Angelina was having a few bad days this last week and we made a 5:30 a.m. call to the on-call surgeon because we were quite concerned about this brownish sludge coming out of her g-button. I have to admit it freaked me out pretty good because her regular surgeon told us to be on the look out for greenish or dark brownish stuff coming out of her belly. Well, the on-call surgeon was a complete prick and pretty much told us we shouldn't have disturbed him that early in the morning - umm HELLO we don't hold medical degrees or a surgical licenses and hence didn't not know that she wasn't in any danger! I was so flippin' mad I couldn't even go back to sleep once I got Angelina back in bed. Doesn't that jerk know how special she is?? He should consider himself lucky he got a call concerning her! He needs to get a clue!
Since then however her belly has been better. She had a day or so after that where she was wretching alot, so that was what was causing the brownish tint to her stomach product. She may have loosened a stitch and it seeped blood. The last few days she has been much better though. She has been able to better control the wretching urge to try to vomit. Like today she probably did it only a few times rather than at least once an hour all day long!
Good news though - she hasn't thrown up in almost 3 weeks! I took her to see her GI doc today and they have advised us not to refill her Prevacid since she can't reflux into her esophagus. We just have to be mindful of her to tell if she is having stomach pain from acid. She hasn't had any Prevacid for like 3 or 4 days now and has been okay. One less medicine to take yeah!
Angelina will start back with all her therapies this week as well! I am hopeful that speech therapy will pick up well and she will be able to handle a bit more. We are going to try to work in another day for therapy during the week as well. Next, I have to make an appointment with a doctor we have been referred to for Hyperbaric Oxygen Therapy. That will be the first thing we do with the funds that were raised by the golf tournament. I am excited to get that underway!
Oh, her eyes are looking so good. They don't wander to the outside at all now. They will go in just a little, but her optomologist said that would happen for a bit until the muscles adjust. She is so pretty! Her eyes are just looking so good! It's like she is able to focus better on the things she is paying attention to.
Monday, March 23, 2009
Monday, March 16, 2009
Okay so Angelina was admitted to Cook Children's on 3/4/09 to have the fundoplacation and stribismus (eye) surgeries. She remained there until 3/6. All went well with her surgeries and she seemed to be doing well with adjusting to the "fundo" on her tummy. We get home and at least Larry and I were not naive enough to think the worst was over. Our goal was to try to keep her from wretching now that she can't vomit anymore. We didn't want her to undo her fundo - which can happen with alot of wretching. All our usual stops were not working and we were frustrated and very concerned. Her surgeon and GI doc gave us some tips to try and we also added Mylecon drops as well. They all seemed to be working but a couple of days later she was coughing what seemed to be ALL NIGHT LONG! Two nights of that and we were now looking in another direction.
I had planned on attending the meeting last week, looking forward to spa night, but Angelina was having such a hard time that day so I decided to stay home. We were concerned with her breathing because she had started to wheeze just a little, but we didn't want it to get out of hand. Her pulmonologist advised us to give her breathing treatments every 4 hours so we commenced with that. This was the second of the coughing nights with little to no sleep. At 7:30 am she still wasn't doing very well so we spoke with the on-call pulmonologist and were advised to head down to Cook Children's. Luckily there was pretty much no one in the waiting room so we got her right in. After assessment and tests, it was deemed she has bronchiolitis. The told us that we might be waiting for aoug 8 hours to get an assigned room - YIKES! Fortunatly, Larry works at Cook's and he knew the charge nurse in the unit Angelina was bound for so he worked his magic and we only had to wait 4 hours to get into the room. She stayed at Cook's from 3/11 (which happened to be Larry's birthday) to 3/14. She was so lethargic at first, but after the first day and a half she started to want to play again and getting back to her old self. She finally was on room air except for sleeping. She just wasn't able to hold her oxygen level up with out a little help. Larry and I took turns staying the night with her. He was working as well so he had a little more than his fair share of being at that place!
Poor Brady was so tired of seeing my grandmother and Larry's mom! When one of them would come to the house to take over, he would tell them to go home and cling to my leg! It was so sad. The whole ordeal made him constipated and needy. I felt so badly for him! He missed all of us and we missed him terribly.
We finally go to take her home on Saturday. She has been alot better even though she still is trying to get back to normal. Her medicines make her really tired, now that she is keeping them all down and so we are going through the process of getting used to them again. She does better with the breathing treatments here rather than at the hospital so that is a plus.
I am just ready for a little normalcy to return to our household!
Soon hopefully, but then by that time baby #3 will be here to cause an uproar of it's own!
I had planned on attending the meeting last week, looking forward to spa night, but Angelina was having such a hard time that day so I decided to stay home. We were concerned with her breathing because she had started to wheeze just a little, but we didn't want it to get out of hand. Her pulmonologist advised us to give her breathing treatments every 4 hours so we commenced with that. This was the second of the coughing nights with little to no sleep. At 7:30 am she still wasn't doing very well so we spoke with the on-call pulmonologist and were advised to head down to Cook Children's. Luckily there was pretty much no one in the waiting room so we got her right in. After assessment and tests, it was deemed she has bronchiolitis. The told us that we might be waiting for aoug 8 hours to get an assigned room - YIKES! Fortunatly, Larry works at Cook's and he knew the charge nurse in the unit Angelina was bound for so he worked his magic and we only had to wait 4 hours to get into the room. She stayed at Cook's from 3/11 (which happened to be Larry's birthday) to 3/14. She was so lethargic at first, but after the first day and a half she started to want to play again and getting back to her old self. She finally was on room air except for sleeping. She just wasn't able to hold her oxygen level up with out a little help. Larry and I took turns staying the night with her. He was working as well so he had a little more than his fair share of being at that place!
Poor Brady was so tired of seeing my grandmother and Larry's mom! When one of them would come to the house to take over, he would tell them to go home and cling to my leg! It was so sad. The whole ordeal made him constipated and needy. I felt so badly for him! He missed all of us and we missed him terribly.
We finally go to take her home on Saturday. She has been alot better even though she still is trying to get back to normal. Her medicines make her really tired, now that she is keeping them all down and so we are going through the process of getting used to them again. She does better with the breathing treatments here rather than at the hospital so that is a plus.
I am just ready for a little normalcy to return to our household!
Soon hopefully, but then by that time baby #3 will be here to cause an uproar of it's own!
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