Monday, October 26, 2009

A big, long post

Ok, first things first. Look at this angel. The newest blankie reciever. I'm trying to get caught up on the blankies, a daunting task after spending 10 days in the hospital. But we'll get there.



My sweet niece who shares my name, Lacey, is a newlywed that moved to Florida with her hubby who is in the Air Force. She heard about a Buddy walk near her and wanted to go, to represent her cousin that lived on the other side of the country. We sent them Jaxson t-shirts, and they went and walked for Jaxson in Florida! I love it, what a great cousin. We miss you Lacey bug.




Also, I got another phone call today from the hospital. All these tests are coming back now that we're home. But his stool sample showed c-diff.
ding dong, the light turns on!
That would explain the wretching and gagging, the not tolerating feeds and the fussiness. We are not going to treat it because he's doing better, and this more than likely started back last Wednsday, so we are nearing the end. But it goes to show you that even on protective isolation, my baby catches stuff. The baby accross the hall has been waiting for a heart for two months. He's in protective isolation and hasn't caught a thing. Nice.
And I figured out how to get the trach mask with oxygen tubing. Home care brought it out today and we'll try it in the morning.
I need everyones help with a couple of things. First, the discharge planner looked into nursing care for Jax, and it turns out our insurance will cover it at least for 60 days, maybe longer. A nurse is coming out tomorrow morning, but I'm a little nervous about it. Not that I don't think they can care for him, but its too wierd having someone in my home taking care of my baby while I'm there. Thats my job. I don't know if I can handle it. It would be nice for me and Ray to be able to go out, but thats random and I can't call the nurse to come out at that time. Does anyone have nursing care while they are home? And do you like it? I love taking care of Jax, I really don't think I'll use it after tomorrow.
Second, Julie is asking for our help tonight. Arianna's nurse told her today that there is a lady that works for her that just had a baby girl. The baby aspirated on meconium and is in the NICU. Then the mom had a stroke yesterday. This is a single mom that just moved here from California. She has nothing for this baby. If you have any baby stuff that you can donate to this mom we would greatly appreciate it. Julie got her a crib already. If you have baby girl clothes, blankets, diapers, anything this mom could use please email me at laceyrugg@hotmail.com so we can help this mom in need.

12 comments:

Stephanie said...

Lacey - I know exactly how you feel about the nurses, but once they are there and you find one you like - it will be worth it. I would make a suggestion that you try convincing them that you need their services during the night. THis way, you get the best of both worlds - somebody watching Jaxson, and your days to do as you need to. I still can't believe that the Becket waiver isn't covering at least night time nursing for good. I will e-mail you a list of things you should probably think about before you have a nurse in: like will you allow somebody who smokes? shoes off? parking? how involved do they get with the other boys? boundaries with conversations with the family? involvement in therapy? Hugs!

Steph and Christopher

The VW's said...

I think that I would have a difficult time having nursing as well. But, this would give your body a break too! Also, once you get comfortable with the nurses maybe you could run to get groceries, etc., while they are there. This would make little tasks that you have to do each day a lot easier I bet. Of course having someone in your home and messing with your routine might be hard too. It would be really nice if they could stay during the night, so that you could get more rest!

Praying that things continue to calm down for you and that Mr. Jax behaves himself! :) HUGS!

Regina said...

I have a home-health nurse that comes to check on Jayden. She doesn't stay and take care of him. She just checks his vitals and weighs him. Since Jayden has had a tough time gaining weight, that's mainly what she does. But it's also nice that she listens to his lungs to make sure they are clear. Other than that, I can take is tempature and sat. levels. I monitor that stuff all the time. But maybe you will get a nurse that comes and stays with Jax while you can run errands or spend time with your other boys. I hear you about not wanting anyone else to take care of your baby. I'm the same way. Jayden qualifies for a thing called the medically fragile waiver here in NM, but I chose to not have a nurse come and take care of him. I love doing it mayself and at least I know certain signs with him to look for when he's starting to get sick. Good luck! Oh, I also agreed with the first comment. Make sure they know what you want, no smoking, no shoes. I do that too!

Sasha said...

Oh that is so great that you got the mask that you wanted. Glad to hear that you know why Jaxson was sick. Don't worry Jaxson isn't the only one who alwasys catches something. Wysdom also has the same issue!! Frustrating isn't it. I would say let the nurse come in. I have had 2 different nurses come in and also have a student nurse as respite. Of course screen them now because of the H1N1 though. We used our nurse in the first 3 months of Wysdom's life. She was great. It did take me a couple of time in to get used to her. By the third visit I was like "see ya later I am going for a nap"!! Or a bath!!! Don't get me wrong I love my little man but it allowed me to get recharged or play with my daughter who needed some attention. If you can use it. My husband and I would stay while the other did errands. It was great and I miss her a lot. Best of luck with your nurse.

Kristin said...

I had a neighbor who had the overnight nurse when their son got his trach. They seemed to have a good experience, but yeah, that would be wierd. Good luck.
I just took over a pretty good sized bag of Piper's old clothes for Arianna's nurse's neighbor.

Tausha said...

We haven't had an in home nurse but our friends have. It has been a life saver for them. I think you should have them come so you and your hubby can get out and have some alone time, that is if they are willing to come at that time. I think you should let them come in and help so you can renew your strength. I remember when I was having the hardest time breast feeding with Sam, I was in so much pain, so tired and just worn our emotionally, physically etc. My Mom said Tausha, stop breast feeding. She said if you continue then you will see a Child thriving but a Mother dying and in turn the Baby will not thrive anymore. It was the best advice. I stopped breast feeding and felt better physically and emotionally and felt I could take care of Sam better. Hope that makes sense.

Emily said...

How sweet of your niece! I love that! I too think you should take advantage of the nurse. Would be kind of strange at first... but think of how much stronger (emotionally and physically) you will be once you get that extra help. Loads of love

Anderson Family said...

That would be weird having a nurse in the house while you were there. Maybe you could switch to a nurse at night so you could get some much needed rest - that would be awesome! Although running to the fabric store, grocery store, errands would also be nice and so fast if you didn't have any of your kids with you - that sounds pretty good too! I think you should definitely take advantage and get some "you" time!

I'm still working on these blankies - its been hectic around here lately - but I will get them done.

Stephanie said...

I'm glad things are finally settling down for you. I can't believe Jax had C diff in the hospital and after 10 days they are just now finding out?!??!?!
Ugh...
I hope the nursing works out. We've never had it and there were times it would have been a huge help, but give it a try, if you don't like it... can her.
You know best :)

Heather said...

Hey my friend.Hope you are all beginning to adjust to your new normal.As for the nurse.I totally get it.Zoey has qualified for 26 hours a month in respite care since birth and I have not taken a minute of it.However that doesn't mean I shouldn't have because I probably should have as should you.Is that enough shoulds??Anyway,consider it please.It may turn out to be the best thing you ever did.Love to you all

Michelle said...

how sweet that your niece and her hubby were able to attend a BW where they live!

Preemie Miracle said...

lacey, I just got your message on my blog. I called the Utah county health department because i am so frustrated with the idea we have to wait in big lines around SICK people and people with Germs. SO.... Utah county has changed their idea. They are giving out tickets on Monday for their clinic on tuesday with "appointments" if you will. But Why NOT give them to our pediatrcians. They know who is sick... :)