Well the doctors office just called this morning and they have confirmed Kaitlyn's Probe study to be on Wednesday of this coming week. She will go in at 9am and she will need to be there 24 hours. Im still not exactly for sure what they are all going to do, but believe me I will find out before anything is done!:) Hopefully this won't show anything to concerning and it will be just a matter of changing her meds around.
On a different note are little angel rolled her self over the other day. We were working on tummy time with a pillow on the floor and she kick her legs hard enough and threw her arms and head back and rolled from her tummy to her back. I couldn't believe it, she is getting to be such a big girl! Mommy shed a tear that day:) Her g-button is also looking a lot better, it doesnt even look infected anymore. She will be on the antibiotics till the 26, which means no outside until then:(, but thats ok, we still have the whole summer!! :)
Tuesday, June 17, 2008
I called Dr. Abdesolon yesterday and he just called me back today. I explained to him what was going on with Kaitlyn and how she was having breathing issues and how the pedi. thinks that it is acid related. Well Dr. A. doesn't see how that her breathing problems could be related to her acid reflex but will do a PH test to measure the amount of acid that is coming up. Im not for sure when they plan on doing this but he made it sound either this week or early next. They will stick a tube down Kaitlyn's nose, kind of like an NG and that will stay in for 24 hours. She will need to be observed in the hospital for 24 hours and then we will get the results and go from there. If it is indeed from the acid or the acid is really high, they will try a series of things. Increase her meds,change her meds around, the GJ(one time only thing) will just have to wait and see. Atleast right now we are trying to find out what is going on. Please continue to pray that we find out what is causing Kaitlyn's breathing problems.
Monday, June 16, 2008
Well we talked to Dr. Hammel and he wanted us to fallow up with Kaitlyn's pedi. and see what she thought because Dr. Hammel is backed up with surgeries (which is understandable) We saw Dr. Gary and she looked Kaitlyn over and she said that her chest x ray looks great and her heart rate and oxygen is good, so she doesn't think that it is her heart. She thinks that some of her breathing is from her acid reflex. She thinks that the acid is getting caught in her throat causing her to choke and struggle to breathe. We have already increased her meds as much as possible and also changed the NG to the G button which helps because it closes off her stomach. So right now we are at a cross road, how serious is it that she needs to go back into surgery to have the fundo (which is extremely risky) or do we leave it and monitor it. Right now it doesn't seem to be affecting her health in a bad way, just more of a annoyance. We will still continue to gibe her the breathing treatments as needed and keep her on the monitors. I do have a call out to her pediatric surgeon that put in the g button and see what he thinks or recommends. So as of right now we are just waiting and seeing and praying that it doesn't get any worse. On a different note we did get the results back from Kaitlyn's EEG which is abnormal (which we already know) also Kaitlyn does have MRSA in her g button. She is now on an anti biotic which should hopefully help cure it.
Thursday, June 12, 2008
Well we went in to see Dr. Fletcher and he was in surgery so he was about an hour or so late and while we were waiting Kaitlyn started to struggle while she was breathing. I called the nurse in and she was pretty concerned. We tried changing her position, pat her on the back nothing seemed to work. She marked it down and by the time Dr. Fletcher came in Kaitlyn had fallen asleep and her breathing slowed down to her normal breathing. Well he said since he didn't witness it and since she is breathing fine right now there is no need to worry. I was like excuse me, wtf? No wonder most chd children die before the time they are one years old. Just because you didn't see it doesn't mean that it didn't happen and that there could be an issue! I told him that other day I went in to pick her up from her crib and her lips, feet, and hands were blue. I said that is not normal, he said well that can happen with the pulmonary blood flow, well it never used to happen so why is it now, figure it out! I also said why is she all of the sudden starting to breath like this, she never used to and again he didn't hear it or see it so it must not exist. Well screw if im going to take that as an answer. You can bet on that I will be calling her surgeon Dr. Hammel tomorrow thats for sure. I've almost lost my daughter on someones dumb mistake i will not allow that to happen again. I mean he could have had a EKG atleast ordered i mean by the time he actually got there we could have had the results, i mean really. I also expressed my concernes about Kaitlyn's O2 level when she creis. It goes down to the 60's ok thats fine if it does it for a couple of minuets but when it stays that low for 4 hours + No i dont think so. That means only 60% of Oxygen is going to her brain and her body. We have lost enough brain cells we dont need her to loose anymore! When this happens they give her oxygen in the hospital so why would they not to the same when she is at home. I am so angry right now, i will let you all know what her surgeon says tomorrow!
Michael took Kaitlyn to her pedi apt. this morning for her nine month check up and for her g button. She is now currently up to date on all her shots, except for one. Dr. Gary also noticed that Kaitlyn's fingers are starting to look a little blue, which is what I feared most about Kaitlyn right now. We told her that she already has an apt. set up with cardiology today at 3pm. I am freaking out right about now from all the breathing problems she has been having and the random times she has been turning blue. So I guess will see what Dr. Fletcher has to say. Kaitlyn also has a pretty bad infection around her g button, Dr. Garry things that it is MRSA, (which Kaitlyn already has) but this time it is pretty bad. She did a swab of the infected sores and the started to pus and bleed. We should have the results in about 48 hours. Kaitlyn is now on a pretty strong antibiotic. So as of right now the day is looking pretty crappy, hopefully it will turn around at the cardiology appt.
Monday, June 9, 2008
Kaitlyn went to get her EEG, phenobarbital level draw, and an x-ray done today. It made for a long day that is for sure. Her levels were pretty high they were at 35 so we are going to talk about lowering her phenobarbital back down. Her chest x ray looks great, yay Kaitlyn. We haven't gotten the results back from the EEG yet, but hopefully tomorrow. Kaitlyn also has a Pediatrician appointment on Thursday for her infection in her g-button and also for her 6 and 9 months shots. She will also be seeing the cardiologist that day to, to check on her breathing and make sure that everything is going ok. We are concerned with her oxygen levels when she cries, they drop really low and when she cries for hours on end she isn't getting enough oxygen to her brain and the rest of her body. So right now things are going pretty well, hopefully her breathing is just nothing and we wont have to worry about anything.
Friday, June 6, 2008
We have decided to change our updating to blogging, this is much more fun and a lot easier. We had a very long day and a long night last night. We called the neurologist and expressed our concerns about Kaitlyn's breathing and the medicine she was on. They said to lower the does significantly and that that should help with her breathing. Well what the doctor didn't realize (they never do) is that Kaitlyn would go through withdraw if we lower it from 2ML to 0.3ml. So we had to call back that night and let him know that this was not working. Kaitlyn cried for about 6 hours straight before he told us to give her 1ml of Ativan. Sadly this still did not work, Kaitlyn was still breathing very fast and was still crying. The neurologist really didn't know what to do at that point and suggested us to her cardiologist. We called him and he doesn't think that the medicine can cause the fast breathing, he can't say that for sure but doesn't think so. He said just monitor her for right now and see how she does and give us a call back in the morning. Well Kaitlyn finally fell asleep around 12:30- 1:00 last night. I have called the cardiologist and her pediatrician this morning to try and figure out what they want to do. We have expressed how we feel about the neurology dept. here at Children's and how we feel that they are not giving Kaitlyn a full 100% and how we would like to change neurologist, but its a working progress. Right now all were hoping is that it doesn't have to do with her heart (fast breathing) and that it is just a matter of sorting out her medicines.