A living nightmare!

Oh, where do I begin…all I can say is that the last two days and nights have been a living nightmare.

I will just warn you that this is a very long post!

We have had some very long days since I last posted at 1am on Tuesday. Three hours after that post we rushed Ellie to Texas Children’s Hospital because she was burning up with a 103.7 temperature and had shallow, rapid breathing. We got to the hospital and were surprised that we got a room right away. Ellie was such a big, strong girl. She even went potty like a big girl for her urine analysis rather than being catheterized. After 7 hours they decided that she had a urinary tract infection per her UA dip results. They gave her an antibiotic shot of rocephin and gave us another antibiotic to give orally at home. She felt a little warm when they were discharging us, but the nurse said we would have to wait for the doctor to write another order for Motrin if we wanted it. We decided to leave and just give her the Motrin at home.

We got home after noon and Brandon went to work. I sat around with Ellie as she slowly appeared to be getting more ill. She fell asleep on our living room floor on her little sleeping bag and I sat there with her. As she slept her face began to become flushed. All of a sudden she had white whelps on top of the VERY flushed cheeks. Her face became so red that it appeared purple around the outline of her cheeks. I was terrified at that point. I gave her more meds and we went into the bedroom. Her fever was unmanageable with Tylenol and Motrin being alternately administered every three hours. We went from 100.1 to 103 within two hours. I called Brandon (who was out having the other antibiotic filled) and told him we needed to head back to the hospital b/c she wouldn’t drink anything and her fever was climbing.

I had planned on this (God prepared me for this), so I already had bags of clothes, snacks, books and the car TV ready to go. To be honest I was absolutely terrified. The only time I can remember experiencing that type of fear was when the doctor called me that dreaded afternoon in June and told me that Bennett was dying and we needed to get to the hospital immediately. It is a feeling of complete helplessness. You are at the mercy of our Lord and the medical professionals that are here to help. When we arrived at TCH at 6:30 we were greeted with a much different scenario that we had seen just 13 hours earlier. There were at least 300 people (turns out at the point we got our room they had already seen 94 kids, and each kid had both parents and some even had their siblings with them) in the waiting area. We anticipated a long wait, but WOW never expected a FIVE HOUR wait!!! The waiting area was turned into a registration center and the hospital entrance had been transformed into a waiting area for everyone. Vomiting kids…kids in wheelchairs that were pale couldn’t keep their eyes open…kids coughing so violently you actually cringed for them. Brandon and I both refused to let Ellie sit in there…or let ourselves sit for that matter. For 4 hours I strolled with Ellie in her stroller outside the hospital in the misty, damp weather. Brandon stood by the sliding doors listening for them to call our name and the plan was for him to signal to us when it was time. We actually contemplated leaving at a few points, but we had been waiting so long that we figured we should just stick it out. After four hours Ellie fell asleep and I decided to park her stroller in between the sliding glass doors that lead outside to avoid the damp weather and the other sick children. An hour and a half later we were still standing there. Now imagine this…I had only had 2 hours of sleep at that point, I hadn’t eaten in over 24 hours and I had been standing for five hours waiting for a room at the ER. I was crouched down in front of Ellie’s stroller at my breaking point praying to God to please help my baby. I was physically and emotionally exhausted.

FINALLY, they called our name. We went back and the nurse walked us into a room with two beds. I looked at Brandon and I think he knew exactly what I was thinking. There was no one in there, but the bed was messed up, so I knew they still had a patient in the other bed. I asked the nurse if there was another patient and said yes, some sort of asthma issue, but she wasn’t sure of any other underlying problems. STOP RIGHT THERE!!! The rest of the conversation went like this,

Me: “I have CF and I know I shouldn’t share a room with a patient that is suffering from any type of upper respiratory problems.”
Nurse: “Oh, well we usually put patients with autoimmune disorders together.”

I am thinking to myself at this point…I am pretty sure CF is not an autoimmune disorder (not to sound ignorant, but I actually wasn’t sure so I didn’t say anything out loud) and from what I have read I should be careful around other sick people ESPECIALLY people in the ER with serious coughs.

Me: “I don’t feel comfortable sharing a room. My daughter was born three months premature and neither of us can’t risk getting sick. We want to wait for a private room.”
Nurse: “It is your decision. I can’t tell you how long your wait will be, but hopefully it won’t be long b/c you were supposed to be next.”

I didn’t really care as long as we were in a room by ourselves! It turned out to be great b/c we got the same nurse that we had the day before and we really liked her!

The doctor finally came in and told us that they were going to test for RSV (the biggest fear for any preemie parent) and the flu. She mentioned at that point that it wasn’t a UTI b/c her test was negative from yesterday…I was confused b/c the doctor that discharged us twelve hours earlier told us that it WAS for sure a UTI. I was so angry that the first doctor had misdiagnosed Ellie and given her an antibiotic for no apparent reason. Oh well, I really just wanted them to fix my baby. A few hours later (the RSV results take 2 hours to get back) they came in with no answers. They couldn’t find anything…which was good and bad. I was relieved that it wasn’t RSV, but I would have loved to have known what was wrong.

Anyway, VERY long story short she has a virus. We got home right before 6 in the morning and went right to sleep so thankful that we were at home again…until reality hit that I had to be back at the hospital for my appointment at the CF clinic in just a few hours. No rest for the weary!

I was hesitant about leaving Ellie, but I knew I had to make the appointment and her fever was being controlled by the Tylenol and Motrin. Both Grandma’s came over to take care of Ellie b/c taking care of a child that sick is a two person job!

I wasn’t sure about what to expect at the doctor and to be honest I was way too tired to even be scared! I was SO pleasantly surprised by the entire staff. They are definitely the BEST group of medical professionals (aside from Bennett’s angel nurses) that I have ever had the pleasure of meeting. I felt so safe and welcome from the minute I walked through the door. It was a dream come true for a “germaphobe” like myself b/c everyone wore gloves (including me) and used hand sanitizer like crazy! You could have eaten off of the floors in that office!!! I started with the pulmonary function test and it took a little practice for me to get it right. Then I met with the RT (respiratory therapist) and she showed me how to use a flutter (it helps stimulate the lungs to help loosen up the mucus…I think) and talked to me about meds. Then the nurse came in and she was AWESOME! Our personalities were similar and she was so patient with me. Two and a half hours after we got there (we were busy the whole time) we finally met the doctor. I have to say that she is incredible! I can’t even describe what a relief it is to have someone like her on my team. The first thing she said to me when she popped her head in the door just to say hi was, “I can’t wait to get in here and talk to you about your very interesting situation…” Brandon and I just looked at each other and laughed…only me!

Anyway, she was referring to Bennett and how she thinks he really did have CF. She said that even though Brandon’s first limited CF screen came back as having no mutations she still wants him to do the full Ambry genetics screen. She said she wouldn’t be surprised if Brandon was a carrier of a less common mutation and that Bennett had a combination of that with my delta F508 mutation. Her instructions were to get a hold of Bennett’s DNA report from Women’s hospital and have it sent to her…
She said that she thinks we will be able to do our IVF again, but obviously we have some risks involved. She doesn’t anticipate my body being at risk, but she will follow me “very closely” during my pregnancy if it works out that way. I am not going to lie, I was a little disappointed and scared at that point, but I trust her and I know we need to believe in what she says. I want another baby so badly it hurts, but I would never want to put another child through what Bennett went through… EVER…no matter what! So, we will take our time and follow this path that has been carved just for us by Him and have faith in whatever the outcome may be. (I have to say this for all of my friends that have been reading The Shack…this was a perfect time in my life to read that book!!!)

Anyway, she went on to say that I will have a CT scan and blood work next week. She said that she expects to find some issues based on the two mutations that I have and the PFT, but nothing she can’t keep under control with meds. It was funny b/c I must have looked worried, so she said, “Look, this disease started the minute you took your first breath and we have thirty years of catching up to do, even though I don’t have a crystal ball I feel certain saying that with the right combination of meds and a little tweaking based on what fits into your life, we can manage this disease.” I know my CF friends know a lot more about the numbers from the pulmonary function test and I need to learn about that, but she was a little concerned about one of the numbers. I’ll have to study the results and do a little research to figure out what she was talking about ~ I was on information overload that the end of the appointment! So, anyway I feel good about this. It’s real and it’s not going to just go away, but I have the dream team to help me along the way!

Now, I have to run and get ready for a really big night. I can’t say why right now, but look for some really good news tomorrow…

Blessings,
Angie