All you have to do is say the Q-word (quiet) and Hope is almost sure to respond with a new ride on the Heart Rollercoaster. As much as we hoped to have a quiet weekend, Hope had something different in mind for the holiday week.
On Monday she was supposed to go in for her first Cardiac Cath for two items: 1) to get a biopsy of her new heart and check for rejection and 2) She also had a slight gradient at the suture site on her SVC (superior vena cava – the vein returning blood to her heart from her upper extremities/brain) – meaning the pressure is slightly higher on one side of the suture. They wanted to check this gradient during the cath and access whether they need to intervene/balloon the site to ensure it doesn’t impact the blood return from her head to her heart. If the gradient was high enough to impede to returning blood flow could cause enough congestion that manifests in several ways including a swollen head. We weren’t seeing that so we were hopeful that the gradient was low enough to not require intervention.
Hope took us for a ride about 30 minutes into the cath when her cardiologist came to see us to explain that Hope has a blocked IVC (inferior vena cava – the vein that returns blood to her heart from her lower extremities) and he couldn’t get through to complete the biopsy. The suspected culprit: either her PIC lines in her legs or her pheresis catheter. The latter was already gone and they pulled her PIC lines to be safe also. We were hoping this means no more PIC lines, but she still needs central access so she got a new one in an upper extremity, much to John’s dismay.
They presented a plan to get an MRI and, if all is clear, to proceed with a clot-busting drug called TPA to try to dissolve the clot. So they ballooned her IVC open a bit and inserted a metal sheath into her groin where the TPA would be dispersed directly at the site of the clot and sent her back to her room. It takes quite a bit to prep to get Hope ready for an MRI because all of her lines have to be switched to 100ft tubing lines so that her drips are long enough to wait in another room while she goes into the MRI machine. The nurses were halfway through switching her tubing when I pointed out her pacing wires were still in (no metal in an MRI so I assumed anything called a “wire” might need some attention). There was an audible groan as we all realized that an MRI was off the table and the nurses quickly switched gears to get her down for a CT scan instead. The CT scan revealed that at some point over the last several months Hope has a new infarction indicating a stroke as well as an area of subdural bleeding. The stroke was news to us, but it was subacute and in an area that wouldn’t manifest symptoms in an infant (following directions/executive functioning) and the subdural bleeds are very common in children after being on bypass – which Hope was on twice in the preceding two weeks. While it wasn’t surprising, it did throw a major wrench into the plan to use TPA because the drug could aggravate any existing brain bleed and cause serious neurological damage. It took a while for the team to get on the same page, but they ended up deciding to run Heparin (an anticoagulant) to prevent the extension of the clot from Monday – Wednesday.
Wednesday morning she was due to go back to the Cath lab with her favorite anesthesiologist, Renee, when she kept going into Atrial Tachycardia. This can be normal post-transplant with the suture sites being able to cause inflammation which leads to a-tach, but rejection can also lead to a-tach, as well. Needless to say, we were all really anxious to find out the results of the biopsy. Hope was supposed to be the first case of the day so that we might get a preliminary result by the end of the day. She didn’t break out of her A-Tach until well after lunch and it was 3:30 before they could finally take her back and 5:30 by the time they finished. They began treating her for rejection on Wednesday because the suspicion was raised high enough and the biopsy results wouldn’t be back until Friday. They decided to run the Heparin for a few more days through her groin sheath, which also meant we couldn’t hold her because she needed to be flat in bed with that wire in place (since Monday!!!). So not only could we not hold her, but we were left worrying about rejection all day Thanksgiving with her A-tach persisting throughout Thanksgiving Day. The biopsy measures both cellular and antibody-mediated rejection and our Thanksgiving gift was that we found out the cellular part was negative.
We couldn’t dress her on Thanksgiving day because of her groin sheath (despite my best efforts) so we took the photos on Monday with Rose from Child Life after her sheath was finally removed this weekend. She’s so awake! And boy does she look mischevious in a few of them. It’s the first time I think she looks a little like me!
We spent Black Friday at the hospital with the Owen side of John’s family and it was great! We took over the lower area of the hospital and John’s cousin arranged for Chick-fil-a catering and we got to see so much family that we wouldn’t have otherwise been able to see. It was so heartwarming to see everyone – and especially to hear news of a new addition on that side of the family so Hope will have even more cousins to play with! John asked every single hospital employee he could find if they knew when the biopsy results would be back – hoping that someone had the magic answer. We were so nervous because Hope was highly sensitized prior to transplantation and antibody-mediated rejection scares John and me so much. John finally got the phone call around 4 p.m. with the biopsy results and we were elated to hear that she was negative for both types of rejection.
Hope has had a few other days with some cute photos so we are just including those to share our joy in seeing her awake, dressed and happy (and shower her shoes off)!!!
And my rocking my Tom’s!
The big question: When. Will. We. Be. HOME!? This, like everything else in this process, will happen on Hope time – meaning when she’s good and ready to let us come home! Seriously though, they think we may be home for Christmas. Hope will have to stay within a 9-mile radius of Children’s for three months (during the highest risk period for acute rejection) so we are fortunate that we live so close. Other families have to stay at Ronald McDonald or other hospital accommodations if they love outside that radius. Once we are outside this first three month period I️ think we will be able to slowly let Hope out into the world!!! For now, it’s just important not to stress her suppressed immune system and let her heal and recover from the transplant itself.