Monday, August 10, 2009
WTH!?!?!?
So since they FINALLY figured out it is just SEVERE reflux they have decided to send Lexi to another Ped GI this time in Morgantown WV not the quack we went to @ UPMC Childrens in Pittsburgh. Anyhoo I was super excited about it hoping we could get her on a good treatment plan. Well they send your appoinment time/info through the mail so I got that Saturday morning and the appointment is on NOVEMBER 11th!!!! Nov frickin 11th are you kidding me she will be almost 7 months old....what the hell is the point!! For the love of god they want the poor baby to suffer that long!?! I swear I know GI's are hard to get into but lord 3 months from now!? Anyway Im calling and throwing a big stink fit today to see if I can get it moved up. Iswear it seems like you cant get anything done unless you make yourself look like an idiot by throwing a big ole fit!! Wish me luck I will let you all know how it goes!
Tuesday, August 4, 2009
Great Answers Finally.
We woke up @ 4am yesterday and starting getting ready. We were on the road by 15 til 5. Lexi slept the entire driv which was awesome since even if she woke up I couldnt feed her. Once we got there we headed to the Day Surgery Registration and registered Lexi. We only waited about 10 minutes before they took us to pre-op. Once we got back there her 2 anestesiologist (sp) came back and talked to us, then her Otolarynologist and the other ENT's. Then @ 7:15 am (earlier than expected) they took her back. I bawled like a baby. It was so scary to see my baby be taken back and I couldnt go with her. They told us she could be back there for about an hour. The nurse came and got us 20 minutes later and declared her procedure done! Once we got back into recovery they told us everything looked great ie: no lesions,clefts,or cysts!!! BUT........ she has SEVERE SEVERE reflux. One of the worst cases Dr.R had seen. He said the awful raspy gasping sound is because her vocal chords are extremely swollen and irritated and that her throat and esophogaus is irritated as well. The gagging, choking and coughing is very common in reflux that is this severe. We knew that Lexi had reflux but it was NEVER thought to be the cause if all this. Now that we know exactly how bad it is we can treat it better and get on top of this. The best part is....we know this noise is NOT serious, is NOT permanant and WILL get better as her reflux is controlled!!! Thank God!!! And thank you all for your prayers.
I plan to keep blogging on here to track Lexis prgress with her awful reflux. She will go to her regular Ped. and also GI. So I will keep everyone updated on her reflux condition as we try to gain control!
I plan to keep blogging on here to track Lexis prgress with her awful reflux. She will go to her regular Ped. and also GI. So I will keep everyone updated on her reflux condition as we try to gain control!
Sunday, August 2, 2009
Should be sleeping!
Well here it is almost mid-night the night before or technically the day of Lexi's procedure. I CAN NOT sleep. Main reason of course is obvious Im nervous for tommorow. Second reason my 1 yr old Madison is at Grandmas tonight and Ive only stayed away from her over night when Lexi was born! Im just a mess tonight! Anyway I will update as soon as possible tommorow. Please pray we find answers tommorow and that it isnt bad and that she suffers no complications during the procedure! Off to lay awake in bed...errr I mean sleep.
Friday, July 31, 2009
Got a time for the Procedure and an outing gone bad!
So they finally called and confirmed 6am registration and 8am she will be in the OR. *Breathe* Im so nervous. I dont know what Im more nervous about. The procedure or the findings. Anyway Lexi has had some good non-screaming days lately (since they switched the formula) so we ventured out to eat with some family. BAD BAD BAD idea. Lexi wanted a bottle so I fed her and halfway through she spits it out gagging and coughing. The screams until she coughs so hard she pukes the whole thing up. Fun! NOT! After she threw up though she was atleast calm if I held her. We walked through the mall because Kaitlynn (my 4 yr old) wanted to but it was just so hard we ended up leaving. Story of our lives. I just keep telling myself this will pass. And besides Id rather have her here and be screaming and needy then not at all/ I can get through this...I can get through this.....I can (I hope).
Some good news.
So the Anestesia Department called me about Lexi"s surgical procedure. They went over when to cut her off from eating and such. She cant have Formula 8 hrs before and she cant have liquids (Pedialyte) for 4 hrs before. Wish me luck on that one. They also put one of my biggest fears to rest......she will be COMPLETELY asleep before they put her IV's in!! Thank God!! Im so thankful for that. I didnt want her to go through that. So everything is on for Mon. Im just waiting for scheduling to call me and tell me exactly what time the procedure is. I know we register @ 6am but we dont know what time exactly she will go back into the OR. Thanks for the prayer everyone!! Will let you know what time the procedure is for sure later.
Thursday, July 30, 2009
Where it all started. (To get you up to speed)
Alexandria Paige Duelley was born April 18th 2009 @ 4:44am. She wieghed in @ 7lbs 4oz and was 21 in long. She was gorgeous!!
We were all thrilled to have a third little girl. Everything was perfectly normally with her delivery and with her. She had great apgars and ate,slept,and used the bathroom like a champ. We were released 48 hrs after her birth as normal and home we went! Things were great. She ate every 3 hrs like a normal baby. She slept alot and was happy when she was awake. She went for a 1 week check-up and everything was normal and she had gained wieght.
We were just starting to settle into a routine when @ 12 days old @ 3am she woke for a middle of the night feeding and she was making an odd gasping sound. I tried to feed her the bottle and she started gagging and choking on it. I sat her up a bit and she was floppy and still making a rattley gasping noise. My husband Mike woke up to all the comotion and freaked completely out and told me to take her to the ER. We live about literally 4 mins from the hospital and I got there in about 2! When we got there the triage nurse hears her making this noise and immediately grabs her up and runs to the back with her.I was terrified. When I get to the back where they had taken her they wouldnt let me in the room. There were about 20 people in there and the had oxygen on her and were adminstering a breathing treatment. Once they deemed her stable they allowed me in and told me she had croup and would be admitted for 24 hrs to recieve antibiotics, steroids and breathing treatments.I breathed a sigh of relief and we both took a nap once we got into her room.
When we woke up from our nap she was back to making that awful gasping noise. I called for a nurse and they came in a reassured me everything was fine thats how she would soun duntil the croup was gone. It is then the feeding issues started. She started not wanting to eat at all and when I could get her to eat she would gag and act as if she was choking. This continued the entire time when we were in the hospital and I really didnt want to be released but they reassured me once again that it wwas because of the croup and it would subside in a few days.
We got home and things were the same as the day we were admitted. I took her to her Dr and they said she had bad reflux and started her on Prevacid and switched her to Similac Sensitive RS. Things got a little better with the eating but thee awful raspy gasping sound stayed. I would take her places and people would hear her and ask if she was alright. It was getting so frustrating. Then just when I thought things couldnt get worse.........the screaming started. She would scream and scream until you were afraid she would pass out. She screamed from daylight til dark. The Dr took my concerns and decided maybe the screaming would stop if we switched formula again. They switched her to Alimentum which is a hypoallergenic formula. It didnt work.....she actually refused to eat @ all. We ended up having to switch her back.
Finally Mid-June thay decided to send her to a Pediatric GI doctor @ Pittsburgh Childrens Hospital. The appt. was for July 10th. Well betwenn the time the appt. was made and July 10th the screaming fits were getting worse and worse and she was taking awful speels where she would get choked so bad and she coughed all the time. We ended up in the ER again exactly one week before her GI appt. The ER doc said he did not think the problem was GI he thought it was ENT.
After the ER visit I called ENT docs all day and no one locally would take us because she was an infant.Finally late that afternoon an ENT doc in one of the smallest towns about 30 mins north of here said he would take us.I was skepitical to say the least. We arrive @ Dr.W office and he took us back and said he needed to scope her. I was shocked they could do it there but was happy because I thought maybe we could find an answer. She was awake during the scope so she didn't very still so they couldnt see very well but Dr.W said it looked like Laryngomalacia and a Laryngeal Cleft. He said we would go July 17th to see a Pediatric ENT. I was relieved maybe we were finally getting somewhere!
We arrived bright and early on July 17th excited and nervous with the hopes of answers. The took her back and scoped her again. Dr,R said he didnt see signs of Laryngomalacia or a Laryngeal Cleft and that mean he would have to set up a time for her to go into the OR and be put to sleep have a breathing tube put into her nose and put a clamp tp part her vochal chords and sstick a metal scope down her throat. They know there IS an issue they just need to figure out what. They set up her surgical procedure (Laryngoscope) for Aug 3rd. They went over all the risks...such as infection,permanent vocal chord damage, respitory distress ann as with any procedure death. So now we wait for Mon. This should catch everyone up and now I will update as we follow this journey. Please everyone pray for my baby.
We were all thrilled to have a third little girl. Everything was perfectly normally with her delivery and with her. She had great apgars and ate,slept,and used the bathroom like a champ. We were released 48 hrs after her birth as normal and home we went! Things were great. She ate every 3 hrs like a normal baby. She slept alot and was happy when she was awake. She went for a 1 week check-up and everything was normal and she had gained wieght.
We were just starting to settle into a routine when @ 12 days old @ 3am she woke for a middle of the night feeding and she was making an odd gasping sound. I tried to feed her the bottle and she started gagging and choking on it. I sat her up a bit and she was floppy and still making a rattley gasping noise. My husband Mike woke up to all the comotion and freaked completely out and told me to take her to the ER. We live about literally 4 mins from the hospital and I got there in about 2! When we got there the triage nurse hears her making this noise and immediately grabs her up and runs to the back with her.I was terrified. When I get to the back where they had taken her they wouldnt let me in the room. There were about 20 people in there and the had oxygen on her and were adminstering a breathing treatment. Once they deemed her stable they allowed me in and told me she had croup and would be admitted for 24 hrs to recieve antibiotics, steroids and breathing treatments.I breathed a sigh of relief and we both took a nap once we got into her room.
When we woke up from our nap she was back to making that awful gasping noise. I called for a nurse and they came in a reassured me everything was fine thats how she would soun duntil the croup was gone. It is then the feeding issues started. She started not wanting to eat at all and when I could get her to eat she would gag and act as if she was choking. This continued the entire time when we were in the hospital and I really didnt want to be released but they reassured me once again that it wwas because of the croup and it would subside in a few days.
We got home and things were the same as the day we were admitted. I took her to her Dr and they said she had bad reflux and started her on Prevacid and switched her to Similac Sensitive RS. Things got a little better with the eating but thee awful raspy gasping sound stayed. I would take her places and people would hear her and ask if she was alright. It was getting so frustrating. Then just when I thought things couldnt get worse.........the screaming started. She would scream and scream until you were afraid she would pass out. She screamed from daylight til dark. The Dr took my concerns and decided maybe the screaming would stop if we switched formula again. They switched her to Alimentum which is a hypoallergenic formula. It didnt work.....she actually refused to eat @ all. We ended up having to switch her back.
Finally Mid-June thay decided to send her to a Pediatric GI doctor @ Pittsburgh Childrens Hospital. The appt. was for July 10th. Well betwenn the time the appt. was made and July 10th the screaming fits were getting worse and worse and she was taking awful speels where she would get choked so bad and she coughed all the time. We ended up in the ER again exactly one week before her GI appt. The ER doc said he did not think the problem was GI he thought it was ENT.
After the ER visit I called ENT docs all day and no one locally would take us because she was an infant.Finally late that afternoon an ENT doc in one of the smallest towns about 30 mins north of here said he would take us.I was skepitical to say the least. We arrive @ Dr.W office and he took us back and said he needed to scope her. I was shocked they could do it there but was happy because I thought maybe we could find an answer. She was awake during the scope so she didn't very still so they couldnt see very well but Dr.W said it looked like Laryngomalacia and a Laryngeal Cleft. He said we would go July 17th to see a Pediatric ENT. I was relieved maybe we were finally getting somewhere!
We arrived bright and early on July 17th excited and nervous with the hopes of answers. The took her back and scoped her again. Dr,R said he didnt see signs of Laryngomalacia or a Laryngeal Cleft and that mean he would have to set up a time for her to go into the OR and be put to sleep have a breathing tube put into her nose and put a clamp tp part her vochal chords and sstick a metal scope down her throat. They know there IS an issue they just need to figure out what. They set up her surgical procedure (Laryngoscope) for Aug 3rd. They went over all the risks...such as infection,permanent vocal chord damage, respitory distress ann as with any procedure death. So now we wait for Mon. This should catch everyone up and now I will update as we follow this journey. Please everyone pray for my baby.
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