Life has been pretty crazy the last few weeks and it's only going to get a little crazier. Here is what has been going on:Mommy - she is you guessed it - sick again or is it still sick? Hard to tell at this point if this is a new cold or just the same cold that never really went away. For over a year Mommy has been involved in a system conversion at work and the go-live is on Halloween. Heading into the last few weeks before the big day work has been stressful and being sick is not good!
Daddy - he has thankfully stayed well and loves to remind Mommy that she and I are in our third cold of the season despite us both getting flu shots while he has not gotten the cold once and has not had the flu shot yet. It is a good thing he has stayed healthy since he helped Uncle Jeff move to his new apartment and has been helping Mommy out with the extra hours she is putting in.
The boys - they don't like getting baths normally so it was no surprise that when we all got in the bath together they were less than thrilled. But it made for a great photo op so they tolerated it. They are suspicious of the change in the weather since they are Cali dogs after all. The first snow of the year will be quite the shock!
Me - my life continues to be an adventure to keep everyone on their toes.
First off, when I went to the Dysphagic Clinic appointment a few weeks back they recommended leaving me at my current volume of formula but increasing it from 22 kcal to 30 kcal. Now I have tried the 30 kcal route once before and did not tolerate it very well but Mommy was willing to give it another shot to try to put some weight on me. For the first few days all seemed fine and then things started to change. At least once a day usually following either nap time or waking up in the morning, I would vomit my feeding. In addition, I was waking up in the middle of the night with a dry, hacking cough. My parents and my nurse, Cory put two and two together and figured out that it was all related to the 30 kcal. Now let's see if you can follow their logic. Since the canned formula is already at 30 kcal, my parents previously had to dilute it to get it to 22 kcal. So for my 6 feedings a day, I got 140 cc's of formula mixed with 60 cc's of water. Once I went to 30 kcal, I just got 200 cc's of formula straight with no extra water. That was a loss of 360 cc's of water overnight from my diet and my body wasn't happy about it. Water is important for lots of reasons but for me it is key for two areas - digestion and respiratory secretions. Because of the lack of water my tummy was having a harder time processing the higher calorie formula. In addition, with the lack of water my trachea got too dry resulting in the coughing at night. So Mommy called the dietician and let her know that the plan is to modify my diet - eventually I will be moved to 24 kcal and get an additional 50 cc's at each feeding to end up at the same number of calories per day as I had been on the 30 kcal. The first hurdle is to get me on my regular 200 cc volume at 24 kcal instead of 22 kcal. The next step is to bump me to 225 cc's and once I can go a few days without vomiting then get me to 250 cc's. So over the weekend that is exactly what happened - Mommy moved to 24 kcal and I did great - we were done with vomiting! So Mommy planned on bumping me up to 225 early this week. And then I got sick.
First off, when I went to the Dysphagic Clinic appointment a few weeks back they recommended leaving me at my current volume of formula but increasing it from 22 kcal to 30 kcal. Now I have tried the 30 kcal route once before and did not tolerate it very well but Mommy was willing to give it another shot to try to put some weight on me. For the first few days all seemed fine and then things started to change. At least once a day usually following either nap time or waking up in the morning, I would vomit my feeding. In addition, I was waking up in the middle of the night with a dry, hacking cough. My parents and my nurse, Cory put two and two together and figured out that it was all related to the 30 kcal. Now let's see if you can follow their logic. Since the canned formula is already at 30 kcal, my parents previously had to dilute it to get it to 22 kcal. So for my 6 feedings a day, I got 140 cc's of formula mixed with 60 cc's of water. Once I went to 30 kcal, I just got 200 cc's of formula straight with no extra water. That was a loss of 360 cc's of water overnight from my diet and my body wasn't happy about it. Water is important for lots of reasons but for me it is key for two areas - digestion and respiratory secretions. Because of the lack of water my tummy was having a harder time processing the higher calorie formula. In addition, with the lack of water my trachea got too dry resulting in the coughing at night. So Mommy called the dietician and let her know that the plan is to modify my diet - eventually I will be moved to 24 kcal and get an additional 50 cc's at each feeding to end up at the same number of calories per day as I had been on the 30 kcal. The first hurdle is to get me on my regular 200 cc volume at 24 kcal instead of 22 kcal. The next step is to bump me to 225 cc's and once I can go a few days without vomiting then get me to 250 cc's. So over the weekend that is exactly what happened - Mommy moved to 24 kcal and I did great - we were done with vomiting! So Mommy planned on bumping me up to 225 early this week. And then I got sick.
Yes, that's right - I have ANOTHER cold! On Sunday night, my parents did my weekly trach change and my quarterly g-tube change. That all went great and off to bed I went. As I was falling asleep Mommy noticed I was breathing much louder than normal and when she went to check on me she could feel that I was running a fever. She gave me a dose of Tylenol and let my nurse know to keep giving it as long as I was running a fever during the night. When Mommy got up at 5 am Cory greeted her by saying, "It was a bad night." So Mommy sat down to hear the story. As usual when I am sick my heart rate starts to climb. It was in the 130's at 10 pm when normally I am around the 80's-90's. In addition, with the Tylenol my fever was 101-103. At one point, I had such bad chills that I asked Cory for a blanket. This is pretty notable since I HATE having blankets on when I am sleeping. As the night progressed, my heart rate jumped over a matter of a few minutes from the 130's to the 160's. This is where Cory started to get nervous since I have a heart condition. Now Mommy knows that when I have been hospitalized with URI's in the past the 160's is not uncommon. Cory was worried that if I jumped even higher as fast that I could get into the 200's in just a few minutes and potentially get to stroke level. She told me she had just about called 911 for an ambulance transport to Primary Children's when my heart rate stabilized. Whew! By the time Mommy had come down at five the crisis seemed to be over as I was no longer running a fever and my heart rate was back down to a managable 125-130.
Since something was obviously brewing, I stayed home from preschool today and acted like I was perfectly healthy. When I got home the fever had been gone all day and my heart rate at bed time was back to the 110-120 range. I had a great night but when I woke up on Tuesday morning I vomited up my first feeding and my fever was back. This time while I was at Grandma's it was easy to tell I wasn't feeling well. Over nap time, though my fever finally broke and I had no more trouble keeping down my feedings. Since Wednesday is my Halloween party at school we are all crossing our fingers that come tomorrow morning I will be feeling good enough to go back to preschool!
A few other notes:
On Friday, we went to the Fox Hole and met Uncle Shawn and Gavin, Uncle Jason and Traiton, Chong and Rick for dinner. Mommy's uncle John was in town visiting his brother in the nursing home so he came too. I sat with my cousins for several hours and about the time I started to get antsy the pub started to get busy so we left.
As we get closer to Halloween, my parents are having me practice trick-or-treating each night. I knock on a door in our house, say "trick-or-treat" and then they put some Whoppers in my bucket. Mommy is not a big fan of Whoppers so it accomplishes two things at the same time - I get to practice and Mommy has someone else who will eat the Whoppers!
Peyton Nicole Smith
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