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My Mom's Journal About My Surgery

Photo Disclaimer:

This links to recovery photos from Ben's surgery. We found that, by looking at some photos beforehand, we were better prepared for Ben's surgery and recovery. We are thankful to other parents who had been there and were willing to share their photos with us through the Internet. If you have come here to learn about open heart surgery or are interested in seeing what the recovery is like, feel free to view them.

May 22, 2002 - Wednesday

This morning we loaded up the car and headed for the airport. This was our first family flight. I nursed Ben right before boarding the airplane in Knoxville and he slept all the way to Cincinnati. On the way to board the airplane to Detroit Ben got fussy and hungry. I nursed him before take-off and he slept most of the way to Detroit. After picking up our bags and renting a car we headed for the University of Michigan Health System in Ann Arbor (about a 20 minute drive). Overall the day was pretty uneventful. Brad and I were both pleased at how wonderful Ben acted. Neither Brad nor I wanted to leave Knoxville. Ben’s upcoming surgery had us both stressed and nervous but we knew we had to do what was best for Ben.

May 23, 2002 - Thursday

Our day started early and was supposed to end late. Ben was able to nurse until 5am. At 8am we went to the radiology department for a chest x-ray. This x-ray was unlike any I had seen or prepared for. He was strapped to the wall. He was sitting on this little plastic thing and had a strap around his head that went under his chin. Each arm was strapped to the side of his head. His waist and legs were strapped down. I had to leave the room because as soon as they started to put him on the wall he screamed and my eyes immediately filled with tears.

After the x-ray we went to cardiology where he was sedated for his echo and EKG. Since Ben was sound asleep Brad and I went to get breakfast while he had his echo. When we got back they were just finishing up and about to do his EKG.

Next we were off to another exam room where we met with Dr. David Parra, the cardiology fellow (a cardiologist in training). He examined Ben. It seemed to be a typical exam similar to being at Dr. Liske’s office.

Next, Dr. Caren Goldberg came in and examined Ben. She agreed with Dr. Parra’s exam results and basically repeated everything he told us. She said that she would be seeing Ben ever[1]My day after he came out of ICU. A specialized cardiologist would be seeing Ben as long as he was in ICU.

Off to the blood drawing center for blood work. They took 3 tubes of blood from Ben’s arm and gave us a blue paper that we had to bring at check-in for surgery.

One more stop... pre-op waiting to meet with a surgery nurse and a nurse from anesthesia. The nurse from surgery, Louise, was great. She said she would be giving us updates throughout the surgery. It should probably take about 4 hours. We asked about the surgery’s success rate at the Univeristy of Michigan and she told us that a child had not died from this surgical procedure in over 10 years. This was very reassuring to me. The nurse from anesthesia was nice but she didn’t do cardiac cases and didn’t say too much about the surgery. She did tell us that he should only have lasix, captopril and prilosec in the morning. She also asked someone if I could stay with Ben until he was put to sleep and “they” said no.

We tried to take a tour of the 5th floor (ICU, Moderate Care and regular patient rooms) but Ben cried the whole time. We came back to the Med-Inn for a nap. Ben was sedated at 9am and slept until 1pm. He took a nap from 2:30ish to 4:20, 5:25 to 6:05 and after crying for an hour, while his Daddy went to pick up his grandparents from the airport, he went to sleep at 8pm.

May 24, 2002 - Friday

Surgery Day! Ben woke up to at 4:30am. I was hoping that he would wait a while since he had to stop nursing at 6am. He had different plans. He was ready to eat right then. I nursed him and he went right back to sleep. I, on the other hand, was wide awake and rather nervous.

At 8:40am we all started towards the pre-op waiting room. We talked to the anesthesiologist and then waited to go the holding room. Surgery was scheduled for 10am but we didn’t go to the holding room until 11:30am. At 11:40am the anesthesiologist took him to the operating room.

The surgery lasted just under 3 hours. Ben was in PCTU (Pediatric Cardiothoracic Unit) at 2:30pm. Brad and I were able to see him at 3:40pm. When we saw him lying on the stretcher it was a bit traumatic. He was very swollen and had tubes everywhere. I was ok for the first 5 minutes and then I felt my knees get weak. I didn’t pass out but I was close to it. Had Brad not been there to catch me I would have ended up right in the floor.

The nurses were in the middle of shift change so we had to leave after only seeing Ben for a few minutes. We went back to the Med Inn for a couple of hours and then we went back to the PCTU until the next shift change. We went back to the room from 7:30pm to 8:30pm. After that I stayed with Ben until 11pm.

Brad and I agreed that this was the hardest day we had EVER had. The good news is that our little boy was now healed and we hoped to never do this again.

May 25, 2002 - Saturday

We had a full day of ICU. Ben was progressing a little slow but still doing pretty well. Last night Ben managed to pull out an IV in his foot. There is still a lot of drainage from the chest tube so we were stuck with that until the drainage stopped. This morning he was taken off the ventilator but he had to have an oxygen tube on his nose. The swelling was starting to go down slowly and we hoped to be moved to a regular room the next day.

Tonight Ben started to take a bottle. The nurse started with some Pedialyte and then breast milk. Tonight I was able to help give him a sponge bath. He wasn’t happy about it but he got one anyway.

Overall it was a pretty good day. Ben’s nurses were wonderful and he seemed to be doing better. They said he might go straight to a regular room and bypass Moderate Care.

May 26, 2002 - Sunday

At 11:30am Ben was moved to a regular room with a roommate (yuck!). Ben’s roommate, Mikey, had also just been moved from ICU a few hours earlier. Before leaving the unit they took out the IV in Ben’s hand (because it was bent), one of the groin IV’s and the oxygen tube. The chest tube was still draining so it had to stay along with the catheter and the other groin IV. He was also still hooked up to a heart monitor.

I was able to start nursing Ben today. He nursed really well but vomited after every feeding. He still had a lot of mucus in his stomach from the ventilator being down his throat. It didn’t help that he had been off of the prilosec for 2 days. I hoped tomorrow would be better.

May 27, 2002 - Monday

Last night was strange. Ben woke up to nurse about 11pm. he nursed really well and then vomited several times. The nurse assistant, Jeffin, had to change his entire bedding twice right before midnight. After that he slept most of the night. He woke up to play around 2am but he didn’t fuss until he got hungry around 7am.

We moved to a much larger room at the end of the hall. Today we had the room to ourselves. Brad and I will spent the night in his room in case of any trouble.

Today has been hectic. Ben has been upset 75% of the day. Of course, he has been asleep the rest of the time. He came off of the morphine and started to take Tylenol with codeine to help with the pain in addition to Ibuprofen. We think that the morphine was causing his stomach to be upset. He has been so fussy. I think the fussiness is because he had lots of gas, vomiting, and burps.

By 9pm he seemed to be a little better. The morphine was stopped at 5pm and the Tylenol started at7pm.

May 28, 2002 - Tuesday

Last night was full of surprises, At 11:30pm Ben was ready to play. He was happy in his crib just kicking away. Next thing I know I heard a popping noise. I looked in his crib and realized that he had broken his catheter. The nurses took the rest of it out because we were all hoping to get his chest tub out today.

Morning came. They came to get some blood for tests and later in the morning Louise, the NP for Dr. Bove, came by to check on Ben. She said the chest tub was still draining too much and maybe tomorrow it could come out. We keep hearing “maybe tomorrow.” They scheduled a tentative echo for tomorrow at 10am. We will know if the chest tube is to come out tomorrow around 8am. If the chest tube doesn’t come out the echo will be rescheduled.

Overall today wasn’t too bad. Ben didn’t get much rest and this added to his fussiness but it wasn’t anything we couldn’t handle.

It is 11:04pm and I am writing in the dark with hopes of Ben going to sleep. He is such a wonderful little angel and I love him more than I could ever imagine. There are no words to express how much he means to me. I will never regret having such a precious son.

**Ben has a roommate named Austin. He is only here for one night.

May 29, 2002 - Wednesday

Ben scared me last night. Every night since we left ICU his heart rate got lower and lower. Last night it was down to 58 bpm according to the monitor in his room. The monitor goes off with a series beeping alarms each time his heart rate drops below a preset level. Several times it was in the 60s. I was so upset that I demanded to see a doctor in the middle of the night. He didn’t seem concerned about it and said everything looked normal. Louise, the surgical NP, said that the main monitors showed nothing lower than 74. She spoke to a doctor and they said they would review his history before getting rid of the monitor and pacer wires.

There wasn’t a lot of fluid drainage so they took the chest tube out right before Ben was taken downstairs for an echo and EKG. As always he hated the medicine for sedation but he is now sleeping through everything. They will have to wait until he wakes up to do another chest x-ray. That is going to be terrible because they will strap him to the wall again.

The doctor that looked at the initial echo from last week reviewed today’s echo as well. He said that everything looked good and that we shouldn’t be concerned about the bpm dropping when Ben sleeps. He told us there was a small VSD remaining. The VSD may close on its own when the cells recover and grow over the patch (made of gortex). It is possible that Ben may need another surgery around 3 or 4 years of age but the doctor didn’t think it was very likely.

Ben slept most of the day, only waking to nurse. This evening he started to really act like himself again. He seemed happy and playful. It was great to have him unhooked from everything.

Tomorrow we will find out about the x-rays and hopefully we will be discharged from the hospital. We plan to fly home on Friday.

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