Eat Happy!

Eat Happy!

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Thursday, December 13, 2012

RSV 12.12.2012 Hospital Admission Day 4

Ian had another pretty good day today. Last night was the tough part. Even though he was without oxygen on Tuesday, he did need it again last night, as expected. We noticed some time before bed that he was arching and squirming a bit. He hasn’t done much of this at all since back in the reflux good ‘ole days. Tom and I believed it to be RSV related some how. The doctors seemed to think it was feeding related since he seemed a bit more distended in the belly than usual. I agree that it would appear to be that way, and can respect that some of it could be triggered by feeding routines, but this was simply not just “feeding related.” Ian has been having moderate feeding intolerance since...... well, ever! It doesn’t look like this. We see him everyday while he struggles with eating and this is not the child we see.

We stopped his overnight meal immediately for the remainder of the night. Ian *did* stop moving and squirming. Some of that was it was 3A already and Ian hadn’t slept yet. His body simply tuckered out..... another reason why he needed the oxygen overnight. He was already having “other” issues. It was decided to take an abdominal x-ray today to make sure that nothing was going on in the intestines that could be causing issues. I requested a chest x-ray. They agreed to do both. The x-rays came back with normal results.

Of course as soon as he fell asleep at 3:30A or so, it was only an hour before Tom was up and leaving for work. Respiratory therapy was in at 5:30A to do his treatments...... he didn’t budge. Ian usually fights these pretty hard right now. Sitting in your rocker at home with a book, mom, and dad while doing nebs is hardly the same as doing them in a hospital bed, with new equipment, and scary doctor people in masks. I also slept through the treatments. I slept beside Ian all night and have no recollection of them doing the treatments..... and nebs aren’t quiet.

Ian doing nebs two months ago with an asthma attack

Ian's nebulizer mask: Ian loves purple!!

Another reason I stayed in the bed close to Ian is for oxygen delivery. His cannula had irritated his nose so badly over the last three days that it would no longer rest in his nose. The swelling was too bad. As a two year old with swollen nostrils, dry from all the hospital air, having nosebleeds from coughing too hard, and skin so sore and frail, he wasn’t even letting the cannula rest under his nose. We all know Ian would never wear a mask overnight. They did decide to let him do a “blow-by” or a “flow-by.” This is when a mask or tubing of some kind is placed near and in front of the patient’s mouth and-or nose. It allows the “blowing” of air int he direction of the breathing patient. The doctors here do not recommend that as a typical oxygen supply because of its inability to wean. It cannot simply be titrated down by number or percentage.

I needed to stay awake enough to make sure the mask stayed nearby. The nursing station can see his saturation levels up front, but every mom wants to make sure herself that her child is getting enough oxygen. There wasn’t much sleeping going on last night. I am hoping tonight will be better.

The day was a good one. I was interested in what the pulmonologist would say about the previous night. He didn’t really have much input on the events. He did say that Ian sounded much clearer in his lungs. He felt as though tomorrow, Thursday, would be our discharge day as long as things continued to go well. He said maybe, if Ian had an excellent and long enough nap, with good saturations, that he could go home tonight. We never heard anything even after Ian had a great nap without oxygen and discharge did not happen.

As it would turn out, it was for the better anyway. More on that in a minute. Ian enjoyed the rest of the day playing, coloring, and watching videos...... same old, same old. While he was napping, Santa, Mrs. Clause, and Frosty came by to visit. Volunteers were visiting children and passing around gifts. I was sad that Ian slept through the visit, but he was sleeping so peacefully after a long night, I couldn’t help but be so happy he was resting finally. One of the nurses came in saying Merry Christmas and placed a pile of presents on the bed for Ian. There was a stuffed animal frog, a learning and musical plush soccer ball, and a Little People Farm set with a video included!

We were very surprised! Ian has been presented with so many gifts throughout his hospital admissions. We have enough blankets, stuffed animals, art supplies, toys, and keepsakes to make a special playroom out of them. Ian has been admitted to the hospital 13 times, including the NICU. I bet we have something special form at least 10 of those visits. The admissions have been in six different hospitals and I know we have gifts from all of them. While the gifts are from all different people and organizations, lots of them come from little old ladies that knit, crochet, and quilt these beautiful blankets for the children. Ian has a handful of them. One hospital even calls them “Project Linus.”

Toward the end of the day, Ian started getting fidgety. He was feeling well enough to want to be out of the bed and moving all around. He was getting into *everything!* The only attachment he had remaining was the pulse-oximeter for this blood oxygen levels. The nurses agreed that he could take it off and play for a few hours. When he went back to sleep, it had to go back on his toe. While we still weren’t allowed to leave the room, Ian liked helping close the door when people came in and out. He seemed excited just to be able to move around freely without his “pulse-oxygen leash.”

Once Ian was settled for bed, we had everything hooked back up for him. Sadly, his saturation levels started dropping once he fell asleep. We did some repositioning and shifting, but they weren’t coming up. The general consensus seems to be that it is ok for them to drop into the 80s, as long as they bring themselves right back up within a few seconds. When it stays in the 80s, then oxygen is needed.

We brought the mask back out for the “flow-by.” It seemed to help Ian and we used it for about 30 minutes. Then, I started weaning it away from his face. A few times, it dropped again, but after shifting him a bit, he started improving. It has been 90 minutes now and he has not dipped below 90, with no oxygen. I am hoping this is a sign of a good night to come. I pray each time I see the numbers drop that they’ll come back up. Lots of moms will tell you that they don’t get all worked up or bothered by dips in numbers unless they become a big deal...... and to a major degree, that is true. But, every mother notices when those numbers drop, every time. I would be surprised to hear of a parent who didn’t.

An example of Ian's monitor: pulse (70), oxygen level (100%), and blood pressure (116/56)

We still do not have anymore labs back from the blood work over the last week. We have a small handful of information, but nothing largely critical. I am hoping that we will be able to go home with Ian tomorrow. I miss our home. Whenever Ian is admitted through the ER, as lots of children are, I never go back home. I stay with Ian and Tom runs back home for the stuff that we don’t already have immediately packed for ER rush trips. For that reason, I never remember what shape the house is in, what was left in the washer and dryer, how many dishes were in the sink, or how many piles of papers and bills are on the desk. The mental shift renders all of that information as jurassic and long forgotten.

As the morning rolls in, I will do my best to keep the updates coming. There is something about once discharge comes, the updates get tougher to do. I would like to take another moment to express how thankful we are for each one of you. Ian was watching Muppets Christmas Carol today. One of the song lyrics said “If you need to know the measure of a man you simply count his friends.” It instantly made me think of how we are who we are as a family because of all of you. Whether you are abel to rad this message or not, you are how we are able to move along each day. The knowledge, support, empathy, and genuine love is amazing.

I often think of people I have never met and children I have never hugged when Ian is having troubles. I can picture them in my head and I know they are either having a tougher time, had a similar experience, or are praying for Ian. When a parent from my support groups says their little one pointed to Ian on the computer monitor and asked about him, I am overwhelmed. I then hear sometimes, that the child will say they will pray for him or that they feel sad he is hurting. 

“If you need to know the measure of a man you simply count his friends.”

It is truly restorative to know this support exists. In a world of rushing, narcissism, and disconnection, those small acts of love in the smallest of children are the ones that bring it all back together. We love all of you every day. Thank you.