A New Week

Kirby has had a good stable weekend. She has continued to make progress and gets stronger each day. They were able to close her chest on Saturday with no complications and she tolerated it well. They have begun to feed her a small amount of food to help her get stronger and ready for getting the ventilator out. They are doing CPAP trials (turning off of the ventilator) today and hopefully take the ventilator out tomorrow. We had a little hiccup yesterday with the pacing and rhythm of her heart. They had to turn the temporary pacemaker back on bc of some heart rhythm issues, but they don't seem too worried about it right now. They think it will work itself out bc of her response when they turn it off. Continue to pray for miraculous healing and for us to be home for the holidays.

*I have been meaning to say that I do not spell/grammar check bc I am hurrying to type this so I apologize for my mistakes on here. :)

Post-Op Day 3

Kirby continues to amaze Drs. And nurses with how well she is doing. We have been amazed at God's goodness through this journey....the support, prayers, encouragement, visits, etc. have been amazing. Kirby had a good night and a good day so far. Although she has an open chest and many many lines attached to her, she is doing great. They have weaned all blood pressure medicines except one, which is only a small amount. She is still sedated and on lots of pain meds. The ventilator has been weaned a good bit and her swelling is pretty much gone.....amazing considering how swollen she was before surgery. She continues to "pee" in excess getting off all of the extra fluids.  The plan is to close her chest tomorrow and then the next step will be weaning the ventilator. The X-ray of her lungs looks good also. Thank you all again for your continued prayers. She truly is a miracle!

2 Days Post-Op

Kirby had a good night. Took her off one blood pressure medicine and weaned down on another. They turned down the ventilator a bit as well. They decided to turn off the paralytic.....which they had to turn back on after only 5 minutes b/c Kirby decided to start moving all over the place......my little fighter. They also gave some more sedation and pain meds. Her stats, sats and blood gases all look good. Thank you Lord for a great day!

Also, I think I forgot to mention that when she came out of surgery, she was on a temporary pace maker and we were told she would probably need a permanent one. The morning after surgery, they turned it off to test her and her heart was completely in rhythm on its own and has been ever since. Praise the Lord. She also has been "peeing" so much that she soaked through her cathater, through her diaper and all over the bed. Ha....thats what happens when you pray for "pee" more than can be contained. Kirby got her toenails painted last night and is doing great!

God is Good!

After a VERY long day Kirby came out of surgery last night around 10:00. We were surrounded with around 15-20 family members and friends in the waiting room all day to support us and Kirby during this difficult day. Kirby went through the most difficult surgery so far specifically with how sick she was going in. The team actually questioned doing the surgery once they got to the OR bc her stats were so low..... But knew this was the only option at that point. It again took several hours to get through scar tissue, took some difficulty greeting on the heart lung bypass, and then the difficult procedure itself. We got continuous hourly updates from the OR which contained positive messages that she was stable the entire time. Praise God. Once the procedure was finished it took several hours to get the bleeding to stop. We were warned that she was coming out of the OR very sick and unstable. When we got this report we came together and prayed as a group and once we got the final call....things had improved. Dr K came out and was very concerned about her state at that point. They did a mechanical valve replacement, place several chest tubes, scraped scar tissue from around the lungs to drain fluid, the left lung was partially collapsed, she had not "peed" in days but began peeing during the surgery despite renal failure, etc. Lots went on during the day. Kirby had a good stable night and improved. She had a great restful day. The Dr was very pleased today. Kirby has a long way to go so keep praying. God hears our cries.

Update 2

Kirby's valve was replaced with a mechanical valve. She remained stable throughout surgery. She is off the heart lung bypass and they are finished with surgery. They are monitoring bleeding and she will be out of the OR soon. Thank you Lord for surrounding Kirby today.

Surgery Update

Kirby went back to surgery around 7:45 this morning. It took a while to get all of her lines in before the surgeon began. It also took several hours to get through scar tissue. The last update said they were about to go on the heart lung bypass. She is good and stable. Keep the prayers coming.

Surgery

Kirby has continued to accumulate fluid in her body and at this point continues to have difficulty getting the fluid out. It is ultimately due to the heart valve leaking  more than her body can handle. It is working against what her previous second stage surgery was designed to do. Dr. K and the team have determined the best route right now is to do a valve replacement in the morning. At her state right now she can't wait any longer to do something. So, Tuesday morning the surgeon will take Kirby for one of the toughest procedures yet specifically bc of how sick she is right now. Pray for complete healing as we continue to place Kirby in God's hands.

Prayers

Kirby continues to be in ICU. Since the last update Kirby has retained a lot of fluid in and around her lungs. Thursday morning they attempted for 3 hours to place a chest tube on the left side. She had fluid around the lungs in a place that is difficult to get to and where scar tissue is, causing the fluid to form in different pockets around the lungs. Because of this, it is nearly impossible to get to all the pockets. They decided to put the ventilator in so they could sedate her really well to try again with the chest tube. Dr. K tried for 2 hours that evening to place a chest tube. They did leave 2 tubes in and they have drained some, but not a lot. They took the ventilator out Friday afternoon but Kirby struggled with breathing and was very uncomfortable. They were not able to feed her bc of her struggle to breathe, they couldn't give her morphine bc it interferes with her respiratory drive and they couldn't give oxy bc she hadn't eaten and it can upset their stomach. So...they decided the best thing was to put the ventilator back in so they could feed, sedate, and let her rest and get stronger. The X-rays have looked better but Kirby's swelling has not decreased. She is very swollen. She continues to have major fluid build up that can only be explained by her leaking heart valve. They have explained it to us but there is no way I could explain it here in writing. Saturday was a rough day for Kirby. She seemed to be struggling breathing, her blood gases were not good, her oxygen levels were low, and she was not "peeing". So....we did what we knew to do and that was PRAY and intercede. Soon after Kirby's sats improved and she began "peeing". God hears our cries. She had a good night and things improved overnight. Prayer works so keep Kirby lifted up in your prayers continually. She is still fluid overloaded. We will be talking to the drs tomorrow so I will update.

Roller coaster

Well since last Wednesday we have continued the roller coaster ride that we are so ready to get off of. Kirby stayed in ICU overnight.ht last Wednesday after putting in a chest tube to drain the fluid from the right side. She had a good night so they sent us back up to the room Thursday morning. Kirby seemed to be feeling better by Friday evening and began to give us that sweet smile again. She continued to smile and laugh throughout the day on Saturday. Sunday she didn't seem to feel good and seemed more tired. During Friday night, she seemed to be working harder to breath and her o2 sats were on the lower side. They did an X-ray and an echo and it appeared that there was some fluid build up around the left lung which was causing some difficulty breathing. They decided to take her to the ICU again to monitor her and decide whether or not to put in another chest tube, this time in the left side. They were not able to put in a chest tube bc of where the fluid is located and bc it is a smaller amount of fluid o they are working on getting the fluid off using diuretics. Kirby was very content and smiling this morning and looks better. The X-ray during the night showed less fluid so hopefully this means the diuretics are working. They have currently taken her back to re-wire or redo her PICC line bc it will no longer work to draw blood from. So...right now we are waiting on the fluid build up to diminish so we can get her healthy and home. We have had several days of being frustrated and discouraged but have been refreshed by some encouraging words and songs. We stand on God's word that Kirby is healed. Also James 1:1-18 are what we choose to believe each day. He is stretching our faith and preparing us for a great journey. Josh is also reading a book called "The Circle Maker". Such an encouraging book. I have started it but am not as far as he is. Keep lifting Kirby up in your prayers.

Complications

Kirby is now back in ICU after some fluid build up in and around her lungs. They put in a small chest tube in the pleural space around her lungs to drain the fluid and she is resting more comfortably now. She has had a rough morning with pain from thr procedure yesterday and the difficulty breathing due to the fluid around and in the lungs.

Long day

Well it was a long day in ICU but we made it back to Kirby's room at almost 10 last night. Surgery went well. She had a hard time waking up after surgery bc they gave her some extra sedation once she started waking up bc they were afraid she would wake up with a vengeance. Once she finally woke up they took out her ventilator pretty quick and she did just fine. They put in several lines during surgery so they also had to be removed before moving to her room. She had a pretty restless night and this morning has continued to be in pain and difficult to console. She is also very puffy from some fluid build up so they are giving her some extra diuretics. Pray for comfort and peace for her throughout the next few days.

Closer than ever

Well I have been slack with updates over the last few weeks. We have have been busy busy around here. Kirby has been doing really good. She has finally gotten back to herself...smiling and sweet. We have been busy with PT, OT, and Speech. Now that she is feeling better they are working her hard to catch her up. Today we have reached yet another trying day. As we speak, she is in surgery getting a G-tube (a feeding tube in her belly) and a Nissen (a procedure where the stomach is wrapped around the base of the esophagus to help prevent and deal with reflux). This procedure should take around 3-4 hours. We took her down this morning and handed her over around 8:00 and they planned to start the surgery around 8:30. Another obstacle but a step closer to home. Kirby has begun eating some by mouth but it will take a while for her to be able to consume enough by mouth for adequate nutrition, therefore, these procedures were necessary. After the surgery, she will recover for the day and possibly overnight in the PCICU then return to her room. The plan after this surgery is to work on getting off a few meds and tolerate being off the meds, then we are HOME FREE! Keep the prayers coming for a safe procedure today and a speedy recovery.
Here are some recent pictures: