Feb 23

Really?? This month is just about over and I feel heartbroken. Right now we face the unknown. It feels like we have been asking the unknown questions for quite some time. Not knowing if we get to go home anytime soon, or are they keeping us until her surgery. I am somewhat of a planner, or I like to think I am. I like organization (even though my house doesnt show it) and I like details. Haley is always keeping us guessing. When, how, what's next? She is not like any other child. She defies the odds of this and that, and she also throws things in to the loop that no one saw coming. Her fate of coming home depends on her getting off the milrinone, and she cant do that until she is finished going crazy with her lungs. We are very relieved that she doesnt face a trach right now. She is still very fragile when it comes to her lungs though. With her we have to take one step at a time, and remind the doctors to do that as well. My SIL's birthday is just 2 days away and I need to order presents for her. This month has flown by. I am really fighting with moments of utter depression, well in my own little world it feels like that. I feel like screaming, crying, and I thank God that He still loves me in spite of my weaknesses. I cant make everything right like a mother should be able to. I cant wave a magic wand and make her instantly better. I have to trust God, in His own timing. Haley is such a miracle! I am thankful that she is stil alive, while other mothers are suffering loss. I cant even imagine the daily/constant ache they have. One thing I have learned from this whole experience is treausre the moments you have.

Last week was a scary week. Things are definetly are on the upside! She had her bronch yesterday and it all looked good. She was even extabated 2 hours later. Her xrays have looked good too! Her blood gases have looked encouraging too! Hoping to have those chest tubes out, and then we can hold her again! Cant wait for that. She has been content with her binky. I have had such mixed emotions going through this. I try and stay positive, but sometimes fear can enter in and do crazy things in my mind. I also try and push back any anger that comes in, or plain jealousy that another kids recover so much faster, they get to go home after being in the hospital such a short time. I dont begrudge them, but sometimes it's hard

Monday

Monday Febuary 20th
Her chest tubes will hopefully be coming out. Her xray looked good again, so they are going to send her down to get a bronchogram and check out her lungs. We are nervous of this, but also trusting God that everything will be ok. They are hoping to wean her off her vent and extabate her as soon as possible.

This was after her surgery but before her 2nd one in a week. Poor thing!

This was before her surgery. She is just loving Daddy's attention!

This is a picture of a Pinewood Derby car made by my cousin's husband Mike. In honor of Haley. Thought that was super sweet

The ups and downs of crazy....

I never thought that after this last surgery that we would be sitting here two weeks later still with a breathing tube and now facting the questions of what next. Haley had the band over her lung after her first surgery, and then that Monday they opened her up again and moved the band on down. We thought within a few days we would start having our little girl back. I was sure by that weekend she would be extabated (I was also bringing the kids up). Well finally on Sunday they did take the breathing tube out but she had quite the struggle. I had to go home and I stayed til Wednesday (missing Valentine's day with Jeremy and Haley). I really enjoyed my time at home but really missed my hunny and sugars. It was really hard being away from them, but it's hard being away from the others too. I feel so torn! I was going to stay through at least until Thursday to meet up with the Huffs to get the car. Monday my van broke down. My brother thought it might be the battery so he came and changed it that night. Tuesday I went with my mom to Wichita and didnt drive my van. I was feeling very bummed that day, not being able to spend "LOVE" day with my husband was really getting me down. That night though Haley was really struggling (actually evening time) they had to reintubate her. Turns out she had a numothorax (a air sac that popped). They put a chest tube in. They wanted to do a bronc on Thursday to look at her lungs to see if she needs a trac. So putting everything on hold I decided to come back sooner. I went to eat lunch with Joe at school and when I drove up there the battery light came on. My van wasnt fixed so I would have to take Jeremy's truck. I got up here that Wednesday and the wait began. Thursday rolled around after a long night (I spent the night at the hospital giving Jeremy a break). The doctors came in and said that they would not do the bronc and give Haley a break, let her heal. So we were going to wait until next week. Now it's Saturday, and we went last night to get a good night's sleep at the Ronald MCdonald house. We got a call this morning around 6 am that she had another numothorax on the other side and they had to place another chest tube. They did a CT scan and that really didnt show anything. The resident didnt think it showed any bronochmalcia, so now we have to wait until she has the broncogram. The waiting is killing me. They had a day of prayer for Haley today. Im so thankful for that! We have some amazing prayer warrior friends! I am exhausted and hopefully it wont take two weeks until I update again.

Feb 6

They took Haley back to the OR to look closer as to why she was having problems with her right lung. They did a bronchial scopel and discovered that there was obstruction and they would have to open her up. This is her 2nd heart surgery in a week. Dr O Brien took off the band that he had placed last week and moved it. Somehow it was over her airway and constricting it. She is doing much better. Her lungs look so much better. She is resting comfortably back in her PICU room and they are going to leave her on the vent for a few more days. Letting her rest is the plans!

Feb 4

Haley's lung (her right one) is collapsed, worse then yesterday. They are continuing IPV treatments and if that doesnt work then they will put a scope down her throat tomorrow to see if her lung vessel is constricted and if it's the PA band that's doing it. If so they will take her back Monday to the OR and open her back up. Please Lord, let her lungs clear up so they dont have to open her back up so quickly. :(

Surgery is DONE

They finished with the surgery. They added an additional band to help tighten the resisitance. She is back in the PICU now and we should be able to go back. Hopefully this helps her circulation to her lungs.

busy week

Feb 2
Today is Groundhog day, guess the ole Phil saw his shadow and we are supposed to have 6 more weeks of winter, only time will tell. It's been almost a whole week since I posted last, cant believe her cath was already a week ago. I went home on Sunday because the kids had dentist appointments on Jan 31, that Tuesday. I loved spending time with my other kids even though it took me away from Haley. Alasandra woke up sick that Tuesday morning so she wasnt able to go to the dentist, but I was still able to take the boys. They got a great report. No cavaties! Joe has to go back in April to get some sealants on his 6 year molars. Other than that everything is good. Jeremy called me Wednesday and told me that they had a cancellation in surgery for Thursday so they put Haley on the schedule. As long as the PICU could find a spot. (we are still PICU status but have been enjoying the life in 2 Henson). They just took her back to tighten her band. I hate having to open her up, but this is the best option for her to get her lung pressures down. Now is the waiting game :( It will take several hours.