This morning we got a text saying that Ella would be extubated which means the ventilator would be removed. It's an important step as she would soon be breathing on her own. We were excited to hear this and got ready for the day and headed to the hospital. We got there around 11 and learned that she was taken off the ventilator at 10:18. They explained that they will see how she does for the next day or so and put her back on if necessary but hopefully won't have to. Ella was awake and it was hard to see her uncomfortable and trying to cry and cough with only tiny sounds coming out. The nurses said that she most likely has a pretty sore throat from the ventilator and she will slowly get more vocal over the coming days. I imagine her mouth is very dry as well and she kept moving and sticking out her tongue while "blowing bubbles" which the nurses suction up, much like at the dentist. Her neck and head are also very large still from the swelling caused by the blood clot in her neck.
A little later, Dr. Watanabe came in and talked to us for a few minutes. He explained that her heart rhythm isn't exactly where they want it to be. They will monitor it over the next week and decide if she will need to have an internal pacemaker put it. We also learned that she has been on a pacemaker since her surgery last Monday, although an external one. This was all news to us somehow which probably seems strange. There are so many wires and tubes hooked up to her and so much "medical stuff" discussed with us that it was probably assumed by everyone that we knew about the external pacemaker that Ella has. It's not a big deal that we didn't know, just somewhat funny. Anyways, we drove back to the Ronald McDonald House feeling a little discouraged after hearing about the internal pacemaker news.
We stayed at the house for several hours and Eli was able to take a nap. We then packed up his things and loaded his and Becca's stuff into her car. We love having Eli down here with us of course (only made possible by Becca staying with us!) but it is also difficult logistically with everything going on. The plan is to have him stay up in Grass Valley with my family for a couple nights and then he'll come back down. We have learned to not really make plans these days though so we shall see what happens and also if we can go that long again without seeing him. We drove back to the hospital this evening and after seeing Ella for a bit, said goodbye to Becca and Eli. It was made easier because Eli was not sad and was looking forward to having "a slumber party with Grandma and Grandpa".
Jillian and I went back into Ella's room for a couple hours and were able to get answers to some questions we had thought of earlier regarding the pacemaker. The nurses showed us some wires that go into an incision below where she has the stitches from her heart surgery. The wires are connected to her heart and can be removed by just being pulled out when the time comes. We hadn't really noticed before because that area is usually covered. However, if it's determined in a week or so that she needs an internal pacemaker, they would have to open her back up and put that in. This would press rewind on the road to recovery but overall would be good for her once she is away from the safety of the hospital. The nurses explained that the pacemakers don't bother the patients at all and just need to have the battery changed every 5-7 years or so. We were reminded again that babies are not like adults that can be up and moving the very next day after heart surgery. It's all a long process which is not a surprise but still hard for us sometimes. Jillian and I have mentioned that it feels as though we go 1 step forward and 2 steps back some days. Overall, we know she is making progress even if it is more sloth-like and less cheetah-like. It's pretty strange that we have been down here for 2 weeks (it feels like months) and we haven't been further than 10 miles from the hospital during that time, haha.
We thank all of you for the continued overwhelming support and all of your prayers. A few things that I can think of right now
-Praise that Ella was able to get off the ventilator today
-Praise that her numbers with the hourly blood tests seem to be good
-Pray that she doesn't have to go back on the ventilator
-Pray that her heart rhythm becomes steady and she doesn't need an internal pacemaker
-Pray that we wouldn't allow our "What if?" thoughts surrounding the ventilator malfunction last week to bring us down and make us angry and that we would keep our eyes fixed on God and His will
-Continued prayer for the blood clot in her neck area to dissipate
-Ultimately, pray that God's Will be done and that we would be at peace with whatever that might be
-Matt
We stayed at the house for several hours and Eli was able to take a nap. We then packed up his things and loaded his and Becca's stuff into her car. We love having Eli down here with us of course (only made possible by Becca staying with us!) but it is also difficult logistically with everything going on. The plan is to have him stay up in Grass Valley with my family for a couple nights and then he'll come back down. We have learned to not really make plans these days though so we shall see what happens and also if we can go that long again without seeing him. We drove back to the hospital this evening and after seeing Ella for a bit, said goodbye to Becca and Eli. It was made easier because Eli was not sad and was looking forward to having "a slumber party with Grandma and Grandpa".
Jillian and I went back into Ella's room for a couple hours and were able to get answers to some questions we had thought of earlier regarding the pacemaker. The nurses showed us some wires that go into an incision below where she has the stitches from her heart surgery. The wires are connected to her heart and can be removed by just being pulled out when the time comes. We hadn't really noticed before because that area is usually covered. However, if it's determined in a week or so that she needs an internal pacemaker, they would have to open her back up and put that in. This would press rewind on the road to recovery but overall would be good for her once she is away from the safety of the hospital. The nurses explained that the pacemakers don't bother the patients at all and just need to have the battery changed every 5-7 years or so. We were reminded again that babies are not like adults that can be up and moving the very next day after heart surgery. It's all a long process which is not a surprise but still hard for us sometimes. Jillian and I have mentioned that it feels as though we go 1 step forward and 2 steps back some days. Overall, we know she is making progress even if it is more sloth-like and less cheetah-like. It's pretty strange that we have been down here for 2 weeks (it feels like months) and we haven't been further than 10 miles from the hospital during that time, haha.
We thank all of you for the continued overwhelming support and all of your prayers. A few things that I can think of right now
-Praise that Ella was able to get off the ventilator today
-Praise that her numbers with the hourly blood tests seem to be good
-Pray that she doesn't have to go back on the ventilator
-Pray that her heart rhythm becomes steady and she doesn't need an internal pacemaker
-Pray that we wouldn't allow our "What if?" thoughts surrounding the ventilator malfunction last week to bring us down and make us angry and that we would keep our eyes fixed on God and His will
-Continued prayer for the blood clot in her neck area to dissipate
-Ultimately, pray that God's Will be done and that we would be at peace with whatever that might be
-Matt
Thanks for the update, Matt. Continuing to pray for you guys!
ReplyDeleteWhen our Rebecca was eight weeks old she was into baited for three weeks… It was pretty rough watching them extubate her so maybe it was a blessing that they did it before you guys got there. Love, Chrisy
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