Day 40
The summer Olympics are in full swing and we have realized that, while we are not participating in these games, we are running our own race. After the first initial surgery, the adrenaline rush was high, all that has since worn off and we are tired and exhausted. The ups and downs have been brutal and it’s hard not to get discouraged. We are realizing that we need to take time to make sure we are taking care of ourselves mentally and physically, as well as taking time for each other as husband and wife. We need to be healthy ourselves to be there for Maliyah. And like in a marathon, we need to pace ourselves. How I wish I was writing this from the comfort of our own home on Kauai, but that is not the case.
Last Wednesday we had hopes that we may be able to go home as early as Friday. However, on Thursday and Friday Maliyah started to spiking fevers of 102+. They once again drew labs and cultures to find the source infection. On Saturday night I noticed that her belly button was red and super sensitive. The next day, since the labs were indicating that there was in fact an infection and the cultures were coming back negative, we decided to get a CT scan of her abdomen to see if there were any more abscesses growing. When we got back to the room, I noticed what seemed like poop on Maliyah’s gown. Upon further investigation, I noticed drainage coming from her belly button. Now, before I go any further, consider this your fair warning. If you do not want to know the graphic details of the findings - please skip to the next paragraph. Once the surgeon was notified, he came as soon as he could. He proceeded to take the steri-strip off of her belly button that was left over from her laparoscopic surgery. Once he did, her belly button erupted in a mixture of pus, air, and poop as we watched in stunned disbelief. Here we are with Maliyah yelling and screaming as she sees the looks on our faces, just trying to figure out what we just saw. According to the results from the CT scan, there was a large 8.5 cm abscess under her bellybutton and 3 other smaller ones through out her abdomen. The abscess under her bellybutton had just started to work it’s way to the surface. Once it initially drained, the drainage started looking like a mixture of pus and poop, which was pretty confusing to me. According to the surgeon’s explanation, it looks like the abscess might have worked its way through some small bowel which then adhered itself to the bellybutton - making what they call a fistula, hence the mixture of pus and poop…. I don’t quite understand it myself but I guess the plan is to let it drain on its own and hopefully the abscess/fistula will heal from the inside out. Why can’t they just go back in and clean it all out? I asked the same question. It turns out that when the abdomen is in an active inflammatory response the intestines become one fragile, matted, sticky, mass of intestines, making it almost impossible to do surgery without causing more harm. As long as Maliyah is stable, meaning acting fairly normal, with stable vital signs, they are going to try to let her body do the healing. If she ever was to become unstable - ie lethargic, high fevers, hypotensive, tachycardic - surgery may be our only option. Let’s hope and pray that the latter never happens.
All the progress we had made last week with Maliyah walking around more came to a screeching halt as the fistula drains and bubbles with every movement. This has been incredibly painful for her making walking almost unbearable, so we have resorted to roaming the hospital halls in her little pink car. She is just now starting to walk a little in her own hunched over granny style way. It’s times like these that I see what a fighter Maliyah is. Thankfully though, her fevers have come down and have been steady for a couple of days. If her fevers stay down for a few more days, they may consider discharging us as long as we stay close by (meaning staying on Oahu) for monitoring. I guess we will see…
We don’t know what the future holds and it’s probably a good thing we don’t. We do still trust in God to be there for us in time of hardship and to celebrate with us in our victories. We want to thank everyone for their love, prayers, and support during this whole time. It means so much to us. Thank you also for all the gifts and generosity you have shown us. All around Maliyah’s room she is surrounded by tokens of your love every day. We could not have done it without you. In the mean time… our little miracle fights on.
