Infection Update

Well I have not had a chance to update anything other than short little summaries since we went home from Charleston Sunday evening. This has definitely been the roughest time for our sweet little boy, which seems crazy after coming through 2 open heart surgeries with flying colors. But he had a great trip home, slept about 6 hours and woke up crying pathetically early Monday morning. Since then it's been a little bit of a nightmare, made bearable by dear friends and family and the knowledge that ALL of this is not a detour in God's plan...it IS His plan.

He's normally not just a good baby, he is an amazingly happy, contented, inquisitive bundle of babbling and giggles. Sunday he was back to that...Monday morning we couldn't recognize him. We couldn't comfort him, he wouldn't even smile for his brothers, who he adores--he would settle for short periods when we fed him and walked him. Glenn was home with me to help us get settled back in and keep up with his med schedule, but when we called Dr. Raunikar's office they wanted to see him right away. He screamed through that whole appointment, where they took chest xrays and an echo....nothing showed up except a lot of gas. Dr. Raunikar and Dr. Stoeber, Brandt's pediatrician, were in agreement that we could start a pretty high dosage of ibuprofen since he was allergic to the other pain meds we would normally bring home. (But he had been off all his pain meds other than Tylenol for over 24 hours before we went home, and was fine.)

Monday night I got him to sleep for just a couple hours at a time in his crib, but had to call my Mom by 5:30 to help me with him because he could not be calmed again, and we needed to get Glenn off to work and the boys off to school. During the day he seemed to get happier again, but we could not put him down in bed at all without him screaming in pain. So Tuesday night Glenn's Mom spent the night to help us get some sleep and he again just had to be held. During this whole time he had no fever, he would eat--mostly to soothe himself, it seemed--he was going to the bathroom, his color and breathing seemed normal other than when he was in obvious pain he would hold his breath and breathe in grunting sounds. In other words, he did not have any of the normal signs of infection they tell you to look for...


I was ready to tear my hair out from listening to him hurt and not being able to do anything. Other than the ibuprofen which seemed to ease his distress a little, we could only hold him and rock him and hope it got better. He just looked at me like, "Mommy, help." The other boys kept asking about Christmas decorations and when was Brandt going to stop crying and start laughing at them again. So many people offered to help, but we were trying to keep him quiet and away from infection, so I didn't know what to ask people to do. We are incredibly blessed with family and friends who have cared and made themselves available for prayer, support and encouragement. You are making a difference!! I feel I need to send a huge disclaimer to everyone that I'm so sorry I haven't kept in better touch, even though we've tried to keep everyone updated as much as possible through various channels.

So Wednesday morning I was nervous about trying to take care of little man by myself but also feeling terrible to keep asking for help...like, it's just a crying baby, I should be able to help him and start getting some other stuff done, too, and it shouldn't be such a big deal. But as I went to change his pjs and diaper, I noticed he had started to claw at his incision with his hands. I got clothes back on him quickly because it wasn't time for the steri strips to come off yet...he continued to try to rip the snaps off. I tried to see if there was drainage or redness but couldn't see anything under the steri strips. I did notice that a lump had formed at the bottom of the incision. By then I was slightly afraid I was hallucinating because he had been crying so long, and he'd been all checked out, and all his heart function was fine, that I called Glenn to be sure that lump hadn't been there before and I just hadn't noticed. He also didn't remember any such lump--I had a pediatrician appt scheduled for that day anyway and figured I could talk to Dr. Stoeber about some different pain med options and have him check out the incision. Since that appt wasn't until later in the afternoon, I went ahead and called Dr. Raunikar as well just to be sure the scratching and clawing and a small lump were a normal part of the healing process.



He was at a different office that day--but I have to say his office does an amazing job of communication and returning messages. He called me back quickly and he was absolutely certain the lump had not been there on Monday when he examined the incision. We agreed that I would keep Brandt's pediatrician appt, and Dr. Stoeber would call Dr. Raunikar after he took a look at it. Dr. Stoeber's office also got me in with no exposure to other patients and he knew right away that fluid was collecting in the lump and called Dr. Raunikar directly. Oh and Brandt was howling throughout this appointment also. Just to give you a feel for the anxiety level here. We weren't sure if a problem was developing whether we would need to get to the cardiologist office or the local ER, but Dr. Raunikar asked that we let one of his associates take a look at it to help us decide where to go for treatment. Across town to the cardiology office...



Dr. Lucas and Dr. Horne both agreed pretty quickly that some kind of infection was setting in. They actually peeled back the steri strips and wow, there it was, drainage and pus. Why hadn't I done that--but all our post-op paperwork said not to take the strips off...certainly I thought if there was drainage it would have shown up around the strips. I had let the advil run out of Brandt's system, and felt like such a mean Mommy but I felt it more accurately reflected how miserable he had been the past 2.5 days, and I also realized it could be masking a fever...he still didn't have one!!! They contacted MUSC and Dr. Bradley was in surgery at the time, but one of his staff agreed with our local cardiology team that we needed to return to Charleston as quickly as possible.



Glenn was on his way home from work but shocked to hear we needed to head back to MUSC. Dr. Horne helped me try to calm Brandt and get the Advil started again but advised he was going to need heavy dosing of antibiotics at the least and a lot more pain meds than advil. I asked a couple times if this could have been causing his discomfort, and now that the infection actually showed up on the surface, they agreed it could definitely cause pain and agitation like we had been experiencing. Dr. Bradley would be able to examine the incision and decide on further treatment and cleansing from there. I truly feel the care that this cardiology team demonstrated just in taking the time for extra communication and attention to detail made a huge difference in diagnosing what certainly was NOT gas and getting him where he needed to be to stop the spread of the infection.


OK, so a four hour trip late at night, the week before Christmas, was not on my agenda for Brandt's recovery process. Apparently we do have a local pediatric surgical team who could have opened the little lump but we really didn't want him to be away from a team who specializes in this kind of development all the time, and who knows our baby and how he SHOULD be responding and healing. I mean, this was only 1 week post-Glenn. Plus Dr. Horne seemed to feel that Dr. Bradley would most likely want to open the incision himself to evaluate the extent of the infection. No problem-- we would drive! And, I hoped, have a quick wound cleansing, a good dose of antibiotics and head back home...


We thank the Lord for safe travel--Melissa from Cross Bridge texted me before I even had a chance to think about where we would stay and worked that out yet again--with no notice. They admitted him back to 8D, the recovery floor, and had to start IVs and take blood. We got there around 9:30, and by 11:45 everything was done except we were still waiting on pain meds to arrive--I finally went out to the nurses' station and asked if they could please give him something. My heart was just breaking at how he must have been feeling...Glenn and I were having to restrain his little hands and nothing was soothing him then.

One of the MUSC cardiologists came and removed more of the steri strips--by this time the whole incision under the steri strips was an angry red. He felt that was a topical skin reaction, but didn't like the fact that it had become hot to the touch. They had stopped his milk also when we got there, in case of surgery the next day, and I had HAD it with him not getting any help with the pain. So they brought some morphine which did not really make me happy because we told them at check-in he'd had an allergic reaction to it...I guess they decided they would try it with benadryl at the same time and monitor any allergic reaction, but that it would relax him the most quickly and that he needed to calm down-- ya THINK? He did fall asleep pretty quickly after that, and then, of course, 5 mins after he was finally asleep, a radiologist got there to take chest xrays.

THEN he could really relax, and he slept a few hours with morphine and benadryl--they got his antibiotics going and monitored vitals during the night, but at that point we were just waiting for Dr. Bradley's say so on what was next. I was thankful to also get a few hours sleep knowing he was finally a little more comfortable.

When Dr. Bradley arrived with Jennifer to take a look at the lump, they were all SO kind and sympathetic that we'd had to come back. But we told him we'd rather be here than anywhere else at this moment. He removed the little knot at the bottom of the incision and poked around at the incision. He indicated it was very early to see any kind of infection before 2 to 3 weeks post-surgery, but did not like the amount of drainage that he continued to be able to squeeze out. He let me know he'd return in a couple hours and go deeper, still on the recovery floor and at Brandt's bedside, but after they'd given him some sedation so he could try to see where the infection was coming from and how deep it ran. He seemed upset to hear that Brandt had been so irritable since Monday--commented on how great his heart repair had gone to this point. The nurses had just given him some more morphine because he was becoming unconsolable again, so the doctors could see how frantically he was grabbing at his chest. But for some reason (she forgot) the nurse didn't give him benadryl with the morphine this time, so yep, you guessed it, his face had started to swell and he was now scratching and clawing at his face AND chest.

But he couldn't have the benadryl they had ordered for him the night before because he wasn't allowed to eat, and they had ordered it by mouth, not by IV...grrr. We asked the nurse to order IV Benadryl as soon as possible, and while we were waiting for Dr. Bradley to come back we got a message from Cathy, his assistant, that he had changed his mind and was going to take Brandt to the OR to more fully sedate him and be ready in case he did have to open the whole incision or chest. But she still seemed confident that this was just a precaution and to make Brandt more comfortable...it's obviously a much more sterile environment, so I was glad to hear they could just look at it and clean it all at once.