For some unknown reason, the cardiologists have ordered that Joshua's alarms go off when he sats lower than 75 and higher than 90. The kid has been hanging out at 70-74% all morning which means that his alarms have been going off constantly. Those stupid things are not quiet. The nurse asked why it's between 75%-90% and the doctor said that's what the cardiologist ordered. It used to just go off at 70% or lower. It's going off so much now that no one even comes and checks on him. What happens if it's a real alarm and I can't find anyone to help? Then what? I guess I'm back to feeling like I can't leave for even a second because I'm not comfortable with it. I HATE IT!
I also have to wear the stupid gloves and gown because they have to test him for MRSA since he just came back from the PICU. There is nothing more unnatural than having to wear gloves to touch my own baby. Plus, I freaking sit here for 16 hours a day and they expect me to wear gloves that entire time...not gunna happen...sorry....
Also, the social worker is only allowing 3-4 nights at the hospital hotel again. We can't afford for me to stay there the other 4 nights a week which means that I have to travel back and forth between my friends house and the hotel again. HOW IN THE HECK DO THEY EXPECT PARENTS TO LEAVE THEIR BABY 2 HOURS AWAY FOR NO OTHER REASON THAN THE SIMPLE FACT THAT THEY HAVE NO PLACE TO STAY? If I didn't have my friends house to stay at, I would be sleeping in the car because I REFUSE to leave my sick child to go 2 hours away. It would be one thing if it were immaturity because he's a preemie, but when he is as fragile as he is, there is NO FREAKING WAY I'm leaving him. We didn't expect him to crash the first time, what's to say that he's not going to do it again.....and if I weren't the one to have found him last monday, he would have been dead. I'm to the point that if I had to do it all over again, I would have taken him to Riley's for the simple fact that they have the Ronald McDonald House. I've been pleased with the care of Joshua, but I'm not pleased with the fact that there is nothing here to help the parents with a place to stay. It's just frustrating all around. (apparently she seems to think I NEED to go home for mental health purposes....i'm pretty sure that isn't her place to decide when I go home and what I need mentally)
Finally, they took Joshua off of his pain meds completely. First of all, the kid is only 3 days out from having his chest cut open, I would think that he would still need something a tad bit stronger than tylenol (without codine). Secondly, they used the tyelnol with codine to get him out of his high sats, high high heart rate and respiratory rate last night. What are they going to do when it happens again? Just let him sit there struggling to breathe until he gets severely acidotic again? Once again, not going to leave his side.
Like I said, I'm just in a pissy mood last night. I'm tired of watching my kid suffer. I'm tired of worrying about EVERYTHING. I'm tired of the stupid alarms going off constantly and giving me a heart attack. I just want to bring Joshua home healthy.
I just want to scream at the top of my lungs right now......
19 comments:
Oh Jill.
If you never felt angry, I would be concerned. What your child and you are going through... I just can't imagine much worse is out there. Feel angry... take your car somewhere remote and SCREAM. Find a way to get it out because it is valid. So, so valid!
I love you and am continuing to pray pray pray. I will add all of these specifics to the list
-Mol
Jill, you were absolutely right when you said God does give us more than we can handle! I'm praying for you right now that He will make himself obviously felt by you as He willingly goes through this hell with you. Praying for Josha to cope physically with the changes and move forward with smooth recovery. Praying for the details...
I am so sorry you're going through this. I can completely understand how frustrated you are. The alarms about did me in when Vince was in the hospital. We were in an 8-baby pod (all heart babies) and between his and the other babies' alarms, I felt like I was in a war zone. Completely freaked out about my son and then overstimulated to boot. It is incredibly wearing.
I can't believe they are limiting your time at the hospital, especially with Joshua's fragility and the fact that you live so far away. Is there anyone (maybe a social worker or patient advocate) that can help you see if an exception can be made?
I continue to think about and pray for your family. Joshua is so blessed to have you in his corner.
Jill, I have prayed while reading this last posting. I am so sorry you have to go through this. God is with you. It is okay to be angry. These are true human emotions that God made you with. Don't ignore them. Vent when you need to whether through this blog or go somewhere to scream out loud. We love you, Shane, Caleb, Hannah, and Joshua (my little Popeye).
agree completely with everything you've said, Jill..and those loud machines..oh gosh those loud machines. Natalie never got any rest because they'd set it strangely too.. I can hear the sound in my head right now..
I am so sorry that you feel angry, upset, and all of the other emotions you have to go through. I'm happy that you're letting it out because we all want to hear exactly how you feel. Keep telling it like it is.. I hope that today gets easier. You are so tough.. such a tough mama. But I know that it's hard (sometimes feels impossible) to keep being tough. xxxx
You have every right to ALL your feelings during this time. When you vent and share your specific concerns we can pray more effectively. Love You!!
I am so sorry you are going through all of this...what a pain. I don't understand why they can't change the alarm...I actually got to know the machine well enough that I changed it myself. The hospital/hotel doesn't make any sense. Can't you stay with him all night? I can't believe there is no where for a parent to stay...that is unacceptable.
Keep your faith...you are the strongest woman I know.
Scream, sometimes you just have to.
The day nurses hated my husband so much because he was so vocal about everything that he was concerned about, but you know, that really did save Julian on more than one occasion. Don't be afraid to voice your concerns to ANYONE.
We made friends with the chaplain in our NICU and she was definately an advocate for him when we were not able to be around, and I don't know if she was supposed to, but she would call us if she was concerned so we could call or rush over to find out what was going on. We pray for all of you everyday, you WILL be home soon.
Hi Jill - we are all praying for you and Joshua and your family. seeing your frustration is scaring us more about what's to come. we are set to start inducing labor later this afternoon. everybody that has been through this keeps telling us that even though this is the hardest thing we will ever face, it will all be worth it when we take our son home for good.
we will all be praying for you and your family and know that things will get better for you all soon. take care of yourself so that you can do all that you need to do for your family. you will find the strenght to do what ever is necessary to get through this. wendy and rhonda
I've been following your blog for about a month now and wanted to offer some help with a non-profit that I am chairperson of. I don't know how to get hold of you so if you could please call me at 502-514-1305 I will see what we can do for you. I don't recall what hospital you are at or where you live and that will tell what services we can provide.
Our prayers are with you and Joshua. Our son is 6-years-old and has HLHS along w/other defects. He had his Fontan in 2008 but it didn't go as planned and it had to be reversed. He is still living w/the glenn circulation and doing pretty good. It is so hard in between the Norwood and the Glenn but I promise, it will get easier. Just stick in there and if you need to, take it out on the nurses/drs./social workers, etc. They will understand and you can always apologize later. They need to know how you feel about things and you don't need to bottle it up inside of you until you feel you are going to burst!
I'd love to chat with you and help you in any way I can.
Katie Columbia
carepage:IsaiahColumbia (HLHS,DORV, Post Glenn twice after failed Fontan-July'08)
www.GodsSpecialHearts.org
Dude. I've so been there! I told the hospital to kiss my a** when they tried to chase me off. At the time of my daughter's surgeries there was no place for parents to stay while in the NICU. I told them I would find a bathroom or lactation room or chapel to take a nap if I had to. What could they do? Arrest me? I practically lived at the hospital for 6 hellish months. I couldn't leave her and I too saved her life more than once. He's your child and you have every right to be with him. Stick to your guns. Since you are pumping I hope they are at least providing you with hot meals. Praying in IL, Crystal
Jill, it is your right to ask to talk with the nursing supervisor or manager on your floor. Nurses are to be advocates. If you feel that your child is not safe, please, talk with the supervisor. She can be an advocate to talk with the doctor about the alarm settings if your assigned nurse doesn't have the guts to work it out. It doesn't have to be like this. No, you don't have to rant and rave to get your feelings across, but do make your concerns known. There are people out there that will take care of them. Sometimes, you just don't have a very pro-active or creative nurse. (This all coming from an RN herself.)
Just some suggestions-the alarm may be able to be turned off at the bedside and just on at the nurses station so the nurse hears it.
-The cardiologist can be called...He's not god.
-Check to see if your church may have another church contact in your area that could help you out with accomodations, meals, a shower, etc.
-If you feel Josh is in pain, PUSH to get it addressed. Again, your nurse is to be your advocate. If she can't get anywhere, ask to speak with the doctor. (I made the mistake of not being assertive enough to get my daughters pain needs met when she came back from a surgery on just Tylenol with codeine. They just assumed since she was on a Morphine wean that she would be covered.)
-Finally, you'll make it. Lean on those everlasting Arms of Jesus. Pray, pray, pray. And we'll be praying for you. And you may need a break and some fresh Fall air! ;-)
Jill, scream. I did. I do. Sometimes it is the only way to let the stress out. Please, Please remember that what you are going thru is NORMAL. 100% NORMAL. Let me say that again - these feelings are normal. Sometimes I just wish that there was a "So, your about to become a heart parent" handbook. Something where parents who have been thru this before could give hints/advice. But, no matter how anyone spins there tale of this road, it is not 100% the same as yours. And it is so hard to imagine untill you are 100% in the middle of the storm. My heart aches for what you are going thru - although it is now your "normal" it sucks and it is not fair. Not fair to you, to Joshua, to your husband or your other children.
I am sending prayers that you come to peace with this new normal. I know it is hard, it friggin sucks and not one moment is fair....
Shannon Egan
My nurse today has been amazing. She actually talked to the social worker for me. She wasn't able to get anywhere with her. >:o(
My nurse did in fact ask for tylenol for Joshua today. Thankfully he has not needed anything for pain and has been comfortable all day. I'm thankful for the nurse that we had today. She let me dump on her and listened with compassion. She's amazing! :o)
Jill - can you request a new social worker? Or ask to speak to her boss? Something is just now right with that. There is no RMH around there? I thought they were near all Children's hospitals so that parents could utilize them if needed???? Don't give up - fight to stay near Joshua's side. He needs you. You need him.
Shannon Egan
I just want you to know that I'm crying and praying for your family right now. I don't want this for you. I don't want it for anyone. I know God has purpose behind trials but when you're in the middle of it, it sucks. I pray that you feel His love beyond anything else.
Praying for all of you. Thankful for your nurse today. Sometimes it only takes one act of kindness to start a reaction to more. :) Rainy
I'm smiling while I read this, not because it's funny, but I totally know the feeling of needing to vent! Coming to your site from a link from another HLHS mom... My Annabelle is 2 months old and still in the hospital from her Norwood, and I TOTALLY get how annoying the beeping is! IN fact, on occasion (shhhh...) I've helped myself to the silent button if the beeping is for a non-serious reason (and after 4 crashes in 2 months... I KNOW what is serious beeping unfortunately!)
The alarms at 75 DOES seem crazy... Annabelle's is 70/100 usually (used to be 70/90 but they were nice and put it up to 100 because occasionally she'll sit in the low 90's)
I totally feel you on the sleeping arrangements too. We have a RMH here, but I don't use it. We only live 45 minutes away, but even that is too far for me. Everyone tells me I need to sleep at home more, but sometimes I think that would be harder on me because I'd stress more. I have gone home on occasion because my other kids needed me there (my in-laws are staying with us to help out at the moment) but for the most part I actually room in with her (which makes the beeping OH SO VERY ANNOYING!!!)
Anyway, Hope tomorrow goes better for you!!!
The only patient advocate that Josh has is Jesus and you. Sing about it Sister.
Josh needs a status: Stop the beeping!!
Call the cardiologist every time the alarm goes off and leave a message. Let him know that the each message represents an annoyance for you that is completely ignored by staff. Annoy them until they stop the insanity.
We have a house in Charleston. Come live in it. All of you. Not this time, but before the next surgery. Come. Come and live at the beach. Why shouldn't non hospital time be relaxing. Extra sunshine helps sanity!!
You and Josh and your whole family need adequate care.
Daycare - free through the Christian learning center at the Church, yea - free.
Meals - Coordinated by a meal coordinator & volunteers cooking home cooked meals, no yankee pot roast!
www.cross-bridge.org
Prayer!
I am sending photos of the 2nd house we have now.
Before you go to the hospital in the AM run on the beach - for sanity.
www.musc.org - 1 of the best in the country.
We are begging for ya to come.
SQ
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