We are very happy to be home – 31 days in the hospital, two open heart surgeries, one heart catherization, one swallow test, over 30 tests (EKGs, x-Ray’s, echocardiograms, too many to count pokes (IV draws, drainage tubes, blood draws), 201 beads of courage and countless prayers!!
We are adjusting to being home. There is a simplicity about the hospital that we don’t have at home. This is not a complaint or anything and certainly not me saying I want to go back but there are adjustments that have to be made. In the hospital you are in one room and everything you need is right there for instance we don’t have oxygen hook ups in every room in our house and since we don’t spend the entire day in our bedroom it takes some maneuvering to make sure we have everything that we need when we go room to room. I am wearing my Mommy RN hat and wish it were acceptable to wear scrubs on a day to day basis..lol! Here is how we are adjusting at home.
We have had many visits from MEDCARE. Our home equipment includes an oxygen concentrator which I affectionately call Big Bertha. Big Bertha (BB) is loud, takes up a lot of space and puts out a lot of heat but is essential. We also have a portable pulsox machine and portable oxygen tanks. The oxygen and pulsox is for when he eats and when he sleeps. I put the pulsox on him when he eats so that I can tell when he aspirates. If he is aspirating his o2 levels will dip to the mid 80’s which has not happened since we have been home. When he sleeps his O2 levels can also dip to the mid 80’s at which time the pulsox will beep very loudly ( we brought the beep beeps home with us.) Usually the noise will stimulate him enough to wake up and breathe deeper if not I put the blow by his face and his stats go back up to 96-100. For the most part he doesn’t necessarily need the oxygen at night. There are times I wake up and he has turned his head to the other side and is doing just fine. Big Bertha is a high flow oxygen concentrator and it sounds like you are in the cockpit of an aircraft when it is on. The first night I thought for sure I was on a trip around the world complete with the beep beeps..lol! We now keep it in another room thanks to the extra long tubing we have.
I am like a mad scientist in the kitchen making bottles. He is still on the portagen formula which I mix in 28ounce batches. He is lucky enough to get a milkshake at each feed which is 1TBSP of rice cereal to every ounce of formula which looks just like a vanilla milkshake. We will be meeting on Thursday with early intervention so that he can get speech and/or occupational therapy to help him with his swallow so we prayerfully won’t have to thicken his feeds for too long. We will go back for a swallow test in 3 months. Since he is getting rice cereal we started some spoon feeding which he enjoyed!! Evan would sleep through the night if I let him but since he is on diuretics I do wake him up around 3am for a super early am snack to ensure he doesn’t get dehydrated.
Evan is on three medications which includes two diuretics (LASIX and diuril) and a blood pressure medicine (captopril). We were on a great schedule before we went back which got all screwy the last couple days in the hospital. I worked very diligently since we have been home to migrate his feeds so that we were on a manageable schedule. Since he does aspirate I also have to thicken his medicine so it is important to make sure the medicine lines up with when it is time to eat which was not the case when we left the hospital. The doctors and nurses explained it was ok to give the next dose of medicine an hour late/early in order to get a schedule which I am happy to report we are now on! He gets his LASIX and captopril at 7am, 3pm, and 11pm. He gets he diuril at 7am and 7pm. Here is what my notebook looked like as I tracked and migrated his meds:
Evan is fun and as talkative as ever. He is still infatuated with his hands and is discovering his feet. He loves to look at
his feet at night with the red pulsox on it! He loves getting kisses from his family and watching his big brother!
Thank you to everyone for the continued prayers and well wishes! Prayer changes things!!