Thursday, February 13, 2014

Mystery Ailment: Part 3

This is the last post of updates on Desmond's illness. Click through to read part 1 and part 2

Once we found out all that was supposed to happen at the hospital, we prepared ourselves for the onslaught of tests that our little Desmond would have to endure.

We hadn't eaten dinner yet and the cafeteria closes at 7:15 so Ben ran down to grab us some food while we waited on x-ray. We took turns eating and being by Desmond's side. Thankfully x-ray was done in the room and was rather quick. 

After that Des was wheeled down for his ultrasound. By then he was really tired and ready to be done, sadly we were just getting started. The ultrasound took a long time and he had to lay on Ben to stay still. He got so upset that the tech wasn't able to find his appendix as you have to push rather hard to get the equipment in position to see it. We were informed that this was actually good as the appendix would be inflamed and easy to find if he had appendicitis. 

When we got back to his room we finished eating and turned on the tv to keep him preoccupied until the nurses came to put his IV in. Sadly, the first two attempts failed because he was slightly dehydrated, making his veins harder to get to. They gave him a break before another nurse came and tried again. It was quite the ordeal, and once it was taped on it actually leaked so they had to untape and retape which was painful. It was misery watching him go through all of this and not being able to help.

They started him on IV fluids and thankfully let us wait a while after that to see if we could get him to pee in a cup on his own so we could avoid a 2nd catheter. He had been complaining of pain all day since his catheter that morning. I cheered when we were able to get him to go in the cup, knowing that was one less painful ordeal he would have to endure. 

In between tests and exams I was able to update family and friends on our situation. We immediately had people offering to brave the icey roads to bring us anything we needed. People all over were praying for our sweet boy, we felt very loved amidst a scary situation. 

Ben + I took turns sleeping with Desmond in his bed, the other in the "day bed" that felt more like sleeping on a concrete slab. After a round of fluids they started his antibiotics and we got a few chunks of sleep here and there. There are a LOT of noises in the hospital so none of us could get much sleep. Children have a security monitor on their leg and Desmond's kept coming unstuck, setting off an alarm in the hallway. The IV can only be set for 2 hour increments so that would beep every time it needed to be reset. His bed was an air bed so it would whoosh and groan to adjust the pressure every time you moved and there was a constant rush of air from the ceiling. The nurses also took vitals every 2-4 hours and the nurse he had that first night came in at 2am with way too much pep in her step. She told me he could just sleep through what she was doing, which he was, but then she started to talk to him and woke him up. I was not a happy mama bear. 

4am they started his 2nd dose of antibiotics and I was awake for the day by 6:30. At that point, Ben was in bed with Des and they slept another 2 hours while I sat and prayed and updated friends on Facebook.
{keeping a 2 year old in bed for 15 hours is not an easy task}

That morning we got to FaceTime with Malakai while he was still at Amy's. The boys were pretty excited to see each other.

Dr. R from our pediatrician's office came in that morning to check on Desmond. She said she'd like to see him off fluids to get him to drink on his own. Having him off fluids meant he only had to be attached to the tubes every 8 hours for 30 minutes to administer the antibiotics. This was so great for how stir crazy the poor kiddo was getting. We were able to take him out in the hallway for a walk and in to the play room across the hall. 

Ben's parents were able to come visit and his dad took Ben over to pick up Malakai and to our house for a few things for us as we didn't have time to pack our own bags. Malakai came to visit and was so excited to see us, but more so to see Desmond. They greeted each other with an enthusiastic "Hi, Brother!" Kai was able to go with Des for his first walk around the unit, check out the playroom with us and eat lunch. Ben's parents took Kai back to their place for the 2nd night and he got to play in the snow before it turned into freezing rain.

My parents weren't able to come visit because my mom had a fever plus they live much further away so it wasn't a good idea for them to drive in the snow and ice. I updated them by phone and text when I could.

Des napped and we watched a lot of Disney Jr. Ben's mom left her iPad for him to play with as well. We watched the snow fall non stop outside our window, we were thankful for such a beautiful view.

We did all that we could to pass the time and keep Desmond comfortable and happy. He started to eat better and was drinking a ton by Friday evening. We were still waiting on a culture from the blood they took when they started his IV to see what kind of bacteria he was fighting. That night we all slept much better. It helped that our overnight nurse was as quiet as a mouse when going about taking vitals and hooking/unhooking tubes for his meds.

Unfortunately Malakai + Grandma didn't sleep so well. Kai was complaining of ear pain and couldn't sleep. He was pretty miserable so they brought him to the hospital and Debbie and I walked him down to urgent care on the other side of the hospital while Ben and Grandpa stayed with Des. After a bit of a wait we found out Kai had a fever of 103 when we got back to see the nurse. Of course I immediately had visions of both of my boys being admitted to the hospital with mysterious infections. I was overwhelmed on top of being overwhelmed. During the 45 minute wait in the exam room, Kai fell asleep on my lap.

After being examined by the doctor (who was really great with Kai and even made him laugh) he was diagnosed with another double ear infection. Although an ear infection doesn't cause fever, so he also though Kai might be fighting off a virus as well. We got a new prescription for antibiotics and headed back upstairs to Desmond's room. He had just finished up his last dose of antibiotics.

We ate lunch (thanks to a generous delivery called in by a friend) and waited for Dr. R to come check on Des and let us know if we could take him home. She came shortly and told us his 48 hour cultures were negative and that his most recent labs were much better. His white blood cell count came down from 39,000 to a normal 10,000. Since no bacteria grew on the cultures the diagnosis was vague. We were discharged with a diagnosis of "fever of unknown cause" which is frustrating, but I knew I could discuss it further with his doctor at our follow up appointment. All I cared about was that my baby is well and I get to take him home. We got a prescription for antibiotics and Grandpa went to pick up both the boys' meds and was back just before Des was discharged.

{goodbye snowy hospital}

We got home safely through the snow that was under a thick layer of ice from a storm the day before. Ben carried each of us in the house because there was no clear path through the ice. We settled in and relaxed as best we could.

{Can you tell Kai missed his Desmond?}

On Sunday we were looking forward to a full day at home to recover from all these events when I got a nasty headache. My mom encouraged me to take my temperate and I had a fever. I took some tylenol and waited it out, but felt miserable all day. I went to the doctor on Monday for a flu test and it came back negative. My doctor did say he thinks I have a stomach virus and I'd probably feel bad for a few days. Just what we needed, another illness.

On the bright side, we have amazing family and friends. They've all rallied around us in prayer. Some braved the storms and brought us food to the hospital, and other have started a meal train to bring us dinner while we settle back in at home and recover now that I'm sick as well. It's so humbling to receive so much and be able to give nothing back (at least at the moment), and I'm doing my best to let it be and just feel the blessings overflow as we heal. I know there will be an end to these miserable sicknesses even though it's hard to see through it.

Yesterday morning we had a follow up appointment for both boys. Malakai's exam was simple, his ears looked great! We were also informed that about half of ear infection patients do develop a fever, like Kai had. I was so thankful that he would finally be back to himself.

We originally scheduled with Dr. R because Dr. B didn't have any openings but when she saw that we were there Dr. B "stole" us- which was very sweet and I really appreciated that she wanted to follow through with Desmond's care and give us the information she'd gathered directly.

She confirmed again that nothing grew on the cultures, but she explained that it's actually quite normal to not be able to grow bacteria, even when it's present. Due to the volume of blood you'd have to use to get enough bacteria to grow in a petri dish, it's common to get no growth. So her diagnosis is that he did have bacterial sepsis based on all of his symptoms and his response to the antibiotics. She had even called an infectious disease specialist at Dornbecker Children's hospital to confirm her diagnosis.

It was nice to get information but it was also scary to think that Desmond had such a serious condition. I'm even more thankful for a pediatrician that took the right steps and got our boy well without any complications. What a blessing that Desmond is already so healthy after being in the hospital less than a week ago!

We so appreciate our beloved Dr. B and all the caregivers at Eugene Pediatrics. Malakai especially likes it there because they always let him play with their tools. His favorite is the otoscope and even Desmond got into it and played with the stethoscope.

We came home and had popsicles with our lunch to celebrate a clean bill of health!

Now, after nearly 6 weeks of illness, we are on to getting me healthy and keeping everyone else healthy as best we can in this doozy of a season. Once again, thank you for all your support and prayers!


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