April 10, 2012

It's always a rollercoaster ride......

Hey everyone-
Sorry for the delay of update! Been a little busy.....I'll post by each day
So this morning we came in and Jenna seemed much happier. She was coming down on the oxygen, her chest x-ray was much better, not completely clear and the lung was still a little down, but she was getting better. Through out the day she did pretty well. She came off the hi flow oxygen by the afternoon. So orders from the doctor called for her to act as if she was at home, get up, walk around and see how she maintains her oxygen. She did well, we took two walks and she did great on 2 liters of oxygen. I could tell she felt better because she was sliding in her socks everywhere in the hallways, throwing her toys around and then telling me to "hush it", so the attitude was back. So since she was lower on the oxygen, she was able to eat finally. We thought it would be appropriate to put together a little cake and sing a long to her for her birthday since we could not on Sunday. So, we called downstairs and got a cake, the nurse contacted child life and the nurses gathered and we all sang Happy Birthday to her. They even brought the music therapy girl and she played the guitar with us. It was so great and Jenna was in awe-I'm not sure if she understood what was going on, she was nervous when everyone came in her at first because she thought something was happening but she was ok once the singing began. Then she noticed the music table with all the instruments. She was soooo excited!! She got to play the xylephone, drums, guitar-it was so cute watching her play. She continued to do well through the day, Meme went home after staying with us for a few days-she was great help. By yesterday evening, she was down to 1/2 liter oxygen. She did very well and her oxygen saturations had stayed in the high 80's and low 90's all day. Plus it was great because she got balloons from Cordell, a little boy from home who was at the hospital for appointments for himself-it was so sweet for his parents to stop by! So we settled her in for the night, in hopes that we would go home the next day.
Well, as we know it, Jenna always does things her way. We arrived this morning and guess what-little miss did not wean off oxygen as per the orders-instead she went up-all the way to 1 1/2 liters. The nurse stated that the doctor wanted to see how Jenna would react by just turning her off the oxygen immediately, well she didn't like it. Within a few minutes she was de-sating and then she became upset so in order for her to recover they had to place her up higher on the oxygen. The doctor said as long as she stayed above 75, she was ok-once she is off the oxygen she wants her to be above 85. They hoped she would be able to wean the oxygen through the day and felt she was stable enough to be on the stepdown unit and not on ICU anymore. They also did a chest xray and noticed that it was "wet" looking, not so much mucous looking. So they put her on iv lasix twice a day and we were just going to wait on a bed to the floor-they were full at the time so we were not sure that we would move today or not. We watched her through out the day and she was not able to maintain her oxygen level above 75-80. She was breathing a little harder, but was not uncomfortable. She was very fussy and irritated all day. Also she did not pee all day, she had one good diaper after her lasix and she would not drink very much. So when rounds at 5 this evening, the doctor came in because we expressed concerns. I informed her of Jenna not peeing, so did we need to do maintainence fluid? Then we asked about what did things look like now, since her sats would not maintain, even on oxygen. Also of Jenna's mood all day. So during the round discussion, she decided to run labs on Jenna (which all came back fine), she stated that her situation mainly looked like the pulmonary edema still, but to be safe they were giving IV Lasix, which at that time they increased her to every 8, instead of 12. She said that they needed to start looking further, because Jenna was ready to go home and she changed today and she wanted to know why. They felt she should also go back on hi flow oxygen, so she was placed on 5 liters, by tonight she was weaned to 2(and her says were still in the hi 80's even 90's. They wanted to double check it was not a major issue resulting from the cath-since she changed today. So this evening she seemed to do better and after being on the hi-flow and also she coughed up a large mucous plug, she was a much happier little girl. She was playing and being silly again. She even let us go get her McDonald's-she has had separation anxiety with us leaving since we came in the hospital. Also today we spoke with Dr. Beekman-he also stopped by yesterday. He was not sure why she was continuing to have the edema issues, because those usually resolve in a couple of days. He thought if it continued maybe an echo may be needed, but unfortunately her pulmonary arteries are not able to be seen well. However, it said maybe the first echo last week may have mis read her upper atrium being closed, he said it is possible it could be slightly open(like a little flap over it) maybe causing her to shunt and make her oxygen levels go down. But he said he did not feel like that would cause this much issue. We also discussed her cath again and I verified with him about her plans. I asked if surgery in a year was possible or most likely and he said very likely. Her cracked stent needs to be removed and replaced and can only be done in the OR and her pulmonary valve in the conduit is severly leaking and needs to be replaced. We will return October 5 for her next heart cath to look at how she is doing and then he will talk to the team about her next step. Regardless, she will be having open heart surgery in the next year, which means she will be on the bypass machine. As we all know the last time she went in for open heart, was on the bypass machine she ended up in the hospital for 5 months. I pray this does not happen again. I really thought things were slowing down with her procedures. However, I guess God and Jenna have other plans. Plans that we will have to accept and deal with.
So tonight we finally got Jenna to sleep, I thought that she would do well going to sleep, but she kept hearing everything outside her room. She was very tired, we even attempted to a walk today and made it 30 feet and she said "I tired" and made daddy carry her back to the room :( Hopefully tonight she will do well, we will see when we come in tomorrow morning. I hope she has weaned down, I am a little timid to agree to going home tomorrow if she is much better just because she keeps bouncing back and forth. She will have a couple treatments through tonight to help keep the mucous moving in her chest and hopefully she will cough it up. We will see. Please continue to pray for her-all chains are working. We thank everyone so much! We love you all!!


  1. We are keeping little miss jenna in our prayers and all of you as well. We pray that God will give Jenna the strength to get stronger each and everyday and that He helps the both of you stay strong while you have to watch your baby girl go through all of this. Please know we are here if you need anything. Lots of love sent your way.

    Your friends,
    Lori, Justin, and Tristan

  2. Our hearts go out to you and your precious little girl! We continue to pray for her recovery. Besides prayers, please let us know if there is anything we can do to help.

    Lisa, Brent, and boys