Tag Archives: recovery

by | March 16, 2016 · 10:28 am

Finding Joy in the Journey

Wow. It’s been a long time since we have posted. Thankfully that is because life is beginning to feel normal, well a new normal. We are busy living life rather than worried at what life is going to throw at us. Post transplant life has been interesting for us. 1. We have had to come to terms with the differences in this life, physically. We have labs, doctor visits, and lots of med changes. But also 2. We have had to find our new roles in the world. I want to explain a bit about these changes we’ve been going through.

Becks is doing awesome. His kidneys are bouncing back, his liver is HAPPY, and overall he is developing perfectly. But it has been a challenge. We have been doing weekly labs for 9 months. The poor kid is a pin cushion. He has handled it so well until he learned the word no. Now when he sees the needle, he says no and cries. It’s pretty heartbreaking. As you can imagine, it’s been interesting to fit labs into our weekly schedule. Some days Shawn just takes him, other times I do, but my favorite times are when we go as a whole family. We know all the lab techs and enjoy seeing them weekly. They all love Becks. We just got word that we can move his labs to monthly and it was such great news!!

Along with our weekly labs, we’ve been going to our liver doctor monthly. It was weekly, then every other week and now we’re finally to monthly. It was hard to drive up to Salt Lake so often but now that it’s monthly, it’s so much easier. It’s fun to see the faces of the nurses and doctors, who worked so closely with us, as they see how much B is growing and changing. It makes me so happy to see just how well he is doing.

Our biggest struggle has been getting all of his labs perfect. It seems like we get one under control and something else goes crazy. Initially it was his potassium and magnesium. Those have both resolved. We have constantly been trying to get his tacro (immunosuppression) in the right spot. We think we’ve figured that out. His main struggles now are high blood pressure, his CO2 level and anemia. He is on a lot of iron and it smells and tastes horrendous. His medication for his CO2 is basically baking soda. We mix it all in his chocolate milk and thankfully he takes it although just looking and smelling it, is enough to make me gag. Hopefully as we get closer to his one year mark, we can come off of more of these medications.

Right after transplant, we had feeding therapy to help him eat and get that stinking tube out. He did so well!! He also was doing so great on his own with sitting up, crawling, etc that I declined physical therapy. He didn’t need it! Now that he’s 19 months old we are noticing that he is behind with his speaking. He can communicate great with us and understands everything we are saying but he won’t babble, mimic or talk much. His main words are mama, no, yuck and uh oh. He has said other words but he says them for a day or two and then won’t say them anymore. He used to say dada, cheese, please, ada (addie) and nigh nigh. He just won’t say them anymore. So we made the choice to have speech therapy come in to help him stay on track. We are excited to see the progress he makes over the next few months. I’m hoping he does as well with speech as he did with his feeding therapy.IMG_1876

Even with all of these things going on, life has been pretty perfect. We are finding joy in simple things and really just loving being together as a family. We had a few scares earlier this year with a virus that wiped us all out for a month. It was bad for us all, not just Beckett, although he was the only one hospitalized for it. Twice. That has resolved and we know that it is just our life now. We know that when B gets sick, it is a greater chance that we will end up in the hospital.

As I mentioned earlier, our two main challenges have been getting used to the physical changes like I’ve already described and then the emotional challeges. The harder one for Shawn and I is finding our place. When Beckett was diagnosed, we became ‘that family’. We were put on display and were under a microscope, our lives out there for all the world to see. This helped us in many regards because people knew what we were going through and jumped in to help. But it also is a lonely and stressful place to be. We became Beckett’s parents. The mom and dad of a little boy needing a liver transplant. It defined us. It molded us and changed us. Now that B is doing so great, we aren’t on display as much. A lot of people in our neighborhood have moved and so less people know to what extent we were dealing with everything last year. And when the dust settled after transplant, Shawn and I both felt lost. Who are we? What is our purpose? We were an ordinary family again. I felt very lost. I was completely changed and couldn’t find where I fit with family, friends and neighbors. I felt like I couldn’t relate to people anymore. Conversations would happen and I felt like I couldn’t contribute because bringing up Becks would be a downer on the conversation. It was so odd. I’ve never experienced anything like that before. Relationships are altered, changed. We still don’t feel like we fit perfectly, but we are finding our way, finding our place again. We also don’t quite know what our purpose is yet, but we are focusing on us and I’m sure that will come. We want to make a difference, we want to help, we want to share. And one day, I hope to be able to look back and see that we did just that and that there was a place for us in this crazy thing we call life.

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by | November 7, 2014 · 3:57 pm

“I hate the roller coaster…”

IMG_6962 copyWe had started the formula feeding pretty soon after Beckett was drained Wednesday afternoon. The first time we tried feeding him, he only drank 1 oz. He did not like it. The next time he was starving and we made it pretty warm. He drank 4 oz. I was feeling optimistic. Then we decided to go to slow flow nipples so that in a month when we can go back to nursing, he will be more willing to nurse. After we made that change though, he would only drink an ounce at a time. I was not feeling optimistic.

Morning came. He still was only drinking an ounce every few hours and we were just waiting to figure out the game plan and hopefully get home later on. Dr. Book came in pretty much first thing in the morning and we started to discuss things. She felt Beckett’s tummy and wasn’t happy. It was already getting tight again. So she decided that we would proceed to get him drained again but this time we would leave the drain in and watch it. That meant we would be admitted for at least 3-4 days. Another disappointment. She also reemphasized to us that it was critical that he take the formula. If he didn’t then he would be put on a feeding tube. She did say though that if he will take the formula well, that I could have one nursing session a day.

After she finished speaking with us, it dawned on me. Addie’s birthday is on Sunday. We are celebrating on Saturday. And now we will be at the hospital. I broke down. Is this my life now? Will we be constantly missing important life events or rescheduling things? I needed to leave. I needed to breathe. I stepped out to make some phone calls to make arrangements for Addie and Raemee for the next couple days and to figure out what to do about Addie’s birthday. Thankfully, we are so blessed with wonderful friends and family who stepped in to help us take care of everything so we can balance our two lives. We can take care of Beckett and also make Addie’s birthday the day that she deserves.

While I was out, Dr. Book came back and spoke to Shawn. She was very frank with him and told him that she was fairly confident that Beckett would need a feeding tube based on everything so far. She wanted us to be prepared. When I found that out, I was so resolved to keep trying. I wanted to go back to the regular nipples to see if that made a difference. We had to have Beckett fast until he went for his procedure at 1:00pm to get drained again. So I just kept hoping that once we could start the feedings again, that he would do it. That morning was so long waiting for them to come get us. Finally at 1:30, they were ready for us. We headed back to the Jazz room and were told again what to expect. The only difference is this time we would leave the room with a drain out of his belly.

Once Becks was situated, we headed up to the room that we would call home for the next few days. We just hung out until the nurses came to get me to head down to get him. Another long wait even though in reality it was only 30 minutes or so. I walked with the nurses back down and saw my little warrior. He was pretty out of it. The doctors came to talk to me about everything. They said it went well. They drained another 400 mL. That’s 13.5 oz. I couldn’t believe it. They then showed me how to open and close the drain, signs to look for and then repeatedly told me to be super careful that we don’t pull the drain out. Each new conversation I have with doctors makes me more overwhelmed and scared and yet at the same time strangely empowered.

The nurses and I headed back upstairs and got him situated. We did his vitals and weighed him. When he was weighed initially Wednesday morning, he was 13 lbs 6 oz. When we weighed him Thursday after his second drain, he was 11 lbs 8 oz. Just by taking out that fluid he lost almost 2 lbs. But he looked amazing. After vitals were done, Dr. Marty came in. She is a resident with the GI team and she is awesome. She explains things so clearly and answers every question I have. She told me the game plan. We would watch the draining. They would empty his bag every couple hours and measure it. Because he is losing so much fluid, we have to replace it with protein rich fluid called Albumin. We also had to administer IVIG (immune Globulin) to make up for all that he was losing. We would also keep an eye on how much formula he would take. And we got the green light to start feeds again. I had them get us 2 oz. We warmed it up and put a regular nipple on. Beckett sucked it down so fast. We had them get another 2-3 oz. He drank that also. I was slightly optimistic that it was just a nipple issue and not the formula but he was starving so we would have to wait a few feeds to figure out whether or not it truly was that nipple issue.

We continued to feed him throughout the day and he still did great. He would consistently eat about 4 oz. I was pretty happy about how well he was accepting it. He didn’t seem to care about the taste. He cared a lot about the nipple and also the temperature. Later that evening, the GI doctors came around to talk to us. We met Dr. Jackson and Dr. Marty came in with him. He explained to us in great detail exactly how the liver works and just how biliary atresia affects everything. He helped us understand it in a way that was very visual and gave me a different and better view of what was going on inside our little man cub. He also had me feel for Beckett’s liver and spleen. It was fascinating having him tell me exactly what I was feeling for. Beck’s liver is HUGE!! It takes up most of his chest cavity.

We went to bed feeling fairly ok with the events of the day. We felt like we were moving in a good direction. We slept pretty well and woke up around 7 am Friday morning. Beckett did great all night, slept well and ate well. As we were getting ready for the day, the GI doctors cam around again. Dr. Jackson looked at the fluid and felt like it was looking pretty good so he wanted to consult with Dr. Book about how long to keep the drain in. I found out that Beckett had drained 400 more mL overnight. So much fluid!! But the amount coming out was at a much slower rate which was another reason he wanted to talk to Dr. Book.

He then asked me if I understood why we were giving him this special formula. I gave him what I thought was the reason and oops I was wrong. He then went on to clearly explain it to me. I thought the formula was a low fat, which was why he couldn’t have my breastmilk because it’s too fatty. But that’s not the case. It’s all about the type of fat. The type of fat in breastmilk goes through the lymphatic system. This is why he can’t nurse. Because his lymphatic system needs to heal. The kind of fat in this formula actually goes straight into the blood. It never goes through the lymphatic system. I felt so much more knowledgeable about exactly what was going on.

Later on in the morning, Dr. Book came in with her whole liver team. There was her nurse, Holly, the liver coordinator, Brook and the social worker, Barbie. It was awesome having our whole team with us to talk to us. Dr Book looked at Beckett and then started telling me how glad she was that we had the drain in so that he didn’t have to go in and be put under again to get that additional 400 mL out that had accumulated throughout the night. She also looked at the color and was really happy about it. It wasn’t milky anymore which means the fats weren’t in it! So we will need to get it retested at some point to be sure but that is looking good! She even suggested that we might take the drain out and treat the rest of the fluid build up with diuretics, which will help him just pee out the extra fluid. Then she asked about his feeding and was really happy with how he’s doing.

I started feeling like things were going to be ok! Finally a visit with doctors that wasn’t bearing bad news! I was feeling happy about things. I started thinking, “I can do this!” Beckett got hungry and so I pulled him out of bed by myself, wires and all. I fed him. He took in about 3.5 oz and then I burped him. He did great. He started looking sleepy so I put him down for a nap. Then he got this look in his eye and spit up a little. I helped him sit up and that’s when it happened. He started vomiting. Not just spit up. Full on vomiting. I was so scared and Shawn was working so I was alone. I ran out of the room to get a nurse but no one was there. I came back in to help clean him up and he threw up a couple more times. I ran back out and found a nurse to come to help me. His puke was curdled and gross.

So here I sit. Now I feel like I’m back to square one. Is he not tolerating the formula as well as we thought? Or was it a fluke? Will this keep us in the hospital longer? Will he need a feeding tube? I hate the roller coaster. I’m hoping as the afternoon passes that we will get some answers. That I can get some reassurance. It may have been a fleeting thought, but the “I got this” feeling was wonderful. I want it back.

 

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by | November 5, 2014 · 11:59 pm

Beckett’s “Simple” Follow Up

(null)The past two days have been hard. Really hard. I’ve been looking forward to and completely dreading Beckett’s follow up appointments. I wanted to know how he was really doing but at the same time I was terrified to know exactly what our future looked like. We had two appointments set up. 10:30 am with the surgeon, Dr. Scaife, and 1:40 pm with our liver doctor, Dr. Book.

Today arrived. I prayed really hard for peace. I just wanted to feel peace no matter what news we received. When I woke up, I was feeling pretty good. Apprehensive but good. We packed an overnight bag just in case, got the girls settled and packed the baby in the car. We drove up to Primary Children’s. As we started driving, it was silent. Too silent. So we turned on Taylor Swift’s new CD and jammed. It helped take my mind off of the day. But the closer we got to the hospital the more ill I felt. I was so nervous.

We headed up to general surgery and checked in. They then took us to get some labs done. Sweet Beckett was quite the charmer as the nurse prepped his foot to get pricked. He bled good for her and then we headed back to general surgery to meet with Dr. Scaife. As we waited in the room for him, we noticed a mural on the wall. There was a saying on it that if we looked closely we could see all the letter A to Z. We spent the next 15 minutes trying to find the letters. They may have designed that for kids but 1, it was hard and 2, it was a great distraction for us as parents.

Dr. Scaife walked in. “How are you guys?” We smiled. “You tell us.” We laid Beckett on the table and lifted up his shirt so Dr. Scaife could look at his belly. He told us that his belly looked distended and he wanted to send us to get an ultrasound to figure out what was going on since it could be several different things. We asked about his incision. He told us that it looked fabulous. No issues there. Perfect! The lab work still hadn’t come in so he told us we would have to wait until we saw Dr. Book. We headed out to the main room to see if we could get in for an ultrasound. I don’t know how we lucked out but we were sent straight down to radiology for the ultrasound!

When we got there, our tech, Brad, called us back. Now Brad was the same tech that did his initial ultrasound exactly 4 weeks ago today. It felt nice to have a familiar face. Brad is awesome. He asked us questions, did the ultrasound quickly and laughed at all of Shawn’s jokes. Shawn made some comment in regards to how much money the surgeon makes and it made Brad laugh so hard that it took him a good couple minutes to compose himself to continue. That’s one thing I’m so grateful for. Shawn knows how to keep things lighthearted even in the midst of massive stress. Laughing our way through all this crap makes it a little easier. As Brad was doing the ultrasound, he told us all the black on the screen was fluid. I’m no tech but even I could see that there was way way too much in there. I immediately started kicking myself. We’ve been measuring him everyday and the measurements didn’t change until the past day or two. So what was I doing wrong that he had that much fluid and we couldn’t see. I’m not cut out for this.

After the ultrasound was over, the head radiologist came in and talked to us about the results. He said that in his opinion there was a “large amount of fluid” and he thought that Dr. Book would most likely want it drained. In order to drain it, Beckett would need to fast for 6 hours. Well here it was noon and he hadn’t eaten since 9 am. So I figured our appointment with Dr. Book was in two hours. It wouldn’t hurt to hold him off in case she did want it drained. Then we would already be ahead of the game. We left and went to get some lunch before our next appointment.

After we ate, we just sat for a minute. It was hard to know what to say. We still felt clueless. All we knew was that his belly had tons of fluid, something could be massively wrong and we had no idea how well the surgery was working because the labs weren’t in. We decided to head up to Dr. Books office early just in case they could get us in. While we waited we looked over the valley and tried to sort through the limited information we had. Soon enough it was our turn.

We headed back to the room and before anything was done, they went and grabbed Dr. Book. The radiologist had seen her on her way over and told her about Beckett. At this point, our appointment turned sideways. Instead of talking with her about things, all the sudden she was there telling us that we were headed back down to radiology to get his belly drained, they were going to place an IV and we would need tons more blood work done. Then we would be sent to the RTU (Rapid Treatment Unit) to recover and wait for results. Most likely we would stay overnight.

Before we headed down we asked our liver nurse, Holly, a bunch of questions. She was great as we tried to process what was happening. I asked her about his bilirubin levels. Before his surgery his levels were at 8.4, now three weeks later they were at 7.4. I’m not a doctor but that difference doesn’t seem that great. Dr. Book came back in and got us moving since radiology was waiting for us.

Back down to radiology. We went into a little procedure room and that’s where we met the doctor who would be performing the draining procedure. It’s also where Beckett got his IV. The nurses came in to do the IV and went straight for his head. They didn’t even try in his hands or feet. He screamed bloody murder and I sobbed in the hallway.

IMG_6945[6]After the stupid IV, they took us into this big room, the Jazz room. There are pictures of all the Jazz players, signed sports memorabilia and the ceiling tiles have all the signatures of all the players, past and present. It was pretty awesome. They got Beckett situated and then took us to a waiting room. Through all this I hadn’t been able to feed Beckett. But I had no idea that this was going to happen so even though we were prepared with overnight bags, I did not bring my pump. No big deal I thought, I’ll just use the hospital stuff. Nope. In looking into it, because what we were doing was an outpatient procedure and we would not be admitted even though we were staying overnight, it would cost $100 to use the hospitals stuff. Yeah, not happening. So I dealt with the pain until I could feed Beckett again.

The draining itself was actually super fast. Like 20 minutes and they were back to get us. They said that they drained 460 mL from his belly which equates to about 15.5 oz. and there was more in his tummy. He was awake and they said he did awesome. He never cried, just hung out. He was looking around and was calm until he saw me. Then he started screaming bloody murder. The Dr. said I could feed him since he was doing so great so we walked to the RTU and got into our room and I started to nurse him. Oh how quickly he calmed down. We just let him rest and hang out and had to put a sock over his hand so that he wouldn’t pull the IV out from his head. Then we waited.

After a couple hours, Dr. Book came in to talk to us about everything. She said that the fluid they took out of Beckett was milky. They tested it and determined that during his surgery his lymphatic system was damaged. There is fat from his food leaking through the lymphatic vessels. Then she proceeded to tell me that in order to fix the problem, I can’t nurse him anymore because breast milk is super fatty. He needs to be on a special formula. And if he won’t take the formula then they will put him on a feeding tube until his lymphatic system is healed. I am devastated. She said that its temporary, maybe 3-4 weeks but that’s a hard pill to swallow. That your milk is actually causing the damage to your baby. That the comfort and bonding that your baby enjoys can’t happen anymore. Pumping and saving my milk to hopefully nurse him in a month is the only solution. That was hard to hear.

She then felt his belly and said his spleen was enlarged. This could be from the pressure of his liver and the fluid. Not a great sign. I asked her where they want the bilirubin levels to be and she said under a 4. We’re at a 7.4. So that’s not super optimistic. She said she was going to keep an extra close eye on him. She then told us we would be staying overnight to get the rest of the fluid drained and to make sure he was taking the formula. And that we would be back next week for follow ups. She encouraged us, told us we would get things under control and that he would be ok, whatever course that may be.

IMG_6950I love Dr. Book. She never skirts around the issues but she is a glass half full person. She already cares about us and will do everything in her power to help Becks. I hate this situation. I’m not handling it well. But she gives me courage. I know Becks is being taken care of. And for that I am and forever will be eternally grateful.

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by | October 18, 2014 · 8:00 pm

Kasai Recovery – Day 5 Finally Home

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We woke up around 6 am again. This time though it was from the worst sleep ever. Because I could nurse, Beckett woke up every couple hours. He wasn’t terribly satisfied with only nursing for 15 minutes and then it would take us a good 45 minutes after nursing to get him back to sleep. It was miserable. Once we were up and going, I started to feel a little better. We changed his diaper and noticed that it was still green (yay!) but there was also some white in it (bad!). White means the liver isn’t working. I decided to talk with the surgical team when they did their rounds.

Shawn went to go shower and while he was gone Dr. Scaife came to see how we were doing. He had a couple of colleagues with him. He asked if we wanted to go home and I said we did, if Beckett was ready. He asked how he was doing. I told him that I thought he was doing well. He was happy, managing pain well, and peeing and pooping great. But I then told him about my concern with the green poop that had some white in it. He said, “His poop is green?” I nodded. He then looked to his colleagues and got this look on his face of slight excitement. “Well that’s encouraging!” Then he fist bumped me. Yep. A man of few words who makes more money in a week than I do in a year fist bumped me. It was pretty awesome.

We got everything ready, got our discharge papers and packed our stuff to get ready to leave. We spoke with our nurse before we left. We had Tammy again and it was so great. She knew us and knew Becks. She also was wonderful because she would talk to us. She would be frank and didn’t sugar coat anything but the way she talked to us wasn’t depressing. She told us to always have an overnight bag packed when we have appointments because a lot of times, they do the labs and then the numbers don’t look great so they admit them to the hospital. She also told us exactly what to look for and keep track of and when to call the doctor. I felt so much better after talking to her. I felt like I could possibly handle things once we got home. She told me to trust myself. This was hard for me because I feel like I completely missed the fact that Beckett was so yellow. Or at least I ignored it for awhile. I didn’t want to think anything was wrong. And now I’m paranoid that I’ll miss something else. She was very encouraging. She got me back into a good place and we grabbed our belongings and packed him up and left for home.

And now we wait. We wait for a few weeks to find out if the surgery even worked. We wait to see if his poops stay good colors. We wait for the day that his labs come back horrible and we move to a transplant. We wait. Waiting. I’ve never been good at waiting. But for now I have no choice. So I will enjoy the wait. I will enjoy the good moments while waiting. And I’ll pray that we will be waiting a really long time.

Written by: Kimber

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by | October 17, 2014 · 8:00 pm

Kasai Recovery – Day 4

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The next morning, after the surgery team talked with our nurse, they gave the go ahead to just start breastfeeding. I was shocked. I thought that we would slowly move up the ounces in a bottle before they let me nurse him. But I was so happy! So we tried. After 3 days of not nursing, it took him a minute to get the hang of it but once he did, you could tell he was so happy. He nursed for about 10-15 minutes and then was done. I made sure he burped and then we just watched him for the next couple hours. He was happier. I was so glad he had a full belly. Since he did so great, they were talking about sending us home.

 The next feed came. I fed him for 10-15 minutes and when we were done, he was still acting so hungry. So I let him nurse for another 5ish minutes. He finished, I burped him and we laid him in bed and were talking to our nurse about our fears of going home when all the sudden, he started puking! He vomited at least 2-3 oz. It was insane. And terrifying. I literally was shaking. Well after that, our nurse informed us that we would no longer be going home. I was sad and at the same time relieved that we had one more day with the doctors and nurses checking on him.

 So we bathed this sweet boy, got him cleaned up and decided to only feed him for 10-15 minutes and make sure he was thoroughly burped. We did that for the rest of the day and into the night and he did awesome. Did some normal spits but no more puking! I figured I would just up his feeds a minute at a time over the next couple days.

Throughout the day, he continued to poop great. Sometimes we were a bit nervous about the color, yes, I’m obsessive, but most of the time we were just thrilled. And this day was awesome because he was happy and talkative. Oh how I love to hear his coos. He talks way more than the girls did and I just eat it up!!

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by | October 16, 2014 · 8:00 pm

Kasai Recovery – Day 3

Beckett Oliver

Because Beckett wasn’t eating, we were actually able to sleep really well at night. He was so sleepy and would only wake up when the nurses came in to check his vitals. Then they would put him back to sleep. So even though Shawn and I were crammed on this tiny little couch we slept pretty good. After we woke up (around 6 am again!), I pumped and we got ready for the day. We met our nurse Tammy and she was amazing!! So fun and willing to help us with whatever we needed. We decided to give Beckett a bath because he was starting to smell like hospital. It was a little frustrating because he couldn’t have much water due to his incision and he couldn’t relax because we had to hold a hand and a foot out of the water due to his IVs. But even with all that, oh how he smelled so good after that bath.

He was finally looking and acting more like himself and the BEST part was that he gave us some smiles!! I had been saying all week that I needed to see him smiling because that’s who he is. He is our smiley, lovey boy. I can’t even express the emotion I felt when he kept smiling and cooing at us! We knew he was feeling better, incision, wires, IV’s and all.

He also continued to poop throughout the day. It was such a relief to know that his organs were starting to work again. I’ve never been so obsessed with poop in my life. Every diaper change we would inspect the diaper before the nurses would weigh them. We just kept tabs on color, and consistency (TMI, I know). And it looks like that is something that I’ll be doing for the next few years.

IMG_6680Because he was pooping, we got the green light to start feeding him. He was allowed 1/2 oz of pedialyte every 3 hours. He hadn’t eaten in 3 whole days but I just had a feeling that he would not be happy that he could only have 1/2 oz. It was important though, to know that he could keep it down and that it could make it through his entire system. So we did that for a few feeds and then we upped it to 1 oz because he was tolerating it well. Then we had shift change. Once it was time for the next feed, I talked with my nurse and she said, “Ok I’ll go get the 1 oz of breastmilk ready.” I said, “Are we done with the pedialyte?” She looked back at the orders and told us that it never said to do pedialyte. The orders were always for 1 oz of breastmilk. Turns out when our day nurse, Tammy, had received the ORAL orders she was told to start with 1/2 of pedialyte. But the WRITTEN orders said 1 oz of breastmilk. Poor Tammy felt so bad about the mix up but it was no big deal. We were just excited that he could have breastmilk. I was praying he would tolerate it ok. We tried that night and he did great.

Written by: Kimber

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by | October 15, 2014 · 8:00 pm

Kasai Recovery – Day 2

IMG_3169We were able to get a room at the Ronald McDonald Room here at Primary Children’s. That was so wonderful. They have queen size temperpedic beds. We slept so great but again we were up around 6 and just couldn’t go back to sleep. We showered, got ready and headed back to see the little man. When we saw him, he looked so much less swollen already! We were excited. He proceeded to pee so much throughout the day. And the difference in how swollen he looked was very obvious. We kept listening for bowel sounds and the day started with none. But by afternoon, our nurse said she could hear his bowels starting to work! We were so excited. Then came the insane amount of prayers for poop.

As we were sitting in our room, trying to stay sane with the craziness and boredom, we saw a familiar face. Shawn’s sister came by to visit us. She was so great. She helped keep our minds off of everything. While she was here, a social worker stopped by to talk to us. We weren’t opening up much but Shawn’s sister helped us start to be more honest with how we were really holding up. Pretty soon Shawn and I were both in tears. It’s really hard to be in the hospital day after day. You try to be strong so you can handle everything that the nurses and doctors are sending your way but all you want to do is cry and have someone else handle it. I just don’t feel like an adult. I kept thinking someone else would take care of it for me. Then you start building walls and becoming numb to your emotions to protect yourself. The social worker helped us break some of those walls down although they are building back up again.

I think this was one of the hardest days emotionally. While Beckett was doing so great, I was realizing that I was not. I was having a hard time processing everything. And trying to gather as much information as possible while not freaking out about everything. Knowing what our next 50 steps are but only worrying about the next step. It’s such a hard balance and will be something I have to work on for the rest of my life.

While we were talking to the social worker, Beckett started passing gas. He was acting a little uncomfortable and the gas just kept coming. Pretty soon we heard him poop! Oh man, we were elated. We were so excited about the poop that we came up with the idea to make a POO ghost. Around this time, the Child Life Specialist dropped by to check on us and so she was able to grab us some supplies to make our idea a reality. After we had made the poo ghost, we came up with Poo Points. We wrote down the names of the nurses, techs etc that helped us out. They could earn poo points for things like taking care of Becks, talking to us, answering questions or just doing something cool for us. We had so many staff at Primary’s who thought this was hilarious. Some even took pictures. And I will say that it created quite the contest between the nurses. It was a great way to laugh and take our mind off of everything that was going on.

Written by: Kimber

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by | October 14, 2014 · 8:00 pm

Kasai Recovery – Day 1

IMG_6638The night after surgery we were able to get a parents room right next to the PICU (Pediatric Intensive Care Unit). It was a small double bed but it was a private room away from the beeping and constant visit of the nurses. We slept really well considering. Around 5:30 am we were woken up by a Code Blue. My heart leapt into my chest. Once we heard the room number and realized it was not Beckett, we were so relieved, yet our hearts sunk knowing what was happening. Sleep did not return. We got up. I pumped (which I’ve become a pro at this week) and we got dressed and headed over to the PICU to check on our baby.

He was so puffy and completely out of it. He had a hard time focusing. It was so hard to see him like that. We asked how he did and they said he did amazing. For pain relief, he was allowed to have a dose of morphine every 2 hours. Over the past 12 hours, he had only needed 2 doses. That was amazing! Right after surgery and he barely needed anything. The nurses were telling us about how some of these Kasai babies come in with a constant morphine drip and he barely needed any. As we were in there with him we noticed that he was sucking on his tongue for comfort. He wouldn’t take the bink and he couldn’t eat but man he could suck on that tongue like crazy.

Because he was doing so great, we were actually released from the PICU around 10:30 that morning. That was awesome to be able to move up into a regular room where we had more privacy and we could actually stay in the room easier with him. This was a hard day. He just progressively got more swollen as he had the IV fluids pumped into him. His skin started getting tight and his mouth and tongue were so dry. We had to keep wetting his lips with water and applying chapstick to help with that. He was just not himself. Very sleepy and very cranky. The doctors mentioned that an important next step was for Beckett’s bowels to wake up (sounds, passing gas, bowel movement etc). The nurses continued doing vitals throughout the day and every time they would tell us that there still were no bowel sounds. That was hard to hear. I knew it would take time but they just weren’t waking up and I had this fear that they wouldn’t ever wake up. That evening we wanted to hold him again. He had been sleeping most the day so we didn’t want to bother him but finally we just wanted him. To hold and snuggle him. So we had the nurse help us and Shawn sat in the chair. He got situated and then the nurse laid Beckett in his arms. Beckett started to scream. He just screamed and cried and after 5-10 minutes of trying to console him with no luck, we put him back in bed. He stopped crying. That was so hard. Looking at Shawn’s face, seeing that feeling of rejection. Oh how it hurt. We knew he didn’t feel good but it didn’t make it any easier to not be able to hold and love on your two month old baby.

Written by: Kimber

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