Last night as I was getting more and more upset about Avery, I started blaming the nurse, then the doctor and ...what if's. Now in the light of day, Avery is doing better, and time seems to be a healer once again.
Monday morning I got up and went for a quick run at a park that is next door to the RonMcD house. It is called the Nichols Arboretum and with all the flowers in bloom it is beautiful. It was a fun run, despite me getting lost on my way out. As we all know, life can change one minute to the next and time is a funny thing to me. It's either moving slower or flying by and this morning, having last night over, has made all the difference to Ave and I.
Here's to getting the fluid out of her lungs and a smile on her face again.
Wednesday, August 13, 2008
Tuesday, August 12, 2008
Rough Day
Tuckered out girl with the silly grinned bear
Today, Avery was moved from the peds i.c.u. to the general care wing at the hospital. There's is progress for you. She has a lot of fluids in her upper respiratory area, she keeps wanting to cough to get it all out, but can't seem to get it out. Then she gets very upset, out of air and her oxygen saturation goes down. It was kind of scary, because she woke up, struggled for air, then not even a minute and her oxygen went down to 57 (not good). Then the nurse, aid and RT get patting on her lungs, get oxygen flowing at her, sit her up and suction the junk out. Two of her episodes were when I left, so I'm afraid to go.
...She just had another episode and I know something is wrong and I feel like taking her to the E.R. to get some action around here. I think she needs more experienced care. Now I'm waiting for the doctor and Avery has settled down for now. What to do?
Monday, August 11, 2008
Chest Tubes coming OUT!
Avery is progressing nicely. She has been in some pain today because of her chest tubes, but they're coming out tonight! Avery would try and sleep, but cough, or move and cry. I just keep telling her I'm sorry and it'll get better.
Avery got some lines out today, one on purpose and one wriggled out somehow. She has orders to move from ICU to general floor for tomorrow. :) Things are going well, not that Avery sees it, but they are.
On Sunday, Eric, Zachery and Eric's parents came up to visit Avery. Zach was glad to see me, and I him, but when I asked him if he wanted to see Avery, he said, "um, no thanks". So polite.
Avery got some lines out today, one on purpose and one wriggled out somehow. She has orders to move from ICU to general floor for tomorrow. :) Things are going well, not that Avery sees it, but they are.
On Sunday, Eric, Zachery and Eric's parents came up to visit Avery. Zach was glad to see me, and I him, but when I asked him if he wanted to see Avery, he said, "um, no thanks". So polite.
Sunday, August 10, 2008
Family Pics
Zachery and Avery, toe holders
Pre-surgery family photo
Avery 24 hours after a successful hemi-fontan sugery. Now she is extubated!
Saturday, August 9, 2008
Two steps forward, One step back
I'm having flashbacks to the roller coaster ride we took last time. Soon after our last blog update that was so positive, I got a call from the doc saying they were worried about her low oxygen saturation and ...pleural effusion...chest tube to drain that fluid. They put it in, got a lot of fluid out, then through an exray, saw it wasn't in far enough, so I had to leave again to fix it. When I left Avery last night, she was sedated and okay.
This morning, she looked less puffy, diuretics are helping her to take the fluid off well. She did move around, open her eyes, but it was a little much and so she got more sedation.
Now, there's another spot, on her other lung of fluid (pleural effusion) and so the doc on duty is putting in another chest tube to drain. Her oxygen saturation has been lower the past 24 hours and hopefully this will help turn things around.
The wonderful nurse, Amanda, said some babies have a tendency to these lung troubles, some don't. I want to understand more the reason/physiology of why babies like Avery have lung issues.
All my excitement yesterday was dashed as I got the phone call. I think we'll take it hour by hour and we begin the roller coaster. :)
On a different note, we've been in our new house a week now and Eric is weeding through all our boxes and finding places for all of it, I imagine. How does one get so much stuff? I'm sure it's not my fault. tee hee
Once we get internet at the house, we want to put some pictures on here! I have a sister and brother who bought homes this month too and a close friend who did also. Tis the season to buy. It's a big deal to me and we love it, small warts and all.
This morning, she looked less puffy, diuretics are helping her to take the fluid off well. She did move around, open her eyes, but it was a little much and so she got more sedation.
Now, there's another spot, on her other lung of fluid (pleural effusion) and so the doc on duty is putting in another chest tube to drain. Her oxygen saturation has been lower the past 24 hours and hopefully this will help turn things around.
The wonderful nurse, Amanda, said some babies have a tendency to these lung troubles, some don't. I want to understand more the reason/physiology of why babies like Avery have lung issues.
All my excitement yesterday was dashed as I got the phone call. I think we'll take it hour by hour and we begin the roller coaster. :)
On a different note, we've been in our new house a week now and Eric is weeding through all our boxes and finding places for all of it, I imagine. How does one get so much stuff? I'm sure it's not my fault. tee hee
Once we get internet at the house, we want to put some pictures on here! I have a sister and brother who bought homes this month too and a close friend who did also. Tis the season to buy. It's a big deal to me and we love it, small warts and all.
Friday, August 8, 2008
Sing a Song
I am too happy for words. Avery, although she looked worse today, face is slack and puffy, she isn't a blueberry. They're still keeping her sedated, but things look good. They "sprinted" her off of the ventilator, where Avery initiates the breath and the machine gives her a puff of air to help her breathe on her own. They will sprint her, probably 3 times and if all goes well, they may EXtubate her tonight! Yay. After she was INtubated for so long last time, this seems almost unreal (perhaps it is and I shouldn't jinx it). :)
Avery did open her eyes, groggily, but I did put my face where she could see it if she was focusing.
Today, the wonderful social worker, let me know that I got into the Ronald McDonald house!!! Wonderful, reassuring, terrific news.
I'll keep her changes posted and hopefully get a photo up tomorrow.
Avery did open her eyes, groggily, but I did put my face where she could see it if she was focusing.
Today, the wonderful social worker, let me know that I got into the Ronald McDonald house!!! Wonderful, reassuring, terrific news.
I'll keep her changes posted and hopefully get a photo up tomorrow.
Thursday, August 7, 2008
Hurry up and Wait
Avery went in this morning for heart surgery and she is doing well as can be expected. We're so happy about that :) They had a hard time getting her i.v.'s in, but they're in now. The pressures in her heart are much better than before.
We just went into see her and she looks pretty good, better than she did after her first surgery. They closed up her chest completely and all we can see is the patch over it. She is sedated so she won't move around, mostly. She has a breathing tube in, feeding tube in, chest tube for drainage, 4 i.v.'s and some wires to measure pressures in her heart/control rhythm.
What they did in surgery today was: 1) took out shunt, 2) patched superior vena cava to pulmonary artery and 3) stregthened pulmonary artery. For #2, it basically means the un-oxygenated blood coming back from above her heart is now being directed straight to the p.a. leading to the lungs to get oxygen, instead of going to the heart to be pumped to the lungs (bypass the heart).
We have felt good about this surgery and thank you for all your prayers, fasting, help and concern for Avery and our whole family. We obviously hope that her recovery will go well and the smiling baby we left this morning will wake up and be strong and happy again!
We just went into see her and she looks pretty good, better than she did after her first surgery. They closed up her chest completely and all we can see is the patch over it. She is sedated so she won't move around, mostly. She has a breathing tube in, feeding tube in, chest tube for drainage, 4 i.v.'s and some wires to measure pressures in her heart/control rhythm.
What they did in surgery today was: 1) took out shunt, 2) patched superior vena cava to pulmonary artery and 3) stregthened pulmonary artery. For #2, it basically means the un-oxygenated blood coming back from above her heart is now being directed straight to the p.a. leading to the lungs to get oxygen, instead of going to the heart to be pumped to the lungs (bypass the heart).
We have felt good about this surgery and thank you for all your prayers, fasting, help and concern for Avery and our whole family. We obviously hope that her recovery will go well and the smiling baby we left this morning will wake up and be strong and happy again!
Subscribe to:
Posts (Atom)
