My DS is still in the hospital and he is over 11 month old now. I just didn't know where else to turn and could use some support. Everything was looking really good for him last week. He was transferred out of the PICU into the Pulmonary unit for the home vent program this past weekend (he has a trach). A big step to coming home.

Well Monday they called a Code Blue on him. His heart rate droped to 40 and his blood pressure plumated (sp). By the time they got him to the PICU again his heart rate was 230 and not coming down even after a bunch of sedation. He had been running 103 to 104 fevers all weekend with dirreha (sp) for over 24 hours before all this happened.

The fevers are normal for him to have from time to time. He just spikes really high fevers from out of the blue and no one knows why.

He gets sick and is on antibotics then comes off for a week maybe two and then bam he is sick again and has to be put on antibotics again.

I just can't handle the hospital dance any more. But I miss my DS so much at the same time. I have to drag myself there, but once I get there it just kills me to leave him.

I have been living in fear for the last ll months that one if my babies could die at any moment. Once I feel like things are going ok I just seem to get slapped in the face with reality. Yet I know and live with every day just how fragile my babies are.

I know I just need to put one foot in front of the other, but it just seems so hard at times like these. How do you ladies do all this medical stuff and keep your head up. I'm already on anti-depressants, but I just want to curl up in bed and cry.


Amy
Wife to Jason(pixelpusher)
Mom to Gwynne, Connor, Chloe 11/03/03
25wks 1day

http://lilypie.com>

Amy
Wife to Jason(pixelpusher)
Mom to Gwynne, Connor, Chloe 11/03/03
25wks 1day

www.ferristrio.blogspot.com

http://lilypie.com>

Amy -- I really don't know what to say...the best I can do is send a big cyber-huge your way.

My kids were only in the NICU for 9 weeks so I have no idea what it must be like to still have a child at the hospital for 11 months. My Noah has had 6 surgeries and been hospitalized a few other times for seizures -- those short times away from home have been stressful enough for me.

But I'm a firm believer in you do what you have to do. People always ask me how I do it...like I have a choice. I can't wake up one morning and decide that I don't want to take care of Noah (or my other 3 kids anymore). So I just keep going and hope that there are better times ahead (and usually there are)

I do know one thing...the hospital is full of germs. We have not had a single hospital stay that we managed to escape without catching something. I'd guess that could at least somewhat explain all of Connor's illnesses.

Did you ever get in touch with the other TC mom that had the vent-dependent child? I really wish that I could remember her name - I think her son's name is Austin.

And one last thing...sometimes it is okay to crawl into bed and cry. I know that sometimes it helps to let it all out before getting up and going back to life.

Feel free to vent anytime...

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

{{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}} Unfortunately I have no great words of wisdom. I wish so much I could help you. You know my dh and I care for you guys very much!

Michal
B - 11 years old and BGBG quads 7 years old

(((((((((((((((((((Amy)))))))))))))))))))))
I am so sorry that you are having to deal with so much . My son was only in the hospital for 6 months. We were 'prepared' (as you can be) for a 2 yr stay, if he could survive, against all odds that long, to get a multi-organ transplant.
It's ok and even beneficial to just curl up in bed and cry :'(
It is extremely stressful to feel on edge all the time about your babies major health concerns, and that is something that most people will not be able to understand. Please ask for God's comfort for you and your family, I will do that for you, as will many here. Please know that as intangible as that may seem it REALLY does help.

Is he on formula through a g-tube ? Or is he on TPN ? What type of formula ? Does he have a GI dr involved in his care ? My son was septic 7 different times while he was in the hospital, is that what is happening with him ? Does he have a broviac line ? Is that the source of the infections ? Has he seen an infectious disease dr ? My son saw a very highly regarded infectious disease dr after he was septic so many times. He had a very complicated and unusual history, so the infectious disease dr prescribed the best combination of antibiotics for him and monitored his bloodwork for him.
Does he have one or more primary care nurses that you really trust ?

I do know a woman who's surviving triplets (born at 24+ wks) did have to deal with a very long stay for her son, about 2 yrs for severe respiratory problems. I would be happy to try and get in touch with her for you if you would like me to. He came home on a vent and had 24 hr nursing care and home drs visits as well as OT and PT at home.

You are carrying much too big a burden to carry it on your own. Know that even if you don't feel connected to Him, God is watching out for you and your babies and wants you to reach out to Him for comfort. Is there a social worker or a child life specialist or a pastor at the hospital who can put you in touch with some other parents in similar situations ? There was a girl down the hall when my son was in the hospital who had been in the hospital most of her 2 yrs with the same problem my son has. Her mom was VERY anxious to meet another mom with a child with the same dx. It was very comforting to me to see someone who was further into the journey than I was.

I will pray for peace for you and health for your babies. Just so you know- I didn't truly believe in the power of prayer (it just seemed like something people say to be nice - or try when they don't know what else to do KWIM ?) until my son made a miraculous recovery after many hundreds of people prayed for him daily. I don't believe that we can change what God's plan is, but that if we surrender our hearts to him, that He will take care of our needs.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

I KWUM about the power of prayer. I was just like you in the thought process of prayer. But I know having so many people prayering for my babies and DH and I is really what has helped to get us as far as we are. I'm struggling with faith and trying to surrender, just doesn't seem to happen fully.

But to answer some of your questions. He was on formula via a g-tube in tell this "episode" he had this week. He was getting Neocate. I don't think he has ever been seen by a GI Dr. We can't even get a freakin nuerological consult that we have been asking for months. All of my kids have been septic several times. But my DS has not been lately accept for infection. He has had two broviac lines that both went bad. The first one you could never draw any blood from and went bad after about two months and caused a horrible fungal infection. They cleared that infection and gave him his second one. Which went bad within a month and had to be pulled. They just recently did another PIC line, which went bad within days and was pulled.

He is at Children's L.A. and has been followed by the infectious diease unit but not by a specific Dr. that I know of. I have one nurse that I have really fallen in love with and she is on days. She asked to be assinged to him when ever she works. But the unit is so big and there are so many nurses that the roation is fairly big. I work during the day so I have not been able to really get to know many of the nurses.

I guess I was not expecting/prepared for a 2yr stay. Everything was looking so good in Feb/April. Then at the end of March everything just seem to go down with his health when he contracted CMV. Which required him to be intubated again. And they could not get him off the vent which is why he now has a trach. Since then he has just been struggling like crazy.

I would love to be in contact with this other lady you know that had a 2yr stay. I just am struggling with being at the hospital still. Now with both girls home and trying to support my family I just don't get to see him as much as I would like. Not to mention now that he is at Children's he is not as close to home as he use to be. I want to transfer him back to the hospital close to home for selfish reasons. But in my heart I know the care at Childrens is better. Even though I'm questioning it a bit at this time.

He is suppose to be getting another head CT and stomach CT this afternoon. So far all his cultures have come back negative. Which seems to happen a lot when he has these high fevers. They did find something in his urine and he has been acidic (sp) (not sure if that is right word) and they have been giving him bicarb (sp) in order to regulate his PH.

I'm just in such foreign territory right now and don't know where to turn. I just want to scream at the Dr.'s some days.


Amy
Wife to Jason(pixelpusher)
Mom to Gwynne, Connor, Chloe 11/03/03
25wks 1day

http://lilypie.com>

Amy
Wife to Jason(pixelpusher)
Mom to Gwynne, Connor, Chloe 11/03/03
25wks 1day

www.ferristrio.blogspot.com

http://lilypie.com>

Amy
I am working on getting a phone number for you for the woman I know with one of her trips with the very long stay. I have been saying many prayers for Connor and for you and DH too. I saw your pictures of the babies they are adorable . The one of Connor is so sweet, it just breaks my heart thinking of him and all he is going through.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Would it be ok if I passed on your email info to her ? That is what I can do, with your permission of course, once I hear back from someone in the twins and more club we both are former members of.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Amy,
i don't know what to say, other than I hope and Pray for the best for all of you. I so hope that the doctors figure out what is going on with Connor. From our experience with Little Eric, can I suggest that you please tell the infectuous disease specialists to look for the UNCOMMON! We lost Eric because they weren't thinking 'outside the box' The infection that Eric got was one only seen in adult patients, therefore he was not given the right medicine. With all that you have gone through with your little guy, I hope they are thinking forward, and not just scratching their heads!

With the things we have dealt with, the main thing that I see coming out of it is a closer relationship with God. That is what gets me through. I needed someone to hand my troubles to and carry me when I need it, and that is what he is there for. It's too much for us alone.

I hope things start looking up for you guys.

BTW - I read that someone saw pictures of your babies?! Can you share? I would love to see them!

Mom to:
Matt (1991) Megan (1994) and ^Eric Jr^ Levi and Vivian (2003) at 26 weeks

Here's the post where there was a link:
pixelpusher
Member since Jun-30-03
84 posts Oct-09-04, 11:06 AM (PT)
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"Prayer Request"

Amy hasn't posted an update for the past few days on Connor since we're not sure what is going on quite yet. Today we received a little more concrete information.

Last monday Connor coded blue because of a low heartbeat. He was rushed down to the ICU (He had been up on the floor at the home vent program). His heartrate shot up to 220's and stayed there for approx 10 hours. He also had a fever of 105.

The days folowing he began to have severe tremors in his hands, legs, and mouth.

Yesterday a neurologist identified the tremors as seizures. After a CT Scan and EEG they ahve determined that Connor has stuffered a devastating neurological episode in the oxcillary (SP) portion of his brain where his vision function is located.

Connor received an MRI today but there is no MRI tech at the hospital that can read it until Monday...guess no sleep till then. At that point they will let us know the extent of the damage and Connor's prognosis.

Please send extra prayers and wellwishes to Connor this weekend as he really really needs them.

Jason Ferris

==============
Connor, Chloe, & Gwynne - 3 Precious
miracles born 11/03/03 @ 25W

See our babies at http://
www.300lbguerrilla.com

All we have to decide is what to do
with the time that is given to us.

Lorraine

Reach for the heart of God and not just His hands.
Organ donation saves lives!
Life happens when love is given.


http://www.caringbridge.org/visit/bradenwild

Oh, I am so sorry for all that you have gone through! It is never easy to have a child in the hospital - especially for 11 months! I don't know how you have done it! My son has to stay in the hospital occasionally and it is so hard to juggle everything! Faith and family is always what gets me through the tough times! Sending lots of prayers for you and your son.

"We can not change yesterday. We can only make the most of
today and look with hope towards tomorrow."

~Heather~
Mom to Kyle, (4/98) &
Brandon, Jacob & Devin, (5/00)
32 weeks
www.jacobduckworth.com

(((((Amy)))))

My daughters were in the NICU for 4 and 5 months- not nearly as long as Conner and neither did they have as many issues.

But I do recall how hard it was to take Robin home and have to leave Abby behind!! I cried almost as much as when I was discharged after their birth ,without them!
Thenit was difficult to have to be hoem with Robin alone and wait for someone to come relieve me ( Ex-DH or my Mom) so I could go spend a few hours with Abby- and I was nursing Robin and pumping for Abby then. It was exhausting,emotionally draining and I was on anti-depressants as well. Don't feel bad about having to use pills- it happens to the best of us. It won't be forever.


You are doing the BEST that you can with a VERY difficult situation. Try not to beat yourself up!! Have you thought about counseling jsut for an objective and sympathetic ear? Are you a member of a local MOM's group? Perhaps, there is someone in the group who has been through a similar situation. You can even contact NOMOTC -I beleive they have a resource list of members who have expereinced different situations and they may be able to hook you up with a phone buddy. And ,of course, you have us!

Hang in there! Try to make the most of the time you get to spend with Conner at the hospital. Read him stories, play games with him, bring him toys. Just treat him like a regular baby as much as possible. Does anyone from Early Intervention visit with him to work on any type of therapy or can they do that thru the hospital? Find out if your hospital has "Child Life Specialists." They work with children who have long hsopital (or short) stays, children facing surgery etc. They usually have resources as well to entertain the children.

I will keep you and your family in my prayers!

Korrie~
^i^B/G/G 24 w 3d,1/17/00
B 10/31/01
B 1/27/03

<a href="http://lilypie.com"><img src="" alt="Lilypie Kids birthday Ticker" border="0" /></a>

Amy,
I can't tell you how I do it. I just do. I won't beat around the bush, is a struggle every day. However some days are better than others and then as time goes by you get more days that are good than bad. My kids were very small and spent numerous months in the hospital. 2 came home and then Sarah was at children's hospital for an additional 2 months and I really don't know how I did it. Sarah has a trach but at this point is pretty healthly. I urge you to go to Tracheostomy.com and join the forum. (if you already haven't) You will find you are not alone and there is a large group of compassionate and experienced parents there to listen and help. I am very sorry for you situation. And I too think that crawling in bed and crying is not only healthy but important for your greiving process. Yes other people do greive "sick" child, and we get mad a he** at the doctors and want to strangle them!! Hang in there girl!!
kate

Kate Miller mom to Charlie, Katelyn, and Sarah born 9/02.
28wks

Your precious babies have the same birthday as me.

I had no idea it has been 11 months. I am soooo sorry that your son has had to spend the beginning of his life in the hospital. I think about him so much every time we get an update. I hope he can come home soon. He will enjoy the comfort of a crib and his mommy's arms at night so much more.

Have the doctors given you any idea about how long he might have to stay?

You are going to have to give him his very own special b-day. Give him a huge kiss for me. And big hugs to you mommy. Baby Connor needs you so much right now and I am sure if he could talk he would thank God that he was sent to you.

BBB Triplets Born 2003