Life changing

ivig When your almost-2-yr old daughter is sent to the Emergency Room for suspected pneumonia and dehydration, your entire world stops.

Nothing else matters but figuring out how to make her better. How to make her stop crying from the pain.

More screams. More tears. More kisses from Mommy who was trying to make it better.

The stabs and jabs from the phlebotomist trying to get a vein to start an IV while two nurses held her down didn't help things.

Neither did my conscience telling me I should have pushed fluids more, should have taken her temperature so that I knew exactly how high her fever was. I should have just done more.

Her cries pierced my heart. Poor baby girl didn't have much fight in her since she was so sick. She was admitted to the hospital and I practically let out an audible sigh of relief. She had already been sick for three days. By the time we were wheeled up to her room on the pediatric floor, she had fallen fast asleep and I was equipped with a bag of clothes and toiletries which my husband brought from home so that I could stay with her. There was no way I was leaving her side while she was sick.

When I washed my hands, the mere smell of the medicinal hospital soap brought back memories of the previous hospital stays I had endured.

We were there for two nights and then they decided to send us home, thinking it was viral pneumonia and it would just have to run its course. So even as the fever lingered, she was deemed fully hydrated and that was good enough to send her home.

We got to spend Thanksgiving Eve and Thanksgiving Day together as a family at home. That was the silver lining. The fact that baby girl was so obviously not getting better was the dark cloud that lingered over the yummy holiday meal. She only ate two tiny bites of apple pie. And barely drank anything, as much as I tried to encourage fluids. She was lethargic and still in a great deal of pain. We were worried, to say the least.

A call to the pediatrician was made at 7pm, as awful as I felt about disrupting a holiday evening, I was much more concerned about our daughter to think twice before dialing the number I have memorized for just these situations.

We didn't get a call back for almost 30 minutes, which is twenty-five more minutes than usual for an after-hours call. A sure sign that we most likely did interrupt our pediatrician's Thanksgiving meal.

She was sympathetic and gave us instructions for the evening, asking us to follow up first thing in the morning and get her in for her ER follow-up appointment. And if things became worse overnight, we were to immediately go back to the ER.

Luckily that didn't happen, and we were all able to get a decent night's sleep. However, at her appointment the next morning we were sent back to the Emergency Room, this time for suspected appendicitis since her abdomen seemed to be the source of the pain she was in and the doc was concerned it could have ruptured.

Another day, another ER visit. In the back of my mind I was hoping it actually was the appendix. That way, they'd act fast and remove it and within a day she would feel so much better. Simple x-ray to determine if it was, surgery to get it out. Done and done, right?


Back in the ER she was taken for an x-ray, then ultrasound, then a CT scan to triple check. Turned out it wasn't her appendix at all, but a possible constipation issue. Now, I know my daughter better than anyone in that department given the fact that I am the one who changes 97% of all of her diapers and I must tell you - she has never had a constipation issue. Ever. But having eaten so little over the previous 6 days, I had to trust the doctor and follow her direction.

She was admitted again since her fever was still persisting and because they had not yet been able to solve the issue of her abdominal pain. Again my husband had brought me an overnight bag when he and Little Man came to visit while we were still in the ER triage room. It was kindof an unspoken thing that I would be the one to stay with her. It is blatantly apparent that she favors her Mommy right now at this stage of her life and I am soaking it all up while I can. If her teenage years are anything like mine were, she and I will fight more than we get along, and so I want to enjoy every single second of these baby years when I hear, "Mommy! Mommy!" a hundred times a day coming from my toddler's mouth, head tilted back looking up at me with outstretched arms yearning for me to pick her up.

I always pick her up.

The next morning the doctor came by our room in the early afternoon to speak with us about our daughter's case. She was a different doc from the one who had seen us earlier in the week. She took the time to review our daughter's history, starting from when she became sick up until that point. She then went over her theory on what was going on, what could be the cause of the pain and how she wanted to go about treating her. She was so thorough and detailed, we were confident that our daughter was receiving the absolute best care available.

The nurses were wonderful. They were so gentle with our baby who just cried every time someone came in to check on her. The doctor prescribed a new antibiotic, so on top of the two she was already on, there was now a third sent in via IV to try to kill the infection. We would offer sips of juice, water, or milk, but she rarely drank. The IV was keeping her nourished so we didn't need to push too hard.

The doc watched her fever. They even brought in the Pediatric Infectious Disease Physician. I liked him well enough, but when her fever spiked to 103 on our fourth day and he wanted to "wait one more day" before looking outside the initial diagnosis of pneumonia, I hit my breaking point.

I wanted to scream. I couldn't believe he could possibly say "let's wait and see" while observing my little girl in such heart-wrenching pain. Weren't doctors supposed to act when their patient is sick and even getting worse? Not sit back and wait. My blood was boiling. But I managed a weak smile back at the doctor to cover my anger.

I called my best friend, a nurse for eleven years. I called my cousin, an ER doctor. And then I called my daughter's pediatrician. My question to each of them was something my dad wanted me to ask: should we have her transferred to a better hospital? Even though I knew in the back of my mind that she was at a very good hospital and she was in the hands of extremely skilled doctors and nurses who were doing what they thought was the best course of treatment for her condition.

My pediatrician offered to call the doctor at the hospital. Just knowing that I had advocate on our side was a relief. Maybe they'd put their super duper intelligent doctor brains together and figure out exactly what to do to cure our daughter. I could only hope.

The doctor on our case spoke with our daughter's pediatrician and immediately afterwards came in the room to speak with us. I had gone home to shower and get clean clothes for the next day, so she began talking with my husband about the new plan of action. She, in combination with our daughter's pediatrician, and the pediatric cardiologist on staff, thought they should go ahead and treat her for Kawasaki disease. She had mentioned Kawasaki to us back on the day when she went over our case. It is an autoimmune disorder that sometimes arises when the body has an infection. She was watching for it and now that it had been ten days of fever and baby girl also had several other symptoms of the disease but not all the classic signs. The doc explained that there is no definitive yes or no test for Kawasaki and that as a team they decided it was in her best interest to go through the treatment because if left untreated, it could hurt her heart in the long run.

I was on my way back to the hospital when she called on my cell and began explaining the treatment. It would be a 12-hour IV bag of gamma globulin, a highly purified blood product. They would basically be infusing her with antibodies so that she could effectively fight the infection which was persisting inside of her. It was started very slowly so that if she had any kind of allergic reaction, they could stop the treatment. They would give her a dose of aspirin at the beginning, in the middle, and at the completion of the procedure since it was an inflammatory process which could cause stress on the heart. One potential risk was a coronary aneurism. The whole discussion of what would take place scared the living daylights out of me. With my cell to my ear, deep into the conversation of how things would play out, I walked into the hospital room where our daughter lay sleeping and my husband and the doctor were discussing things in person. Hanging up the phone to continue the discussion face-to-face, we were given plenty of time to ask as many questions as we needed.

Then it was go time.

First they had to put in a new IV for the IVIG treatment. The original IV they had put into her right hand had started leaking a tiny bit. So yeah, after they put a new on in her left had for the new treatment, they had to put another one in her right hand (higher up from the original spot) so they had a tube to run her antibiotics and fluids through. My kid was a ROCK STAR for the phlebotomist. Lots of crying, but that was to be expected. Poor baby isn't even two yet.

The nurse had me give baby girl the first dose of aspirin since she tended to do better taking medicine from me versus one of the nurses. She went right back to sleep and her nurse hooked up the gammaglobulin bag and started the drip. They watched the clock meticulously and were in the room every 15 minutes checking blood pressure and vitals. The process was started at 9:20pm. My husband and I stayed up until 11pm at which time I walked down the hall to the "parent sleep room" so that I could get a solid stretch of sleep since the procedure was going so well. I asked him to wake up at 4am so that he could give the next dose of aspirin.

He slept through it. I woke up at 4:15am to the sound of my daughter screaming down the hall because the nurse had just given her the second dose of aspirin. Baby's got some pipes on her.

We all were able to go back to sleep until 6:30 when I woke up since she was stirring a bit. I couldn't sleep any longer. I couldn't wait to see if the treatment worked. I sat in the rocking chair beside her bed with my computer on my lap, emailing friends and family updates on how she was doing. Luckily for me, I didn't have to wait much longer.

Around 10am our baby girl was sitting up, eating breakfast and there were actually some smiles being flashed around! I was so happy to finally have my daughter back. She started talking and I felt a rush of emotion at hearing her voice again since she had been so quiet during the week she was sick. Hearing her words again was almost like hearing her talk for the very first time.

I gave her kisses. I nuzzled her neck. She let me comb the bed head out of the back of her hair with detangler spray and a soft brush. We put on a clean hospital gown and fresh socks and walked down to the playroom to play. She chose paints, my little artist. Just like her mama.

Two days later, 48 hours after her last fever, we were going home. It was the sweet taste of freedom I tasted as I drove us home to her Daddy and big brother who were eagerly awaiting our arrival. The fresh air smelled so crisp I wanted to breathe in every last whiff of it that blew through my hair. Familiar feelings to me since these were the emotions I felt when I was released from my last two hospitalizations.

Spending a week in the hospital with your toddler really does change your perspective on life. I now can appreciate what a family goes through when their child is battling a disease or even the early stages of cancer. The not knowing what is wrong, the time spent discussing options with the doctor, the tears that fall because you want so badly to be the one who can make it all go away for your child. What we went through wasn't anything close to cancer or a highly complicated childhood disease, but it was enough for me to count our blessings. Over and over again.

Life seems to stop when you or someone you love is in the hospital.

And I don't think it's necessarily a bad thing. At least it wasn't for me.