Sunday Evening, 2/17/08

The last five days have been, as a whole, very good. It's so comforting to have Nathan back home, although Christa has her hands full playing the stay-at-home nurse. We had a couple unnerving nights with more allergic reactions. The second one was enough to have the nurse practitioner decide to take him off the multivitamin IV altogether. This has been a blessing in disguise. Now we "only" have three pumps to deal with.

Nathan has responded very well to being home, better than we ever expected. He seems to simultaneously be getting over the terrible twos. Coincidentally, his third birthday was today. Although we had to bypass any cake or ice cream, we had fun blowing out a candle (on a plate) and opening his gifts. Here are some pictures from the last few days. Note the haircut, his first in six months. Hardly looks like the same boy.

Wednesday Afternoon, 2/13/08

Elvis has left the building.

Ok, so his name is actually Nathan, and the building is a hospital in Baltimore, MD. We left UMMC around 2pm with a trail of well-wishers and smiling nurses and doctors. He was excited to ride in the car and watch all of the traffic and scenery on his way home. The first hour at home he was running all over the house, reacquainting himself with all of the gadgets and crannies, particularly the ones that 3-year olds like to mess with (and parents want them to avoid). He's finally calmed down, watching Ice Age on the plasma ("ooh, daddy... big TV!") and hanging out on the couch.

Home Sweet Home.

Tuesday Evening, 2/12/08

It's been two weeks since my last post. As upset as I was then, it was nothing compared to last week when he was supposed to have been released on Friday. This time there was apparently miscommunication between the hospital and the home care service. Even though they had all of his details, they didn't know or understand that the numerous IVs had to be hung separately. When they finally acknowledged this, they refused to agree to provide us with the necessary equipment. Nathan is a unique case (as if we didn't know that) and they've never supported anyone with the amount of pumps that he would require.

The hospital worked on getting the number of pumps down from five to three, but their plans changed again yesterday when they determined Nathan really needed to get a constant feed of Octreotide. Regardless, the home care service has agreed to send us four pumps. It looks like we're going home tomorrow.

Everyone at the hospital has been talking about how much they're going to miss Nathan. I'd like to think we'll come back in a year and he can eat lunch at Donna's downstairs, or pick up a doughnut at Lexington Market a couple blocks away. I'm sure we have a long road ahead of us, but we've been through so much already. It's amazing to think back on everything Nathan has experienced over the last six months. I thought it would be interesting to try and enumerate some of it.

4 - Surgical procedures
7 - Centimeters of small intestine removed
33 - Percent of large intestine removed
9 - Hospital rooms
900 - Movies watched
2 - DVD players broken
6 - Allergic reactions
2 - Trips to the emergency room
20 - Lbs gained in weight
2 - Inches gained in height
1 - Bald patch
2160 - Dollars spent on parking
120 - Subway sandwiches
5 - Trips to Lexington Market

Not to sound cliche, but I'd be remiss if I didn't mention the countless nurses, doctors, dietitians, surgeons, members of child life, and general hospital staff that have made our stay at UMMC a positive experience. Nathan's case has not been without its share of challenges. While I'm obviously looking forward to going home, I won't forget everything that everyone has done for us. They've given us a chance for a happy ending to this story.

Tuesday Evening, 1/29/08

These little battles are really wearing on me and Christa. The infection in Nathan's central line is bound to push back his release even farther. The chance of him leaving this week are virtually nil. Because of the delays caused by the wrong formula and the line infection, his formula was just restarted today. They also decided to push back the multivitamin cycling until tomorrow, not sure why.

I want to scream and curse and break something. I want to get more sleep. I want to stop being depressed and angry and sad. I want my family whole again.

I don't need prayers or gifts or well-wishing. I just need my son home.

Monday Evening, 1/28/08

Things are still moving forward, but as expected, there have been a couple a minor setbacks.

Last Thursday, the overnight nurse gave Nathan the wrong formula. They normally dilute the canned formula from 30 to 20 (I forget the unit details). In this case, she gave it to him straight from the can and he threw it up later. This caused them to stop his feeds for a couple days while things settled down. To be fair, the department that delivers the formula probably screwed up his order. But I still expect the nursing staff to catch something like this before it gets to him. We've had this type of problem on a few other occasions; it usually ends up with him in the ICU. Fortunately it was nothing too serious this time.

This weekend he developed a low-grade fever. They took blood tests which came back positive for an infection. They believe it it's in his central-line. They are giving him antibiotics to treat the infection, and it shouldn't cause him to miss his planned release date for this Friday.

On a more positive note, they finally stopped his Lovenox shots for the blood clots. This means he can come home without any shots (yay!). They will also begin an attempt at cycling his multivitamin drip starting tomorrow. The plan is to cut it back to 20 hours/day, then down to 16 hours/day if successful. The plan is to try and get him some time at home when he can be free of tubes. Hopefully he'll be able to absorb the multivitamin pills soon and discontinue the multivitamin IV altogether.