Monday is report-conference day at the clinic. The doctor, nurse practitioner, nurse, dietitian, social worker, psychologist, therapist, and parent are all present. The meeting last about 20 minutes and Ian’s progress is reviewed. Ian had a great first week, so the meeting went pretty smoothly. Especially the part where he gained 11 ounces after the first week! Amazing, since he only gained a net of eight ounces from March 2012 to December 2012.
Monday was also the day my allergies *exploded!* Apparently... Richmond is known for their allergies.... strange, but believable after my experience. Unfortunately, it turned into a nasty head cold! Tuesday and Wednesday were a total bust for mommy. I had to call in the reserves on Tuesday for the remainder of the week. A Mack truck had run over mommy! Somehow, all the coughing, nose blowing, and hacking didn’t wake up Ian, Amen! Sadly, I would share this terrible cold with everyone as the week progressed. Beginning Thursday, I started feeling human again. it wasn’t until today, Saturday, that I felt like a woman again.
Tuesday and Wednesday were great days for Ian at the clinic. He was doing excellent with his oral-motor exercises. He was still gobbling down the applesauce and had advances to a more cupped, rounded, deeper spoon... more of a toddler spoon. He was still doing 15 minute sessions. I even had the chance to be in on two of the lunchtime sessions to begin facilitating the meals. I learned the oral-motor skills for at-home practice too. They showed me how to hold and angle the spoon for easier acceptance and better mouth placement. I had no idea it was so detailed!
Ian had been doing so well at the clinic, he was taking in calories in enough quantity to decrease his tube meal volumes. His regular meals were too much after his oral-meals, and were making him too full. he was having retching and some stomach pains by over-feeding him. His meals were cut in half pretty much and they only took him 20 minutes to eat. His overnight meal stayed the same. This came out to be about the same amount of calories.
I took to the process pretty naturally. I had been watching them over the monitors for over a week and paid attention to details pretty well. I also learned that “specific” praise it very important. Using phrases such as “Good job taking your bite,” “Good eating,” “Good job with your drink...” etc. are the best positive verbal feedback. He still receives DVDs and toys, bubbles included, as rewards. They aren’t taken away every time, but are used as needed during the meals.
THE SICKNESS & THE RASH
Thursday was another story. Ian began to get sick. In the morning, he had four retching episodes, one including vomit. I knew then he was getting whatever I had. At this point, he did not have a fever. His first meal was so-so. He was feeling shy and only eating-drinking because they wanted him to. He didn’t take nearly as much volume and wanted nothing to do with his crunching. As the day went on, things got worse.
Another progression was a rash. Ian’s rash began last Friday, around the same time as his new Atrovent nasal spray. The new medication helped Ian keep his mucous down tremendously, shortening his retching episodes in the morning and almost eliminating the amount of mucous he expelled. it was working beautifully. it was not the originally expected offender since he uses Atrovent in his DuoNeb as needed for respiratory distress... and has never had a problem with it. He has been using the new spray three times a day. It had been about a week when the rash had spread from his face to his ears and neck.
|Ian's Petechiae Rash|
|Ian's Petechiae Rash|
|Ian's Petechiae Rash|
|Ian's Petechiae Rash|
|Ian's Petechiae Rash|
Another suspected cause was a new soap. However, the new soap was one used in the past and this cause was quickly eliminated because of the type of rash. it was not a contact rash, or dermatitis reaction. A third offender was brought up by myself. I inquired about food allergies. I remember the Diagnostician at CHOP mentioning that Ian has not had enough of any food to show a reaction. He had been shoveling applesauce in for 10 days now. He had also just started pears that Thursday. As of Friday morning, the rash covered his entire body.
Thursday afternoon, Ian began to go downhill. During his second meal, he actually fell asleep sitting up twice. He wasn’t feeling like himself and was totally done for the day. He took a good nap after that meal. His temperature was 99.9 after lunch. When his two o’clock meal came around, he seemed to be ok. Once the meal was about a third completed, he had a huge retching episode and vomited his food right back up. The therapists are great about turning the timer down to go off in about a minute or so. this way, the children still learn that the *timer* stops the meal, not the vomiting. This is just to make sure behavioral patterns don’t develop.
Afterwards, his fever had escalated to 101.4 or so. The hospital has a 100.0 fever rule. It seems *everywhere* is different. The children must be fever-free for 24 hours before allowed to return to the clinic. This meant Ian had to miss Friday, no matter how he felt. I was really sad since I know he needs every day he can get from his therapists. Still feeling not-so-fabulous myself, I was somewhat thankful to have the day to recuperate. My Reserves were still in town; although I think I had “broken” my mother. The days are long, busy, and ACTIVE!
GLUCOSE TROUBLES BEGIN
Tom came down Thursday night and my parents headed back home. Tom was sick when he came down Thursday night. He was sharing in the fun. We all headed to bed that night, in one room, all three of us coughing away. The next morning, Tom and I *felt* better, but Ian certainly did not. He was very lethargic and not-himself. We decided to check his blood glucose since he was sick. It was 62. Not good, but not absolutely terrifying either.
Thursday afternoon, after Ian vomited, we backed him down to 24 hours of Pedialyte. We typically do this in order to help rest his GI system and allow him some rest time to “re-boot.” He had two meals of Pedialyte Thursday afternoon and evening, and one overnight. Friday morning is when we noticed the glucose dropping. His Endocrinologist had asked us to only use Pedialyte to bring up his glucose. Since he was in the 60s and showing symptoms, we gave him two ounces of Pedialyte to try and bring it back up. It had been about three hours since he last had his overnight “Pedialyte meal.”
Ian has ketotic hypoglycemia, which means he has an abbreviated fasting time. Typically, he can go 6-8 hours without food. It is only three when he is sick. Thirty minutes after we gave him the Pedialyte, his sugar was still 62. At this point, we gave him 20mLs of 10% dextrose water. Recently, his Endocrinologist had asked us not to use this. Since we are out-of-towners, we had no idea where to go for a hospital. Ian’s feeding program is an off-campus location for outpatients only. We only used the D10 to help buy us some time.
I found the directors at the House and told them we were having a blood sugar emergency with Ian and it wasn’t responding to meds. They were able to call an ambulance for us. Another ER, another ambulance ride, another hospital... number eight to be exact. The team was awesome here and even packed us a to-go snack bag for the hospital. Of course, Ian was scared inside the ambulance. I stayed with him and Tom followed behind.
HOSPITAL #8 MCV VCU
The ER was able to run some tests for blood cells counts and clotting since the rash was there as well. They were not sure if it was connected to his illness. Everything came back normal and some cultures were sent to see if there is any infection in his blood stream. After some IV fluids, Ian’s glucose was stable and we were able to go home.
|Marcel wearing my t-shirt for me|
The day before, when the clinic evaluated the rash, they gave us a lab order for food allergy testing. This type of rash would be a type three food allergy. This has to do with a reaction in the bloodstream. We went to have the testing done when we left the hospital. We watched the time carefully. It had been just shy of three hours since Ian’s last “meal” when we got home.
We checked his blood glucose right as we started his food. It was 47! Unacceptable! We gave him another dose of Pedialyte and a small dose of his food. We had started giving him half-and-half food and Pedilayte. After thirty minutes, it had risen to 65. Another “not-great” number, but certainly better than 47. As he ate his tube meal, it continued to rise and was at 102 after another thirty minutes. later in the evening, it would drop again, to 51. It as becoming very evident that Ian’s “three hour window” was only one hour with this illness. We made sure to pick up on Pedilayte administration between his meals.
We had been trying to keep his fever down with Motrin. While not typically considered a fever, it had been running in the are of 100-101. We wanted it down below 100 as soon as we could so he could return to clinic on Monday. The Motrin really wasn’t enough. We started alternating it with Tylenol and using some cool compresses. The fever came down to the 99s. His fever did go back to the 100s overnight, but his sugar was stable. We gave him his regular meal overnight, but with half strength food and Pedialyte.
Early Friday morning, long before the ER trip, we started giving Ian his Cortisol stress-dosing. Since he is mildly adrenally-insufficient, we give him extra steroids when he is sick to help him fight off the illness. Thankfully, we only needed to give him the oral dose. If he is ever unresponsive/unconscious, we are to give him an injectable dose. He receives the oral dose every eight hours. We begin giving it to him when he throws up or has a fever over 101.
Friday night we all went to bed exhausted. Although it had been a rough day, we made a lot of progress and kept Ian safe. It felt like a productive day because we successfully did what we needed to do. Ian was all about Daddy yesterday. He really misses his Daddy during the week. Today we all woke up feeling a bit better. Ian is totally exhausted from the last couple days and has been taking an excellent nap with his Daddy upstairs. Tom and I have both been up multiple times a night with Motrin, Tylenol, temperature checks, glucose checks, and food checks... anything to keep him out of the hospital.
I am REALLY hoping that Monday can be a great day for Ian. I want him to be able to join his friends at the program. While I don’t think he will lose any ground, I don’t want him to miss valuble time either. I also know that without recovering, it wouldn’t be valuable time at all. It would even be a set-back to push him and drive him into retching, or anything that would give a negative association with food. We are anxious to see what the food allergy testing shows. Hopefully, all his testing, even the blood cultures, will return normal. We did remove his Atrovent nasal spray. We will watch over the next week and see how the rash responds. Sadly, this means we are using Flonase right now, an artificial steroid..... which we are trying NOT to use with Ian as much as possible.
I’m sure something is being left out, but my brain is totally fried. I hope this clues everyone into to our little world this past week and as always, thank you for all the thoughts, prayers, and support.
..... oh, and all the goodies and cards! Ian smiles when he sees something has arrived for him. You all are too generous!
|Filling up my sticker board after my "super-juice" growth hormones|