The title of this post has double meaning since Cannon's hospital visit was extended to be a five day stay. Although Kent was still going over to sleep at the Children's Inn at night, we spent most of our time in the 12X12 foot room at the hospital with Cannon. It seemed as the walls were getting closer to each other everyday. Now that I am home and rested (yeah right), I realize that we were very blessed to have the care and treatment that Cannon so desperately needed. We came home with bags of supplies, including but not limited to syringes, alcohol preps, tube feeds, ace bandages, gauze pads, and some other items that I'm not even going to pretend to know the names of them. I couldn't possibly have enough time to narrate the trip as perfectly as I want to but I do have lots of cell phone picture, (why would I think that I wouldn't need my camera?! It's not as if this would be his very first step on the copper treatment journey. Nah- not that big of a deal. Leave the camera home, right? UGH. I am still kicking myself).
When we first got to our appointment with Dr. Kaler. Cannon was so weak from not eating.
Big bed for such a tiny patient.
Kent was holding Cannon while we were waiting to meet Dr. Kaler. I love this picture because I see Cannon looking at his dad, trusting him.
Dr. Kaler met with us and discussed a lot of our questions, gave us information regarding copper and the Menkes research study that Cannon will be a subject in, and gave Cannon a physical examination.
As part of the Menkes study, each patient has a routine ultrasound. I didn't use the "we can't wait to find out if he's having a boy or girl" joke again- lesson learned in Seattle.
When we explained to Dr. Kaler that Cannon had only had 4 ounces to eat in the last 48 hours, he ordered a urine sample. Results from the urine sample, showing that he was extremely dehydrated with dangerously low sugar levels and high acid in his blood, turned us from "day patients" to "overnight patients" which was just across the hall from each other.
Since Cannon already has very tiny veins that are hard to find, with his dehydration it was nearly impossible for them to get an IV in to get fluids into his body. He was sent up tot Radiology where they used an ultrasound to find the vein as they put the needle in.
After about 12 hours of that IV, his vein blew so they had to try finding another vein. Two nurses, and 8 pokes later they had no luck. Cannon was screaming for mercy as they second nurse pulled the needle out of attempting at his ankle, to reveal a hook at the end of the needle. She had hit his ankle bone in the process. It was 3:45 in the morning, Cannon was exhausted, I was emotional and the doctor was mad at the nurses for poking him so much. The next morning they took Cannon back up to Radiology to try and get a new IV line going. After 4 attempts they said they couldn't do it. That is when they had no choice but to put in a nastrogastric tube. They did an X-Ray to make sure the tube was placed correctly in his stomach and not in his lungs.
The X-ray revealed two things: that the tube was in the correct place and that Cannon has pneumonia.
My poor little baby was exhausted and sick. When they first put the tube in, they used so much tape it covered most of his cheek. It took a bit of getting used to. Look at those red circles under his eyes and his dry little lips.
Feeding time is a harder and easier since now he can be fed in his sleep.
My boy has some crazy eyebrows!
This nurse is my ANGEL!!! After tube feedings, copper shots, vitals done every hour on the hour 24 hours a day, she saw my energy wearing thin. One afternoon, Kent went out to buy me an early Christmas gift (more on that later), so the nurse insisted on taking Cannon out to the nurses station to do his next feeding while I slept! What?! HEAVEN! I slept from 4:00 to 5:00 and woke up to hear Cannon crying, I was so tired that I closed my eyes and fell asleep for another hour. I went out to the nurses desk and Cannon was sound asleep in his little car seat. She told me she would keep him until he woke up. I was able to shower and brush my teeth in pure enjoyment. She took her job to the next level and I am so grateful for her in my moment of need.
In our church we do Humanitarian Aid projects. I have not participated as much as I like but I have gone and made baby blankets before for Project Linus. While at the hospital, the nurse came in with a stack of blankets as part of the Project Linus. She told me the local Humanitarian group made these blankets for sick babies in the hospital. I was able to pick one of the blankets to keep for baby Cannon. I never expected to be a recipient of one of these blankets but it touched my heart and I will cherish that blanket for Cannon the rest of my life.
We wanted to be home so badly, as we were missing our family, friends, Christmas traditionsand a beautiful snow storm. While all of those things were going on without us, Cannon was watching a little Christmas program of his own from his hospital bed.
Each day we thought we would be able to go home and each day they told us that Cannon needed to stay another day. We weren't real patients (only Cannon was) so we did not get meals at the hospital. Cafeteria food was not appetizing so we ordered chinese and pizza and nothing turned out to be any good. The hospital had a soup and bagel shop that I frequented but it was closed on the weekends. We finally resorted to cold cereal from Walgreen's for the rest of the stay. Kent and I tried to keep each other from going crazy by playing games and watching TV. I do have to say there were a lot of tears shed but about half of them were from laughter. Maybe they were laughter of insanity because there was nothing else to do but laugh, but laugh we did. I am thankful Kent is with me going through this trial because he does bring a bit of "silly" to the whole thing.
These were the toilets at the hospital. Just to illustrate how "crazy" we were going, we laughed all weekend about how the Snowmen come to the NIH to use the bathrooms. It doesn't seem funny now that I type it up, but I sure did use it as comic relief on multiple occasions while at the hospital. Beluuuga, I guess.
On Sunday night, the Dr. considered (I don't think he really would have) letting us go home but our connecting city, Minneapolis, had been hit with over 17 inches of snow, causing the airport to close down. We were now stuck until Monday. The blessing of it is, we were talking about sending Kent back on Sunday so he could be to work on Monday, while I stayed until Cannon was ready to be released. The traveling home with medical supplies, a tube fed baby that needed a copper injection in the airport was already too much for the two of us to do together- I could NEVER have done it on my own.
The one thing that kept me going was the BIG FAT GREASY burger from Five Guys Burgers and Fries. You better believe I ate that whole thing. Did you not read what I wrote above about cafeteria food? :) All said and done we are glad to be home! And Yes, this IS just the Nutshell of the story.
A Partridge in a Pear Tree
How adorable is she?!!
Ella even had a speaking part, which she practiced for and had memorized. She got shy on stage and needed a little help from her teacher.
The curtain closed and we gave Ella the bouquet she definitely earned. Following the program, Ethan and Ella went to play at Reagran's house so Kent and I could join some friends for dinner and a gift exchange party. You know the overused phrase, "What happens in Vegas, stays in Vegas"? That could be said about the party. It was just what I needed. Thank you everyone!
Big bed for such a tiny patient.
As part of the Menkes study, each patient has a routine ultrasound. I didn't use the "we can't wait to find out if he's having a boy or girl" joke again- lesson learned in Seattle.
When we explained to Dr. Kaler that Cannon had only had 4 ounces to eat in the last 48 hours, he ordered a urine sample. Results from the urine sample, showing that he was extremely dehydrated with dangerously low sugar levels and high acid in his blood, turned us from "day patients" to "overnight patients" which was just across the hall from each other. 
Feeding time is a harder and easier since now he can be fed in his sleep.
My boy has some crazy eyebrows!
Each day we thought we would be able to go home and each day they told us that Cannon needed to stay another day. We weren't real patients (only Cannon was) so we did not get meals at the hospital. Cafeteria food was not appetizing so we ordered chinese and pizza and nothing turned out to be any good. The hospital had a soup and bagel shop that I frequented but it was closed on the weekends. We finally resorted to cold cereal from Walgreen's for the rest of the stay. Kent and I tried to keep each other from going crazy by playing games and watching TV. I do have to say there were a lot of tears shed but about half of them were from laughter. Maybe they were laughter of insanity because there was nothing else to do but laugh, but laugh we did. I am thankful Kent is with me going through this trial because he does bring a bit of "silly" to the whole thing.
