Tuesday Update- Day 14

Things continue to slowly improve each day and we only have a few things left to check off before discharge! Teag still has her right chest tube which continues to drain just enough that the Dr.'s aren't quite comfortable taking it out yet. As soon as that happens, we'll just be watching her oxygen saturations and working on breathing/walking to get them into the upper 80s at a minimum. They told us that they'd like to see numbers that high or higher before we leave. We were hoping for numbers more in the 90s now that she's post op, but they're reassuring us that they will slowly climb over the next few months as she heals more and more... Her tube output was too high yesterday to take the tube out today, so we're hopeful for lower numbers in the next day or two so we can get rid of that thing! It continues to cause her a lot of pain because of where it's placed and how much it moves under her skin... Everyone is hoping that she'll take her first deep breath and get some relief when its gone!

Saturday night after my last update, the nurse removed more of Teag's bandages including the large bandage over her left chest tube site. The tube was removed last wed. so they wanted to get the big sticker off to look at her stitches. I knew there was an issue when the gauze didn't remove easily and we discovered that when her stitches were tied over the chest tube incision opening, that they got caught up in the gauze and knotted there instead of in her skin. So instead of a knot and small scar, she literally has a hole in her chest. Trent and I were really concerned because it had been like that for 5 days under there and the edges have already started to heal, so there's no chance of re-stitching it closed. We were worried about bacteria getting in there, or air leaking into her chest and causing a much bigger problem. The cardiac surgeon on call that night was busy doing a heart transplant but came to check on Teag around 11pm that night. He reassured us that this happens sometimes and that it will just leave a bigger scar, but won't hurt her in any way. He put a steri strip over the opening to try and pull it closed a bit more and we'll just have to watch it to see how it heals.

Sunday Teag had a hard morning, but felt great by the afternoon in time for a few visitors. We spent the afternoon trading in our movies in the playroom, eating 'non hospital' food and visiting until she was ready for an evening nap. We got news that afternoon about an opening at the Ronald McDonald House across the street, so Trent went over to check in and set the room up. Teag likes me to sleep here at the hospital with her so Trent will sleep at the RMD house and then I'll nap during the day when he gets back. We'll also stay there for 4 or 5 days once we're discharged so we can go back and forth to the hospital for post op appointments and xrays. We can't wait to have Teag and the boys all together with us there when we get out of here. There's so much for the kids to do there and we'll have our own hotel like room and private bathroom, which is so nice! My heart hurts not tucking the boys in now for the last 15 nights... They're in good hands with family, but I can't WAIT to have us all together again!

Monday brought another hard morning (5am xrays and labs, then an upset tummy and side pain) for Teag but she had afternoon visits from Gavin, Bode, Nana, Auntie and her cousins which brightened her day. We were able to all go to the playroom and Teag felt so good for an hour or two while they were here! It was fun to see them 'play' a bit together in the outside area- Trent wheeled Teag around in a wagon with all of her tubes/lines while the boys ran around with her. She came back to her room and took a 3 hour nap after that! We've had a few new roommates the last few days too which has made bed time/lights out interesting. Sometimes the lights don't go out on the other side of the curtain (like last night) until 1am which is hard for our sleepy girl..

Today (Tuesday) we all slept off and on until around 10am after our late night and early morning xrays/pain meds. We got Teag feeling good and up to play around 1 and then Grandma stopped by for a visit in the afternoon. Teag's pain seems a bit more manageable today and her oxygen levels are holding steady right around 78/80 without support which is a big improvement form the last few weeks! We still have a ways to go, but this is progress! Later this afternoon we were able to take Teag up to the 8th floor rooftop garden for a few minutes of sunshine which was so nice! It was a beautiful day here in Seattle! We did some walking tonight and Teag was able to eat a bit more, even some salad which made me happy. She hasn't eaten much fresh food in the last few weeks so this was also a big step! Tonight we're going to try and get a bit of sleep and hope our new roommate ( a 4 year old who's also post Fontan) is a good sleeper too! We'll know in the morning if Teag gets to have her chest tube removed. It depends on her output 6am-6am. Prayers that this happens would be great, and also prayers for the procedure which is the most painful part of this whole recovery. Teag has quite a bit of anxiety knowing it's coming, but will feel so much better when its out and over!

Sleepy girl...

 Here's a pic of the chest tube site that didn't stitch. You can see the middle one above her belly button was stitched closed properly but the one pictured on the right is just a hole with the loose stitch above it...

 Being silly at midnight the other night. It's hard to sleep when your roommate has all the lights on!

 Opening a super fun package from her CC classmates! So fun!

 Rooftop garden today. She could see Mt. Rainier and also the Space Needle!

 Wheeling her back to the room- sunshine makes her happy!

Saturday update- Day 11

Days go by here in the hospital slow and so fast at the same time. I look at the clock some days and it's 2pm and we're just able to get Teag out of bed or out of our tiny little room... The last few days have felt a bit like the movie 'Groundhog Day'- same characters, same setting and slightly different events... Nights are still sleepless with meds and vitals checks every 2-4 hours, and mornings are usually filled with pain for Teag until around noon when she feels up for a few visitors or a walk/ride in the wagon out of the room...

We did get some good news yesterday about her echo. The Dr.'s had been concerned about her heart function and connections they made during last week's surgery because her oxygen has remained so low without support and she's been struggling quite a bit. Everything on her echo looked great though and the surgery connections look fine- which is a relief! They're hoping that as Teag recovers a bit more, her chest tube can come out and she'll breathe better and raise her sats on her own... She still has her right chest tube and they don't want to pull it until she's eating full meals so they can make sure that the drainage won't pick up. Yesterday she ate more than she has in 10 days, and as a result her chest tube drainage increased quite a bit from the days before, so they want to wait a few more days at a minimum before they take it out. It is causing her massive pain which comes in waves, and usually when she moves or tries to walk. She can no longer ride the little tricycle because when she sits, it presses it up into her ribs more and is really painful. We're all hoping that when the tube finally comes out, that she'll have some relief and will take deeper breaths which will raise her oxygen. It's looking like we'll be here for a few more days to a week at a minimum...

Another bit of good news is that her digestive system is starting to work again. All of the meds they gave her over the last week decided to work Thursday/Friday and we spent most of those days helping her deal with the results of that. :(  She seems better today but still doesn't have much of an appetite after 10 days of not eating, so we're slowly working on getting more food in her a few bites at a time.

She has received a few fun packages and balloons from people and really loves getting mail! I'm not sure if we have an actual 'address' but it seems like any mail sent to the hospital and addressed in her name gets to her. We've had 2 more visits from grandma, nana and her brothers Gavin and Bode which she enjoyed, and also Nana Janie, Papa Gene, Reese and Hadley! Today was Grandma's birthday and we were able to give her our little gift and she brought us some homemade cheesecake, yum!

The plan for the next few days is just to keep her pain under control, get her moving as much as possible, eating as much as possible and using her lungs. After a few days of chest tube drainage getting less and less, they'll talk about removing it. After that, we'll just be waiting on her oxygen to improve before we're out of here! Progress is slow but moving forward bit by bit each day. I can't wait to get this sweet girl out of here and back home in her cozy bed!

Teag received a mega pack of bubble tape gum- yum!

 Having a rough morning... we usually try and let her sleep through the pain if she can.

 Having a good moment, and opening a little angel gift from Nana's church!

 Sleeping through more pain...

 Home sweet home, here's a look at our little hospital room. That little couch by the window is where Trent and I sleep at night, or I lay with Teag for a bit until she falls asleep.  We share it with another patient usually every other day for a few days.  They have the front half of the room near the door, separated by a small curtain. We've been lucky to have older roommates who only stay a night or two at a time and are usually quiet. The floor that we're on is cardiac and organ surgery so our roommates have had their spleens and gallbladders taken out. They're trying to pair us with short stay patients thankfully, and our roommate discharged today so we'll hopefully have a quiet night.

 We took Teag on a ride to the cafeteria yesterday to pick out an ice cream bar and some noodles. She loved getting out of our room and choosing some food for herself.

 This morning we washed and combed Teag's hair for the first time in 2 weeks... She can't get her chest or anything else wet, but they have a little salon chair/sink that worked perfectly. Combing her hair took about a half hour after all her bed head, but it looks so much better now!

 Child life at the hospital has been fantastic and Teag loves when Amie visits her to play. She brings games, talks to Teag about how she's feeling/what she's scared of and just hangs out and plays with her from time to time. I think Teag really enjoyed playing with someone else besides mom and dad for a bit!

 

Day 7... staying positive

I've started to update the blog many times over the past 3 days but Teag has needed a lot of help/care...Every free minute we have, we're taking turns getting food, showering or trying to squeeze in a few moments of sleep on our little bed/couch. Here's the update from yesterday and today!

Tuesday:
The last few days have again been filled with ups and downs. This recovery is proving to be very slow and steady, but we're thankful to be moving in the right direction! Teag has moments where she smiles and seems a bit like her old self, and then moments (or hours) of extreme pain, nausea and shakiness. We're in a holding pattern until her little digestive system starts moving and the nurses/Dr.'s have given her just about every med they can to help the process with little results. I'm  hoping for some relief for her before they want to take more drastic measures...

She still needs Oxycodone for pain every 8 hours or so and that's not helping the process...Sometimes her pain is bad before we reach the 8 hours and it takes 1-2 hours to get her meds, have them work and get her comfy. She still hasn't eaten much at all because her poor little body is so full from not going to the bathroom... but not eating makes her sick from her meds..

Teag's night nurse from the weekend decorated a wagon in full princess style to use as a reward for making one full lap around our hospital floor walking. This is a pretty good distance walk and a big goal for Teag to work towards! Tuesday morning after she ate a few bites and took her pain meds, we decided to go for it and she made it!! Teag asked Trent to wear her princess wig in the hallway as another prize for making the big walk. He's the best dad ever, and wore that wig proud all around our wagon ride through the many crowds of Dr.'s in the hallway doing morning rounds. Teag's smile was priceless!

Tuesday afternoon Teag had a visit from Gavin and Bode (her brothers) who came with Grandma and Nana to play for a bit. She didn't feel good at all when they arrived so they went to the playroom and we helped Teag through her pain until she felt good enough for a wagon ride to the playroom to join them. She spent about 15 minutes in her wagon in the playroom watching the boys play on the playground and picking out a few dvds and a board game to take back to her room! It was good for all the kids to be together again for the first time in a week. I cried holding Bode- it felt so good to love on him after he was so sick without me and gone longer than he's ever been from me. They're planning another visit on Thursday!

Tuesday night went fairly well except for a few hours around 11pm when Teag's pain got out of control for a bit. Trying to comfort her and stay as quiet as possible for our roommate one curtain away was tricky. Then she got a few hours of sleep from 12am-4am before we had to wheel her down for xrays...

Wednesday-
Today has been full of hard things for Teag to endure but nothing seems to break her sweet spirit. She asks us after something painful/hard passes if she 'did good' and if we're proud of her. We smile and tell her that she's the bravest girl we know! Seriously, she's had things done to her that I can't even imagine going through and she still smiles when it's over. Sweet girl...
The Dr.'s decided that another one of her chest tubes needed to come out today so that she can breath better and increase her oxygen sats. None of her tubes have really drained that much at all and she would have them all out except she's not eating enough yet for them to know if the output will increase. They also scheduled an enema for her (horrible) to help with her digestive issues from all the anesthesia and pain meds. This was a last resort after we've tried many many things this week and I was so sad for her... We started by giving her pain meds for the tube removal (oxycodone and a touch of versed) and then planned on doing the enema right after so she'd be in less pain. Around 2:30 her left chest tube was pulled bedside and again she suffers so sweetly. We held her while they did the procedure and she handled better than I would have. It's very painful but thankfully over quick and we were all glad to see another tube gone! Now she just has the tube on her right side. The nurse helped us with the next 'digestive' procedure shortly after and again Teag was a champ. We're praying for some relief in the next few hours from that.

After all of that was done, Teag had a few visitors that made her cheer right up! Her 'heart buddy' Maddie came with her mom and baby brother, and also another heart buddy's mom Jesse came to say hi. Visits really lift Teag's spirit and she was happy for some new faces and a change in our daily routine. We didn't have long to visit because Teag needed an echo to check heart function and an xray to make sure her chest tube removal didn't cause any issues/air pockets. We came back from that and Teag felt good enough to walk a lap around the hospital floor and ride the little tricycle 2 more laps after that! She's feeling much better having another tube out and we took advantage of the pain meds still working- squeezing in lots of movement.

Her oxygen sats are still very concerning now a week out from surgery and the Dr.'s would have liked to see her off of oxygen by now.. They came and spoke to us about some possibilities which include minor things like just needing to clear her digestive system so she can breath a bit better and major things like something wrong with her surgery connections, etc.. Hearing this is terrifying and we're really praying that the echo she had earlier looks normal. I can't bear the thought of more procedures/surgery for her. We'll know the results in the morning...

We're hoping for a restful night and at this point have no roommate! Fingers crossed for a quiet and pain free night! We are still optimistic and happy with how Teag is holding up. She's looking forward to more visitors tomorrow and a new day ahead. :)

Pics from the last few days:

Heading down to the playroom for the first time in her wagon to meet her brothers.

 How sweet is this brother/sister hug? They've missed each other so much!

 Here's our little champ moving much better yesterday after a bit of oxycodone. :)

 Here's Teag after she finally made the long walk around the hospital floor and finally got to sit in her princess wagon!

 A visit from her brothers brought a few smiles!

 Her ride to the playroom in the wagon!

 Made it to the playroom playground to find her brothers. Fresh air was good for everyone!

 Time with Grandma

 Bode and Nana chatting on our couch/bed..

 Trying out the tricycle! She loves being able to sit down and peddle around the halls!

 Getting tired from riding the long hall...

 A visit from Katie, Maddie and baby Luke.

 Mom and Teag with Luke, Maddie, Katie and Jesse!

 Sweet heart buddies!

 Child life brought Teag an ipad to play with loaded with really fun apps for being so brave! She's having a tea party with Elsa and Fuzzy on her Tea Party App!

Here's Dad fulfilling his end of the deal, wearing the princess wig in the hall for her hard work!

Sunday/Monday Days 5 & 6

Yesterday was another day of ups and downs, but definitely a few more good moments! We are trying to find a balance between controlling her pain but also not giving her too much oxycodone which makes other things like going to the bathroom hard...She is being so tough getting by on Tylenol, IB Profen and only using the Oxycodone when she's really hurting. The problem is that by the time she's really hurting, it takes a while for the nurse to order the med, get it from pharmacy and the allow it time to work. Yesterday morning she had severe pain on her right side... (like screaming, nausea, trouble breathing pain) I'm pretty sure it's a combination of surgery, chest tubes poking her and not going to the 'bathroom' since last Monday. The Oxycodone is so needed for these times of pain, but also continues the cycle of no digestive movement and more nausea.

We loaded her up with pain meds and let her sleep, which gave her a few hours of relief yesterday afternoon just in time for a few visitors. She really enjoys having family/friends stop by for a few minutes but is usually pretty worn out from the excitement. She got out of bed for the first time Saturday night and took a few steps! Then yesterday we tried to get her into the chair 3-4 times and walking a few steps 3-4 times. Walking requires oxygen tanks, iv management, chest tube boxes/lines, etc... so it's quite the production with 3 people helping her along. I can't imagine how painful it is to walk with those tubes going inches into her chest but she's being such a trooper!

We had a late night last night after an evening nap so we didn't settle in until midnight. She's still getting meds every 2 hours and vitals every 4 which makes sleeping for a long period of time really hard but we're working on it! This morning she had 5am xrays again which means a wheelchair ride from the 6th floor across the hospital to the 1st floor and then getting up and down and back in her chair. Then labs came in after to do her draw for rounds... We got her settled back to sleep around 8:30am and she's still sleeping now at almost 11!

Trent and I take turns sneaking out for a quick shower each day, and then for food when we can. It's so hard to leave her because her pain changes quickly and decisions are made with the nurses and Dr.'s at random times. I'm going to try and get outside for a few minutes sometime today for some fresh air- I haven't seen the sun since wed. and know it will be good for me. I can't wait to be able to wheel Teag outside for a few minutes soon. She's pretty tired of staring at our tiny half of the hospital room!

Our goals for today are to get Teag up and moving as much as possible, to get her to eat something (she hasn't eaten much of anything since pre-op on Tuesday but isn't hungry because she can't go to the bathroom), to help her go to the bathroom! (we're using essential oils, warm blankets, miralax and dulcosate to help things along- fingers crossed), and to control her pain especially on her right side without too many narcotics...There's no talk of removing her chest tubes yet because she really isn't eating much yet and is still draining. She's also still very oxygen dependent with sats dropping into the 60s still on room air. We've switched to 'blow by' to give her nose a break from the mask/cannula so we have to keep the tube aimed at her face at all times which is challenging during restless sleep but much better for her nose! We called the pink blanket wrapped blow by bag her 'air baby' and she thinks that's pretty funny!

Her first walk the other day- so painful!

 A visit from Nana yesterday brought a few smiles!

 Trying to use her lungs during a 'good moment'- chewing gum is one of her favorite things to do!

 Such a sweet moment last night! Her nurse asked if she wanted to listen to her new heart sounds. Now that her anatomy has been changed again, her heart sounds really different! Teag loved hearing her precious heartbeat (then listened to mine and daddy's too!)

 On a walk yesterday- getting stronger and going a few steps farther!

 Her fan club from yesterday- Uncle Cayle (wig), Nana, Uncle Justin, Mom and Dad. We made a deal that if she walked a certain distance then uncle Cayle had to wear the princess wig in the hallway!

 Each day is slowly getting better and better, I just didn't anticipate how hard (and painful) this recovery really would be for her- especially after the extra surgery. We are seeing little glimpses of our sweet girl's happy self each day and pray for more and more!

We are getting by entertaining ourselves with memes about hospital life. The other day when they talked about moving us to the floor from our fancy private ICU room, this is about how we felt. :)

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! :)