big steps

Saturday August 3, 2013

Aaron is doing so much better. At 6am respiratory turned his oxygen down to 7 liters at 45% and he did well. Dr S came and saw him this morning. He said he would like to see the low grade fever go away. He wants him to start sitting up more to see if it helps with his oxygen levels.

9am respiratory decreased his oxygen to 6 liters at 40%. He tolerated it well. His temp was 98.8

12:30pm temp was 97.8

2pm respiratory decreased his oxygen to 5 liters @ 35%. He did fine.

5pm temp 99.1 oxygen decreased to 5 liters @ 25% still tolerating it well

8pm Aaron was changed to wall air. I was so nervous. He had so many problems changing from high flow to wall air in March, but he did great. He is on 1 liter.

He has been very alert today and back to himself. He is moving around in the bed and wanting to sit up more and for longer periods of time. He had a temp earlier today but has been fever free ever since. He found the buttons on his bed. He was so excited because he loves it when the nurses move his bed up and down. He would push them and laugh. He is adorable!

11:30 pm temp 97.8 and the nurse changed his oxygen to 1/2 liter. He is still tolerating it well. We are FINALLY heading in the right direction.  He s such a fighter.

1:30am breathing treatment. Afterwards I was covering him up and noticed his blanket was wet. I checked his diaper and it was dry. It was his feeding tube. He had pulled it out and was soaked. I am so glad that he woke up during the treatment or I wouldn't have noticed his tube was out. That would have caused another issue.

 

 

 

 

increase in oxygen

Friday August 2, 2013

Saw Dr K this morning. She was sorry he was still here. The plan is to get him off the oxygen and breathing treatments so we can go home. He continues to be more alert and awake for longer periods of time. I think he is sleeping later in the morning because he is getting his night meds later than he does at home. He loves the new toys I got for him and is moving around a lot more in bed. He is still having diarrhea but the Dr thinks its from the antibiotics.

At 4pm he had a breathing treatment. The respiratory therapist turned his oxygen from 5 liters at 50% to 5 liters at 35%. His sats dropped and stayed at 76. They increased it to 40% and he tolerated that much better. Thankful for small steps with Aaron.

Midnight he had another treatment. They tried to turn down his oxygen and his sats dropped again. He had a hard time getting tham back up and was finally successful at 7 liters @55%. Its not unusual for there to be setbacks with Aaron.

He has been running a temp on and off all day.

view of Saturdays sunrise from our room

seizures

Thursday August 1, 2013

Aaron had a seizure first thing this morning. It was a usual type and only lasted a few seconds. I will NEVER get used to seizures. Dr O (neuro) came by this morning  and his meds will stay the same. He was more awake to day and played with his toys. He LOVES his monkey. Aaron continues to amaze me every day. He goes through so much and yet he is always happy. I am so lucky to be his mom. He has taught me so much and I am a better person because of him. I love this little boy and treasure every second I get to spend with him. His temp has been 101 all day. He is now getting his breathing treatments every 6 hours. We are heading in the right direction, I think. We never know for sure with Aaron.

love his smile

a virus

Wednesday July 31, 2013

Aaron is doing better His sats are right around 92-95. He has had a temp for most of the day between 99-102. This is very high for Aaron since his temp usually runs in the 96's. He is still getting breathing treatments every 4 hours. They changed his oxygen to 5 liters at 50% and he is tolerating that well.  He has been awake for short periods of time and played with his toys some, but is still very sleepy. He was ready for bed and got his evening meds. He started throwing up. I am worried that he threw up all of his seizure meds, but it looked like mostly bile. All of the blood tests were negative so the Drs are thinking he has some sort of virus.

PICC line

Tuesday July 30, 2013

Dr C and Dr K come in this morning. They seem really concerned which makes me worry even more. (I LOVE Dr C. He has such a calming effect for me when it comes to Aaron. ) So now I worry more. His heart rate is in the 160's and 170's. He still has a temp. He continues to cough and his lungs sound coarse. He is started on Rocephin and a bunch of labs are ordered. Multiple people try multiple times to get blood from Aaron. They are not successful. Dr C finally decided to put in a PICC line. They want to give him general anesthesia. I tell them no. He has had to may problems with anesthesia the last 2 times. They are not happy and try to change my mind. I refuse and he gets his PICC line. He sleeps the rest of the day.

respiratory distress

Monday July 29, 2013

Aaron continues to struggle. His sats continue to go up and down. He has started to cough and it sounds awful. His heart rate is very high and he is now retracting. His temp is 99.9. His monitor reads APNEA numerous times. I feel so helpless and there is nothing I can do to make it better for him. I talk to the nurse about my concerns and she assures me that everything is fine. She states his pulse ox is just not reading well and that his high heart rate is likely from the seizures. I am NOT convinced. I know something is not right. They decide to go ahead and move him down to the peds floor. I am worried but nobody seems to be listening.

Dr K comes to see him and Aaron has an ear infection. He is started on an antibiotic.


Once on the peds floor he is doing the same. His heart rate is very high, and his sats are dropping and slow to come up. Then they drop and remain low. Thank goodness for my wonderful nurses on the peds floor. She call the Dr and a respiratory therapist. His sats are 79 he is in respiratory distress.


The respiratory therapist arrives and gives him an albuterol treatment. His sats go up a little. She states she cant get them any higher so she needs to go get a mask. She leaves. I look up and there is a group of respiratory therapist coming into the room. They try different masks, turning up his oxygen, calling for a chest xray. They tell me it is time to go back up to the PICU and that they will be putting him on CPAP. She deep suctions him and his sats come to 89/90. His chest xray is negative. They decide to keep him on the peds floor. They put him on a high flow cannula with humidified air. 10 liters at 100 %. He will get breathing treatments every 4 hours.

I knew something was wrong. I spend the rest of the night watching the monitors and praying.

                                                           in the PICU

sleeping after all that

his high flow humidified air machine

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PICU sunday

Sunday July 28, 2013

We arrive on PICU and I am grateful to see a familiar face. D has worked with Aaron before so she knows his medical history and all his meds. His heart rate is high and fluctuating, his respirations are many and fast, his temp is rising and he is very tired. He finally gets his meds and he sleeps restlessly for the night. During the night his sats drop and are slow to come back up. Not again. I can't. I don't want to do this again. He was doing so well he was happy again and I hate seeing him like this. I am emotionally drained.

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