I am quite thankful to admit that I missed all of the very worst parts of the hospital visit. Jeff endured the late night drive to the ER, the barrage of tests, which included blood draws and x-rays, the insertion of an IV (and a urinary catheter!!), and finally admission to the hospital. By the time I arrived both Nic and Jeff were sleeping peacefully and all I had to do for my first two hours was to wake up Jeff and take his spot in the aforementioned uncomfortable sleeping chair, where I distracted myself with my iPod and a book and tried not to notice the cords dangling off Nic's body or the monitors beeping and flashing numbers and displaying wiggly lines.
In the late morning I received a visit from the hematologist that brightened my day and made the rest of our stay much easier. This is when the hematologist told me that the results from last weeks barrage of tests were in and that he was quite hopeful, but not entirely sure, that he would be undiagnosing Nicolas with sickle cell disease, and instead diagnosing him with something closely resembling sickle cell trait (PRAISE GOD). However, until he consults with some more experts and possibly does one more round of tests he does not feel comfortable doing so. Thus, for the time being Nicolas must keep his diagnosis of probable sickle cell disease and maintain all sickle cell disease precautions. Thus, we had to stay in the hospital, but we could do so with a good certainty that whatever Nic was experiencing was not sickle cell related and was probably just a regular childhood virus. After that I was so stinking happy I really didn't mind being in the hospital. Of course the food was bad, and Nic was on so much medication and clearly uncomfortable during his shots, and our room had no windows so it was awful to sit in, but knowing that this visit would probably be our last for a very long time...well, it just wasn't so bad.
It helped that we were at an incredibly nice hospital. The staff that served us was excellent. Our first day nurse was actually transferred down for the day from NICU for one day only and she and I got to talking and it turned out that she had also lost children to a medical condition caused by a recessive gene, so I had a chance to learn about her boys, both of whom she lives each day without. Then I got to talking with the woman who cleaned our rooms, and it turns out that she is from Ghana and that she is hoping to adopt her brother's children and bring them to the US in two or three years. I explained some of the US and IL side of the adoption process to her, and learned about her kids and those that she hopes to bring home. Then we found the kitchen and had some yummy snacks...seriously, they do a very nice job of keeping the kitchen stocked for families. They even had one of those cool pod coffee/tea/hot chocolate machines, so I was super hyped up on caffeine all day. I used my extra energy for good, and Nic and I visited the play room a few times, he rode in a car that I pushed up and down the halls numerous times, and we visited the window often. We also got a visit from a therapy dog and from volunteers with bubbles. Jeff and Tommy brought me dinner and came to play for a while afterward, which gave us something to look forward to when the afternoon got a bit long.
While I would be hard pressed to describe our visit as fun, I could describe it as "fun for a stay in the hospital." Once we got the good news and I stopped feeling particularly concerned about Nic's condition, I was able to spend my time focusing fully on Nicolas - something I haven't been able to do much of lately, since I always have two boys around. I miss having one-on-one time with Nicolas. I still get some with Tommy when Nic naps in the morning, but it is rare that Nic is up for long while Tommy is sleeping. Having an entire day together with just me and Nic was actually quite nice.
Our night in the hospital greatly contrasted with the day. It was a long night with little sleep and no comfort for either of us. But hey, we got to go home first thing in the morning. In fact, the nurse told me it was her earliest/fastest discharge ever. I was highly motivated to leave at that point, because I did not want to have to sleep there again.
In the late morning I received a visit from the hematologist that brightened my day and made the rest of our stay much easier. This is when the hematologist told me that the results from last weeks barrage of tests were in and that he was quite hopeful, but not entirely sure, that he would be undiagnosing Nicolas with sickle cell disease, and instead diagnosing him with something closely resembling sickle cell trait (PRAISE GOD). However, until he consults with some more experts and possibly does one more round of tests he does not feel comfortable doing so. Thus, for the time being Nicolas must keep his diagnosis of probable sickle cell disease and maintain all sickle cell disease precautions. Thus, we had to stay in the hospital, but we could do so with a good certainty that whatever Nic was experiencing was not sickle cell related and was probably just a regular childhood virus. After that I was so stinking happy I really didn't mind being in the hospital. Of course the food was bad, and Nic was on so much medication and clearly uncomfortable during his shots, and our room had no windows so it was awful to sit in, but knowing that this visit would probably be our last for a very long time...well, it just wasn't so bad.
It helped that we were at an incredibly nice hospital. The staff that served us was excellent. Our first day nurse was actually transferred down for the day from NICU for one day only and she and I got to talking and it turned out that she had also lost children to a medical condition caused by a recessive gene, so I had a chance to learn about her boys, both of whom she lives each day without. Then I got to talking with the woman who cleaned our rooms, and it turns out that she is from Ghana and that she is hoping to adopt her brother's children and bring them to the US in two or three years. I explained some of the US and IL side of the adoption process to her, and learned about her kids and those that she hopes to bring home. Then we found the kitchen and had some yummy snacks...seriously, they do a very nice job of keeping the kitchen stocked for families. They even had one of those cool pod coffee/tea/hot chocolate machines, so I was super hyped up on caffeine all day. I used my extra energy for good, and Nic and I visited the play room a few times, he rode in a car that I pushed up and down the halls numerous times, and we visited the window often. We also got a visit from a therapy dog and from volunteers with bubbles. Jeff and Tommy brought me dinner and came to play for a while afterward, which gave us something to look forward to when the afternoon got a bit long.
While I would be hard pressed to describe our visit as fun, I could describe it as "fun for a stay in the hospital." Once we got the good news and I stopped feeling particularly concerned about Nic's condition, I was able to spend my time focusing fully on Nicolas - something I haven't been able to do much of lately, since I always have two boys around. I miss having one-on-one time with Nicolas. I still get some with Tommy when Nic naps in the morning, but it is rare that Nic is up for long while Tommy is sleeping. Having an entire day together with just me and Nic was actually quite nice.
Our night in the hospital greatly contrasted with the day. It was a long night with little sleep and no comfort for either of us. But hey, we got to go home first thing in the morning. In fact, the nurse told me it was her earliest/fastest discharge ever. I was highly motivated to leave at that point, because I did not want to have to sleep there again.
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1 comment:
so excited to hear the news about the potential change in diagnosis! I have been praying for him and anxiously waiting for an update. Will continue with prayers!
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