I sent the following email update out to close friends and family a week ago….
03/17/2014I wanted to give an update on our Patrick. Please feel free to share this update with prayer groups and others that are interested, concerned and praying for our boy.
Patrick is doing great. He is now six weeks one day old and weighing in at 8 pounds as of this morning, up from his birth weight of 6 pounds 10 ounces. (Rory is now 9 pounds 5 ounces....he's a bit of a piggy when it comes to eating!). Anyway, Patrick is still on his Lovenox shots which he gets twice a day administered by Mama. The protocol for his treatment is to be tested at approximately six weeks of treatment to see if his blood clots are still there. If they are, we will continue shots for six more weeks and then stop. If they are not, we are able to stop treatment.
There were two procedures we could choose from for checking for clots. The MRI offered the benefit of no radiation but Patrick would have to be sedated and it would require an overnight hospital stay. The CT Scan offers a much quicker procedure so potentially no sedation although there is a slight amount of radiation though I was assured it was minimal. Normally, the "crunchy" Mama in me would really opt for the no radiation option while cringing at the sedation. However Chip and I discussed it and we decided that Patrick has been through enough and the CT scan sounded the easiest for him. We chose this keeping in mind that we were assured the radiation exposure is minimal. I will nurse Patrick to sleep and they will attempt the scan on Monday. The doctor asked if we wanted an anesthesiologist on call in case Patrick did not cooperate and I told her, no, we would probably opt for MRI if sedation became necessary and therefore we would reschedule.
So......our CT Scan is scheduled for Monday at 11:30 at Texas Children's West Campus. We are praying for a successful scan (Patrick to fall and stay asleep so they are able to get the data needed) and for there to be no signs of clots so our baby can enjoy babyhood free of needles! Your prayers are appreciated.”
Well today was the day! A sweet friend from my Time Out For Moms group….a twin Mama herself….came over with her twins that are Elijah’s age and stayed with him while Chip (who got home from his root canal in the nick of time!) and I took Rory and Patrick to Texas Children’s Hospital West Campus. Rory had to come since both babies are exclusively breast fed.
We arrived to our appointment in true Junior Parish fashion, about an hour early. We had some quiet time in the car as I fed Rory and Patrick slept. By the time we got up to radiology we were about 40 minutes early and they actually saw us almost immediately. As soon as we got to the prep area, I found out that they would need to put in an IV so they could inject something that would give them contrast when they took the pictures. Patrick has had his blood drawn every week or two directly from his vein since we began the Lovenox (blood thinner treatment for the blood clots) and it was always a traumatic experience for both Patrick and myself (but of course my concern is Patrick!). I was not looking forward to that part but as faith would have it, the nurse we got today was able to achieve success quickly and on the first stick! Patrick nursed and fell asleep and didn’t wake up until about an hour later when we were back in hematology waiting to see our doctor. We waited for about 40 minutes there but the results never came in. Patrick’s IV had been left in because if the CT scan showed that the clots were still there and we were going to continue his shots, his medication levels would need to be taken. They took blood from the IV just in case and sent up on our way, letting us know they would be in touch.
Well, ladies and gentlemen, we just got the call. The results are in. And our sweet, precious boy no longer needs Lovenox shots or follow up concerning his clots because THEY ARE NO LONGER THERE! Praise God! I no longer have to stick my baby and watch him squirm and cry, not understanding what or why this is happening to him. We are so grateful to all those that gave their love and prayers and we are so blessed to have this boy no longer on medication. And I can tell you, this tiny boy is so brave, as I tell him every time I comfort him after a painful stick. So brave and so strong. I admire this little boy of seven weeks and a day. He never lost his trust of me, even though I had to hurt him twice a day. He never pulled away or cried because I picked him up or carried him to the changing table where, swaddled in a blanket I would inject him daily and nightly. He is an amazing little baby.
Patrick and Mama waiting to go back to the prep room
Daddy and Rory looking quite cozy
After I found out about the IV, I changed Patrick into short sleeves that I was so glad I happen to have in my diaper bag.
Sweet little hands getting warmed up to make them easier to stick. Ouch!
Meanwhile at home, Elijah was taken care of so well by sweet Haley
No more needles for this baby!!!
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