I am going to share with you what happened to us in June of 2002. We were home with our son, Tyler (4 months) and Maddison (2 1/2 years). We knew the patch on his diaphragm was starting to move up and that's not a good sign. We were prepared to have another surgery, we just didn't know when. While you read this, please note that I was in the middle of postpartum depression. This is one of those times in my life that I know I only survived on the wings of angels.
This is directly out of Tyler's medical journal that I kept.
June 13, 2002-
I am leaving this journal at Tyler's bedside so I can write in it whenever I can. Saturday, June 8th he started crying at 3pm. At 8pm he started throwing up, with some promptings from the Holy Ghost, we took him to the ER. An x-ray was done (After some not-so-nice words with the people in the ER dept.) on his chest and found bowels up in his chest. His diaphragm has stretched TOO much. Tyler and I spent the night at the St. George hospital and Randy went home to sleep. Tyler cried the ENTIRE night. That's unusual for him. Dr. Chamberlain is out of town, so Dr. Barton came in Sunday morning. He ordered an ambulance to take us to Primary Children's (life flight would have taken too long to get to St. George and back to SLC). I rode in the ambulance with Tyler (I couldn't feed him because they didn't know when surgery was going to be, so imagine me... tired, listening to my baby cry and not being able to help, oh yea, and my boobs were out of control, leaking EVERYWHERE!!!) and Randy followed in the car (we lost Randy a couple of times, the ambulance driver wasn't wasting any time). They did new x-rays and found more bowels had moved up. A barium enema showed no bowel obstruction. We went to the infant unit to wait for surgery (there is a nursing shortage so it's hard to get back into intensive care after surgery if there are no nurses).
Can you see the pain in his eyes in these pictures? They wouldn't give him any pain meds in case he had a chance to go to surgery earlier then planned. It was so hard. Randy and I would take turns holding him because all he did for 24 hours a day was cry. I would hold him and Randy would go walking around the hospital and then we would switch. It was hard to hear his cries and not be able to help him.
Tuesday we were finally taken in for surgery. They found that his bowels were all up in his left chest, stomach upside down and twisted, one kidney was rotated and pushed against the diaphragm and while they were in there, they took out his appendix. They knew a regular surgeon would have never found them!
He was put in the NICU because there were no beds in PICU. It's unheard of for kids to go back to NICU after going home. He was pretty desperate for surgery, so an exception was made. Today he got extubated and is comfortable. He also got a PIC line done in his left arm because 3 IVs went bad in 7 hours! He wasn't peeing yesterday, but today, that's not an issue. Although, he's still pretty swollen. Mollie and Dr. Null were pretty happy to see us. Not happy to see Tyler sick. Randy, Maddison, Jim and Peggy are coming up tomorrow. I haven't seen Maddison since Sunday. I miss her so much. Randy went home yesterday with Gina. He needed to work for a couple of days. I'm staying at the Ronald McDonald House room #301. It's $10. per night and worth every penny. It's 5 minutes from the hospital.
It was this surgery that we learned that Tyler is allergic to medical tape. Some band aids give him this same reaction. Can you see where they taped his eyes shut for surgery?
June 14, 2002-
Friday. This morning when I came in, surgery had already been there and took his dressing off his incision. There are steri-strips holding is closed. Today or tomorrow the chest tube should come out. His right lung is showing some "plugs" on x-ray. It doesn't look like pneumonia.
11am- they haven't rounded on him yet. We're taking Maddison to the zoo tomorrow. Tyler's CO2 levels are up, which means he's not breathing enough times per minute. We'll have to watch that. There was some orange stuff in his urine yesterday, maybe from irritation. We'll watch that too.
1pm- the respiratory therapist just came in and "pounded" on his chest to move some of the gunk. He's resting right now. I'm sitting next to him. He's in bed #37, in an isolation room because he's already been home. It's a small, glass room. We have the lights off and the blinds shut, trying to keep him calm. It's not dark, just not as bright. He's sucking on his Binky. I had to give the NNP his vaccination records. I'm glad I grabbed it Saturday, running out the door to the ER. Randy's bringing Maddison's records so hopefully she can come in to see him. His Verced is down to almost nothing. His Fentenyl has been halved. He's pretty comfortable. He's sleeping a lot and I'm tired. We're trying to be quiet to Tyler can sleep but it's getting harder for me to stay awake.
June 15, 2002
Saturday. 10:30am We're getting ready to go to the zoo when Mollie told us that she'll be pulling out his chest tube and Anderson! That means we can hold him! The plan is, when they get the tubes out, we'll hold him and calm him down then we'll take Maddison to the zoo and come back (we have to remember that we have a 2 year old also).
June 16, 2002
Sunday. The zoo was a blast yesterday. Lots of reflux today. He can eat, but LOTS of throwing up.
June 17, 2002
Monday. Still quite a bit of reflux. Dr. Black, the surgeon, said his stomach was twisted and upside down. Now that it's fixed, there might be some kinks or something so they did an upper GI test and put an NJ tube down his nose into his intestines. The NJ will help if he doesn't eat, they will be able to put the food through the tube. Cardiologist, Dr. Day, got an EKG. The upper GI showed that he refluxes at 4 oz. We're putting him on Prevacid and stopping Zantac. Smaller feedings more frequently. Maddison missed Tyler and I a lot.
June 18, 2002
Tuesday. He had a sedated ECHO today. It shows that he still has RVA (right ventricular athickening). The right side of his heart is thicker than the left. The RVA is mild, but he'll stay on oxygen to correct it till at least September. We'll have another EKG and ECHO then to determine if he can come off. They had to give him Verced tonight for the first time in 24 hours. He was VERY irritated.
Wednesday. He's eating well, no reflux. Dr. Pfeffer, the pulmonologist says he should do good, lung wise. At age 5-6 we will need a lung function test. During lunch I went down and cut 7 inches off my hair. It's the shortest I've had my hair since 5th grade. Randy doesn't know yet! He'll like it. It's dang cute. The surgical resident told me we should be going home in the morning. Randy, Peggy and Jim are coming up tonight. Randy and I will stay at the RM House. Jim and Peggy will stay at Jenny and Jimmy Pectol's house (Peggy's niece).
Saturday. Well, we came home on Thursday the 20th. Exactly 4 months after coming home the first time. Randy loves my hair. Coming home we got stuck on the freeway because of a fatal crash. It took is 6 1/2 hours to get home. YUCK!!! It was so good to see Maddison again. She was at my parent's house. She was very happy to see us. She kissed on Tyler for about 20 minutes. We went to Dr. Chamberlain yesterday so he could check him out. For the first time in his life, he could hear "full" breath sounds, on his left side instead of "decreased"! He was amazed to hear so much movement. We'll keep Tyler on Tylenol for another week or more. I'm sure he still hurts.
Chamberlain- 6 month check up
Black- 2-3 weeks surgical follow up
Pfeffer- 5-6 years lung function test
Day- September EKG and ECHO
Newborn follow up program at health dept.- whenever we can go up
It's a lot to remember, but they're all very important appointments. Mollie and Dr. Null came by to see us before we left. They will always have a special place in our hearts. They both love Tyler so much. My visiting teacher and the RS President have brought dinners over for us. They're very kind. I'm so tired. I'm going to bed.
Randy and his dad waiting for Tyler's discharge orders.
Leaving the hospital. Yea, a wagon, how else can you get everything? Remember, it's a children's hospital!
As you can tell, I had lost my sense of humor. I was in such a dark place. My brain just wasn't working right. Who am I kidding? Is it working right now? Anyhow, there were miracles that we witnessed during this time of our life that strengthened my testimony. I am glad that my Heavenly Father trusted us enough to send a child down that would need extra attention. We have received so many blessings from these hard times that it's easy to see this time as a blessing. I am going to start working on a video of his journey, but I'm a little slow, so who knows when it'll get done. To learn more about diaphragmatic hernias, go here.
Christmas Home Tour (living and family room)
2 days ago