One Word: Emotional

THIS ENTRY WAS WRITTEN OVER A MONTHS TIME.

April 21
Since we got home nearly 2 weeks ago the roller coaster of emotions hasn't stopped. The high we were on getting him home lasted the first two days, then the reality set in on all things baby. Been a while since we've done this, and getting into the rhythm has taken me longer than Kim. Thankfully she took on the challenge successfully and without frustration so I could follow her lead.

Cash has been great, he even slept a solid 4+ hours night one. We are up to 5 hours now, so we only need to get up once per night for a feed. He has done very well with his feeds which were a big concern at TCH.  He's taking about 4oz 6-7 feeds a day. 12.6 lbs!!! Gettin' big for sure. We visited the pediatrician twice and neuro doc once. Pulminologist in 2 weeks. Working on PT and hopefully an in home nurse a couple times a week. Probably the most difficult thing is to manage the o2. The tank and monitor with hose and wire are cumbersome to say the least. Basically, we are trapped in a 20 ft area all day, unless we hook up a smaller tank, unplug the monitor from wall and load everything into the stroller. Carrying Cash from room to room is impossible. This makes for a pretty unproductive day.

May 2
Now close to a month home, we have settled into a good routine. Cash sleeps well at night and Kim and I are swapping nights to get up and feed him around 2:30am. Savy isn't holding up as well. Her school work has suffered a bit, and attitude has been abundant. We are trying to consider her feelings when we reprimand her but that is sometimes hard to do. Nothing huge, just a bunch of little stuff that's adding up. For the most part, we think Savy has handled Cash coming home pretty well. Its a huge change for any kid who has a new baby in the house, but after 6 months of hospital stress, I think its a little harder on Savy. We never got the big happy coming home most families enjoy, and by the time we did get Cash home we were all so relieved and exhausted that we just tried to sleep through it.

Well crap, the monster is at it again; gotta get him settled down. Til next time...

May 3
Pediatrician apptmnt, 10:30; In-Home nursing admit 12. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!

May 3 evening
Well shit, the doctor measured Cash' head and its grown nearly 2 inches in less than a month. This is definitely not good. Called Neuro for update and advice and they scheduled us to come in tomorrow at 2. I have a feeling we will be back in the hospital soon. Had to reschedule Pedo apptmnt to 8:30am tomorrow because they ran out of time for 6 month shots and lab work. Arggh! In-home nursing went well.
Glad to finally have some help!!!

May 4 morning
Kim and I took Cashmonster to his doc apptmnt. These tanks and monitors are brutal to move around. When we were in the room waiting for the doc Kim looked at me and said thank you. She realized how hard it is for me when I am doing all this alone. The nurses don't have much compassion for the logistical nightmare it is to weigh Cash without his clothes on so they can get an accurate reading. Deduct 4oz for the onesie, and we will call it even, jeesh!

We are keeping a good face, but we know the 2pm apptmnt is a big hurdle for us. Cash seems to be a bit more cranky, and we are noticing his eating is suffering. The unknown is scary.

May 4 evening
Just as we thought, the 4th ventricle is swelling considerably. After a CT scan its confirmed, we will have surgery first thing Monday morning. He will be admitted for 3 days. Just got a call from school, Savy has a fever. My brother Louis is picking Savy up and taking her to doc for script and watching her til we get home. I love my brother, he has been a great listener and a reliable assistant through all this. I owe him.

Questions I am asking...
When will we ever get to be "normal"? Why is it that every time there is a "chance" of a problem, it comes to fruition? When will Cash ever get a break? How will K and I cope with this? Will Savy be ok knowing her brother is going into surgery, again, while she is at school? How many more times will I be told by Savys teachers, school parents, peers etc that she broke down crying at lunch, during a test or got mad at something small? Will she run and play at recess or will she sit by herself, again? Do we need counseling?
Can we just sleep through this? Will Cash' strength fail him? Whats the % of error in brain surgery, and do three of them start testing our luck? Who will watch Savy during these three days? Will Kims clients understand? What if we lose another client, will we be able to pay our bills? Can we afford to keep Savy at private school? Will our financial aid request for Savy school be denied, then what? Should Kim be going out of town? Should I cancel my brothers bachelor party trip? Will the in-home nurse do everything right?
Will Cash' head ever get to a normal size? Can Kimberley maintain her workload? Will the maid change her schedule this week? Will we qualify again for medicaid? When will our insurance stop paying? Does Cash' head hurt him? Will he get an infection? How many times do we have to do this? Will I ever get to be alone with Kim again? How can I help Kim and lighten her load? Does Savy feel left out, and how much of this does she really understand? How much of this do I understand?

May 5
Cinco De Marco party. Attended, but wasn't really there. Glad to see all the neighbors, most of whom have been helpful and thoughtful. Peace out, I'm going to bed.