Wednesday, October 20, 2010

I'm always talking about my friend whose little baby got a heart transplant two weeks prior to Matthew's getting his heart transplant. I thought you might be interested in seeing this link. Landon was the first to receive an incompatible heart transplant at Primary Children's- pretty amazing! This is an incredible family and I love the friendship that has developed between Tammy and I! The transplant cardiologist who was interviewed is also Matthew's cardiologist- Melanie Everitt. She is awesome!! Here is the link: - Lehi infant receives hospital's first incompatible heart transplant

We are doing good. Luke brought home a nasty cold from preschool and then passed it on to Matthew. I think this is Matthew's worst illness being on immune suppressants. We are holding our breath and waiting to see how he does. He's a trooper! We may need to consider preschool at home- at least during the cold/flu/RSV months...

Next on the docket for Matthew: He has a follow up ureteral reflux test on November 2nd, depending on what they find Matthew may have surgery in the near future. He has a heart biospy which will be scheduled the week of November 8th. We are hoping for good heart function and NO rejection. In early December he will have a procedure to change out his "tube" that was just placed to a "button". This will be nice because then his tube won't get caught in his shirt and he won't be at as high of a risk for pulling his tube out which would result in an ER visit to replace the tube. In the meantime, we will carry our "emergency gastrostomy kit" with us wherever we go. Always something with this sweet little man! He keeps us busy!

Thursday, October 7, 2010

I will apologize up front if this post doesn't make much sense. I'm somewhat sleep deprived and my brain is only partially functioning today. We were able to bring Matthew home from the hospital yesterday. Oh, how good it feels to be home! For the first time in about 4 1/2 months Matthew's sweet little face is free of any tubes! He is so beautiful!! We will have to snap some pictures and post them once his face heals from all the tegaderm injuries he's acquired in the past from keeping his NG tube in place.

The surgery for Matthew's gastrostomy tube placement went well. It's a little strange to think that when I open the cap at the tip of his tube to give him meds or food, I am basically dumping it all right into his belly. I'm not sure if I feel like this is an improvement from what we had before, but I guess it was a necessary step. Matthew is actually eating a little bit by mouth since his surgery. If having the Peg tube helps Matthew to eat better, I guess all of this was worth it.

The hospital stay went better than expected. The worse part was when he woke up right after surgery. Of course, Matthew had a difficult time waking up from the anesthesia like always. The hospital only allows one parent into the post operative recovery room so I got to go back with him. I heard him screaming as soon as the doors to the unit opened- all I had to do was follow his voice to find him. The nurse wanted me to console him and hold his oxygen in place while she worked on discharge paperwork so that he could be admitted to the floor as quickly as possible. Let's be honest, if I was a nurse and had a patient like Matthew post anesthesia, I would be doing the same thing. I could see that his IV was loose already, probably from his thrashing prior to my arrival. They secured it with additional tape. About 10 minutes later, and while Matthew was still obviously very unhappy the nurse informed me that it was time for me to hold him in my arms and walk him upstairs to his inpatient room with the nurse's aid who would be escorting me. We almost made it to the exit doors of the unit, probably the busiest part of that area, when I noticed blood all over Matthew, my shirt, Matthew's blanket and on the floor. When I saw the aid staring at me along with about six or more other desk receptionists, and nurses who were all doing nothing but staring at us with their mouths opened I yelled "somebody help me please!!!" I think everybody was in shock- they all started putting gloves on but I don't think anybody really knew what to do. I've been through a lot of hospital experiences with Matthew and not all of them have been pretty, but I've always maintained a calm, nice disposition. However, when I saw the blood pooling all over the floor, literally soaking me and Matthew and I wasn't sure exactly what to do or where the blood was coming from and I could clearly see that nobody around me knew what to do I ordered that my husband come in the room right now. Matt walked through the doors and asked what in the world was going on?? As it turns out, Matthew had pulled out his IV in his struggles and post anesthesia delerium. He also somehow pulled off this cup that was attached to his G tube to catch any blood or other drainage from the surgery. They moved us to a side room, called the GI doctor and quickly got the bleeding stopped. When the GI doctor came into the room he asked me if I was wearing a tye-dye shirt or if that was blood all over me? Yep, it was blood which soaked through all 3 layers of my clothing! Never underestimate the blood thinning agents in Aspirin! Matthew takes Aspirin every day and it definitely does it's job!

After we got to Matthew's room things were smooth sailing. Once Matthew woke up, he tolerated everything much better and things calmed down a lot. We ended up being two hospital rooms down from our friends Faith and Shawn Garff whose little baby who was born with hyposplastic left heart. Cruz had just had his Glenn surgery about 4 days earlier. When Matthew had his transplant, Cruz was born and we were in the hospital back then together also. Baby Cruz seemed to be doing well when we left the hospital yesterday and sure is a sweet little guy! You know your a hospital frequent flier when you know your patient neighbors in the hospital.

Yesterday and last night, Matt was on call at the hospital. I was a little nervous to bring Matthew home, but things went well. He did throw up in the middle of the night. I think he's still recovering and needs to take his feeds more slowly. He was so excited to get home yesterday that he wore himself out trying to keep up with Luke running all over the house. Today he's been really sleepy! Hopefully he will pace himself and have a full recovery soon. Until then, I am dreading the daily dressing changes on his new tube... yikes!

Friday, October 1, 2010

Things have been pretty good and stable since the last biopsy. These past two weeks we've been chasing Matthew's Prograf level, but we are hoping to get that stabilized soon. Matthew goes in for surgery on Tuesday to get his Peg tube (gastric tube) placed. It's suppose to be an overnight stay- I'm dreading it! Who knows what kinds of memories this experience will dig up... poor little Matthew! He's getting a Peg tube because he is still not eating at all. Since his transplant, Matthew gets all of his nutrition through his NG tube. He is finally gaining weight, but we keep praying he will some day gain weight because of what HE is putting in his mouth not because of what we put down his tube. We are hoping that any food aversions, discomforts, or gastric reflux that can occur with an NG tube will go away with a Peg tube and that he will magically start eating like a champ again. We'll see... it's okay to dream right? Please keep him in your prayers!

Now that his heart is looking good, the cardiologists are wanting to focus on Matthew's kidney issues that have always taken a back seat to his heart issues. Matthew has ureteral reflux which has not improved since birth. We will go in for some testing on November 2nd to see if the reflux has improved since our last test about 6 months ago. Reflux usually does not improve in 6 months so mentally we are planning on another surgery for that before the year is over.

Matthew's next biopsy will also be in early November sometime. We are hoping to find normalized pressures and NO rejection!!

It looks like it is going to be a busy Fall! We have enjoyed these past few weeks- the calm before the storm, I guess. Matthew is one tough little guy! Our kids all got the flu shot this week and you would've thought the end of the world came right in the Dr's office-- Matthew just keeps plugging along and takes life as it comes dealing with everything wonderfully. We sure love all of our kids!