Saturday- Ups and Downs

Late last night Teagan was moved from the Cardiac ICU to the Cariac and General Surgery floor. Once a patient here is deemed 'ready', they have to move you once a bed opens up even if its late.This is a good step in the right direction but we were exhausted and moving our entire room and poor Teag at midnight wasn't ideal. On the 'floor' all of the rooms are shared and the space is much, much smaller with less nursing attention. I was anxious about Teag's care since she is still pretty fragile and taking 10 medications at various hours day and night. None of us slept much because of our late arrival and our roommate who was really hurting from an operation earlier yesterday and had alarms, bells and crying happening all night. We all felt really bad for him (also 7yrs. old like Teag) but we could have used some sleep!

Also when you're on the 'floor' they like to do xrays and labs between 4am-5am to have the results ready by morning rounds. This meant waking Teag up and trying to move her sore body to a wheel chair with all her tubes/lines and wheeling her across the hospital in the bright lights after only and hour of good sleep. We finally got her settled back in her bed, when the lab tech came in to draw her labs for the day. Teag was such a trooper but understandably upset about the pokes and early morning interruptions...

We are 3 days out from her first surgery and the soreness/pain is really setting in. Teag was just tired and sore today, so no smiles or perky chats. This is totally expected but also sad to see. Baby steps forward and back... The Dr.'s really need Teag to get out of bed, sit in her chair and try and walk and have made an aggressive schedule for her to do so. She's really, really oxygen dependent and they're hoping that once she's walking this will improve. Right now if she takes off her oxygen, her sats drop into the 60s and 50s pretty quickly which I scary to see. The nasal cannula has destroyed her nose with the constant dry air and the last two days she's had constant nose bleeds and needed to wear the full mask instead. We are working on a cool mist in her mask, but they can't offer the same in her cannula. She can't eat, drink or talk well with the mask so today has been tricky.

We plan on helping her walk a few steps in a big and use her lungs a bit more. Then hopefully we'll all get our first night of more than 1 hour of sleep at a time! Trent and I are taking turns sleeping bedside in a chair and on the couch by the window since we still have not received a room at the Ronald McDonald house. This is a busy time for the hospital and there just isn't room for us yet. My daily goal has been a quick shower upstairs in the shared parent shower area. It's amazing what a few minutes of hot water does for the spirit! We are confident that tomorrow will be a better day for Teag and that her body just needs a bit more time to rest after two days of surgery in a row!

This has been our day- tired and a bit sad. :(

 Teag did get to try some real food today for the first time since Tuesday! We ordered her a few of her favs (chicken and noodles, fries and strawberries) but could only get her to eat a few bites. Again, baby steps...

 Little brother Bode has been really sick since Monday (an added source of stress when I couldn't be with him)  but is feeling much better today! He did get stung by a bee earlier (poor guy can't catch a break!) But I was sent this pic of this from this afternoon looking like himself, finally! :)

Surgery #2 and Friday update

Surgery last night was successful at ballooning open her bent stent from wed.'s surgery. They did have to access her artery through an incision in her groin in addition to the incision in her neck so she was really sore and had to lay completely flat without moving for the first 6 hours which she was not happy about. She was in the OR for 2 hours and then in recovery until we saw her back in the hospital room around 5. She was pretty groggy and very sick from all of the meds that she's had for pain. We sat and held her hand, fanned her and used lots of peppermint oil in the air to help her tummy.

Throughout the night we tried different pain med combos to try and help her without making her so sick like the morphine does. Around midnight she received a pain med that made her really scared, loopy and not herself at all. She kept feeling like she couldn't breathe and was choking, poor thing. She ended up kicking out part of her foley catheter during one of her choking episodes so the nurse just removed it. She was able to sleep for 45min or so at a time after about 1am and is getting by on just Tylenol and Toredol (sp?) which is like super iv motrin the nurse said. It's pretty amazing to see her off of all narcotics 2 days after open heart surgery. We are starting some oxycodone once she eats a bit but she still doesn't feel like doing much eating or drinking- and when she does she's sick to her stomach. We've given her Zofran, Ranitadine and now an anti nausea patch that we're praying does the trick!

This morning she still had her 3 chest tubes in which help drain fluid from surgery. These are under her skin 3-4 inches deep and make it very hard to move or breath with out pain. The Dr.'s were pleased with how little they were draining and gave the order to pull out the middle tube which is the biggest and most rigid/painful. In addition to that, they wanted to pull her arterial line, pacer wires (2 sets of long wires going through her abdomen to her heart in case she needed externally paced) and some bandages off. Teag was feeling really sick all morning but they wanted to get those lines/tubes out so we gave her a bit of versed and fentanyl (short acting 15min dose) and helped our sweet girl through some of the worst pain she's probably ever experienced... Everyone had told us that the chest tube removal is probably the worst part of heart surgery with older kids/adults and they were right. Seeing 4 inches of tubing pulled out of her and wires, large art. lines while she was awake and aware was horrible but we're praying that she'll feel better with a bit more freedom to move and also less pain from that center tube. She had me pray with her during the procedure and the nurses let us stand bedside and hold her hand while they stitched her tummy closed where the tube was. She is the toughest little girl I know and hopefully with the bit of versed she had, she won't remember those painful moments.

After that, she was really sick to her stomach again and also has a lot of congestion in her throat from being intubated two days in a row. Trent and I have not left her bedside all morning just helping her with everything. We have a good system when she feels sick with Trent fanning her with a plastic folder that has peppermint oil on it, then I get her a cold cloth and we pray with her and reassure her that she's ok. This combo really helps calm her and encourages her to sleep... She is still very oxygen dependent and when she takes off her mask, she de-sats into the 40s/50s pretty quickly. This is scary to watch as well and dangerous for her. The Dr.'s/nurses are going to help us get her sitting up and maybe even trying to walk later today so that her lungs can clear out and she can breath better.

If she can try and do those things, the plan is to move her out of the ICU by later this afternoon and into a regular hospital room on the floor. We don't anticipate leaving anytime soon, but this is one step closer to going home. Please pray for her poor tummy, breathing and pain. It's a delicate balance to help her drink/eat, not throw up and not be in too much pain. Baby steps for the next few days but moving in the right direction!

Here's T after her lines/tubes were pulled out. You can see her left and right chest tubes are still in place but there's a bandage where they removed and stitched the center one.

 Sweet girl praying that she won't throw up... She's so faithful and is comforted each time we pray with her. The beautiful part is that every time we pray (usually for no throwing up), she doesn't and is able to rest! We tell her that God is taking such good care of her- and he is! I can't wait for her to find some longer lasting relief and get some quality sleep.

Thursday- Waiting for surgery #2

Teag is hanging in there, being as tough as ever waiting for this afternoon's surgery. This will be her 10th heart surgery and 2nd in 24hrs... She had to go NPO this morning at 6am, but around 10 we found out that she wouldn't be taken down for surgery until 3pm so they let her have a few sips of 7up until 11am. She is sleeping now, but has struggled all morning with pain from surgery (which is treated with morphine bolusus) and being sick to her stomach from the meds they give her. She's taking Zofran and Ranitadine for her tummy but she still feels really really awful. We've been putting cool cloths on her and fanning her with a paper dotted with peppermint oil which seems to help the most. She also has some congestion in her throat from being intubated and she's having a really hard time trying to cough and feels like she's choking. :(

We had to tell her about today's surgery and she took the news pretty well. We focused on the bright spots like them taking out her central line in her neck (a major IV line that feeds almost all the way to her heart) while she's asleep. Normally she'd have to do this bedside while awake and its pretty painful. Her other IV in her arm has gone bad so they'll replace that during surgery too. Trent and I are pretty anxious about this procedure and met with the cath lab surgeon who will work on her today. He seemed very confident that he can enter in through her neck where her central line is and gently balloon open the bent stent. Best case scenario would be that he is able to enter that way, balloon it open and be done. He mentioned though that if it isn't responding to the balloon or if the stent has any cracks in it he may need to replace the stent by placing a new one over the old one. He also mentioned the possibility of having to access her heart through the artery in her groin which makes the procedure much more painful to recover from and requires yet another incision into her little body. Please pray with us that he's able to enter easily through her neck and balloon it open without complication! Here are a few pictures of the xray showing her stent before it was bent and how it currently looks. The bend doesn't look too significant on the xray but they are concerned enough about it obstructing blood flow that they want to fix it. Surgery is supposed to be around 3pm and I'm hoping Teag is able to rest until then.

 If you look closely at the xray below, you'll see a wire mesh stent hear the left of her sternum. This was before surgery when it was wide open.

 Here is the current xray from this morning. You can see the top right portion of the stent is slightly bent in. Again, it looks minor but this is the major artery allowing blood to drain from her upper body to her lungs so we need as much of a pathway as possible. You can also see the line going straight down into the top of the stent. This is that central line in her neck that will come out during the cath. She also now has wire twists holding her little sternum together. I'll update after surgery is complete.