I will preface this post by saying Thank you to everyone who has been reading my rambling goings on with Philip. Writing this blog I think is kinda like my therapy to deal with this situation better. When I found out about Philip's possible diagnosis I googled so much my eyes were crossing. I always gravitated to reading about peoples personal experiences rather than clinical and medical websites (Although I've read my fair share of those too) So I guess I also figured that if my rambling can help other parents just finding out about this disease and understand the process they will go through better, then it is worth putting out there.
Yesterday Dr. Prince came to see us in the morning. He said Philip would get his JP drain out that day and we could then go home!! We were so excited! We packed up our stuff and Dan started bringing things down to the car. Around 11:30am they came and removed the drain and the nurse was getting our discharge papers ready. She came in and asked if she could help get Philip dressed to go home so I said sure. Well she sat Philip up in bed and with that he sneezed and barfed ALL over. He sure scared the you know what out of that nurse. Dan ran out to catch the residents who helped remove the drain and with that we were told we had to stay for two more feedings to make sure he didn't do it again. So they hooked him back up to the IV to give him his meds he was due for. (Thank goodness the nurse didn't remove it, she just disconnected it.) We then waited and fed, and waited and fed. Philip did fine with these two feeds. This brought us to around 5:30 or so. So the nurse disconnects the IV and the residents come in again to start to explain our discharge plan. They leave and come back in a few minutes later and talk about giving Philip his first dose of his Prednisone through IV that night as opposed to me giving it to him orally. I would have to give him 20ml orally. It would delay us another 1 1/2 - 2 hours but We agreed that was probably the smartest thing to do. So back on the IV he went and judging how he acted taking his 13.5ml tonight I am glad we did it through IV last night. So we were finally discharged around 9:00pm with 4 prescriptions to fill and Philips med plan for the next few months.
Ahhh Freedom!!
Not knowing any better we stopped at CVS to fill the prescriptions on the way home.
Bad news. They can't fill 2 of the 4 prescriptions and Philip has to start taking some at 10am the next morning. Panic started to set in. So I went home with Prednisone and his Antibiotics in hand but not his Actigall(Which helps bile flow better) or his vitamins(AquADEK-fat soluble vitamins A,D,E&K)which are over the counter by the way but I guess not many places have it.
Thanks to the lovely pharmacist at CVS he told me I had to find a Compound Pharmacy who would make the prescription for us. He actually called the hospital and they told him where to send us.
So this morning was spent calling other local compound pharmacies and finding out most couldn't make the compound to be ready for today and that insurance did not cover one of the ingredients so they would not cover it. So we ended up with the pharmacy recommended by the hospital. So I faxed the prescriptions and had to run to queens that afternoon to pick it up.
Philip took his antibiotics like a champ in the morning as well as the actigall. Both doses are manageable. 7:00pm tonight he had to take 13.5ml of the prednisone. What a nightmare! It is inhumane to make a baby take that much orally. It smells like anbesol and I can only imagine what it tastes like.
They said not to mix it with formula or he will start to refuse it. The doctor suggested giving little drops here and there over the course of an hour. Well it took us two hours and that was filled with screaming, gagging, spit up, choking, sleeping,then some more screaming, gagging, spit up, choking, sleeping. My stomach is in knots knowing I have to do this with 10ml every day for the next 90 days. It is torture for all of us. Me and Dan had to take turns and Dan ended up having to do most of it because it made me so stressed. I dealt well with him in the hospital for 6 days getting surgery, then poked and prodded but this is more stressful and mentally draining than that. I am praying for the strength to deal with giving him the medicine I know he needs.
Anyone know a secret to giving a baby that much prednisone??!!
After a bunch of trial and error with Tony and prednisolone, I found the easiest way was to recline him ( so it was harder for him to spit it out but he didn't choke on it), tilt his chin up, and place the oral syringe between his gums and his cheek (so he couldn't use his tongue to push the liquid out). Still not fun, but helped get the job done. Hope that helps :)
ReplyDelete