Glass ½ empty or ½ full

SO… this past week was a bit of a surprise, and many of you reading this will be surprised too. We spent last weekend and start of the week in the hospital. I didn’t tell most people that we were there because at first I thought it was just for 1 night so with everything up in the air and crazy it was completely overwhelming. I also felt like it was just something we had to get through and we would be fine. When I realized that it was going to be longer my focus was completely on Lola and I didn’t want to be missing peoples call or trying to call people back and explain everything that was happening... WHICH was a lot and that we had no answers. Anytime that something goes right, wrong, or different I think it is a test of character. I have always considered myself to be a glass half full kind of person. This week was certainly a test of that in many ways. Anytime you are going through a trial, people say God doesn’t give you anything you can’t handle. Once again that was definitely something I questioned this week. However the one thing I realized the most this week was the fact that I wasn’t alone and when I felt like I couldn’t make it anymore, someone would show up by the grace of God to support me or help me through JUST when I needed them. Coincidences?? I don’t think so. Now that it is over, I can just fill everyone in on what happened in a nut shell. Since we have been home from Africa, we have spent a lot of time lining up doctor appointments and specialists, finding out about therapies, and trying to get into some kind of routines. I started to notice that every afternoon Lola would spike a low grade temperature. I was in contact with the dr. about it and felt like we had a plan of action. We were going to watch it until Thursday of that week and if she still had them, I would let him know. SO on Thursday I emailed and we decided to watch it over the weekend because they were very low grade and if she still had them I would come in Monday. Saturday I called because I really thought I had come to the reason for them, I thought that she had a UTI. When I spoke to the dr. he said that because of the fevers he wanted us to go to the Urgent care. However, when Lola had labs done the first appointment, the nurse at Urgent care sent us to the emergency room because she couldn’t find a good vein and she didn’t want to just stick Lola to stick her, which I appreciated very much. When we got there the first time, I was SO relieved because the nurse that walked into the room, Sue, was someone that had lived on my block growing up. I went to school with her brother kindergarten through senior year of high school. I was SO glad to see her because I always loved her when I was a kid and it is much easier to watch someone you know and trust stick your kid then a total stranger.
SO even better, when we walked into the pediatric emergency room door this second time, who was walking towards us.. the same nurse!!! Thank you God for that because I knew that since Lola doesn’t pee on command, because what 3 year old does, that they were going to have to cath her. AND so I felt better that once again because it was Sue. We were in the ER for a while, and unfortunately for us the Urine culture came back fine. I say unfortunately because that would have been an easy fix, but then they started to do a bunch of tests, including looking for pneumonia, malaria, and her blood work to make sure her white blood cells were ok in case it could be something more serious, thinking a bacterial infection or even leukemia could be a reason. WHAT?! I came in for a Uti how the heck do we get there!!! SO when the dr. said they were going to admit us, it totally threw me off and talk about white blood cells freaked me out. Once again… here comes super nurse to talk me off a ledge. WHICH it is a good thing she did because when we got upstairs had she not I may have just punched the doctor.

Having a child that you know nothing about their birth history is hard. Every time you go to the doctor, a new school, etc., someone wants to know what her prenatal, birth history, and developmental milestones looked like. They also want to know what vaccines she has had. Sadly the “babies home” she was in, wasn’t a great place for her to be and we have no medical records at all prior to when I started sending money for therapy. I am certainly not ashamed that I don’t know the answers, many adoptive parents don’t have them. However as the mom, no matter how you are lucky enough to be one, you feel like you should know your child and you should be able to fix things. AND people try to tell you that’s not true, but you still feel like it is… Some people are better about asking for information then others and at 11:45 at night when I am still a little more then confused how we are being admitted, an attitude about my lack of knowledge did not go over well. BUT the nurse we had in the PICU was awesome and I totally loved her so that helped. NOT to mention that the idiots who designed it thought that it would be acceptable to put a toilet in a cabinet that pulls out rather then build an actual bathroom. ESPECIALLY because it was located AT THE DOOR!!! Not even on the inside wall! Are you kidding me… who wants to go the bathroom when you literally open up a CABINET and have to sit on a toilet that folds out, pretty much into the hallway. Totally ridiculous, but maybe the architect knew it was a great way to give people a laugh and when your child is in the PICU you need all the laughs you can get! SO that gave us plenty of entertainment talking about pulling the toilet out of the cabinet into the hallway to pee

The whole time from the nurse our first night til the day we left we had amazing doctors and nurses. When I was totally freakin out about being admitted Sue, the ER nurse, told me it was better because they could get to the bottom of everything. Little did I know how right she was because all of the specialists I had made appointments to see … pretty much in the fall… saw her while we were in patient. What I had to explain to the dr. our first night, was that specialists have appointments scheduled months out, and they don’t care that I just got off the plane and think my child is the most important… to them all their patients are SO obviously if the first appointment is July or august, you take it. BUT when you are in the hospital, they ALL come to you. Its like room service… only way better then the food they send up with the people in tuxedo’s. We saw the speech person who looked at her swallowing (which is good), the dietitian, the nutritionist, the social worker, the neurologist, the infectious disease guy, AND a regular old pediatrician. WE even saw the maintenance guy multiple times a day.. BUT that’s just because it was just Lola’s Grandpa swinging by on his way from fixing one thing to the next.

We spent a LOT of time just hanging out… monitoring her temp every 4 hours and waiting on test results WHICH made me want to poke my eye out because as far as I could tell we could do that at home as well! BUT they did have cable so I was pretty excited for a lifetime movie! Ha My friends Jess and Christy came to see me which helped pass the time and was VERY much appreciated. I also received a special delivery of an excellent dinner care of a family baptism that Lola and I were SO sad to be missing, which included a piece of my parents cake. Lola was able to experience Grandma and Grandpa's famous frosting. Mommy was nice and shared... a little.

While we were there we were able to meet with the neurologist who ordered an EEG and an MRI. He came up to meet Lola the day of the tests and I liked him immediately. He was great and Lola actually smiled for him. WHICH she does give away smiles sometimes, but at this point she was out of her routine, anxious, and over what she could handle. SO I took that smile as a huge plus. The EEG was no big deal because she just had to lay on the table and sleep. I was more worried about getting the glue out of her hair without rubbing bald spots then I was about the actual EEG test. The MRI on the other hand was a whole different story. They were going to sedate her, which scared me, AND she could not eat. For the sedation, they had to put in another IV. I was super stressed because since we had been home the only person who had been successful with getting a vein was Sue, SO just the thought of them poking her was raising my anxiety. I knew that she was working that day because she had mentioned it previously, so I immediately thought how about asking the nurse to just call her and have her come up. I sat on that idea for a few hours though because I really liked my nurse and I also didn’t want her to think that I was implying she wouldn’t do a fine job. SO the more they talked about the IV and the more my stomach hurt, I decided that I was just going to throw the idea out there. They could say no, Sue could be too busy, a lot of things could happen but if I didn’t ask I would never know. AND I am never really one to speak up for myself but in this case I did and thank God again it worked out. Up she came to put in the IV and of course did a perfect job (Lola doesn’t even have a mark or bruise by the way) When I saw her walk in the door, my stomach ache went away pretty much immediately. She was also able to put it in a place low enough that Lola could have a slight bend in her arm. Her muscles are really tight and when they had it in the elbow before they had her arm taped to a foam board to keep it straight, which she bent. SO the ability to bend her arm a little, I thought meant we might actually sleep. Which we didn’t, but that was better for the sleeping at her EEG so once again… Glass ½ full.

 

Our MRI time kept getting bumped back on Monday from the morning right after the EEG, to 1,2, and actually 3. When it hit 2, I made the decision to cancel because that was approaching over 20 hours with no food. AND that was absolutely not ok with my poor malnourished African with horrible acid reflux. The poor thing was miserable and so I was cancelling the test all together but they were able to reschedule for the next morning. By this point I was aproaching DONE! I wanted to go home. I knew Lola did too because she was really withdrawn. Prior to the hospital her personality was really starting to show and the longer we were in that one room, we were getting fewer smiles and less attempts to talk. SO  I knew we needed to GO . However we were supposed to be fever free for 24 hours prior to leaving, AND Lola needed to provide a stool sample for a culture the infectious disease dr. ordered. AND neither of those things were happening. Since we weren’t cleared to go Monday, Tuesday morning for her MRI seemed fine because there was still a chance we could leave Tuesday evening.

By Monday evening I was completely done. I couldn’t take it anymore being there and decided that we were leaving Tuesday regardless of what anyone else said about it. I mean lets be serious, I am a big talker so I wouldn’t have left but I thought really hard and got really mad thinking about  it, and felt better with my oppositional defiant self, thinking about how I was just going to take Lola and go! Tuesday morning, Lola woke me up with a bang I’ll tell you what. Stool culture here we come… They could have gotten it off her diaper, the sheets, me, the blankets. Really anywhere they wanted. It was horrible because we then had to strip her down, strip the bed and sponge bathe her. She was so cold she was shaking. AND because it was SO fun the first time, she decided to do it again, although the second time wasn’t as bad as the first! I was sick to my stomach thinking about the sedation, and sad that she was so upset. AND once again… who walks in the door, Sue of course! And if that wasn’t a great enough gift with perfect timing, she brought a present she had picked up for us, an owl key chain that is now a permanent part of our diaper bag.

My mom had to be at a meeting that morning, and my dad was wandering around doing his job so when they came to get us for her MRI, I would have been by myself. I was glad that there was a familiar face in the room with me. When we got down stairs my dad met us and was with me when they actually sedated her. My mom got there shortly after they took her in to the test. It was not as bad as I thought it would be actually. The doctor who was with her I liked a lot and I felt really comfortable with her watching Lola’s vitals. It was pretty funny because a nurse came to the waiting room with paperwork, took a look at us and made a very confused face and then walked away. She was probably confused because the only people there were white and the paperwork was for an African. We laughed about that one. When we got back to the room Lola slept for a very long time. My mom sent me to the cafeteria to pick lunch which was the first time I left her. It was really weird. I knew she would sleep, and if she woke up and saw my mom would be fine, but I wanted to be there! It was fine and I had about 2 hours to spare when I got back before she woke up.

In that time I met with the infectious disease dr. who said that basically we were waiting on labs and that we could do that and monitor her fevers at home as long as the neurologist so that it was fine for us to leave. SO we waited for her to wake up, and the neurologist to come talk to us. When we spoke to him, he confirmed the diagnosis of Quadriplegic Spastic Cerebral Palsy, which is what I was told from the dr. in Africa. It was kind of a bummer to have that confirmed because I was really hoping that a lot of her lack of movement was from 3 years of institutionalization and no intervention. That diagnosis means that the injury to her brain (most likely from a traumatic birth) that causes her muscles to not work correctly impacts both arms and both legs. It does NOT mean that her brain does not work, and that was something the neurologist stressed. He said obviously he doesn't know for sure because she doesn't talk but he believes that she understands everything that is going on, which we already knew! He told us he loved her smile, she had very engaging eyes, and that he was impressed by the progress she made in 3 weeks. When I asked what he thought about long term, he said he would not give a prognosis on what he thought she would be able to do because he just didn’t know. The brain is incredible and compensates for itself all the time, especially in young children. He said take her home, expose her to everything, stimulate her like she has never been before, and watch to see what she does. AND so that is exactly what we intend on doing. At first I was really mad because it was not what I expected. It took me a little while to work through being angry. I was especially angry at the babies home because they did NOTHING for her… NOTHING! I could have gone down a really easy path of being mad for Lola and sad for myself worrying about what she might not be able to do… because everyone who knows me well realizes that I talk a big game but I am a HUGE worrier! BUT we’re not going to do that because the reality is she makes my life better just by being in it so everything she learns to do will continue to bless our family. We are going to focus on the amazing things she has done already, take one day at a time, and be incredibly grateful that she is home and getting healthier and stronger everyday. Because if anything, a stay in the PICU will make you realize VERY quickly that it can always be worse!

Here we are going home and walking past the little guy on life support was just another reminder that we have so many reasons to be thankful and incredibly grateful!! Here is a picture of Lola and our super hero nurse. If you're ever in the ER and you get Miss Sue consider yourself LUCKY... and if you happen to be there at the same time as us, we're sorry but we got first dibs!

Since we came home Lola has been getting back into the routine of life and I can report that she is VERY happy to be home. See for yourself... a happier and hopefully heavier little girl!!