Sunday, February 16, 2014
Home at last!
After 23 days in the hospital we are finally home! Not much happened since the last update. Things were pretty quiet the last week beside them having to change the dressing on his head almost every day because Philip sweats too much and it started to fall off. He was the healthiest on the floor so not much was going on. We took our walks around the floor several times a day, went to the playroom and he would flirt with all the women on the floor. So, Saturday the 15th started like most days with them changing the dressing but this time they looped the line so it was sticking out a little bit in front of his head. Well one second left alone in the crib to get an outfit to change him and we heard a ripping sound. Yup! Philip finally ripped the whole dressing off and the line out with it. They came to check it and it was too far out so they had to remove it. We were in shock! 4 doses left and he pulled the line out!!! He was so proud of himself, smiling and laughing. So they went ahead and put an IV in his hand to finish off the doses. He had his last dose Sunday night around 6:30pm and we were free to go! Coming home never felt so good! Though it is proving to be a rough transition so far. He is very cranky and won't settle down. I guess it may take a few nights to get used to being home again. Thanks for all the good thoughts and prayers to help send Philip home!
Wednesday, February 5, 2014
Unique…
I just realized I never updated with what we/the doctors decided to do about the course of Philip's treatment. Last Thursday we decided to try a NICU Picc line. Meaning the line is smaller than the pediatric line. It is usually used in preemies but has been used in older babies before. So the Nurse practitioner from the NICU came in and said she could do it easily right there without sedation but my doctor said no, he needs to be sedated. So again no food for 6 hours and off we went to get the line in. The took him in and came out and said they were having trouble getting an IV in and they were going to try it un-sedated. Well she came out again and said he was fighting and moving so much they couldn't do it without sedation but they were finally able to get an IV in him to sedate him. What we thought was going to be a 20 minute thing turned into a 3 hour long process. They ended up getting it in a vein in the side of his head. Sounds worse than it is but the poor guy looks like he has an antenna coming out of his head. They had to X-ray him to make sure the line wasn't in too far risking it touching his heart and giving him arrhythmia. Sure enough it was in too far so they had to undress it and pull it out X-ray again. This process went on a couple of times to make sure it was at the proper length inside his body. The poor baby's hair is being pulled, cut and matted by all the taping and re dressing. They did originally shave some hair but not enough.
Unfortunately Philip is a mover and sweater and the bandage keeps puffing up giving room for the line to wiggle in and out. It came out quite a bit so they x-rayed again. The line was still good but it did move out a bit, So they kept his IV in and kept giving antibiotics through that till they could get it re dressed yet again. Once redressed and reassured it was ok to use, they started using the line in his head to administer the antibiotics. The dressing seemed secure but we kept noticing the line looking like it was going further into his head. And we were concerned because in the beginning they had to keep pulling it out because it was not safe to use. We expressed our concerns to the nurse, residents, GI docs, anyone who would listen. Several times. We kept being assured it was fine. They didn't see any movement. Now I had taken a picture of the line so I could reference the length for the doctors and there was an obvious change in the length yet we were still assured by the residents that it was ok. So yesterday, we noticed it looked a little farther in again so I complained again. They finally ordered another X-ray and what do you know…It was in WAY too far! In between, Dan spoke with another resident and said I know we may seem annoying but we are just concerned. She goes on to say "No we just think you are unique…"So Dan asked "what does that mean?" She said "Well, most parents don't question what we do, they just do what we say. You've been through a lot and seem more informed…"
So PLEASE, PLEASE, PLEASE. If you have a feeling or see something you're not sure about SPEAK UP to your doctor or caregiver. I will never be afraid to question a doctor again. You know yourself and child best. Especially when they are not your usual doctors.
These are the same feelings and persistence that got Philip diagnosed in the first place. I'm not sure what makes doctors feel so easy to brush off a parents concerns these days. I'm glad my new pediatrician isn't like this.
Through all of this Philip has remained the happiest baby ever. He smiles at everyone who looks at him. He flirts with all the nurses and it seems like everyone on the floor knows his name. He is a little bored and it is hard to keep him occupied because he is hooked up to a heparin drip 24 hours a day to make sure the PICC line doesn't get clots in it because it is so thin. But he is holding strong.
What stinks is that he really isn't "sick" anymore. They just have to finish the antibiotics course because it is bringing his numbers down and he had been doing so well after the surgery. They don't want to risk any more fibrosis or scarring to his liver when it is in such good shape still. That is the reasoning on being so aggressive with the treatment.
Our tentative release date will be February 16th. It can't come fast enough.
Thank you for all the continued prayers and support!
Unfortunately Philip is a mover and sweater and the bandage keeps puffing up giving room for the line to wiggle in and out. It came out quite a bit so they x-rayed again. The line was still good but it did move out a bit, So they kept his IV in and kept giving antibiotics through that till they could get it re dressed yet again. Once redressed and reassured it was ok to use, they started using the line in his head to administer the antibiotics. The dressing seemed secure but we kept noticing the line looking like it was going further into his head. And we were concerned because in the beginning they had to keep pulling it out because it was not safe to use. We expressed our concerns to the nurse, residents, GI docs, anyone who would listen. Several times. We kept being assured it was fine. They didn't see any movement. Now I had taken a picture of the line so I could reference the length for the doctors and there was an obvious change in the length yet we were still assured by the residents that it was ok. So yesterday, we noticed it looked a little farther in again so I complained again. They finally ordered another X-ray and what do you know…It was in WAY too far! In between, Dan spoke with another resident and said I know we may seem annoying but we are just concerned. She goes on to say "No we just think you are unique…"So Dan asked "what does that mean?" She said "Well, most parents don't question what we do, they just do what we say. You've been through a lot and seem more informed…"
So PLEASE, PLEASE, PLEASE. If you have a feeling or see something you're not sure about SPEAK UP to your doctor or caregiver. I will never be afraid to question a doctor again. You know yourself and child best. Especially when they are not your usual doctors.
These are the same feelings and persistence that got Philip diagnosed in the first place. I'm not sure what makes doctors feel so easy to brush off a parents concerns these days. I'm glad my new pediatrician isn't like this.
Through all of this Philip has remained the happiest baby ever. He smiles at everyone who looks at him. He flirts with all the nurses and it seems like everyone on the floor knows his name. He is a little bored and it is hard to keep him occupied because he is hooked up to a heparin drip 24 hours a day to make sure the PICC line doesn't get clots in it because it is so thin. But he is holding strong.
What stinks is that he really isn't "sick" anymore. They just have to finish the antibiotics course because it is bringing his numbers down and he had been doing so well after the surgery. They don't want to risk any more fibrosis or scarring to his liver when it is in such good shape still. That is the reasoning on being so aggressive with the treatment.
Our tentative release date will be February 16th. It can't come fast enough.
Thank you for all the continued prayers and support!
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