What to say about Ira? He slept most of the day on Tuesday. He still has moments of what we think is pain. When he is given Tylenol he seems to calm down a bit. His feedings are compressed to where he is getting 2 hours on and 1 hour off. They will continue to compress those feedings to a point where he eventually eats as a newborn does. He is doing well at around 28-29% on the CPAP but de-sats when he gets uncomfortable. He is still on Flolan and Viagra to treat his pulmonary hypertension.
The doctors tell us that they want to get him off the CPAP and on a bottle for feeding before they do anything with his meds. When they get him off the CPAP and when Ira starts to eat out of a bottle then they will reassess his meds. They are talking that it's likely Ira will go home on the Flolan. This is a big deal because Flolan can only be administered through a line while Viagra can be taken orally. They would do a surgical procedure on Ira to insert a Broviac catheter. That catheter would administer the Flolan. It is a bit more stable and less likely to get an infection. It's scary to think about but if that's the worst case scenario...
The doctors tell us that they want to get him off the CPAP and on a bottle for feeding before they do anything with his meds. When they get him off the CPAP and when Ira starts to eat out of a bottle then they will reassess his meds. They are talking that it's likely Ira will go home on the Flolan. This is a big deal because Flolan can only be administered through a line while Viagra can be taken orally. They would do a surgical procedure on Ira to insert a Broviac catheter. That catheter would administer the Flolan. It is a bit more stable and less likely to get an infection. It's scary to think about but if that's the worst case scenario...
posted by jch at
12:30 PM
4 Comments:
Joe- sounds a bit scary...i actually stopped reading the info site because i didn't want to know anymore.
My best friend in KS's daughter was born with downsyndrome in Nov. and they had to learn how to insert and remove her feeding tube after several months of hospital visits/stays. After getting physically sick and crying about doing this to her helpless crying baby, eventually even this has turned into second nature to her and her husband.
Somehow God gives us the strength to get through these things. When Ira can finally come home, you will be so overjoyed that even this will fad into the background.
I am still praying for Ira on a daily basis. God continue to bless the Hays family.
We really appreciate the "educational links" - although agree with your friend Tiffany that they are kind of hard to read sometimes and I haven't been able to get through all the gory details every time, either. But hey, this is reality in the Hays family right now and we all need to know about it so we can pray more specifically and have some clue about what you all are facing. I know the doctors' job is to be realistic about all the things that "could" happen and all the "worst case scenarios", etc. but for those of us who are not weighed down by all that scientific medical knowledge, we have the freedom to pray with BIG FAITH and you know we will!
Holy Spirit, You are life and breath, our heartbeat. Move in all of us who love this family to pray with YOUR heart. Flow freely through Ira, every cell of his body. Ease his pain, comfort him, heal his heart and lungs, wrap around him like a blankie, give him strength. You have brought him this far - we eagerly await the next gigantic leaps forward!
It's Thursday--was the NICU feature aired on The Today Show? I couldn't watch...
Just want to try to ease your fears about the Broviac line, in case Ira comes home with one. Our infant daughter had one for about 9 weeks or so, earlier this year. She was also at Morgan Stanley in the NICU(6 1/2 weeks). The Broviac was honestly not so bad. It didn't seem to bother the baby, and we just had to be very careful with it. The hardest part was changing the sterile dressing, which was only once a week after the exit site healed nicely. It's only hard because you have to keep everything very sterile and the baby may not want to be still at the momment. As long as you keep the line flushed with saline and heparin according to what is prescribed, you will be fine. The hospital social worker should set you up with a home health company who will teach you everything and come out and check on Ira. The nurses at Morgan Stanley are also very good at making sure you learn everything before discharge.
Yes, it can be scary at first, but just like with all the other health challenges our baby faced, it became part of what our reality is. Our daughter goes in for her next open heart surgery (also at Morgan Stanley) in a few weeks.
We will continue to keep baby Ira and your family in our prayers.
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