Well yesterday and today Ava has been sleeping more than usual. Amy and I don't know if Ava is resting up or coming down with something. Today Ava had an extremely busy day (Amy went home so I was hanging out with Ava). OT worked with Ava on mouth stimulation which she did not mind. The OT said her tongue is performing better. I then held Ava and she was trying to sleep but the nurse had to pull tape from her arm to replace an IV line that was leaking, Ava did not like this. A few minutes later Ava had a hearing test, she passed. Ava fell to sleep on my lap for about an hour then I left for lunch. When I got back she went downstairs for a MRI. The doctors wanted to make sure Ava's brain was not bleeding or having any problems that could occur after being on ECMO. The MRI was normal. Ava then came back to her room and the nurse said Ava's Oxygen Saturation dropped into the 40 range when she was downstairs (most people are around 97, Ava is usually around 75 to 85). I asked why she dropped and the nurse stated she was mad when they moved her, I didn't get much more of an answer. The nurse was holding a mask up to Ava's mouth and nose to provide Ava with Oxygen and flow, at this time Ava was 55 to 65. I noticed the mask did not appear to be helping with Ava's Oxygen Saturation and looked to see what the Oxygen control was on, and it was not on, just room air, 21 percent. I told the nurse she needed to turn the Oxygen up and I then turned the oxygen to 100 percent. This helped bring Ava back up around 70. Ava then got a breathing treatment, which she hates. After the breathing treatment a nurse changed the same tape on the IV line again but this was scheduled. They clean and change the tape once a week so Ava became upset again when the tape was pulled off her skin. After Ava calmed down I left to eat dinner. I returned and Ava is currently on a breathing mask with the oxygen turned up to 80 percent and flow of 7 liters. This is a big step back, lets hope it's only for a short time. Ava was scheduled for a surgery tomorrow morning around 9 a.m. for a g-tube (feeding tube in the stomach). I just talked to the doctor and asked the doctor if I can cancel the surgery and the doctor said she will pass the information on to the surgery team. Amy and I think she was scheduled for to many activities today and just worn out. The doctors said Ava does not appear to be infected with anything. They said her x-ray of her chest looked the same and that her blood work was normal. The doctor said that the sedation she recieved today before the MRI might of caused this set back. As we have experienced before their are so many unknowns with the medical field. Well lets hope tomorrow will be a better day or Amy will think she has to return to KC sooner. Daddy is trying to comfort his little girl.
Nate
Do Not Worry
15 years ago
7 comments:
I love you Nate, you are such an awesome daddy and I am sure Ava feels very comforted when you are with her. Thank you for giving me a chance to come home. You are right though, I do feel like I need to be back up there, but I will take your word on it and if you feel I should leave sooner tomorrow just let me know. I miss you and Ava and I am very excited to see you guys.
Love always and forever,
Amy (and Kaden)
xoxoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxo
Poor Daddy! Not the kind of day you want to see your baby girl go through. I think it is wonderful how you and Amy speak up though. You are Ava's voice and also being her parents you know what is best for her.
Keep staying strong!
Amy, I know it's tough to be away, but you need this for yourself as well as getting to spend time with Kaden, at home:)
As always, love and prayers!
Amy and Nate,
I hope and pray today is a better day for baby Ava. She is probably just mad at those nurses and doctors and wants to show them who is in charge! It is so good to hear how involved you are in her care up at the hospital. Amy, I hope you are enjoying your time home!
Kristy
Wow, you are thorough... I was kind of wondering if you would post as much as Amy, but I guess you answered my question! Thanks for that.
I know that with Caden, a few weeks post ECMO, his sats would drop significantly as well. (Mostly when he was mad, but also when he was going through withdrawl, because he was screaming so much) I always freaked out, thinking that he was going to have to be re-intubated, but they did the mask (his was bi-pap) and he ended up ok. If it's the one that they strap to her head, by careful that it's not rubbing on her nose too much. With Caden's little head, the mask was too big, and on the bridge of his nose, it rubbed it raw, and he has a scar from it now, it's not too big (about the size of a pea)but we notice it. It was also so big that it was forcing air into his eyeballs. I asked if they could use the little sunglass looking things that they use for kids with Jaundice. They put it under the mask so that at least the air wasn't pumping into his eye, and it protected his skin on his nose. Sorry, that was long.
It's so wonderful that the MRI came back normal! I wonder why they wanted to do it so soon though. Why couldn't they let her recover more first? They didn't do Caden's MRI till a few months after we went home. I can see though, how giving the sedation would drop her sats. Good for you, though on turning up her oxygen! Even if it's only for a while.
Hopefully they let off of so many activities for a few days, and decide to stay the surgery for the G tube. We will be thinking about you guys today, and don't be afraid to tell the doctors what you think!
Ashlea
Nate,
We have been reading your blog daily but staying silent. We just wanted to let you know how much we admire your courage and dedication to your family. Amy often wonders how her children became so strong. Well, I remember seeing you exhibit your strength on more than one occasion but what comes first in my mind is the year we were at Hays. I remeber you running toward the goal line with 4 of the other teams players hanging from your body. This was more a display of mental strength than physical strength. They just weren't going to bring you down. We are sorry that your strength continues to be tested yet watch you continue to rise to the occasion.
We haven't had the pleasure of meeting Amy yet can't help but feel we know her since we are avid readers of the blog. Nate, you have been blessed by having such a wonderful wife and beautiful family.
We think of you often and you and your family are in our prayers. If there is anything we can do, just let us know.
Coach Bainum and Linda
Hey Nate,
Good to hear from you. Glad to see you still have the ability to take charge and do what is right for your baby. I'm glad everything has been going so well and agree with you that the activities of the day probably wore Ava out. Amy glad you were able to get home for a couple of days. The pictures of Ava and Kaden you posted are priceless. They are both such good looking kids. Have a wonderful Easter. We will be praying for you all and for Ava to continue to have successes in recovery so you all can get home. We will talk with you all later.
James & Andi
I just wanted to say that your little girl is just so sweet I wish the best of luck to you all and I hope Ava continues to do better.
From Kim
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