Thursday, October 22, 2009

How Many Nurses Does it Take?

To give an insulin shot correctly?!?! Good gosh. This morning it took 3 nurses in the ICU to figure out the correct dose. I just stood there trying to help out, but of course, they had to figure it out themselves. Then they passed it to each other to double check...all ready to give it to my daughter...when I asked to quadruple check it. Only to find out it was an incorrect dose. DILUTED INSULIN PEOPLE! It means if it is 1/2 a unit of Humalog, it is 1 unit on the syringe. So, after that I ended up using my own syringe and doing the injection myself. RIDICULOUS. And this is the ICU.

If you can't tell, I'm officially over being worried, exhausted, and overwhelmed. Now I'm just annoyed. I swear if I hear one more time "wow, she's very medically fragile...this is such a balancing act...this is very complex..." I might hurt someone. We already know that. But thanks Captain Obviouses.

We were sent away from the ICU this evening. Not to our beautifully new 4th floor Pavilion with all our favorite nurses who are so wonderful with seizure kiddos...and neurotic mothers...but to floor 4 in the main hospital. A dark, gloomy place. With narrow hallways and tons of people. The nurses there are apparently "much better with Diabetics." But when I was leaving this evening and said goodbye to our nurse, she told me not to worry. "The Dr.'s just want us to get the formula down Kendall so it will help with her seizures." That's when I knew this hall doesn't know a whole heck of a lot about seizures or the Ketogenic Diet. OR MY DAUGHTER. We lost her pacifier when we were transferred from the ICU, and as the nurse was trying to get Kendall to suck on the hospital passy she offered to dip it in the sweet stuff...again...not much knowledge of the diet. UGH!!!!

So Justin is with her tonight. I know he can handle double checking the nurses. So I will get some rest and do it all over again tomorrow. Last night was bad for me. I absolutely hate the ICU. Its a big fish bowl and you hear way more than you should. I awoke last night to very disturbing emergencies. And the sweet 6 year old's future will be determined tomorrow. I will never know how it turns out...and that's probably for the best.

We are looking at staying through the weekend. That will total over 2 weeks for us. Poor Justin was suppose to go hunting this weekend and now it doesn't look like he'll be able to. I feel bad for him since he was so looking forward to it. But I guess that's life. Well, our life.

Kendall is receiving OT and PT in the hospital. The ladies who have been to see her so far have been great. AND....we were able to get bilateral AFO's ordered for her. So we will be able to cast at our bedside and pick them up later. At least I will be able to cross one thing off my list this week!!!

I really want to get her home and eating solid foods again. This G button was only suppose to be for supplemental fluid and medication. Not 36 oz a day.

Thanks again for all your support. Kendall is on the mend, but we still have a way to go before the permanent plan will be put in action. If I don't have a good feeling about things tomorrow I think I'm going to request a care conference. We seem to be getting different answers from everyone involved and its becoming more evident that not everyone is on the same page. That makes it impossible for us to go home feeling confident we are doing what is best for Kendall. So I don't care who's toes I step on in the process. If I didn't completely believe it before, I do now. Justin and I know Kendall and her issues better than anyone else.

Good night. Tomorrow's a new day.

9 comments:

Éimí said...

many many prayers coming your way from RI, I hope that you are able to take Kendall home soon, I'm sure it's the best thing for all of you!

Anonymous said...

You are certainly correct in saying you know your little girl better than anyone - and thank goodness she has such great parents to advocate for her..It's sad that when you are in the hospital, and especially the ICU, that parents have to be the ones "in charge" but it happens so much (I was ready to rip off heads when our son started the Keto diet in our childrens hospital). No one can better watch out for Kendall than you, keep up the good work. Don't hesitate for a second to request that care conference. She's YOUR daughter and you have the right for it to be as "perfect" as it can be when you leave. Hope Kendall continues to improve and hope Kamden is feeling better also. Prayers have been coming your way and will continue.
Donna

Reagan Leigh said...

Ugh. How frustrating! I know how you feel, I've certainly lost all faith in doctors and their ability to "know" my child. And the whole hospital experience...double yuck! I agree 100% with the care conference. You need real answers before you leave! Get them and then get the heck out of there!!! Continued prayers from Houston!

Bronx Cataldo's said...

I know what you are going through with most not understanding the Keto diet. I have lost count as to how many times they have added unflavoured peidlite to Finny's meds instead of water.I even remember in the ICU they kept insisting about giving him rectal Tylenol but you put it up he pushes it right out so it wasn't doing what it was supposed to. So I got them to OK our home med that is an approved Keto fever reducing med. It just ment bringing in a brand new bottle fully sealed in a box. Its a med that is on Matthews friends the English Keto Diet.
Ger

val said...

well, I am in a real Rock Band now, and we sing the song "You Gotta Fight for your Right" by the Beastie Boys. We all scream over and over that phrase in the song...
granted you don't have a mowhawk and this isn't a party, but same concept. That song is about kicking butt and not looking back. Fight for your right!!!

Dawson said...

LOVE LOVE LOVE the sarcastic overtones. That is SO my style of humor. And this is coming from somebody who is stuck in a small, crowded hospital room as I type this. So I completly get it. I can't even imagine having to stay 2 weeks and having to deal with what you are dealing with.

Nobodys emergency is bigger than their own, but thinking about what you have been dealing with helps put things into perspective for me.

Praying for Kendall and that she continues to recover and praying that managing diabetes and seizures at the same time will become a little more managable.

Continue to be the leader of her care. Nobody knows more about whats best for her than YOU

Cjengo said...

I read your blog so happy that Kendall is doing better, but thinking it's sad you know so many medical terms. I feel like I can receit a medical dictionary at times, don't you? Plus, you know even more because of her diabetes. I guess it's just life now. I am sorry for the babies in ICU, and I am sorry you guys are stuck in a gloomy place. I hope you get to go home soon and that everything regulates out.

therextras said...

Still praying for Kendall and her family - with more pleading in my voice. Barbara

Terri Limon said...

Jocelyn,
Its Terri from MISD. Kendall was on my mind a lot today, and I just wanted you to know I am thinking of you guys. I am sending prayers for Kendall's continued recovery and for your family's rest and resiliance through all this.
God Bless.
Terri