All cried out

What a long day! I figured I'd finish it off with updating my blog since so many of you are anticipating the outcome of our meetings today. Matt was post call today and didn't get much sleep last night. Call really means "30 hour inpatient shift". These are long days for Matt. Matt was a good sport to agree to come to the hospital and participate in such deep and emotional conversations when he was going into them feeling worn down. Our meetings started at 2:30 with the palliative care team here at Primary Children's hospital. The last hour of our meeting the transplant team joined us. We talked to everybody for 2 1/2 hours. Transplant told us that after a long review of the literature, the CV surgeon and the rest of the team felt that Matthew would not be a candidate for either the LVAD or ECMO as a bridge to transplant. The risks far outweigh the benefits and they feel like the outcome would not end well for Matthew based on past literature (which is limited anyway because there aren't too many children needing LVAD or ECMO when they are less then two years out from transplant needing another heart). Furthermore, transplant told us that we've reached the end of the line in terms of treatment options available to Matthew. We could consider increasing Matthew's dose of Milrinone one last time in the future, but the team felt like the effects of the drug should be seen by now. Increasing Matthew's dose would also require a full time CICU stay. Furthermore, Matthew is too sick to come home. This may change in the future, but we are not anticipating his congestive heart failure getting better rather it will continue to get worse with time. We will most likely be inpatient until transplant. For now, Matt and I have decided to stay the course hoping and praying that, if it's the Lord's will, a heart will come for Matthew. He is happy and playful for the most part. You certainly would never guess that he was in end stage heart failure. If we start seeing other systems begin to fail, we want to take him home on hospice. There have been evidences of some organ damage as a result of his heart failure with his bowel and his gallbladder. So far his liver and kidneys (failure of these organs would require Matthew to be taken off the list) are doing okay. I am nervous because his kidneys are working extra hard as we are giving Matthew 3 dieretics 5 times a day to help remove the extra fluid his heart cannot get rid of on it's own. Matthew has lost over two pounds of fluid since we were admitted 10 days ago. I just wonder how much more his poor kidneys can handle. Transplant admitted that finding a good match for Matthew will be difficult because of his antibodies and his O blood type- he has to take an O heart. Matthew was listed as a status 2 on January 31st and then bumped up to a status 1A on March 15th. Transplant has only had a few offers which ended up not working out because of additional antibodies not listed in the system. This is discouraging! The rest of the conversations were based on Matthew's death. What we wanted, different scenarios of his death, what treatments we could withdraw from and when, DNR at home or at the hospital. On and on and on..... I literally think my tear ducts dried out from the tears I shed in that room! Sorry to be Debbie Downer, but that is the reality of our day. I really appreciate the love, support, and prayers from so many of you that have literally carried us through this day. Thank you!

And, we're back

Matthew was discharged from the hospital last Friday night. By Saturday I noticed increased nausea and vomiting. The little voice in the back of my head told me I needed to call transplant, but my mind got the better of me. I knew we had been in the hospital the night before and chalked up his increase of symptoms to fatigue from his previous hospitalization. Sunday was a big day. Matt was getting back into town Sunday night from a conference he had attended the week before in Arizona. Joshua was being presented in sacrament meeting as a graduate from primary and was going to recite an article of faith and bear his testimony. I was also asked to go to primary on Josh's last day to talk about how "The faith in God" program was a blessing in our family. My great friend and visiting teacher, Kathryn Hart, agreed to come and sit with Matthew while I went to Primary but I just couldn't miss supporting Josh for sacrament meeting. I never feel good about asking somebody else to miss sacrament meeting so that I can attend- so I came up with a plan. Matthew was coming with me- I'd sneak in the very back and then leave right after the sacrament. It seemed to work, but when I got home I realized that the 20 minutes we were gone completely wore Matthew out. He perked up for Kathryn when I went to Primary to support Josh on his last day. When things settled down a bit I realized that Matthew was the same as he had been the day before. I paged the transplant coordinator who was on call on Sunday and she told me she thought we should come in first thing the next day to be seen.

On Monday morning we did bloodwork, an echo, and had a visit with Dr Tani. Based on Matthew's labs and his clinical findings Dr Tani felt Matthew's heart failure had gotten worse. Matthew's BNP went from 600 to 1500 in a matter of days. We were admitted to the CICU for an increase of Milrinone. Matthew is super fluid over loaded so they increased Lasix to three times a day and started Diuril and Aldactone to better dierese his extra fluid. Because his gut cannot even handle Neocate at a small rate through his G-tube (and he wasn't meeting his daily caloric needs anyway) they started TPN along with some additional lipids.

They decided to transfer Matthew out of the ICU tonight- so we are on the floor now. Matthew is technically on a dose of Milrinone that should keep him in the hospital to be monitored. To be honest, I feel like Matthew's care is over my head at this point. He is so sick already and his symptom changes indicating problems are so subtle that I'm afraid I'll miss something if he comes home.

Matt and I have an appointment with the CV surgeon, the transplant cardiologists, palliative care, the social worker, and GI to discuss the progression of his multi systems beginning to fail and the possibility of using an LVAD (left ventricular assist device) as a bridge to transplant. This meeting will take place next Wednesday when the transplant team gets back from a conference they've been attending this week. I'm not sure how Matt and I feel about the LVAD. The placement of this pump would require open heart surgery and a full time CICU stay until transplant which could take awhile still. I feel like things could get real ugly real quick and I'm scared!!

I'll keep you updated after we know more. As you know this whole process is a day by day process. Things change so quickly. Please pray for Matthew!!

30 days....and counting

Happy Spring everybody! I have loved seeing the flowers bloom and the grass green over the past few weeks. There's something about spring that rejuvenates my soul and gives me renewed energy.

Easter was amazing! I had a really spiritual experience on Easter morning. The kids woke up happy to start looking for their Easter baskets. Matthew had thrown up first thing when he woke up and wasn't feeling great, but he was still determined to get going. Seeing Matthew with little energy hooked up to his backpack of Milrinone and connected to his IV pole with his feeds while looking around the house for his Easter basket was a humbling sight. I got tears in my eyes as I watched him and contemplated what we were celebrating Easter morning. I realized at that moment stronger than I ever had that Matthew would be healed from his physically imperfect body one day. I felt so strongly that we would all be reunited one day together as families on the other side of the veil. Of course, I've known these things for a very long time. For some reason, on Easter morning, these truths were seared into my soul.I think this was Heavenly Father's Easter gift to me.

I have to apologize for being an inconsistent blogger. I must admit that sometimes I try to wait to blog until I have something positive to blog about. It seems like lately the good news is few and far between :( Nonetheless, here's the Matthew update:

Matthew's red and white blood count have been low for many months. Because he has spent so much time in the hospital, the medical teams were attributing the lower red blood count to the frequent inpatient blood draws and the white blood count to the chemotherapy drug and other immune suppressant medications Matthew was on. As we spent more and more time away from the hospital and got further out from taking the Bordezomib, we did not see a huge change in his red or white blood count production. While he was inpatient one of the times these past few months, Matthew had blood in his stool. The theory was that his RBC was lower possibly because of a GI bleed or several viruses he could have that can lower the production of RBC. And so the testing began. They took a ton of blood (ironic right) and scheduled him for an endoscopy and colonoscopy. The plan was for Matthew to stay for a 23 hour observation after the procedures and get an IVIG infusion while he was there. Matthew tolerated the procedures well and we now have many internal pictures of Matthew's colon and intestines to put in his scrapbook :) GI did not find an active bleed, but we gave him some because they took biopsies :-/ There were no ulcers either. What they did see is some evidences of ischemia in his gut but only in sections- not the entire gut- the pathology also confirmed these findings. I tell Matt that as soon as Matthew is admitted it's like being in a vortex. I feel like with each day we get sucked in deeper and deeper and there's no way we'll ever go home! 23 hours came and went. More tests were ordered and a CT angiogram was scheduled. The results from the angiogram told us that there was no blood clot or any other blockage leading to his GI system that would explain the ischemia. We also saw on CT that his liver and gallbladder are enlarged...probably from Matthew's heart failure. So, Matthew was admitted being in heart failure...we spent three days in the hospital and spent thousands of dollars on tests only to find out......Matthew's in heart failure. Sometimes I get frustrated! We couldn't proceed with another heart transplant though if he did have a GI bleed somewhere or if he had a clot somewhere. I guess being able to proceed with our next transplant still is the good news to report here. The bad news is that his heart failure is affecting other organs and I'm not sure how long they can hold out before permanent damage is done. Matthew has been on the list as a 1A for 30 days today. The average wait according to UNOS as a 1A is 38 days. I feel like we are racing against time and I'm not sure what will come first. I hope and pray Matthew can receive a heart quickly and we can move on from this nightmare! until then, I try to find peace in the spirit of Easter which I felt so strongly this week.