The Burlingames

Today Eli had his heart catheterization. A heart catheterization is “the threading of a catheter (tube) through either a vein or artery into the heart. The heart catheterization is used to diagnose problems with the blood flow and structure of the heart, or to open or close certain heart structures.” *Courtesy of Children’s Heart Clinic. Today they went through Eli’s vein. During the last heart cath (at age 5 months), they had inserted several coils. The coils cut off blood flow through certain veins in an effort to reroute some blood work.

He was sedated for the entire procedure and very upset and frustrated as he was waking up. I started out holding him as he was waking up, shortly after Dave entered the room (after I had struggled to keep him calm and relaxed) he wanted Dave to hold him and promptly fell back asleep. Upon waking up again, Eli wanted various people in and out of the room (Dave’s parents – Charlie and Kathy were there as well). He was able to eat and drink, he did not throw up (which was very good). He stayed calm and still for the next few hours and watched the movie ‘Cars’. Before we could go home, the doctors and nurses wanted to see him up and moving around. He got up and played for a little bit. As we were packing up to go home, he started perking up and was getting excited to go home. However, he did NOT like having the bandages pulled off. Now we just need to make sure the cath site doesn’t burst (blood shooting out) for the next few days, then we can resume all normal activities.

The doctors were very pleased with how his heart and blood vessels were working. They did say his heart valve is still leaking, but they were not concerned about it. Dr. Rios said he was ‘good to go’ for the last surgery. They will be calling us soon to schedule the last surgery.

We were given a tour of new heart unit at Children’s in Minneapolis. It was absolutely gorgeous!! For his previous two surgeries we started out in the pre-surgical area, then moved to the PICU (after surgery) and finally moved to the IMC before discharge. Now, everything is on the 4th floor. Eli would have his own room, instead of being in the bay with the high traffic area just across from his bed. Each room has either a 1/2 bathroom or full bathroom (super nice), a pull out bed, several chairs for sitting in, TONS of space for moving around, locked storage units and so much more. It was absolutely amazing, such a HUGE transformation from what it had been. We also saw the Ronald McDonald House that is now housed within the hospital (3rd floor). We will be able to stay there overnight if need be, we can get our meals there, sit and relax in the huge common area and socialize with other families with children in the hospital. We also found out that since I’m nursing Noah, we’ll be able to get a meal voucher card for the week. This is a big deal, it takes away a huge expense of purchasing food for the duration of the hospital stay. The only expense we’ll have for the week is parking (very thankfully my insurance will cover the entire cost of his surgery and recovery).

I struggled emotionally today. My baby was hurting and he didn’t want me and my Mom wasn’t there to comfort and support me, her baby. I was missing Mom so much today and wished she could’ve been there or available via the phone to talk. I’m going to miss her this summer when we do his final surgery. She was going to stay with us during Eli’s hospital stay and help with Noah and taking turns being at the hospital with Eli. Ugh, sometimes death really sucks.

* Courtesy of Children’s Heart Clinic.