This morning Drew went to the playroom and played for a while. He seemed to be in a decent mood so we were pleased. They had to do his dressing change & PICC dressing change and it took some coordinating to get child psychiatry, the PA and the appropriate nurses here all at the same time. Drew has been mostly off his monitors and we are free to go wherever we want. Well when he came back to his bed and we got him hooked up his oxygen saturations were around 80-81. I asked the nurse if that was a good read, because that was very low for him. She told me it wasn't picking up. I asked if she was sure, because I'd always been told that if the pulse and the heart rate matched (they did) then it was a good O2 reading. She said no, it wasn't a good wave form. I kept my eye on it, and it stayed consistently at 80-81, then started dropping into the 70s. In the meantime they gave him his ativan and fentanyl to start his dressing change. They finally believed me that his oxygen was low and switched to his toe which gave a reading of 75. 75 is not ok. Then they started to get oxygen on him but they couldn't get the tubing right, had the wrong kind of mask and generally seemed not to know what they were doing. It was so frustrating watching his cheeks turn blue and have them fumble around. I could have set it up faster! They proceeded with the dressing change even though his oxygen was so low and still no one called a doctor. I finally told someone walking by to get one of the NPs because I was very concerned about his oxygen and it was not this low just from him being "upset" about the procedure. She finally came in and got him on decent blow by oxygen and then a cannula at 1.5 liters, and he's now barely holding at 94-95. They decided to wait on the PICC line dressing change.
They think it's from the ativan/fentanyl combo but I think it was low before they gave it to him. He still had a fever last night and a runny nose and I think he might be sick with some respiratory virus that is making his sats drop. They are going to start giving him just ativan for dressing changes. They also seem to think that if it was from the drug combo it should wear off in two hours and his oxygen should come back up by itself. It's been about two hours now and so far I haven't seen an improvement. It's looking like we'll be here at least til the end of the week.
Drew being distracted by some video games, oxygen back on
22 comments:
I'm so sorry, cuzzy. This is so frustrating. I wish I could hug all of you and make it all better.
In the meantime, if you need us to keep Ava a little longer, just let us know. We're loving her up.
dang it! some ups, some downs. i know you must be SO sick of this! i am feeling what must be just a little bit of your frustration right now. i am so glad that drew is having fun again and that you all have more help in making the dressing changes and this stay in general be a bit better emotionally. good for you for advocating as well, andrea. momma knows best! talk to you soon love.
Wow... I'm glad that you are an observant mom, and that you are aren't afraid to grab people and make them do something! I will keep him close in prayers this afternoon and evening. Hang in there, Mama... take a deep breath and know that God is watching over Drew.
I bet you could of set up the oxygen faster. Sometimes I think us moms know more than the nurses. I'm so sorry your having a rough day. I hope they figure out whats causing the low sats and fix it soon. I know you all are so ready to leave that place. How is the incision looking? Better I hope.
I'm glad to hear he can go wherever he wants. I'm sure that helps with the stress a bit. I'm always keeping you guys in my prayers
hang in there - your instinks are usually right and they will learn that. I keep thinking about you guys and wish I could be there to help. Miss you all.
Love, Dr. P
I just reviewed my comment!! sorry about the "stinks" in instinct - I will proof read next time!!
Dr. Puxlysdioflfhsidfsldfjsiu
Andrea...you know we're coming up there next week...are you just waiting for us??
And about those sats...we had a problem in that same room with the monitor. They had to bring in a portable one to confirm that the numbers were accurate. After his meds should have worn off...if his numbers are still low...ask the the other sat monitor and compare (it might just give you a piece of mind).
I hope you get home soon! Is his incision looking better??
and you...are YOU doing ok??
Hugs and kisses to you all!!!
Kathy
You're an incredibly observant person Andrea...so make sure they listen to you (as it seems you have) as I bet you're right about a cold. He's probably got a little chest cold starting...gosh knows hospitals are a good place to get exposure to them.
I'm sure you're just immensely frustrated and want to go home at this point. Hang in there!
Just to affirm you, I'm a peds nurse working with pulse ox ALL the time. (kiddo's with trachs on venitlators) If the heart rates match, we call it accurate.Good for you, for taking action! You are still in our prayers.
amber
Yep, you were right, and they were wrong. But what a BUMMER to have this happen all of a sudden. Hmmm, at least you know what his body might do when he gets a virus. I'm through with my antibiotics, but still not 100%, otherwise I would be down there in an instant to kick off my summer!
oh man. I am so bummed to hear that he had to be back on oxygen. I am so proud of you, Andrea, for knowing what Drew needs and sticking up for him. You are an awesome mommy!! That is great, though, that Drew is able to be up and around and have a bit more freedom. If only that freedom could reach all the way to Sacramento. Soon, hopefully!!
Hey Guys:
When Riley gets sick, her saturations usually drop as well. I'm sure it's just a virus or something, and his sats will spike back up when he's better.
I know how hard it is to watch those oxygen numbers (and other vital statistics) moving around on those darn monitors. Try not to stare at the monitor all of the time.
Hang in there and know that this will pass.
-Paul Thompson
Just wanted to let you know we're still here thinking about you guys. Those ups and downs are so frustrating, especially when you get so happy and hopeful that the end is near during the "up" times. But God said, "Never will I leave you and never will I forsake you" even if you're up or down.
Still praying :-)
Jen Smith
I'm wishing you guys could just be together as a family again, this is such a bummer. As usual, you're doing your best and YOU are the best person Drew could have as his advocate.
These lower sats must be worrying I hope you get some answers. Know we're praying for you.
With love...
What can be said... this stinks! All we can do is pray: "God, please work some BIG healing in Drew's body. And continue to give Andrea and Dan SUPERNATURAL strength to survive this long hospital stay. We KNOW God that you are there with them every day holding them up and we thank you for that!"
Amy
As a previous nurse indicated: if the numbers match, the sat is right. If you see a wave form, it does have to be good also. If it's flat or dampened, whatever the number is ---it's crap. We shouldn't have to be telling you moniter reading secrets though--It is NOT your job. The fact there was a desire to continue a procedure without an accurate number does give me pause. Talk to the Nurse Manager if you have concerns. (There is a chain of command --you may follow it as far as it needs to go!)
If they are going to be using fentanyl and ativan for dressing changes, it is important. Fentanyl is relatively short acting, but potent. Ativan can hang around for hours -- 2-4, depending on dose, with definite potentiel for respiratory depression. If he's already compromised for any reason, he really does need to be monitered...
...and by someone ready to use interventions immediately if he needs them.
Hoping his CXR isn't showing any changes !? Does bring up one other potentiel: he does still have his SVC to PA shunt? If so, there may be a chance he could shunt blood when he is aggitated and bearing down i.e. cause decreased blood flow to his lungs resulting in dropping sats. May be a question for Dr. M or H. I wouldn't trust anyone else's answer. As you have unfortunately found out, the answer of the unknowing is most likely some form of bullshit.
Still thinking, caring, and praying. You are almost there.!!
(...consulting services still available. Call anytime.)
Hang in there...we're continuing to pray that things will improve and that Drew will be healthy enough and ready to head home soon.
Much love,
Laurie
That is so frustrating....I remember having the same frustrations when nurses were fumbling around, trying to figure out oxygen flow, etc. and thinking, GIVE ME THAT!! It's good to stay on top of things, and continue to let the nurses know what your gut feelings are. Mamas know best! I'm sure that whatever is going on with Drew is minor and will pass quickly and soon those sats will be back up there and you all can get home. Still sending many prayers your way!! xoxox
How awful to have to sit there and watch your child being handled by people who don't exactly seem like they know what they are doing. Hope you get to go home sooner than you think. Miss you.
Bummer! WE are praying that he gets better fast! I know it seems like you have been there forever (you have)but just think that the end is soon to come. I will be praying that it comes sooner rather than later.
You and Dan are both doing an amazing job. God knew what he was doing when he placed Drew into your arms. A momma that will stand up for him and be there through everything (even those not so fun dressings)with patience and understanding and a daddy that is gentle, patient and the rock that his family needs right now. Keep up the good work!
I found this quote below and I had to send it because you are both such examples of how God is working through you right now.
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, “I used everything you gave me.”
You are both using every bit of talent that God gave you. He is looking down and and saying my good and faithful servants in whom I am well pleased!!!
With love,
Jen
Man!!!! You are a great mom for making sure they actually are listening to you! God gave us mommies that instinct for a reason! And you use it very well. Praying for you guys tons! Hopefully only a little longer!
Love, The Sheridan's
Dear friend: you are an amazing woman, and I can't imagine how exhausting it is to experience the ups and downs of this long journey. I continue to pray for Drew's healing, for wisdom for the healthcare providers (I'll ramp that one up a bit, eh?), and for you, Dan and Ava. God bless you for your diligence and persistence.
As someone who has worked in healthcare for almost two decades (!), I've seen it time and again -- you have to be diligent because you know your boy best -- what you KNOW is different versus what they say is "normal". Keep up the good fight, sis -- you are bathed in prayer.
Love, Lori
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