Lauren dropped Remi off at school and I took Parker from her and let Alissa go play with Livi some more before school because I wasn't really willing to put up a fight. I was teetering on the edge of loosing it. So Parker and I headed to the store to get some basic groceries. I knew we needed food and I needed to still be a Mom, but I really just wanted to be back at the hospital with Broden. We got to the commissary and Kelsi was screaming and Parker was crying and I was about to break down in tears. A lady asked if I was ok and I lied telling her I was. She helped me get a cart and walked away and the tears came. I turned around and there was a friend from volleyball. I dried my tears because I didn't want him to see me crying. He was very kind and concerned about Broden and making sure we had what we needed. When I finished talking to him there was another friend from our ward there to talk and comfort me some more. Parker and Kelsi were calmed down now too, so we continued our shopping trip, still kind of in a haze.
After shopping we finally got to talk to Blake. He said Broden woke up and was doing really well. They said they would probably move him to a children's unit because he was doing so well. PICU was more for unconscious patients, so Broden seemed very healthy compared to the other babies there. That sounded great! He wasn't hungry anymore either, just thirsty. He wasn't allowed to drink though. Just a tiny sip every couple hours. So sad. But he was awake and seemed to be doing well.
So, I picked Alissa up at Ingersolls, and took her to school. Whitney, another friend from the ward was a lifesaver, again, (her and her husband cleaned the house for us) and came to our house to watch Parker and be there to get the other kids from school and be with them until Blake came home. I gathered anything I could think of that we might need at the hospital and headed up there.
Blake sent me a text saying they already moved Broden into the regular ward! That's great. I got there and It was so good to see Broden alert. He was getting a little bored though, in his awake time. He couldn't really move. He could lift his arms a little, but that was a struggle for him. So we talked to him, I told him about school, funny things that Parker had said, about all his teachers who were concerned about him and all the people who were praying for him. We would play a game where he would make a little mark on our little dry erase board and I would turn it into a picture. Sometimes he would fall asleep while I drew pictures. Or he would ask me to sing to him so he could fall asleep. Whitney had gotten him a monkey at the store and he would cuddle it while I sang to him and seemed comforted. Sometimes in his sleep he would jump. It was like he was remembering what happened and it would wake him up. Then he would want to push his button and go back to sleep.
The weather outside was beautiful, so we had the nurses help us wheel him, his bed, and IV stand outside to their garden/play area. They had a giant connect 4 game. Blake and I played eachother, then Broden played Blake. He couldn't get out of bed, or even sit up, so he would just tell me where to drop the pieces. After a while Broden started to get tired. Kelsi was asleep in her stroller, Blake fell asleep on the grass, so I climbed in Broden's bed next to him and sang to him until he fell asleep and then I fell asleep. We woke up when some visitors came. The Hartvigsens came to visit Broden and brought cards and legos for him. It was fun to see how happy Broden was when his got visitors. He did get tired fast though, so they didn't stay too long. It was so nice for Broden to see friends and know people were thinking of him and praying for him.
I stayed that night in the hospital with Broden and Blake went home to sleep. It was a long night with Kelsi waking up and Broden waking up. He would need his button pushed, or need to go to the bathroom, or the alarms on the IV pumps would go off, or 1 of the babies in the room would start crying. (He was in a room with 3 beds in it, divided by curtains, the other 2 beds had babies in them). When he needed to go to the bathroom we would just do it in a bottle thing in the bed. The first time I tried helping him I did something "wrong" and it hurt him really bad. He cried and hit my hand away from him. I felt so bad that he was in that much pain. I was just pulling his gown up and it caused so much pain. It took me a few tries, but I finally figured out how to do it without causing so much pain. He would go pee into a little bottle thing. Then the nurses would take it and measure it.
The next few days were spent trying to keep Broden comfortable and entertaining him. He could sit up a little more on Friday, but couldn't put anything on his tummy to color, read, play on the IPAD, or sit up enough to play games or use a table. The doctors said he was doing well, but did talk about the risk of getting an pneumonia because after a surgery like that kids don't breath very deep because it might hurt them. So they don't clear the fluid out of their lungs and could get a pneumonia. So when the Physical Therapist came the first time on Friday he helped us get Broden sitting up in a chair. Very painful and uncomfortable for him. Then he taught us some different things to get Broden to breath deeper. He had an oxygen monitor on and his oxygen kept dropping below 90, so they would put him on oxygen for a while. I would try to remind him to take deep breaths if the monitor didn't say 100 on it. But the therapist made it more fun! He got a bottle with water in it and some soap and set it in a bowl. Then he gave Broden a long hose that went into the bottle of soapy water. Broden would then blow bubbles. His goal was to blow so many bubbles they would overflow into the bowl. It took him about 15 minutes, but he did it! It was very hard for him to blow that much. Another game we could play with him was to fold up pieces of paper and have races blowing them off a table.
Over the weekend Broden improved a little. He would get into his chair 1 or 2 times a day for about half an hour. His fluids coming out his nose, from his stomach was a little less, and a little lighter on Monday, which were good signs. The bile from the intestine was coming up instead of going down, which was what was causing the dark green color. We wanted it to turn light and not be so much. They were sucking out the drain in his nose every 3 hours and getting a couple hundred ml of bile and fluid. Sunday morning it was dark green and lots of it.
We also brought the other kids to visit over the weekend. First Parker and Alissa and he was so happy to see them and they were so happy to see Broden. The happiness didn't last long though. He was too nervous having them close to him. With IV's in his arms and a huge cut on his tummy he was too worried they would hurt him. So their visit was short. Remi got to visit after school on Friday for a while and again on Sunday after church. He liked visiting with her because she understood not to touch him, not to move the bed, or touch his IV's. He was still sleeping a lot though, so visits with visitors were short. Happy for Broden, but short.
During the week we worked out a schedule. Blake would stay the night in the hospital, then I would come up after I got the kids up and ready for school. I would drop Parker off with Hartvigsen's and go to the hospital and trade him. He would come back and either run errands or get Parker and go home and get things done around the house and maybe sleep some if he was lucky. After school he would get Remi and Alissa, play with them, do homework, dinner and bed time. Then random, amazing people would come to our house at 8:30pm so Blake could drive back to the hospital and trade me. We would trade shifts and tell eachother all the info about our "shift". Then it would all start again.
Tuesday Marked a week with no foods and they were still pulling out too much bile and fluids from his nose drain, so a PIC line might be a possibility to give him more nutrients. Then a little bit later a doctor came down and had me sign paperwork for a PIC line. He had no manners. He just said I need you to sing these papers so we can do a pic line. No intro, or anything. So, my reply was, they are going to do a pic line? They said they might, but I thought someone would actually talk to us instead of just asking for our signatures. This was the only doctor I had a problem with the whole time. The rest of them were very good at explaining everything and answering any questions. Very good bedside manners. I signed the papers, which was scary without having Blake there with me. To do a Pic line they would have to put him under again and thread a tube up a vain in his arm to a major vein near his heart to put the nutrients through. They would have to intubate him too for the surgery.
This whole day Broden was so down. He was very discouraged about everything. He didn't want to try sitting up or walking, or getting in a chair because everything hurt. He didn't want anyone to poke him anymore either. He was just done.
They took him upstairs at about 4:30 and let me come with him. A nursing assistant was very helpful and watched Kelsi because she wasn't allowed in. So they got him all ready and gave him the medicine. The plan was to put in the PIC line, change the tube in his nose to a smaller one and change out his IV so none of this had to be done while he was awake. He was tired of being poked. By this time he had had 3 IV's fail and had to have blood drawn daily. For some reason the nurses couldn't get blood out of him. I'm pretty sure one of them even tried getting it out of a tendon in his food. Poor boy. His least favorite though was when they tried getting enough blood out of a cut on his finger, the kind they do to new born babies to do their blood work. He complained about that one until the day he got out of the hospital and always made sure if anyone was taking blood they weren't going to cut his finger.
When he got out of surgery at 6:00 I got to go to the recovery room to be with him. The surgery had gone well. He had his Pic line which was great, but they had put his IV in his foot, right in the vein that runs over your ankle bone. Of all the veins I'm not sure why they chose that one. Especially since the physical therapist wanted him walking. He did get a new smaller tube in his nose though, which would be less irritable for him.( hopefully he would leave this one in. He had pulled the other one out one night I think in his sleep) Broden was sleeping, but not very restfully. He was very agitated and not quite with it yet, and in pain. It was sad to see him like that again. Eventually he woke up a little more and needed to go to the bathroom. Then he fell back asleep more peacefully this time. While he was sleeping the surgeon came in who had done his big surgery. He talked to me for quite a while about what to expect now and in the future. He basically said he likes his patients who get this surgery to go home 7-10 days from surgery, which was the coming weekend. When they go home they may still have some pain, but they need to be eating and drinking and getting enough nutrients without a pic line. After the discouraging day we had I had a hard time seeing that weekend as a reality of going home. It would be great, but I was discouraged.
We moved Broden back downstairs as soon as he was stable. He slept peacefully for quite a while. Then they came in and hooked up his new bags of "food." His TPN was a special formula of lipids and electrolytes to provide the nutrition he needed to get better. When Blake got there we traded info and I left feeling kinda down. I came home to a clean house and folded laundry, another "angel" had folded our laundry.
The next day when I got to the hospital I was so pleasantly surprised!! Broden had all kinds of energy and was feeling so much better. He was up and walking around and ready to play games. He really got better overnight! So, the rest of the week was spend playing snakes and ladders, watching movies, playing games on the ipad, coloring, drawing, legos, and other games they had in the hospital play room. Thursday he was finally allowed 10ml of fluid an hour, or 30 every 3. This is about 1/4 a cup of fluid in 3 hours. He was really excited about that! Friday afternoon they extended it to 20 ml an hour, then that night they said how ever many clear fluids he wanted!
Friday night we decided he was feeling well enough to bring all the kids up again. They were all ready for some family time. So we tried what a friend had suggested when she had a child in the hospital for 6 weeks. We had a movie night at the hospital. We sat in the play room and watched the new Charlie and the Chocolate Factory and enjoyed popsicles with Broden.
Saturday they were still pulling out fluid from his nose tube, but the doctor felt like things were going down where they were supposed to, so he said Broden could eat whatever and if he didn't get an upset stomach we would shoot for being released on Sunday! Good news!
So Saturday I took up a bunch of different foods I knew he would like. We weren't sure if he would like the hospital food. So I took Jello, Mac and cheese, pudding, peas and cheese sticks. They wanted him to eat as much as he could, to make sure his tummy was ok and also to start getting him nutrition from real food instead of the TPN. He did great and didn't get sick at all. They removed his nose tube and his drain from his abdominal cavity that afternoon! The one in his side was crazy. It was hanging out of his side about 3 inches. When they pulled it out there were about 10 inches more inside of him. Just a white rubber hose about a cm. across. The tube in his nose he pulled out himself. It was pretty crazy watching him.
Sunday was Alissa's birthday, but we both felt like we should be at the hospital when they released Broden. So we decided to have the other kids stay the night with friends so I could be at the hospital first thing in the morning. Alissa got to stay with Ingersoll's with Livi, her very best friend. We were so grateful that they made her birthday morning special. Remi and Parker stayed with Hatch's and we invited them all to our house for cake and ice cream at 6:30.
When I got to the hospital Sunday morning the surgeon made his rounds and said everything looks good. We should be able to go this afternoon. He did all his paperwork and we got all our stuff packed. Then the nurse informed us it wouldn't be until 6 that we could leave. They would need to slow down the TPN, then stop it and see how his blood sugars did on just food, no TPN. Bummer. We only had 1 car at the hospital and didn't want to delay Alissa's bday party because she was so excited for it and had already had a hard couple weeks. So We thought and thought about how to get Blake from the hospital to our house. Luckily one of the people he works with was in Cambridge for the day, so he rode home with them!
At about noon they took him to a treatment room and removed the IV from his hand(They had changed it on Thursday to his hand instead of foot) and removed the PIC line and steri strips from the incision. YAY!!! I think Broden ran out of that room so excited to be free of any more connections. All he had were bandaids!!!
At 2:00pm they tested his blood sugars and again at 6:00 pm and both times they were great! So we said bye to all our nurses and the staff that took such good care of Broden and headed home. We got home at 7:15, just in time to enjoy a fun birthday party with family and friends.
Alissa was so excited Broden came home on her birthday. She still says thank you for that in her prayers. It is so cute.
At the hospital Broden looked so healthy and energetic. When we got home though, we realized that he is still pretty sickly. He lost a lot of weight and still doesn't have lots of energy. The ride home kids wiped him out. He was good at staying inside his own limits though. He went upstairs with friends then after a while Blake carried him back down the stairs and he just kinda watched everyone play after that. Monday, Tuesday and Wednesday we just took it easy at home and went to the doctor on base just to check in. The surgeon looked at the abdominal drain site and said it looks great. It is still like an open wound, but we just keep a bandaid on it.
Thursday he started school half day and did great! He came home and we ate lunch and ice cream(He has this about 2 times a day along with anything else fattening we can get in him), then we went to take naps. He stayed in bed for about half an hour and never fell asleep. So, his energy must be picking up! Next week we will start full days of school and see how he does. I kinda just want to keep him here with me where I can keep an eye on him and protect him all day every day, but I guess we will try getting things back to normal.
I have been so amazed with Broden through this whole ordeal. He has been so patient and had such a good sense of humor through all of it. We actually had some good bonding time in the hospital. We have been through a lot, but we are so grateful for so many things! I'll do a separate post about that.
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