 23, 2010
Hunter's 1st Haircut pics....
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| Love his new haircut...Thanks again Aunt Jenn I. |
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| Sleeping away this morning, he slept all night last night...YAY baby Hunter.... |
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| Jenn Henderson I want to Thank you soooo much for send those adorable stockings and yes I will have pics with them on him and yes they will keep him warm this winter...Where do you find this stuff too cute! Again Thank you Henderson family!!! |
Monday, November 22, 2010
Courtesy of Rhonda Jean Photos
Me and my sister having a little fun in our old Wedding dresses...
Thank you so much Rhonda!!!!
Friday, November 19, 2010
Wednesday, November 17, 2010
Hunter's #1 Grandma's
Nick and I just wanted to THANK both of you for all of your support and love you give our very special son and family...So again thank you!
We love you both of you very much and we know that Hunter loves you two just as much!
Love,
Nick & Samantha
Little Update on the little man....
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| Gabby & Hunter the day before his surgery |
He had bad congestion this morning...suction...suction...suction poor baby Hunter.
I hate to have to suction him all the time but we just want him to have some relief from it.
Because he was having some labored breathing with the congestion.
Still doing okay on the feedings.
Talked to one of his many doctors this afternoon, she stated that Hunter's Zinc level in his blood is really high and his Calcium in his Urine was high too.
We are not to sure what this is all from but they want to do another blood draw on him just to see if it was a lab mess up.
(So a little more confused now, story of our lives.....)
XOXO,
Nick, Samantha, Gabby & Hunter
Tuesday, November 16, 2010
Otahara Syndrome???
Hunter has been recently diagnosed with Otahara Syndrome, very scary for us because when we read up on it we see many similarities.
Here is the hard to swallow Prognosis:
- Prognosis is poor with severe psychomotor retardation and significant learning difficulties.
- The seizures are very often intractable and resistant to antiepileptic therapy making control difficult.
- Frequently cases will progress to West syndrome or partial epilepsy (usually during infancy). Later a much smaller number progress to Lennox-Gastaut syndrome. Psychomotor development may be slightly better if the infants do not develop West or Lennox-Gastaut syndrome
- Half of the children are likely to die in infancy or childhood.
- Some children who survive early children will often see a general improvement beyond initial expectations and increased life expectancy.
For now we are still in Holland and will stay there as long as God will let us.
Nick & Samantha Isaacson
Here is the hard to swallow Prognosis:
- Prognosis is poor with severe psychomotor retardation and significant learning difficulties.
- The seizures are very often intractable and resistant to antiepileptic therapy making control difficult.
- Frequently cases will progress to West syndrome or partial epilepsy (usually during infancy). Later a much smaller number progress to Lennox-Gastaut syndrome. Psychomotor development may be slightly better if the infants do not develop West or Lennox-Gastaut syndrome
- Half of the children are likely to die in infancy or childhood.
- Some children who survive early children will often see a general improvement beyond initial expectations and increased life expectancy.
For now we are still in Holland and will stay there as long as God will let us.
Nick & Samantha Isaacson
Saturday, November 13, 2010
Going home soon!!!!
We should be going home shortly!
We are all so ready to have him home...soooo tired!
He has been tollerating his feeds we are trying to get them down to 1 hr feed times, they just want to make sure he will handle it.
They have been giving him Miralax with 2 feeds a day BAD IDEA! Little man has went allot! So I say once a day every other day...LOL!
They are sending us home with a suction machine (so so so so glad that they are) His congestion is the worst and this little machine make the world a difference for him.
We had a pretty good night last night except the nurse was mistaking his Infantile spasms for seizures and she treated it with the ER drug...Ugh! That drug just makes him so sleepy.
But I am hoping with that little dose we will have a quiet day and night with no seizures.
We have a follow up with his pediatrician on Monday and we will be meeting with Palliative Care soon (hospice).
Another day in Holland and loving it!
XOXO,
Nick, Samantha, Gabby & Hunter Isaacson
We are all so ready to have him home...soooo tired!
He has been tollerating his feeds we are trying to get them down to 1 hr feed times, they just want to make sure he will handle it.
They have been giving him Miralax with 2 feeds a day BAD IDEA! Little man has went allot! So I say once a day every other day...LOL!
They are sending us home with a suction machine (so so so so glad that they are) His congestion is the worst and this little machine make the world a difference for him.
We had a pretty good night last night except the nurse was mistaking his Infantile spasms for seizures and she treated it with the ER drug...Ugh! That drug just makes him so sleepy.
But I am hoping with that little dose we will have a quiet day and night with no seizures.
We have a follow up with his pediatrician on Monday and we will be meeting with Palliative Care soon (hospice).
Another day in Holland and loving it!
XOXO,
Nick, Samantha, Gabby & Hunter Isaacson
Friday, November 12, 2010
My Sunshine....
You are my sunshine my only sunshine you make me happy when skies are gray......
Thank you all for all the nice comments on his caringbridge & thank you Jenn Henderson for the button for Hunter on your page!
Like the poem that I posted in the beginning of the week (we want to stay in Holland for a while)
Love,
Nick, Samantha, Gabby & Hunter Isaacson
Thursday, November 11, 2010
Wednesday, November 10, 2010
Prayers.....
Hunter had a pretty bad drop on his oxygen this afternoon for about a good 1/2 hour, he is now stable and sleeping he had a pretty hard seizure and they have to give him 2 ER drugs to get him to stop.
Nick & I have been faced with some pretty hard decisions this afternoon on how we want things carried out at this point.
We decided on no trache at this point the doctors and us think that this will not make a difference on his outcome since the other 2 kids with his same diagnosis are trached and not progressing at all.
Hunter will more than likely be sent home as long as he keeps his stats up on Thursday, he will be sent home on hospice.
Right now all we can do is love him and love on him and keep him close to us, we do not have a time line at this point we will as we were before taking everyday as a gift to be with him and still have him.
Nick & Samantha Isaacson
Nick & I have been faced with some pretty hard decisions this afternoon on how we want things carried out at this point.
We decided on no trache at this point the doctors and us think that this will not make a difference on his outcome since the other 2 kids with his same diagnosis are trached and not progressing at all.
Hunter will more than likely be sent home as long as he keeps his stats up on Thursday, he will be sent home on hospice.
Right now all we can do is love him and love on him and keep him close to us, we do not have a time line at this point we will as we were before taking everyday as a gift to be with him and still have him.
Nick & Samantha Isaacson
Prayers needed
Right now he is still not stable please read Hunter's Caringbridge for more updates.
http://www.caringbridge.org/visit/hunterisaacson
http://www.caringbridge.org/visit/hunterisaacson
Tuesday, November 9, 2010
Update #3
Hunter has lost the ability to swallow his secretions and the control of his tonge, ENT said that the only thing they can do is put a tube in to keep his tonge from abstructing his airway.
Please keep our little Hunter in your prayers!
Please keep our little Hunter in your prayers!
Update #2
Still dropping about every 15 min. he is still on air oxygen and they just did another X-Ray of his chest.
He is also still really congested. The resident ENT is finally here and will hopefully shed a little light on what is going on.
We are in for a long night.
He is also still really congested. The resident ENT is finally here and will hopefully shed a little light on what is going on.
We are in for a long night.
Another issue
I walked away for moment and I walk back in there were 4 RN's and one doc in the room around Hunter.
His stats dropped so he is now on air oxygen they just did a breathing treatment and he is still having some issues.
Please keep Hunter in your prayers!
It seems that we fix one issue and another one arises.
Sam
His stats dropped so he is now on air oxygen they just did a breathing treatment and he is still having some issues.
Please keep Hunter in your prayers!
It seems that we fix one issue and another one arises.
Sam
Monday, November 8, 2010
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