Sept. 20
Posted Sep 20, 2011 5:21pm
Happy Birthday to my sweet Avery Kate! What a crazy first year it has been! As hard as it is to be in the hospital, so far from home, family, and friends, and to have Avery in such a fragile state, I am very blessed in so many ways. Avery has taught me so many things: to hang on to hope, to fight, to love deeply, to be independent, and much much more. She has given me a whole new perspective on life and love.
Today we started her day with lifting the paralytic meds. It was so nice to see her open her eyes. There were lots of balloons (luckily her birthday was not affected by the helium shortage), a big chocolate cake, a few presents and cards. Many people came by to say happy birthday and the lady that plays the guitar came in to sing a few special songs. It was a happy but tough day.
No fever today and none of the cultures sent off have grown anything. All good news thus far. I hope that they can start feeding her (via j-tube) tonight or tomorrrow.
Thank you for all the sweet birthday messages and many thanks to those who sent cards or presents. It feels great to be so loved and thought of.
Today we started her day with lifting the paralytic meds. It was so nice to see her open her eyes. There were lots of balloons (luckily her birthday was not affected by the helium shortage), a big chocolate cake, a few presents and cards. Many people came by to say happy birthday and the lady that plays the guitar came in to sing a few special songs. It was a happy but tough day.
No fever today and none of the cultures sent off have grown anything. All good news thus far. I hope that they can start feeding her (via j-tube) tonight or tomorrrow.
Thank you for all the sweet birthday messages and many thanks to those who sent cards or presents. It feels great to be so loved and thought of.
Sept. 21
A traumatizing day.
Got up early to check out of my nice room at the Yawkey, they do not have anything available until Friday. Which was fine. Got to the hospital, Avery did not have such a great night. She would wake up needing suctioned and then her heart rate and 02 would go down really really low. They had to turn back on the sedation over night, they took it off, and then had to turn it back on early afternoon. Things seemed to settle down so I took a long lunch and went to get my hair cut with another mom. I was feeling a little better after that but when I returned things went downhill. I came in and Avery was sleeping. She woke up and needed to be suctioned. Her nurse had gone to lunch so I called for someone to come help. There was a nurse at the desk and three doctors standing by. No one came. The alarms started going off. No one came. Her 02 kept dropping and dropping, alarms ringing, and Avery was turning blue. No one was moving. I basically had to yell in someones face. What if I had not been there???? So then they had to consult half the hospital on why she was having so many episodes. Everyone had a different opinion. They decided that maybe it was the breathing tube that was causing all the problems. The doctors took out the tube (another not so fun thing to watch). So far she has been ok on the high flow canula with some chest PT and steriods. There are no sleep spaces available, I may have to sleep on the "bench" in the back of the room. It may be better that way since some of the nurses here do not know how to properly cover their patients. I am so tired of having to yell at people and demand better care. I would post a pic of my new hair do but I don't look so cute after crying and yelling for the past two hours =(
Got up early to check out of my nice room at the Yawkey, they do not have anything available until Friday. Which was fine. Got to the hospital, Avery did not have such a great night. She would wake up needing suctioned and then her heart rate and 02 would go down really really low. They had to turn back on the sedation over night, they took it off, and then had to turn it back on early afternoon. Things seemed to settle down so I took a long lunch and went to get my hair cut with another mom. I was feeling a little better after that but when I returned things went downhill. I came in and Avery was sleeping. She woke up and needed to be suctioned. Her nurse had gone to lunch so I called for someone to come help. There was a nurse at the desk and three doctors standing by. No one came. The alarms started going off. No one came. Her 02 kept dropping and dropping, alarms ringing, and Avery was turning blue. No one was moving. I basically had to yell in someones face. What if I had not been there???? So then they had to consult half the hospital on why she was having so many episodes. Everyone had a different opinion. They decided that maybe it was the breathing tube that was causing all the problems. The doctors took out the tube (another not so fun thing to watch). So far she has been ok on the high flow canula with some chest PT and steriods. There are no sleep spaces available, I may have to sleep on the "bench" in the back of the room. It may be better that way since some of the nurses here do not know how to properly cover their patients. I am so tired of having to yell at people and demand better care. I would post a pic of my new hair do but I don't look so cute after crying and yelling for the past two hours =(
Sept. 26
Friday, Kevin and Aiden arrived. It was so nice to see them! Avery had a pretty sleepy day that day. On Saturday we took Aiden to the Children's Museum, he had a great time there (but I still think he enjoyed the elevators and the metal ball machine in the hospital lobby the most).
Sunday morning Avery decided to extubate herself (she pulled out her breathing tube). Thankfully, she was ok and she did not need it put back in. She has been fine on the nasal canula and may not even need that after tomorrow. She has been much happier with out that breathing tube in. I finally have my smiley girl back. While Avery napped on Sunday we took Aiden to the Boston Common where he got to run around and feed the ducks.
It was a very nice day. Kevin got to hold Avery on Sunday and Monday, so that was nice. Today (Monday) Kevin and Aiden had to leave. I was very sad to see them go. Avery had to have her chest tube pulled out about a cm. That was not fun for either of us. Then her IV infiltrated again. At some point tonight they will have to try to put in another one. A swallow study is scheduled for Thursday and then if that goes ok, she will have another gastric emptying study done Friday or Monday.
Here are some more pics from the weekend.
Sunday morning Avery decided to extubate herself (she pulled out her breathing tube). Thankfully, she was ok and she did not need it put back in. She has been fine on the nasal canula and may not even need that after tomorrow. She has been much happier with out that breathing tube in. I finally have my smiley girl back. While Avery napped on Sunday we took Aiden to the Boston Common where he got to run around and feed the ducks.
It was a very nice day. Kevin got to hold Avery on Sunday and Monday, so that was nice. Today (Monday) Kevin and Aiden had to leave. I was very sad to see them go. Avery had to have her chest tube pulled out about a cm. That was not fun for either of us. Then her IV infiltrated again. At some point tonight they will have to try to put in another one. A swallow study is scheduled for Thursday and then if that goes ok, she will have another gastric emptying study done Friday or Monday.
Here are some more pics from the weekend.
waiting for the T
doctor in training
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