Grant's Journey

Life has been wonderfully busy here, so I am just now getting around to updating. On Wednesday, we headed to Primary Children's for Grant's first outpatient cardiology visit. This was a new experience for me. Thankfully, Lisa (Jack T.'s awesome mom) warned me about what to expect and so I was a little more prepared. I was expecting to just go to see our cardiologist, but instead, I learned the ropes. We had to first check in with the outpatient registration, get paperwork for labs, go to cardiology, fill out their paperwork, take orders down to X ray, get a chest X ray, plead with the tech to take a KUB so we could check and make sure Grant's feeding tube was still in the right place, get told it had to be ordered, get blood drawn, wait for lab results, get an EKG (pictured above...makes Grant look like a robot don't you think?), see the resident, finally see the cardiologist, get orders to go back for a KUB in X ray, come back to cardiology....whew! I was shocked, ...

Quick note tonight... We are good, just busy which is the reason for no recent postings. Grant and Alli were able to join me in Idaho after the cardiology appointment and they will be here for a few more days visiting. We have been house hunting and enjoying Grant. Alli can post more tomorrow about the cardiology visit, but from what she shared, the main news is that Grant is doing well, but remains fairly unstable. Our cardiologist wants to push his surgery to sooner rather than later (right around 4 months old...mid July). He hopes that this will help to stabilize his condition a little more. For the meantime, we will check back every two weeks and enjoy our little guy at home. More details will follow when we get a chance to take a break. Caring for this little guy is a two person full time job!

Grant and I said goodbye to Kyle today as he took our packed car and headed up to Idaho to get settled before starting his new job tomorrow. I though it fitting that we have had BEAUTIFUL weather today and then not ten minutes after he drove away, the winds picked up, and it got cloudy and stormy. I for one will miss him dearly. I am so grateful that he has this wonderful job in a tough economy. I cannot wait till we have everything sorted out and Grant is stable enough to be able to join him full time in a few months. After last week, I panicked and decided I was not ready to be alone with Grant and I am lucky to have a wonderful mom who took off work to come and hang out here. She will accompany us to Grant's cardiology appointment on Wednesday, and if all looks good, we will get approval to take him to Idaho to visit Daddy for a week! I think that I can handle a few days away to start and gradually work up to full weeks alone! This weekend was good for us. We were getting used ...

Well, the verdict is in. Grant does indeed have some kind of infection in his incision. He also has some red areas in the folds near his groin which look suspiciously like a bacterial yeast infection. The team here is unsure as to what kind of infection he is fighting, but they don't want to keep him here to risk getting sick from someone else, so we are going HOME! Again. YEAH! His incision is looking ten times better after 12 hours of IV antibiotics, so they are certain it is responding. The attending just switched his antibiotic over to an oral form so we can give it to him at home and we will just continue antibiotics for ten days at home. We are also going home with a new med to increase the positive bacteria in his digestive tract to help prevent future bacteria growth (he cannot fight bacteria due to his asplenia) as well as a powder yeast infection treatment. They figure the combination of the two will kill anything dangerous. We will follow up next Wednesday with cardiolog...

This was not the post I was intending to write tonight. Tonight, the post was supposed to be talking about how wonderful it is to be home....how wonderful my sister Kellie and our great friends (thanks Melanie, Kristen, Amy, Chase, Spencer, Amanda, April!) are for helping us unpack and clean the RV to get our house in order. This post was supposed to be about our work to get Grant on a schedule and show cute pictures of him at home. Instead this post is about: OUR LATEST EXPERIENCE IN THE PRIMARY CHILDREN'S EMERGENCY ROOM! sad huh. The last 24 hours, Grant has been increasingly fussy. Our home care nurse came by today to check in on him and I showed her his abdominal incision. It was looking red and puffy to me. She agreed and we took his temperature. He was running about 99.6 degree, so he had a mild fever. Fever's for our little asplenia/heart baby are big deals, so we called our pediatrician. Our peds doc took one look at the incision, confirmed that it was not looking great...

**If you read this post earlier, I fixed the missing links on the photos now** Here are some pictures of what Kyle called... "The conclusion to Act One: The Exodus"... I thought it to be a fitting title since this was the first of at least 3 major hospital stays for heart surgeries. We came home and were welcomed into a freshly sanitized house and these! Thank you to our wonderful neighbors and friends who surprised us with these! How fun to see when we got home! ... Can someone who was involved in the cleaning project please tell me who the picture is of the random teenage boy hanging on our magnet board? Funny touch, but we seriously have no idea who it is that we are now proudly displaying photos of! Before we left, Grant got a bath to get him ready for his going home outfit. This was the first submerged bath in many weeks due to finally having his central lines out. I was surprised...He actually seemed to like chilling in the warm water! This was the outfit we chose to ta...

THERE'S NO PLACE LIKE HOME!!!!!!!!!!!!!!! I am exhausted. We are home. Grant did great on our drive until we got into the middle of Sardine Canyon (no place to pull over!) and decided to welcome us to parenthood with his first HUGE diaper blowout. He was satting in the low 60's fussing like crazy due to the mess, and we had to just keep speeding along till we could pull over and try to clean him up! Good thing I asked for some wipes and extra diapers from the hospital since our diaper bag was a little less than stocked at the time!! We are overwhelmed with gratitude for the many miracles we have seen and the wonderful chance to have our special kid home. Last night was a long night, so I am going to go see if I can sleep for a few more hours. We will post with more pictures and details when we have some more time to get settled. p.s. my bed is WONDERFUL!