Wednesday, January 25, 2017

Monday Jan 16 '17

Go home from the hospital day!

On Sunday night we stopped tube feeds and went NPO at 4am to prepare for the barium swallow study scheduled for in the morning. R was not very happy about this decision and tried to nurse all night long, thankfully, he didn't mind about the not eating portion ha. We were rudely awoken on Monday morning around 645 by this hateful ol'PCA.

 (Strange fact, at ETCH the hire PCA (personal care assistant) over a trained CNA (certified nursing assistant) They literally hire people who have zero training in the medical field to work with children. Blows my mind. The CNA class is very simple and doesn't really train you for the medical field but it does give you a glance of how to act/present yourself in the medical world. Some of the PCA's there are great whereas others I wouldn't trust to turn off my light switch. I think if the hospital were to host a CNA class focused on children then hire some of the students it would have a more functioning staff. [rant over,for now])

Anyways, we were rudely awoken before the sun and had vitals taken. We were advised to get up and be prepared to go down to perform the barium swallow study. Since we are wonderful patients we did as we were told. Then we waited...

Still waiting...

Still waiting...

We could be sleeping, but instead we are sitting here waiting to be called for this study...

Keep in mind I had all of our toys and items packed up ready to leave. All DVD's in the bottom of some random bag. Thankfully I did leave peppa pig and george out for comfort. We were rewatching the hospital movies for many many hours.

Finally the time came for the study, and can you guess who came to take us down?! Ding, ding, ding, you are the winner. That same hateful PCA came stomping in with her hateful face and yelled, "ya'll ready to go down?" I answered yes ma'am but please give us a minute. She slammed the door and waited in the hallway. I quickly got up and grabbed my shoes, changed R's diaper, grabbed his shoes, and then she came back in again. She questioned, " We need to to going, are you still not ready? I thought I told you this morning to be prepared to go." Politely I responded, "just one more minute please."

Eye Roll & Door Slam. -PCA

I finished preparing R, grabbed his mask, and met her in the hallway. Her eye rolling and muttering comments continued all the way to the x-ray room. She said she would wait to take us back and I quickly informed her that wasn't necessary. [Eye roll, snide comment.] We were then greeted by a UT radiology tech student who was very nice. She talked to R and gave him some stickers. She said that we were ready to go but we were waiting on the speech pathologist to administer the feeding. So we continued waiting...

While we were waiting the radiologist tech came out and we talked about R's medical history, then she began mixing the barium stuff. While she was mixing it up I caught a smell of the powder and a light bulb went off in my head.

>>> Oh no, that really smells like strawberry flavoring. Surely, that isn't flavored with strawberry? Surely, they wouldn't schedule my child who has numerous food allergies including imitation strawberry to have a study containing imitation strawberry? I am really over thinking this. Just focus on the fact that you are wearing houseshoes in various places of the hospital. You are really that mom. #HomelessStatus Okay, yes that is definitely strawberry. Now be that mom who causes all the issues.... <<<

Tanner: Excuse me, ma'am. I hate to ask, but that really smells like strawberrie....
Tech: Strawberries? Yes, it is already flavored. Most kids love it and say it taste similar to a strawberry milkshake. Isn't that awesome that they go ahead and flavor it so the kids don't have to taste the chalky taste of plain barium.
Tanner: I'm sure most children love the taste, it really smells great. But did you happen to notice on his chart that he is allergic to imitation strawberry? For example, they flavor bactrim and he has had a reaction to it every time that we have tried it.
Tech: Blank Stare
Tech: What kind of reaction does he have? Can he handle a few tablespoons?


>>>First off, he has never had over 5ml of the stuff and he swells up, whelps up, rashes, diarrhea, and once vomit. A few tablespoons of the stuff could require an Epi. Secondly, my mind laughs. R hasn't ate a few tablespoons of anything really in his whole life. And the strawberry one was just the first stage. They needed him to eat a few tablespoons or more of at least 4 different textured things. This study would not be completed with or without the strawberry goop. I could still be sleeping....<<<

Tanner: Goes into detail of reaction. Ends with, I really don't believe that it is a risk that I am willing to take? Is there an alternative or a formula not involving flavoring? He had a barium enema in the past and the liquid they inserted into his bum was clear, could we use that liquid instead?
Tech: I do not believe that this would be a very safe study if we proceeded with the Strawberry... She pours it down the sink.
Tanner: I go into the "I'm sorry's" and then I began asking how were they uninformed of his medical history and food allergies.
Tech: Kinda rude and defensively "That is something you should have spoken to your doctor with. That isn't my job. I just do the scans."
Tanner: Oh okay.
Tech: Leaves the room to go find someone above her to seek answers.
Tanner: I ask another tech if they have an ingredient list so I could see what was the culprit of the berry flavoring.


They do not have an ingredient list. The clear liquid will not work. They do not believe we can do the test. They are going to call our CF team and see how to proceed.


While waiting, I think to myself, actually I call my sister and vent about my morning, what if I were not there for this procedure? What if I were to have a friend take him? What if they didn't catch the smell of the mixture? Who would have taken the blame when he went into anaphylactic shock? What if something crazy would have happen all because no one took the time to read his chart?! Rage and fear began to fill my being. My poor sister took the ear to that, as she often does...

Oh, oh, oh, and I forgot to mention. One of the last stages of the study is like a marshmellow barium fluff/cream that they mix with graham crackers... He is allergic to wheat and dairy too... I'll just leave this here...

I didn't even ask what the other stages of the study contained. That is a google for another day.

Finally, the speech lady came. She wasn't very happy that no one told her about the allergies or possibility of not performing the study and she wasted her time going down there. She literally pointed the finger at me that she spend her time on coming there when she could have been helping another child. I just smiled.

She asked if we had ever tried speech therapy and we have. All went over great. He passed all the little challenges with flying colors. She then asked why we were having the study and I told her of the lack of appetite and possible cleft. She kinda looked puzzled and apologized that we couldn't do the study. She gave a few ugly words to the tech followed by some nasty faces and she was gone.

The tech came out and said our pulmonologist advised not to do the study. She apologized and apologized for the speech lady. She said that they have been having issues with the speech team recently and it wasn't right for her to take it out on me. I smiled and apologized for all the issues as well. I then vented to her about the horrible PCA she laughed and said that she hears that all the time. She took us to our room where we waited to be discharged.


I want to kinda explain what a barium swallow study is and why it was suggested that we have one.

R has never been a big eater. Even as an infant he would never cry to be fed. He would usually nurse for comfort or out of boredom rarely if ever out of hunger. When he was younger we had an oral evaluation done where R ate a few different foods with various textures and a nice lady watched. She said R did great and she didn't see any issues. She said to just keep offering foods and to not quit nursing no matter what the Dr's said. (I am so glad she said that. Since then we have had different doctors suggest that I quit nursing to increase R's appetite. I have tried this for 24+ hours or so and his appetite didn't increase if anything it went down because he was so emotionally tore up. Honestly, he just isn't hungry. He doesn't have an oral issue he just doesn't have a huge appetite) So reason one was to rule out that he didn't have an oral or throat issue causing him pain so he didn't want to eat. The second reason was to see if they could get any more insight on the cleft situation. (The GI team took some pics of the location and they believe that everything looks fine. We need to schedule with ENT just to make sure all is well there)

The barium swallow study is a very easy procedure. The patient sits in this little chair stationed between a machine which can see the barium once it is in the mouth and begins the journey to the stomach. There is no pain or needles involved, just various liquids with different thicknesses containing barium.

Barium Sulfate
Barium:  Comes from a rock, is a metallic compound,
Barium sulfate works by coating the inside of the esophagus, stomach, or intestines which allows them to be seen more clearly on a CT scan or other xray exams

So basically, the swallow study goes like this. They place you in little chair stationed between this machine. Then you are given various liquids to ingest as someone watches everything go down to your stomach. Bam all done.

Here is a video showing the procedure: CLICK HERE TO WATCH VIDEO

This is a picture I took at Childrens of their study set up. R would have sat in the chair and ingested the liquids.
(which would have been a real struggle since he doesn't like to eat and I couldn't hold him during the process)

Once we got the OK to go back to our room we were greeted by our nurse who gave R his morning meds, then pulmonary came and we did treatments, and phlebotomy shortly followed. 

Once his blood was retaken we were good to go. R didn't gain any weight but since he tolerated his feeds at 50 ml an hour for 7 hours they were okay with us going home. 

I knew that being discharged usually took forever so we went on a journey to the new cafe and grabbed some lunch. Just an FYI the new cafe at ETCH has some really awesome sandwiches the fancy coffee on the other hand was a major disappointment. 

After we grabbed lunch we headed back to our room. R was very happy to run fast in the hall way! A few hours after we returned to ol'room 330. Home health came and delivered all of our home health supplies. They were very nice and easy to work with. They gave us all of our paperwork and taught me how to use the pump. Thankfully, I kinda knew what to expect since I had been watching youtube videos and reading pinterest techniques all week. (At the hospital they use the infinity pump whereas homehealth sends you home with a Kangaroo/Joey) Home health appt. Check. 

Once home health finished we were signing paperwork and getting ready to be discharged. We had about 8 bags of our stuff plus the huge boxes from home health. Thankfully, our favorite nurse came to the rescue and she helped me get everything to our car. I should really take her some coffee one day....

So our Monday was pretty crazy. We were awoken before 7 and was discharged around 545 that afternoon. But all in all our hospital stay was our best one yet. R began to play with nurses and would hide when they came in the room. He got his own stethoscope, he was able to take baths, and towards the end of our stay he could roam the halls if they were clear of all people. The staff at childrens is 97% awesome. All of our nurses were great and we definitely had two that made our stay a hospitalacation. (hospital + vacation)

I will make a post about our home health supplies and how we will get more supplies in the future. 

We are doing awesome at home with tube feeds and all the other stuff CF brings. Right now we are doing great and loving the moment. 

My life is so happy because I have a little human who is so filled with joy. I am so blessed, thank you Lord for all your blessings on me. 

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