Update

It's 12:30a, October 3, 2009. My son is soundly sleeping as I update this blog. So many things have happened since my last post. So many blessings. A recap:

July- we finally started receiving our Private Duty Nursing hours with PSA- the home health agency. We had qualified for over 100+ hours. We now have nurses M-F from 7a-7p and night nurses on M, W, and Th from 9p-7a. Now we can somewhat sleep. Having nurses is a blessing indeed. Without them, I don't know how Paul and I will be able to function. Of course, we still do everything for Caleb. It's just nice to have assistance.

In July, Caleb also had another Modified Barium Swallow Test and it revealed he still had silent aspiration.

The picture above is the MBS test. He is starved first, then fed formula with varying consistencies. A live x-ray then follows where the food goes. In his case, some food went to his lungs. Not a good thing.


We also started OT/PT with ECI. The therapists continues to work with his motor skills. I think Caleb is doing really well. He can sit up for hours! He still can't roll over and crawl. This delay is correlated mainly because of his trach and his g-tube being in the way, in my opinion.

Above picture shows he can sit up unsupported. So proud of him!

The same month, we started his twice/week Speech Therapy. She works closely with Caleb with his Passy Muir valve and his swallowing. So far, he hasn't really taken anything by mouth yet. We're still with the formula via g-tube.

We also found out that it's doctor's orders to always have at least 2 adults when transporting or traveling with Caleb. If we are not in compliance, CPS can get involved. Good information to know.

August- we had a very big scare. Neurosurgeon thought that Caleb may have to undergo brain surgery. This was very concerning. I couldn't fathom yet another surgery. So we went to day surgery for an MRI. Through prayers, the doctor decided against it...for now. He scheduled us for an MRI in March to reevaluate his cerebral cysts. God is good. I have faith in Him.

September- Caleb got really sick with a bronchial infection. This required him to be on O2 for two weeks. My DME company decided to give us a concentrator. That way, we always have access to oxygen.

The same month, we met with the Metabolic Geneticist. He stated that all genetic tests he had ordered turned out to be negative. This was a relief. However, to the doctor, that meant two things: Caleb's condition is rare or unknown or technology isn't available yet. Doctor seemed frustrated about not knowing Caleb's diagnoses. It appeared he was challenged. He recommended we not have anymore children until they can determine his diagnosis and they can be sure that what ever it is... isn't hereditary. I had mixed emotions.

On September 30, Caleb cried for the first time since he was trached. For most, a crying baby is normal. Some may even find it annoying. To Paul and I, it was music. Our baby boy can cry. Of course, only with his Passy-Muir valve. But regardless, it was a huge milestone. I cried tears of joy.


Caleb is 8 months now. Yesterday, Oct. 1, we met with his pulmonologist and his ENT doc. They are talking about a possible decanulization (sp). It means trach removal. Yesterday was a happy day. Then it hit me, without the trach, we won't have nursing, without the trach, we may lose Medicaid. He's near his lifetime maximum for our private insurance. What are we to do? I kept stressing about it. Just because he doesn't have a trach doesn't mean all his other medical issues will go away. We still need insurance. I pray that somehow everything will be alright. All I can do is pray.

On a personal note, I'm really beginning to feel alone here in Texas. It's just Paul, me and Caleb. Some friends and our nurses-whom we've grown to love and consider as family. We really need to be with family.

I asked his doctors if we can travel to Vegas during the Thanksgiving Holiday. It seems just getting there is a process. Have to get clearance from all doctors, then the plane has accommodate us-since we have so many medical equipments.

I'm optimistic we'll be able to travel. I need a dose of family right about now. I'd love for all to see my Caleb.


I love this pic.

Caleb Update

So, the last time I've updated this blog was June 2. I have very good reasons for that... We have been so busy. To keep you up to speed:

• May 28- Private Duty Nursing ended and we were pending Medicaid application
  
• June 2- Caleb, Mom, and Dad checked in at a nursing home in Copperas Cove (2 hours away from home) to fulfill the waiver requirement to get Medicaid. This was really difficult, as this was the first time we travelled with Caleb.


• June 4- Doctor's appointments in Austin. They told us he was in the 97th percentile on weight.


• June 8- I went back to work Full-Time. That was a very emotional day. Since his birth, I have never parted from him. I recall crying the night before. Since returning to work, I always come home from 12pm-1pm to see him and do his trach care.


• June 24- Physical Therapists start their visits. Caleb begins his daily exercises to help him reach his developmental milestones.


• July 2- First Trach Clinic Appointment- Caleb was seen by many experts to determine his progress. Paul found out that day that if Caleb is transported by less than 1 person, CPS will be contacted. (SCARY... we will always be in compliance)


• June 6- Medicaid approved and we begin the process of finding a Home Nurse Agency


• July 14- FINALLY get nurses. Allison and Sandy begin their Monday through Friday 7am-7pm shifts. (It was my personal request not to have nurses on weekends, so we can be a family)
  

He is six months now at a whopping 22 lbs. He demonstrates excellent head control but needs to work on trunk control, belly time, rolling, and other developmental milestones. We try not to compare him with other babies because we don't want to be disappointed. We are very excited every time he does something for the first time. He laughs, he giggles, he wiggles, but without sounds.

During the time we were without nursing help, Paul and I worked shifts. Our rule was "sleep only when the other's awake." Naturally, we have not slept on the same bed since Caleb's homecoming. Our sleep schedule is brutal, especially since I work weekdays 8am-5pm. There were days I slept only for two hours!!! Paul quasi-quit his job. His boss allowed him to stay and work 9am-1pm on Saturdays. It may not be much, but Paul's happy.

Caleb and Daddy stay home and I'm so totally in love with Paul!! He has proven to be a wonderful caretaker for both Caleb and I. 99% of the time, a home cooked meal awaits me for lunch and dinner. Paul and Caleb have bonded as well. At times when Caleb is super cranky, Dad can calm him down.

Work is work. They have accomodated me quite a bit and they are supportive of my home situation. I have made the decision that if my work ever interferes with my home life, I will do whatever necessary so it doesn't happen so.

To others, our daily life may be challenging, and it is... but it's also our way of life. We have accepted that our child has special needs and we will do all we can to provide for him. We are blessed everyday in many ways. We thank God for our little miracle baby.

Finally Home

It's been a while. It's now June and I haven't updated this blog since Mother's Day. I will provide updates.

• May 14- After several denials for Private Duty Nursing (24 hr. care) from my insurance company, they finally gave in. They allowed for Caleb to have 24 hr. nursing care for a duration of two weeks only.
  
• May 14-May 28- We had two nurses daily to assist us in caring for Caleb. As we had expected his care involves constant supervision. Paul and I were able to sleep while nurses were here.
  
• May 18- Caleb had his first appointment with his pediatrician. He weighed 17.2 lbs.
  
• May 27- Caleb returned to his pedi and weighed in at 18.6 lbs-- what a gain in a week! And he's only 4 months.
• May 28- Caleb, his nurse, Paul, and I took him to his surgeon to change out the G Button. He also went on his first excursion. We ate lunch at a Chinese Restaurant. Then we went to the Outlet Mall. Was that an experience! We brought so many medical equipments with us. We've decided we're not going anywhere unless it's for medical reasons.

We pretty much kept the NICU schedule. I don't see a reason in changing it- life is so much easier when it's on schedule. Only thing we revised is a morning bath or bed/sponge bath and oral care. So yes, he gets 2 baths daily.

Caleb is so accustomed to his routine as well. He's improved so much during the most difficult part of the day--the trach care. We do this twice daily. During the procedure, he mostly just lays there in a hyperextended position and sucks on his pacifier. He doesn't even get restrained anymore.

His room is now organized. All medical supplies and machines are put away. We joke about having a NICU room in the house- it resembles one. Since we no longer have nursing care overnight, we moved Caleb in our room. We're all used to the various noises his machines make.
Caleb tends to sleep most of the day. But when he is awake, he is alert, kicking, and playing around. Oh another thing, he was spoiled by his wonderful home health nurses. They held him most of the time. So now... he loves to be held. Sometimes, can't even put him down.

Caleb demonstrates head control and touches my face and will play with rattles now. He smiles quite a bit as well. Because of his trach, he's muted. So we can't hear him giggle, coo, or cry. As a mother, I feel I'm deprived of hearing my baby's talk/sounds. This also means that it's difficult to sleep . Because my Caleb doesn't cry audibly, Paul and I fear sleeping too soundly. So our solution you ask? Well one of us is awake, while the other sleeps. This translates in walking zombies.

But at least we're home.

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.