Monday's Memory 16

Unfortunately, the easy surgery in April 2003 and the birth of Noah in July were the calm before the storm. Matthew’s health went south and stayed there for a good long while. Beginning just a few months after his Fontan procedure, Matthew had something going on every couple of weeks for the next 15 months. Seven pink flags in his medical records mark every time during those months that I told the doctors about “coughing” & “mucus” issues just at regular visits. I remember calling the Docs a lot for treatment over the phone when he was sick and he was hospitalized twice for the same kind of illness. Once was taken by ambulance which was kind of silly but still quite frightening. (Silly because I had taken him to urgent care and they always over react at urgent care because they are terrified to deal with such a complex body. He wasn’t anywhere near the point of “urgency” that he was that time I posted before…when he was saturating at 50 and they had me drive him to the hospital. I would have been perfectly comfortable driving him there again.)

I remember it being freezing and snowy like it is now and having to carry my baby Noah in one arm and my 4 year old Matthew in the other arm into Walmart and every other place we went. I remember being SOOOO tired and just going through the motions, feeling so helpless. Matthew couldn’t even walk into the store without coughing. He looked so small, and weak and was ALWAYS sick. It was awful. He always had hives too. He seemed to break out for no reason at all. It was never consistant.

He was put on every kind of asthma treatment possible and when those didn’t work we started testing…testing for Cystic Fibrosis, every kind of allergy and disease…you name it! Everything was negative.

What was wrong with my boy?! I was desperate for some relief and some answers!

I’ve already posted about the events that followed where Joshua got sick as well and ended up in heart surgery to replace his valve and then Matthew was hospitalized two weeks after Josh came home (December 2004). That’s when we finally got SOME help. Hypogammaglobulinemia and T-cell dyscfuntion...one answer. The IVIGs Matthew receives now, as I mentioned in the previous post, are an absolute miracle!

Matthew did improve very much but there was something more. Cardiology did a catheterization on December 30, 2004 and saw that his pulmonary arteries were still small. They decided that it would be worth a try to place stents in them to help open them up. That was done on February 2, 2005 in the cath lab and he stayed in the hospital for 2 days struggling with edema again.

He continued to have issues with “mucus”. This may disgust some but Matthew would cough out these large chunks of very sticky, kind of stringy “mucus”. Sometimes they would come up easily and sometimes not. I have pictures, but I will spare you. That’s the only way I knew/know how to describe it. I told every one of his doctors. They kept telling me to talk to the Pulmonologist and when I talked to the Pulmonologist he would do another test that would come out negative or start another type of medication that didn't work and then tell me that people with asthma can have this issue.

I just couldn’t accept that for an answer. It didn’t feel right…I KNEW there was something else going on. I researched for hours, days, and weeks on the internet. I’d call Sara and she would research with me over the phone. He seemed to fit so many things mostly but nothing exactly.

We had one particularly frightening night when Matthew woke up having one of these episodes. I heard him coughing and so brought him into my room and we sat on the floor together. He coughed and coughed and began choking on this “stuff” in his throat. It wouldn’t come out. He started to panic and really was in trouble. I always WAY under react…in my mind I’m thinking…should I call 911? Most people would have just called…but not me I had to plan the whole trip.

I played this out in my head for several seconds going back and forth…what should I do? Finally, he was bad enough I started to jump up for the phone but instead I called to Mike (who amazingly slept through all of this noise) and said “Mike, Matthew needs a blessing!” Mike sleepily sat up not realizing the urgency. He started talking to Matthew and asking him if he wasn’t feeling well. I yelled “He needs a blessing NOW!” Mike jumped up and came and placed his hands on Matthew’s head and Matthew immediately stopped coughing. He was calm and began to take some nice deep breathes during the blessing. I can’t even remember if he ever coughed that thing out that night or not but it doesn’t matter. I am SO grateful that we have the priesthood on the earth today. To act in the name of Jesus Christ and use that power to bless and to heal and to save through our faith. I am very grateful for a worthy priesthood holder in my home that I can call on in the middle of the night…we’ve needed many middle of the night blessings. What a wonderful gift!