“If you will be faithful right where you are, knowing that you have exactly what you need for the season that you’re in, God will get you where you’re supposed to be.” Joel Olsteen
It is so wonderful to be home and have a routine that works. My house is like a miniature hospital – I have everything I need right here at home! Evan’s cardiologist appointment went well and the echo results were unchanged from the last one we had done in Boston!
Here is what being at home looks like for us:
Evan receives oxygen on a continuous basis. He is typically on 1 liter of oxygen while awake and I bump him up to 1.5 – 2 liters when he sleeps. The need for increased oxygen while sleeping is positional. Evan tends to slouch when sleeping closin ghis airways. In order to help him I also use a neck roll (a rolled up blanket). I build him a caccoon in his crib just like when he was in the hospital. You should see all the laundry! I requested that Evan’s home oxygen be humidified and in order for that to happen we had to trade in Big Bertha (BB) for Martha. Martha and Big Bertha are oxygen concentrators which condense room air to 97% oxygen; uncondensed room air (the air we breathe) is 21% oxygen. The humidified air helps keep his airways moist to help decrease the irritation. Evan has a love/hate relationship with the cannula and has become very good at pulling it out! For traveling, we have a portable oxygen concentrator (poc) and/or oxygen tanks that we carry. The purpose of the oxygen is to keep his saturation levels between 88 – 100 and is also used a therapy to treat his pulmonary hypertension. I am so thankful for the type of home that we live in which is a split level. There have been times that I wished we lived in a two story house but now I am so happy we don’t. I have an extension cord for the concentrator which allows us to move freely throughout the house. Since Martha is so loud I am also able to move her from room to room depending on which room we are in. She is loud and puts off a lot of heat so we keep her in separate rooms from where we are. In order to monitor Evan’s oxygen saturation levels we still have the pulse oximeter (aka Beep Beeps). The pulse ox definitely senses when I am either sleeping or trying to get something done like write this post because that is when it beeps the most! Nothing serious, just enough to make me have to get up. The cardiologist at our last visit told me to turn his oxygen up at night and turn the monitor off which I have done the last couple of nights although I do set my alarm clock and do spot checks.
As Evan recovers from his cold I am also giving him saline nebulizers and continuing chest PT. After the saline nebulizer I use a battery operated nasal aspirator to get all of the junk out of his nose!
Evan still has his NG tube and is not taking anything by mouth until the swallow study we have in two weeks to determine a safe consistence. The last thing we want is for him to aspirate. I am PROUD to announce he pulled out his tube yesterday afternoon and I inserted it for the first time on the first try! He was mad at me but I did it! Ryan helped hold him down and hold the oxygen. Evan is on a formula called Alimentum which I mix to 26 calories. He eats 120ml (4oz) every 3 – 4 hours for a total of 6 feeds in a 24 hour period. I have a recipe that I make so I make a big batch that I use to feed him during the day. The feeds run at a rate of 105/ml per hour unless I have to run one overnight and then I run it a bit slower at 90/ml per hour. The feeding pump definitely gets the award for THE MOST annoying alarm! I still heat Evan’s formula to room temperature otherwise it gives him gas. The pump came with a bookbag which makes travel very easy. I bought a Mommy Hook for the stroller that I hang it on when we are out and we have an IV pole that we use at home. In addition to the swallow study we will be meeting with a nutritionist to ensure we are maximizing the number of calories he gets every day. Evan burns calories more quickly than other babies because he does breathe harder than most which burns a lot of calories.
The best thing I ever did was start keeping the syringes and caps in Boston. I came home with a suitcase full! In Boston they bring the medicine pre-measured in syringes with caps and once they give the medicine they throw them away. I got the idea from another blog and from one of Evan’s nurses to measure out a couple days worth of medicine so that I am not measuring out medicine every single time I have to give it which helps eliminate giving the wrong doses especially during the middle of the night! It also makes it much easier for traveling. Before, this bright I idea I was carrying the entire bottle and since some of Evan’s medicines must be refrigerated I was also carrying around a cooler with an ice pack – not anymore! Every couple of days I set up with the medicine, dosing chart, ziploc bags, syringes and caps and measure everything out. I can’t tell you how much time this saves me every day. It only take about a half an hour to do this.
Evan is on diuretics to help eliminate extra fluid off of his body. He is on medicine to help prevent ulcers and reflux. He is on baby aspirin to prevent clots. He is on sildenafil (aka viagra) to open up the blood vessels in his lungs to help with the pulmonary hypertension. He is also on potassium chloride and sodium chloride which help balance his electrolytes since he is on so much diuretics. At some point the doctors will begin weaning his diuretics. The second best thing I did since we have been home is making a dosing chart which lists the medicine, the time it is given, and a space to mark that I have given it to him. I keep it on the refrigerator and mark it off throughout the day. I got the chart laminated so that I can use a dry erase marker.
What misc supplies don’t I have? I purchased a shoe organizer to keep all of the medical supplies which includes tape, mouth swabs, saline solution. pulse ox stickers, scissors, cannulas, welcome sleeves, creams, soaps and lotions, stethoscope and NG tubes.
Ok, are you tired yet? I am but it is worth every minute!