Joshua had his broviac central line placed last Tuesday and the surgery went well. It was a very long day for the whole family and Joshua was more than a little cranky after the procedure, but he was back to himself by the next day. Our surgeon told us it was a very good thing we insisted on replacing the PICC line with the broviac because when they took the chest x ray to confirm placement of the broviac, she could see the PICC line had migrated to Josh's neck. It started out right above his heart, then it was in his shoulder when we went for the ER visit, and now it had moved again to his neck. Every day when I disconnected and connected Joshua to his fluids I would never know if we were going to be packing up and going to the ER that day because the PICC line wouldn't work. Now with the broviac we can feel much more comfortable and dressing changes are much easier. Joshua will have the broviac until he no longer needs the IV fluids.
Joshua has continued having bloody stools despite me giving up all dairy products in December. Our GI doctor came to see Josh last week when we were waiting for surgery and he recommended I stop giving Josh the small amount of stored milk I was using to supplement with. Dr. Romero approved Joshua to have Alimentum formula instead of the Elecare he despises. I was dubious about Joshua tolerating the Alimentum because it smells awful, but he has proven me wrong and is taking down the mixture really well so far in small increments. It takes a lot of stress off me knowing he will tolerate some formula.
On Tuesday I took Joshua to the Developmental Progress Clinic at Emory Children's Center for a developmental assessment. We lucked out and were offered an appointment after a cancellation, otherwise we would have had to wait until May for the next available appointment. Babies that spend significant time in the hospital after birth are at increased risk of developmental delays and issues with gross motor skills. After almost an hour wait, we were taken back to meet with a nurse practitioner, social worker, and physical therapist. The end result is Joshua has now been prescribed weekly physical therapy sessions to work on several issues they identified. He favors his right side and "cheats" when he looks to the left by turning his whole torso rather than just his head. He had a PICC line in his left scalp for several months which accounts for the right preference. Joshua also has weak abdominal muscles (any one would after four major abdominal surgeries) and he is not making some of the typical moves a baby makes like grabbing or bringing his feet to his mouth. He also does not bear weight on his feet and draws his legs up instead. Today a physical therapist from the state program Babies Can't Wait is scheduled to visit our home to assess Josh. Hopefully Joshua will be accepted into the program otherwise we will be identifying other resources to get Josh the physical therapy he needs. What a senseless thing it would be for a bowel problem to affect Joshua's motor development!
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| Joshua working on his neck strength |
In non-medical news, Joshua continues to thrive and adapt at home. He loves playing with toys, especially stuffed animals and rattles. He has a favorite teddy bear we do not leave home without. We are still working on the sleep schedule, but he is slowly getting better with taking naps in his crib and he now goes to sleep at 10:30 instead of midnight which gives me an hour and half to get as much done as I can before my bedtime.
Many of you have asked about my work arrangement. I started back to work in the office last week. My plan for now is to work two half days a week in the office and an hour or two a day from home. This gives me a sense of productivity, a little bit of money to contribute to our mounting bills, and an excuse for the grandparents to stay with Joshua. Not to mention I think my coworkers have missed my presence in the office, although you wouldn't know with how well they seem to be handling my abrupt absence. They have been extremely patient and supportive just like David's employer and we consider ourselves very fortunate for this unique circumstance.
I have to sign off for now, Joshua is starting to wake up and want his bottle. I'll leave you with a video of Joshua from yesterday talking and blowing a few spit bubbles which is one of his new favorite things to do.
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