Home Sweet Home

We got home last night late dinner hour and I am exhausted!  Gabi is doing great!  We may not have had to go to the hospital anyway but better safe than sorry. Sleeping in that hospital room with an unsure baby, beeping round the clock, nurses coming in to check every hour (Yeah, I went ahead and told her through the night every 4 hours was OK).  She was a slightly new nurse and was a little shocked at my forwardness, but my usual favs would have known to not bother a “mildly” sick child every hour… even despite the docs orders!

Anywhoo- Gabi is once again doing great.

Here is the shortened version.  After throwing up blood in the car at Marissa’s trip, I had to zoom home while calling the docs. When I got home with the kids, there was A LOT of frank blood (bright red blood) coming out her G tube extension. I stopped her food and got back on the phone. First with our awesomest pediatrician NP that walked me through exactly what to do.  I was talking to the nurses from the GI dept up in Milwaukee and lets just leave it at I wasn’t too thrilled with their response.  I went around them and paged cardiology (Dr. Rao) and we all decided it would be best for her to be seen up in Milwaukee, which is what I had assumed.

Usually I am by myself, but I was lucky to have company this time with Colleen.  She was in the back with Gabi in case of more blood pukes. When we go to the ER all was smooth in the beginning.  Then it got exciting.  Gabi was fine but the decisions or lack thereof were none too great.

We got there at around 2:30ish pm and we were in the ER room until almost 11 pm.  With a “normal” kid, this is pretty expected but with a kid like Gabi there is no excuse.  They knew they were going to admit her but the rules state that a kid is not allowed to go to their room without an IV.  Fine.  I get that but when they try 6 times…. enough!!!  First one nurse tried then another, then they paged the transport team to get one and usually they are REALLY great at IVs (so are the nurses for that matter) but by this time, Gabi had not had fluids since that morning and she is bleeding in her stomach and with her cardiac problems, she becomes dehydrated VERY quickly.  SO- now she is dehydrated which makes veins extremely small.  So, with her already tiny veins, they are that much smaller.  I insisted that we just go to her room where we know all the critical care docs and ICU nurses and they are pros at getting IV’s in… but they wouldn’t let us bypass the ER.  One poor nurse took the brunt of our frustration but then things started to happen. An anesthesia fellow was able to come and successfully get an IV in Gabi’s foot even after a 22 hour service!  We called him magic hands.

So, after the IV was in and after me ALMOST loosing my mind, we got fluids in Gabi and an antacid of sorts to help stop the bleeding was given intravenously.   Thing were starting to look better.   We got our room assignment and after waiting another few hours, we headed up to room 418 where the nurses and docs did their assessment.

Rich and Colleen left by this point and I was still running on adrenaline at this point. I am usually in bed by 9:30 and it was past 11 at this point.  Gabi was exhausted! If I left her side, she freaked out so leaving the room even to go the bathroom was horrible.  Hmmm- I am a little trapped at this point.

She FINALLY fell asleep watching some Jay Leno and I had to run to the car and at least get my change of clothes. Then I realize at midnight… I am starving. I go to Cafe West and get some soup.  The chef recognized me and made me a grilled cheese to go with it.

When I get back up the room, the extra chatty night nurse insisted we get the admission paperwork done with. Usually the nurses are pretty good about filling those out for me and just have me sign the papers, but no not this time.

Question 1: How did you travel here?  Was your child in a carseat? Was the carseat buckled in?

Question 2: What is your child’s daily routine?
Question 3: What are your child’s favorite foods?  What is his/her meal schedule? nap schedule?

I am ready to throw this nurse out the window.

More questions:

If you have a daughter, is she menstruating?
Please describe any previous hospitalizations your child has had?
Please describe any previous pain experiences your child has endured.

What is her reaction to the pain?
What is her reaction to the pain?

IF your child has been hospitalized, how has this affected your family?
How has this affected any siblings?  Do we need to call Child Life for those siblings?
Are you feeling anxious?  Is your child feeling anxious?  Would you like us to call the chaplain for your anxiety?

Do you know what I wrote across the top?  Are you freakin’ kidding me?  Look at her records that you have in your system!! Yes I have a carseat and no I am not afraid for my safety or the safety of my child and No my one year old child is not menstruating!

After I filled out the ungodly paperwork and nurse did not appreciate my bitter sarcasm, the cardiology attending came in and told me the plan of care for Gabi.  They were considering doing an endoscopy to diagnose an ulcer or gastrinal tear but he said the treatment for these would be the same as what they are currently doing so he wanted to avoid any sedation for Gabi and diagnosing her would not help them make decisions.  They were assuming there is some kind of either irritation or ulcer due to the daily aspirin she is on.  They prescribed an antacid for her and she received several doses intravenously.  The bleeding was under control almost immediately.  She is still pooping out quite a bit of blood but she is getting it out her system.

SO- the next morning, after the cardiologist made that decision, I figured we would be out of there in no time.  They needed to feed her and observe her for 2 hours while eating to make sure she could hold down her food. Fine.

She was up all night; we slept off and on for a few hours. By 7 am, I was pushing to get the food started. Then the nurse shift change happened so I had to start pushing with a new nurse.  Don’t get me wrong, the nurses are wonderful!  I have no frustration with them; they are just doing their job.  So our day nurse is finding out if we can start feeds.  She comes back and tells me they are still deciding whether or not to do the endoscope.  I said that that decision had already been made by cardiology and GI together.  Well, this decision didn’t get communicated to the ICU docs. So, the ICU attending said we had to wait for rounds and they were specifically waiting for cardiology to come up from the 3rd floor.  I paged Dr. Rao but he was sleeping.  Nancy was busy in rounds. SO we wait.  We waited until 11:30 in the morning for rounds and I was ready to loose my freaking mind!  Gabi was totally fine and everyone agreed but the docs needed to officially come together and make some decisions! Ugh. AND- I was trapped again so I was hungry!  I texted my dear friend Chris and he brought me a diet coke and pizza!  Thank you so much Chris. Before that, I had brought a care package for another family in on the 3rd floor with pumpkin bread and chocolate covered pretzels.  I tried the pumpkin bread, which I am glad I did because it wasn’t very good….and Gabi loved the chocolate on the pretzels.  Even though the nurse came in and saw chocolate on her face and wasn’t too happy with me.  oops. sorry wolfe family. I ate your care package.

We turned the feeds on immediately and in rounds they did say her hemoglobin numbers from a CBC count were not normal but this could have been due to dehydration.  So they needed to repeat those labs at 3 pm. Dr. Rao also wanted to get a BNP to measure how bad her heart failure is. She had lost about 6 oz and actually her height was .5 inch less. She was loosing weight and shrinking, which obviously were not good to hear.  So, Dr. Rao wanted to make sure she just needed a new nutrition plan and her cardiac function was not worse cuz this can make her loose weight.

Her CBC came back normal y 3:15, she had eaten for 3 hours without one vomit.  I had a new feed plan from our fav nutritionist. The ICU docs wanted to wait until that BNP number came back but I insisted that Dr. Rao could just call me with that number. They said she had to wait,  I paged Dr. Rao he told me we could leave. I love that man.

So we were out the door by 4:30!  Gabi has certainly taught me to be an advocate and that every rule can and should be challenged!  I feel that power the administration has over me and it makes me crazy!  Crazier than usual.

I will call Dr. Rao and get that BNP number today, although he was on service for 220 hours sleeping on and off, and he was going home today to see his family.  If it is urgent, he will call us.  If not I trust him he will call me soon.

thats it for now.  We are home! We are very blessed!  very.

Love,

Teri