You've probably never heard the term cliff notes before little man. Cliff notes are a summary of a book or story that hit all the highlights, major characters and basic plot. I'm going to do my best to give a cliff note version of the last month of our lives. This is not only to bring your fans up to speed but so that when you are older and reading your life story you aren't missing an entire month.
The day of your awesome benefit you weren't acting your usual perky self. There was nothing specific that we could put our finger on but both mommy and daddy knew something was brewing. Over night that night you started to run a fever and we couldn't get it to come down despite our best efforts. The following day things progressed and we ended up making our first trip to the emergency room. Mommy and daddy had self diagnosed you with a UTI (urinary tract infection) and when we mentioned it to the doctors they kind of looked at us funny but after the test results came back our diagnosis was confirmed. After labs, exams, x-rays, a dose of IV medication and lots of waiting we were headed home with a prescription for an antibiotic. Overnight that night you seemed to improve and we thought we were over the hump.
Unfortunately that didn't last. The next 24 hours were a bit of a roller coaster. You definitely weren't over the hump, if anything you were headed downhill. Turns out the antibiotics you were prescribed in the ER weren't enough to treat the type of infection you had especially considering your kidney troubles. Your urologist decided you needed to be treated with IV antibiotics and we completely trust him so to the hospital we headed. You were admitted to the CICU and after 6 tries the IV team was finally able to get the blood they needed for labs and start an IV. Since you are such a little guy with little veins you are never an easy stick but because you were dehydrated it was especially hard. Someone was watching over you closely because as you were admitted in walked one of your favorite night nurses and mommy was relieved to know that you would be taken care of by someone who knew you so well. To top it off our good friend Dr. Marino was the attending doctor of the week and immediately mommy and daddy knew that everything was under control.
Your visit in the CICU was a bit like a celebrity returning to their home town. Day and night you were visited by nurses, doctors, therapists, and other friends. Everyone was amazed at how you had grown and all the new tricks you had learned. It was almost 3 days before mommy and daddy saw the true Connor again. Mommy and daddy stayed with you day and night so you were never alone. You seemed happy to see so many of your good friends but definitely knew you weren't at home and kept a close eye on mommy and daddy. The doctors decided you needed to get a PICC line put in to be able to keep getting your IV antibiotics since the hard to obtain IV in your foot didn't even last 24 hours. Just when mommy and daddy thought we couldn't possibly have more to learn about taking care of you we were told we needed to gain the skill of administering your IV antibiotics unless you wanted to stay in the hospital for a full two weeks. It was clear that as soon as you started feeling better you were sick of being stuck in the bed with all the extra wires so daddy and I started learning. Once we were trained and tested we headed home and began the adventure of readjusting to life at home and mommy and daddy's new role as IV nurses.
The next ten days consisted of attempting to get you back on your normal schedule while mommy and daddy's schedule was anything but normal. Our days and nights revolved around IV's every 6 hours, cathing you every 3 hours and all the regular medicine, feeding, trach care, therapy, etc. Needless to say we weren't getting a lot of sleep. Thank goodness we were still at Grandma and Grandpa's house and they were more than willing to help as always plus we had your regular nurses who could help with most things except the IV's. You were extremely happy to be home. Somehow during your five day hospital stay you developed the idea that you could absolutely not be alone. In fact at first you thought it was necessary that mommy was not only in your line of sight but talking to you or else the world was ending. Within a few days you decided that it didn't necessarily have to be mommy but you definitely needed the attention of either mommy, daddy, Grandma or Grandpa. Although it was a little exhausting it was comforting to know that you could tell a difference between the hospital and home and were very aware of who you family is.
Mommy and daddy couldn't be happier to finish your IV antibiotics but turns out we were far from done. In true Connor fashion you had been displaying a mystery that none of the doctors could figure out (and trust me we asked a lot of doctors about it). For the prior month or so you had a weird blue drainage, that's right I said blue, around your trach. Mommy has asked every specialist she could think of and none of them had ever seen such a thing. Your awesome pediatrician even said he referenced the great "Dr. Google" without any luck. While you had been hospitalized they did culture your trach and some bacteria showed up which is pretty common with kiddos who have a trach and typically the doctors don't treat this. Well you weren't a 100% yourself after the antibiotics for the UTI and the crazy blue drainage was still there so after a major meeting of the minds (and about 20 phone calls) the decision was made to treat you for a trach infection with IV antibiotics. So again we began a ten day round of different medicines and you continued to sport the PICC line.
During those ten days you did improve significantly and it appears we may have zapped the weird blue drainage for which doctors said they should write another research paper about you. Currently you have been fighting some new irritation around your trach but that appears to be from switching brands so fingers crossed it doesn't turn into another infection. As a result of your CICU stay you earned yourself a slew more follow-up appointments. One of them with cardiology required you to wear a monitor at home for 24 hours because the last 2 days of your hospital stay your heart rate was dropping crazy low. That seems to have leveled out over the past month but we will get the results of that study this week. Aside from all the doctors appointments we had a LOT of appointments for your helmet. Because you couldn't wear your helmet during the hospital stay we had to start over with building up your tolerance to it and that required a bunch of trips to get things adjusted just right. Luckily you tolerate the helmet like a champ. Secretly mommy is counting the days until that thing is gone and I can cuddle your cute head without hard plastic or the smell of a shoe (that's right I said your head smells like a shoe some times).
After the conclusion of your second round of IV antibiotics we have had a few other bumps in the road including a leaking feeding tube during the night on the Fourth of July requiring the placement of a new one but nothing you need to hear all the details about because for the most part they are resolved now. Believe it or not mommy and daddy had a lot going on this past month outside of you. One of the major things that has taken up our time is finding a house to live in. We recently were able to sell our two story home in Monroe since it wasn't a realistic layout for our family right now. For months mommy and daddy have been looking and trying to decide if we should buy another house and where. Finally it was apparent that we couldn't possibly look into the future far enough to make buying a house worth while so we started looking at places to rent. This proved to be a bit of a challenge. We only found one ranch that was available for rent and in an area that made sense. After some negotiations we signed a lease and for at least the next twelve months had a new place to call home. After nearly a year in storage all of mommy and daddy's things were moved out of storage and into our new place. It was kind of like Christmas morning. Mommy awaited every load off the truck with anticipation. When mommy and daddy left our house in Texas it was completely set up and somehow in my mind I always felt like I was going to walk back into our house and everything would be there as I had left it. With each room of stuff I was flooded with emotions and memories. People always talk about simplifying their lives and getting rid of clutter. I never thought I could do such a thing on an extreme level but after living with barely any of my own possessions for nearly a year I can say it's certainly possibly.
Mommy and daddy had the goal to get the house almost completely set up and cleaned before we moved you in. We made a trip to the house every chance we could get (between IV times) to unpack and clean. Unfortunately we discovered a major leak in the kitchen that required some maintenance and delayed our moving by a few weeks. During this period of time your Uncle Sebastian moved from Austin Texas to Cincinnati. He was able to stay at our new house for a few weeks which was a big help while all the maintenance and painting was going on. Mommy and daddy are super excited to have him close to us and can't wait until your Aunt Alexa will join him here in a few weeks. We may be in trouble though now that both of your crazy uncles will be living in the same city.
As if your daddy didn't have enough on his plate with your rough health month, selling a house, renting a house, and moving he had more crap thrown at him. Daddy's work has undergone some major changes. I'll let daddy tell you all about it someday because it's a story in itself. Moving to Cincinnati was suppose to make daddy's work easier and be less stressful for him but that's not exactly how things have played out. Your dad is the hardest working, most determined person I know. It's too bad more people aren't as driven, honest, loyal and compassionate as your daddy. This world would be a much better place. I have no idea how he finds the energy to do all that he does. Despite all that is going on in our lives he is constantly thinking and working on how to help others and keep things going no matter what obstacle is put in his way. Mommy does her best to keep up with daddy but it's nearly impossible. One day he left for work at 4:30 am (after doing your four o'clock IV so mommy could sleep) and didn't get home until 11:30 pm. I'm pretty sure he has super human powers. You sure are lucky to have him as your daddy and mommy doesn't know what she would do without him.
Whew. Are you tired thinking about all that? I sure am. I think that hits most of the highlights until we actually moved two weeks ago. I will write you a separate note about that tonight. For now your nurse just got here so mommy has to go shower and get things packed up for your appointments today. Thanks for staying asleep this morning so mommy could write you a note.
P.S. You are pretty adorable when you are sleeping!
Mommy and daddy love you Connor.
-Mommy
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