Monday's Memory 12

I mentioned last week that Matthew developed croup at 14 months of age...the beginning of a long adventure that will unfold over many Monday memories. I took him to Urgent Care for respiratory distress. They took their sweet time getting us through. When the nurse finally hooked up the oximeter to check his oxygen saturations I couldn’t see the monitor. She said just a minute and ran out the door. In seconds she comes running back with the doctor and puts it back on then hussels around the room getting nebulizer stuff out. He was saturating at 50! They did a neb treatment and then had me drive him to Children’s Hospital where we were admitted just for the night. Steroids, nebs and a little oxygen did the trick.

At 16 months of age he was a little more blue than we wanted – saturating around 70%. He had another heart catheterization which showed that there was a narrowing of the aorta and also that his pulmonary arteries were very small. He was a little small yet for the Fontan (the 3rd planned stage of surgery) and with the small pulmonary arteries was not a good candidate for it anyway. They decided that they would do surgery to clean him up a little and help him get ready for the Fontan at a later date.

Photo: Joshua age 3 1/2, Matthew age 16 months

We were able to wait until after the holidays this time for surgery. He was 18 months old. He was so close to walking right before surgery. He would take a step, fall, get up, take a step, fall, get up…he worked so hard. It was really sad to see him get so winded through the process but he kept trying. We knew very early on how STUBBORN he can be. This is one area where that is a good thing.

For this surgery…I didn’t feel so good. I just couldn’t help but feel that this was going to be a long one. We went in on the 9th of January. Surgery went ok. They were able to fix up the aorta where it narrowed and they put in a shunt from the superior vena cava to the right pulmonary artery. It initially didn’t work and they had to try again. The surgeon came out from surgery and told us that they were able to do what they needed to do but that the pulmonary artery walls were paper thin and he just wasn’t sure if this would help them or if he would ever be a candidate for the Fontan procedure.

Matthew struggled with a little bit of junctional tachycardia again but not as bad as last time, only 210 heart rate this time. They cooled his body and it slowed the heart. He was fine after the first 24 hours. He was extubated on the 5th day and saturated at 85-90%. At discharge he had a pleural effusion…there was fluid in his chest, which they thought was mild pulmonary over-circulation and thought that it would work itself out. We were discharged on the 16th.

Photo: Matthew after an awake period while intubated in the ICU. I love the foot on the rail.

Photo: Not feeling so hot after surgery.

On the 18th we were admitted again for respiratory distress from the pleural effusion…saturations at 70%. He received extra diuretics & oxygen, which improved the situation. We were discharged on the 23rd.

Photo: Matthew at home; obviously needing to be back in the hospital.

Photo: Feeling better now after diuretics.

By the 28th, he was back in respiratory distress, puffy, not eating, breathing hard, and somewhat blue; re-admitted for the 3rd time, x-ray showing the right side completely full of fluid. They finally decided that it must be a chylothorax…fat leaking into the chest cavity. They told us there were 3 things they would try. First, a chest tube and a no-fat diet. If that didn’t work, then we would put him back in the PICU and pour a chemical down his chest tube that would literally burn the chest cavity wall and scar it. (The hole/holes are so small you can’t see them I guess.) Lastly, they could do surgery and scar his chest cavity by hand by scrubbing it. Knowing Matthew…I knew we would get to surgery. A chest tube was placed in his right side to drain the fluid. We started a no-fat diet. It was somewhat helpful, but not enough.

The second step was called chemical pleurodesis. IT WAS ABSOLUTLY HORRIBLE!!!!!!!! They literally poured a chemical into the chest of my little 18-month-old boy to scar the chest wall and close up any holes there. I watched him for the next hour roll all over his bed crying out in pain. That had to be the worst day of our lives. Oh, it was awful! It’s the only time I’ve ever had to leave the room to compose myself…I couldn’t stand to watch it. I was completely helpless. It was good that he was rolling all over because they needed that fluid to get everywhere in the chest to work.

Photo: After scarrification surgery. He was a thumb sucker and loved that blanket.

We ended up in surgery a couple of days later…that horrid procedure had not worked. They told me that morning after rounds that they would take him into surgery in a couple of hours. I made some calls to let people know. I called Mike and told him to come. I called our Bishop’s house and got the answering machine and just left a message that we were going back in to surgery. I was on the phone with my sister a little while later and she asked if I was going to get him a blessing before he went in. I replied that it was the middle of the day and I didn’t know of anyone that could come but kind of jokingly said that Heavenly Father would send someone if he needed one. As we talked I looked out the window and here comes Bishop Pratt. He said I work just a little ways from here and thought I would come and see if I could help give Matthew a blessing.

How grateful I am for inspired leaders and good friends. Again, a huge testimony builder that God does know us personally and loves us. He gave Matthew a beautiful blessing and we were off to surgery. He came out with a new incision across the side of his rib cage. The one on his front chest was still fresh, only a few weeks old and 3 chest tube holes. He looked awful. But…it worked! We finally went home on February 12th. He stayed on that fat-free diet for about 6 weeks, I think. It took him quite a while to rebuild his strength. He didn't get back to walking until he was 21 months old.


Photos: Matthew's homecoming with cousin Tyler.