Well it's 11:00 pm and I am just sitting down... whew. Since Ella's been placed on oxygen she has been in need of 24 hour care. She is hooked up to a machine that monitors her oxygen levels and her heart rate. This machine alarms loud and often... brings back memories of the constant beeping while in the hospital. This new way of living has been a very hard adjustment for all of us. Ella does not handle the noise piece very well and is constantly rubbing it out of place, Jon and I are having to take shifts all throughout the night. One of us watches Ella and puts her to bed, we stay up as long as we can (usually about 5 hours) then we wake up the other to switch... although we have only been on this new schedule 3 days it has already taken it's toll. I realize you all did not come to read about us, but rather Ella, so I will move on to her doctor visit. So we went to Ella's cardiologist this afternoon, she had an EKG and an echo cardiogram to determine what is causing her stats to drop. Her cardiologist said that when she originally had her shunt put in, it was a little large and she needed to grow into it. Because of the size, it was causing too much fluid so they had her on a medicine to make her pee. About a month ago they upped her dose of it. Well after the check up today they said that she has completely grown into her shunt and may in fact be out growing it already. Also it has noticeably narrowed. So they are having us stop the medicine that makes her pee, and also one of her other medicines. Leaving only two daily meds! Until the meds have enough time to get out of her system she will have to remain on the oxygen. This may have no effect on her stats, but it's worth a shot! We are going to be talking to the cardiologist on Wednesday to give a report on how she does without the meds. I am thinking she is a little dehydrated and stopping the meds that make her pee should help that as well. Right now we are trying to get Ella to at least 4 months before doing her glenn surgery, but she may not be able to wait that long. Basically we will know more in a few days... we are hoping that stopping these two meds will buy her enough time to have the surgery at the best possible weight/age. If this doesn't work, we will be going down to Dallas very soon. At that point, they will either do a cath surgery to postpone the glenn and if that doesn't work or if they feel she is ready for the glenn they may go ahead and do it. Please be praying for GOD'S TIMING in all of this, sometimes it doesn't seem right to us or the doctors, but we know God is in complete control.
Bryce and I ate praying for you and Jon. That God will provide strength that you didn't even know you had. Also that everything with Ella with be in God's timing. Thank you for the update, you guys have been on my mind all day.ReplyDelete
We are still praying for all of you Amy:) You and Jon are very important to us also!!! We love you and are praying for Gods will which hopefully will allow her to wait until 4 months for the glen:) XXXXXXOOOOOOReplyDelete
Thank you for the update. Also know that reading about Ella's parents helps me know how to pray and having walked the hard road of an ill child I know that you need prayers as well so please do not refrain from sharing about your struggles as well so I (and those of my 12 children old enough to pray!) can pray for Ella AND her mommy and daddy!ReplyDelete
We are praying everyday for you three! That you & Jon will have rest & peace and beautiful Ella to grow in God's perfect timing! We love you three! Praying always!ReplyDelete
Thanks for the update... I have been thinking of you! Prayers sent your way :)ReplyDelete
I also have a son with HLHS, and we went through a very similar time between his Norwood and Glenn surgeries. When he was only two months old his sats started to drop significantly. He was admitted to the hospital for a UTI, and during that admission they did a couple of blood transfusions. Apparently these transfusions can raise the hematocrit levels in the blood which improves the saturations. Anyways, we had to use oxygen at home intermittently as well--I know that it is not easy.ReplyDelete
We tried to get Elijah to 4 months, but only made it to about 3 1/2 months before it became necessary to do the next surgery. Even though it was a little early, he did wonderfully.
I know it probably seems like there is no end in sight, but once you get Ella to her next surgery, things should drastically improve. It will be like having a whole new baby. Hang in there! We're all praying for both you and Jon and sweet Emma.
We're praying and thinking of you and Jon often!ReplyDelete
she's beautiful! still praying for you, Jon and Emma!ReplyDelete
Sweet, sweet smiling baby! I am praying for you guys as well as Ella. Having a healthy baby can be exhausting so I can't begin to imagine the toll it takes on you when you are constantly having to monitor her for various serious issues. I continue to pray for Ella's health and I pray for your strength both physically and emotionally. I also pray for wisdom for the doctors who care for her that they will make exactly the right choice for her at exactly the right time. God IS in control. Praise the Lord you are able to lean on Him.ReplyDelete
We love you sweet Ella Dawn!!! Praying for you daily!ReplyDelete