We’ve been transferred back up to the 3rd floor. We’re on the side of the building that is hot by 7:00 a.m. and broiling by 12:00. But the trade off is that my cell phone works here.
Parker is holding his sats beautifully during the day. He was down to 28% 02 yesterday and they would have turned him down even lower if I hadn’t insisted that they wait and see if that was okay with Dr. Day first. But at night, especially after a hit of Loratab, Parker’s oxygen requirements jump back up to 50% oxygen. They figure that 40% O2 is the same as being on 2 liters at home. The difference here is that Parker isn’t receiving oxygen through his canula anymore, but through a trach mask which means that air is leaking out all over the place.
They had to take samples of Parker’s secreations and send it to the lab. Parker’s suctioning requirements have gone up a bit and that is one of the first signs that a kid with a trach now also has a cold.
Today we have a speech consult, a swallow study, and a nutritional consult. We will also have the usual rounds of Doctors coming by to check things out.
I go through spots of feeling like everything is going to be fine and then I’ll suddenly feel as though there is no way I’m going to be able to handle all of this. I can just be sitting there and then totally unexpectedly I will get clobbered by this wall of darkness. I will be absolutely homebound for the next………uh……….forever? Before I could run out for a minute and let one of my older kids eyeball Parker, but now with all of the suctioning, etc., that just isn’t going to be possible. I’m already starting to feel a bit claustraphobic.
I need to get back to Parky. He is loving being able to be held and snuggled all day long. It’s nice to know how much this little one loves his Mom.
Take a look at this blog
http://iveysirmans.blogspot.com/
Here’s a mom with 2 other kids and a daughter with a trach. She’s able to be very active. Myabe you can glean some tips from her.
Prayers continuing for Parker and your family! HUGS!
Continued prayers coming your way!
Tammy, I am so sorry that the move from the PICU hasn’t made it any easier for you (although I guess cell phone service IS a plus!). I hope that Parker isn’t getting a cold…I assume that as he is in less discomfort he will need less pain meds, and that his o2 requirements will decrease…while I can’t know what you are going through, I DO know that you ARE able to handle this; that your love and strength and ability and community and trust in God will support you through this hard time. Can the hospital social worker put you in touch with other parents who are dealing with a trach, or any kind of local support group? I hope that they are JUMPING on some paper work to get you respite care – not that you would have wished this for a million dollars, but I am assuming that Parker’s new medical requirements will qualify you for some kind of additional help? Oh, Tammy, I hope that today is a good day; that the specialists who are coming by will offer support and hope and that your room is not too too hot! And that you get lots of quality snuggle time in.
Debbie (Binny’s mom)
Hugs, friend. I don’t suppose there are any kind of respite services available for when you go home? Or a nurse for a few hours a week????
did he get the g-tube? i thoughts and prayers continue to be with you all–noran form indiana
Prayers and more prayers!
Hugs and prayers. One day at time, my friend.
Love, Kei
Tammy,
While I haven’t been keeping up recently, yesterday I spent quite a lot of time reading about Parker’s recent hurdles. Know that you, Parker, Reed and all the kids remain in my prayers. If you have any questions about the trach that you are just curious about or feel “strange” asking the RT or nurses or docs about, I worked on a respiratory floor for four years where 90% of our patients were trached. I would be more than willing to listen or talk if you need to. Haven’t seen you at bg’s to tell you, but know that I am thinking of you. I know I hardly “know” you, but I am here. You can email me at henrynjamieszkoda (at) sbcglobal.net if you want to talk. Also, if you need, I can talk via phone (I have free long distance, and would be able to answer any questions you have or help ease your fears (I hope!) If we were closer in distance, I would watch Parker for you in a heartbeat, after all nursing is what I do best, and I love little ones! Hugs and prayers from New England!
God bless,
Jamie
By what you have stated in your blog- your older children seem especially bright and love Parker more than some folks can imagine. Your older children-will be able to learn the suctioning. We taught many older siblings to do it and they did a wonderful job & I’m confident your children will also. Since Parker has a trach-respite care should be available- but I would definitely encourage as many of your older children to get trained on suctioning & demand the respiratory therapists to start training you all now. It will give you peace of mind and help-knowing that you don’t have to do it all-but this is something they can help with.
Hugs Tammy…..I am coming to visit today.
Love to you and yours, and of COURSE Parker loves his mom! What’s not to love?
I second the idea of a social worker, some hospitals only give them to you if you ask, but they can help SOOOO much. They can do everything to get you the respite care you need.
Prayers going out all the time…..
I am glad to see he is well enough to get out of the PICU. I have a hint that may help. Oversuctioning a person with a trach can sometimes produce more and more secretions. Not sure if that is his cas, but I thought I would let you know.
Just stopped by to give you a BIG hug and a very gentle one for your Parker. I do hope he doesn’t end up getting a cold. Keeping you all in my thoughts and prayers.
You should be getting some kind of nursing care – after all, you have to sleep and buy groceries and go on a date with your husband – all for your family’s good and your sanity.
Praying for answers to this.
Tammy,
Two things. First, there is a little boy in Samuel’s preschool class that has down syndrome and a trache. I always used to wonder why he had the trache, but now I understand. Anyway, he is about 3 and comes to school everyday without his mom. I’m guessing he only uses the trache and oxygen at night. Hopefully, that is the point that Parker will get to. Second, now that Parker has extra needs, be sure to contact DSPD and tell them that so you can at least be moved UP the list for respite care and Medicaid. The list is all based on need and more need gets you higher on the list! Good luck. We may see you on Thursday because we are headed that way, but we’ll have to see how the day goes.
Teresa
Many prayers, like many of the other ladies here – I cant begin to understand – but I am here and praying for you all!
Prayers and Hugs!!!
Tammy,
I can understand the feelings you are experiencing. We are scheduled to do Gabi’s trach on wednesday. Although I am very much looking forward to it, for her comfort, I am very scared for the what if’s and all the extra care it will require. This is my first baby, so I don’t know anything but we have gone through, but I am definitley feeling overwhelmed. I just keep saying to myself she is so worth all of it, so I must go on! It will get worse before it gets better, but it WILL get better! We continue to pray for Parker strength, and of course your sanity:)
Hugs!!!
Glad to hear that Parker is doing better.
Still praying for the both of you!
Well, I’m glad your phone works and that you are out of the PICU. What I dislike more than broiling in our room is when the sun shines so brightly you can’t get any good rest during those mid-day naps…or other little cat naps you might try to get.
I know I mention it quite a bit, but if you are awake late at night and just need to chat, I’m still having a really tough time with insomnia, so it’s a safe bet I will be up. I don’t know if you have Verizon or not, but if you do, we would have free “in” minutes anytime.
I will email my cell number.
Sending big hugs and all our love.
Miss E and Rebecca
It seems desolate right now, but you know you can do this. Parker will settle into life with the trach and so will you, and I have this feeling that Parker is going to be making a turn around now that his care is being better coordinated.
Stay strong, call or email whenever you’d like…my ears and heart are open.