We made it home tonight. Home sweet home. Coming home from a hospital stay is, unfortunately, nothing like coming home from a vacation. A continum of highs and lows, stress and trama. The days have been long, running into one another with no stop or start, just hours evolving into different dates.
Thank you to all of you who kept her in your cares. Thank you for keeping my boys safe. Thank you for all of the meals. Thank you to those who were my respite letting me take breaks.
Thank you to my friends for sharing your strength and singing my song.
Thank you to the staff and 4th floor nurses, our awesome physicians, Kim, and anyone else who laid hands on my daughter. X-ray, IR, vascular team, ER, family life, the cleaning staff. You are all priceless.
It is always the coming home that precedes the crash. The crash of the waves of humility in looking back and seeing all the true treasures, the people in our lives when we cannot stand alone.
Ivey had a x-ray this morning to check the location of the capsule. It is in one of the lower quadrants of the intestines. She cannot be discharged until the capsule is out of her....
She also went to IR to have her j-tube replaced. It was removed during the placement of the capsule.
The morning was a little rough with one seizure. However, this afternoon she is getting her groove back. Smiling. Playful. Terrorizing us by making the pulse-ox alarm every few seconds because she is kicking that leg of hers. This is the true sign that Ivey is almost back. She hates the pulse-ox on her toe.
The information from the capsule showed ... nothing. No lesions.
Still do not know the cause of the bleeding. But the lack of discovery has nothing to do with the effort that has gone into trying to find the cause.
As to going home, it should be soon. She must be rid of the capsule first. Her port also has to be checked because of it not functioning properly.
Today was a lull day. These days are always the hardest in hospital stays. We are here. People float in and out of the room but overall we are at a lull in the waiting game. The waiting for something to happen. To avoid the hurt, we get up, get dressed and we walk the grounds of the hospital.
It is these times that I see what surrounds us here in this hospital. One, I am reminded that each floor, each room holds a child. This is a children's hospital. And in this place sits families temporarily split apart just like my family. It is a hard road somedays. Two, I always meet someone who makes me really think about, quite frankly, Life, and how fragile it really is.
It is this place and time in my life that makes my other life so difficult sometimes. I see the tragedy of this world play out in miraculous ways. Stunningly real life. It makes going back to the other life seem like shades of beige sometimes. Petty talk, meaningless worry, obsessing over the unimportant.
She was up and moving today. Still very sore. We strolled around the hospital and she even came down to the cafeteria for us to have lunch together. As you can see, the handy-dandy pole with said attachments which are all attached to Miss Ivey must tag along.
Moving Ivey around is painful for her. However, she has to move. Being too still makes her stiff and seems to hurt around her incision more. She is still on morphine every few hours to help control the pain.
Yesterday we started Ivey back on her feeds. She has not had a feeding via j-tube since last Wednesday, so this is a test to see how she handles it. She has been on a continual feed on half-strength formula with us titrating the volume up over the hours. At nine o'clock tonight she switched to full strength formula.
I think everyone is holding their breath to see if this triggers her intestines to bleed again.
It looks like Ivey will be here several more days. No definite exit date has been established at t…
There is nothing to tell. Ivey slept well. She had a rockstar nurse. The real kind who floats in, gives meds, checks vitals, changes diapers, fluffs pillows, rotates Ivey and never disturbed her. Salt of the earth. I didn't have to do anything. So Ivey and I both slept. I have a feeling this is going to be a great day!
Ivey was admitted into Scottish Rite on Wednesday afternoon. She started having bloody stools in the 24 hours prior to her admission. Ivey saw her GI physician on Wednesday morning, after leaving his office he called us at home and requested we take her straight back to the ER at Scottish Rite. So here we are.
After Ivey's admittance on Wednesday her stools had an increase in blood. Several tests were performed to try and determine where the bleeding was coming from in her intestines. At first the physicians thought she might have something called Meckel's diverticulum. Meckel's is present at birth, so to have it, you must be born with it. After much searching, it has been ruled out. Ivey does not have Meckel's. No one is certain what is causing the bleeding. The most likely causes have been ruled out. The other causes that remain have to be narrowed down and pin-pointed.
Due to the amount of blood being lost, Ivey's hemoglobin levels dropped. Ivey ha…