Mother's Day

My first Mother's Day. Paul was so sweet. He took care of Caleb most of the day so mommy can get some sleep. I have been exhausted from sleep deprivation- this was a welcomed luxury. I also got breakfast in bed. While Caleb napped, daddy left the hospital to get mommy breakfast from Denny's. A home cooked meal of a typical Filipino breakfast would have been awesome, but it's hard to cook when we haven't been home for almost four months.

There's many reasons to be thankful for. Biggest one is that God gave me a son who is stronger than anyone I know. A son who fights for his right to be here. A son so perfect in his own way. A life partner who will do anything for me and our child. And family and friends who have been there with me through this most difficult time in my life.

Rooming In Updates

It's our last night of "rooming in." It has been a difficult venture for us. So far, no major mishaps. Although Paul and I are still in desperate need of 24 hour care nursing (that insurance won't provide), we're confident that we can do this. We have to, Caleb's our baby.

The most difficult has been staying up late to give him his medications and to perform regular suctions in his trach. Also, since his cries are muted, we can't hear his cries at night. We literally have to be awake to know he is crying and needs attention- what ever it may be. To remedy this, I have requested to be sent on an an oxymeter/pulse sock saturation monitor. With the machine, it will loudly alert us if he is desating.

The four nights of actual care for Caleb just makes us realize that he is a special baby and we need assistance from a medical staff at all times. At least, until we get acclimated with our new situation.

There's so much to learn still and so much to get accustomed to. Few more things we need to do/figure out:

• How to organize his necessary medical equipments in one convenient, large bag/suitcase- whis is to include his CPR bag, meds, trach care, G-tube supplies, suction, etc.
• How to schedule our lives around his needs (who sleeps at what time and who wakes up at what time)
• Contact the local Fire Station/EMT in case of emergency- we need to do this in event of emergencey- that way they already know where to go, what the problem is, and Caleb's medical history
• Contact the electric company that our home cannot go without electricity- because he is dependent on machines that require power
• Contact a compounding pharmacy and schedule medication pick up (closest one is 30 miles away from home)
• Contact a home health care agency
• Contact various agencies for therapy

To top it off, we have to work out a plan B in event my insurance company do not approve 24 hour private duty nursing. That plan is to get medicaid for my medically dependent baby.

Rooming In

Despite the fact that the request for the nursing care was denied, we're still optimistic that the insurance company will have a heart and approve it. Thus, the neonatologist and the pulmonologist appealed the denial. It's a waiting game. We're in limbo...all because of insurance.

Plans to room in was in the works. Today, it happened. Rooming in is the process where Paul and I stay in a small room at the NICU to pretty much provide all of Caleb's care. The medical staff are here, only to observe and sign us off. We've been here since 7:30pm and we've done everything: meds, bathing, trach care, suctioning, diaper changes, etc. It's not any different from what we do when we're visiting, but this time, we are in a room and we get to sleep in with Caleb. We also use all of our home medical equipments, not any of the hospital's. This is to get us acclimated with the home life. We plan to room in as long as it takes to make us feel comfortable. We're thinking four days/nights.

Talk about sleepless nights. I can't even think of closing my eyes. Since we can't hear Caleb's muted cries, we have to be on top of things. My cell phone is set to alarm at different times.

• 8am- Cardiac Meds and EBM (Expressed Breast Milk) Feeds
• 10am- Trach Care
• 12pm- Formula Feeds
• 2pm- Cardiac Meds
• 4pm- EBM Feeds
• 5pm- Cardiac Meds
• 7pm- Bath and Trach Care
• 8pm- Cardiac Meds and EBM Feeds
• 10pm-6am- Continues Feeds Begin, 70mL/hr (first four hours are EBM's, the next, Formula
• 2am- Cardiac Meds
• 5am- Cardiac Meds

Trach care is a two person minimum job. The feeds last an hour long.

To add to the list, suctioning, diaper changes, rash medications, cuddle time, splint/physical therapy, and speech therapy that we've incorporated with play time.

I'm gonna be a zombie tomorrow. There's no way I can sleep tonight.

God, please bless us and guide us.

Going Home?

Since my last post, nothing has changed. We're still here at the NICU at Dell. We've been ready to go home. It's just a waiting game with the insurance company. I'm so upset. The only thing we're waiting on is for Blue Cross/Blue Shield to approve 24 hour nursing care at home for at least the first two weeks after discharge. And guess what?? The company won't approve it. Even though the national clinical standard for all babies with a tracheostomy is discharge with round the clock nursing care, the stupid insurance won't approve it.

Their policy doesn't allow it. They say if the baby needs 24 hour care, then he should be at the hospital. They won't pay $40/hr for 24 hours/day at $960/day but they will pay for $5,000/day at the hospital. Someone should teach the insurance company simple arithmetic!!!

Yup we're stuck. The hospital case managers, social workers, doctors and my company is advocating for Caleb's discharge conditions. The insurance company is even acknowledging the national clinical standard, but they won't budge. Send us home.... please.