NICU Diary Day 55

Thursday, November 30, 2000


This morning was the big team meeting with the NICU staff. The doctors, respiratory therapists, and nurses were all there to discuss plans for getting me home within the next 3-4 weeks. The doctors believe that I will need a home ventilator, which means that I'll require a night nurse. Daddy’s insurance pays for 400 hours of home nursing care per year, so we have enough to get us through this year and 1-2 months into 2001. Hopefully, I'll be off the ventilator before all those hours are used up. There's no guarantee though, so we need a plan in case those hours are exhausted.

Mommy and Daddy are thinking about a supplemental insurance that's available through the state. Children’s Special Healthcare Services (CSHCS) is a government program for kids with medical needs. They provide some respire nursing care and pay for things that our private insurance might not cover. The cost of CSCHS is based on your family size and annual income. Our family would be charged quite a bit for it, so we need to figure out if it's worth the expense.


Mommy and Daddy will be trained on how to use the ventilator, and I'll be followed by the pulmonary clinic after discharge. They will develop a strategy for weaning me off the vent. I'm going to have A LOT of follow up appointments. Mommy and Daddy reviewed their list with the doctors today and came up with the following specialists who will be taking care of me as I grow.


1. Orthopedics – flexion/extension X-rays on 12/14/00 to check C1 and C2 vertebrae. Future follow-up based on x-ray results, probably every six months

2. Ophthalmology – third ROP exam on 12/4/00. Future follow-up based on growth of dermoid cysts and surgical removal, probably in 3-6 months

3. ENT – Follow up TBD for my trach issues, probably once per month

4. Audiology – Second hearing test scheduled for 12/11/00

5. Renal/Nephrology – Consultation to be scheduled prior to discharge to discuss follow-up issues/tests, precautions, and diet

6. Speech & Physical Therapy – To be set up through the state’s “Early Intervention Program.” The hospital social worker is getting me enrolled

7. Hand Surgery – Follow-up appointment to be scheduled when I am six months

8. Craniofacial Team – Follow-up appointment to be scheduled when I am three months to check for craniosynostosis (premature fusion of the skull plates)

9. Pulmonary – Follow-up appointments to monitor vent weaning


Other possible specialties include genetics, GI, neurosurgery, and neonatalogy. It was also decided at the meeting that I am now big enough to be circumcised, and I probably should be to prevent urinary tract infections (for my kidney). I certainly didn’t vote for that procedure! The doctors also need to check to see if my testicles have descended. Since, I was born at 30 weeks, they had not descended yet. If they haven’t, the doctors suggested waiting to combine it with another surgery down the road.


The NICU discharge planner is working with Daddy’s insurance company to find a nursing service and medical vendor that is in-network. She'll be ordering all the home medical supplies I need as well as helping to set up my home nursing care. The hospital wants me to have twelve hours of care per day for the first few weeks and later bring it down to eight hours per night.


After the meeting, Mommy and Daddy came back to play with me before my CT scan. Daddy held me for a little while and then had to leave for Indianapolis. Mommy stayed at the hospital until I left for my CT field trip. I had to have sedatives for the scan, so I was pretty groggy for the rest of the day.


Mommy decided this afternoon would be a good time to get shopping and errands done since I'd be sleeping and wouldn’t miss her as much. My CT results from neurosurgery (brain gyrations), craniofacial (jaw), and orthopedics (vertebrae) should hopefully be back tomorrow.


Mommy and Daddy are also going to be trained on how to use an NG feeding tube. They have to learn how to put it in (through my nose), check to see if it's placed correctly in my stomach, and work the feeding pump. Mommy and Daddy are still hopeful that I'll bottle feed. Today, however, was not a good performance. A speech therapist came this morning while I was awake and tried the bottle. I didn’t do very well, but we’ll try again tomorrow!


P.S. Today I got a nice present. Someone donated a cross-stitched blanket for a baby in the NICU. The social worker gave it to me as a special gift. I am a very lucky boy!


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