MRI Results for Max

For those who are new to this story, check out the previous post. Anyone interested in knowing the latest information stay here. Go to ***** if you just want to know the results.

After the infectious disease specialist reviewed some of what they test for in spinal fluid, he thought it would wise to do an MRI to check for brain damage. From what he said to me, something about the levels was slightly off and they wanted to see what was going on. They also wanted to get a PICC line put in because Max would be needing intravenous medication for a long time, and a normal IV wasn't going to cut it. So on Tuesday morning a NICU nurse came to do the PICC. She immediately found a great vein in his head and was able to route the line without using the ultrasound. A PICC line is a super tiny IV and usually needs ultrasound guidance to get it to the right spot (from what I understand). She routed it from his head to his heart. Yes...I agree...that's freaky.

After the PICC was in, Max went in for his MRI. They had to sedate him because you must lie perfectly still in an MRI and there was no way Max could've done that on his own. They let me say goodbye before they put him to sleep. As I walked back to our room I started to really lose it. I'd been doing pretty good, but something about saying bye to my baby freaked me out. I was so worried about his brain and just tired. The whole procedure was going to take about 1-1.5 hours. I went back to our room, finished crying, and eventually fell asleep. I woke up two hours later in a panic because Max was not back and I hadn't meant to sleep so long. A half hour later (the longest half hour of my life) the nurse told me Max was on his way. I know MRI's and this type of sedation are no biggy to medical teams---I was embarrassed to be so freaked out because I really did trust them; but at the end of the day this is my baby and even poking him with a needle makes me ache inside.

He came back and was completely out of it. Although awake and rooting for food, he was too tired to cry and couldn't latch on for his milk. He tried so hard to eat, but was too disoriented. We worked at it for about an hour before I decided it'd be better for him to sleep it off and try later. At that point he hadn't eaten in 6.5 hours. I could tell he was so hungry, but knew he needed to get back to himself. After he woke up again we worked on getting nursing back. It was like he had to relearn, but luckily by the end of the night he was back to normal.

*******The next morning the specialist came in and said that the MRI showed signs of previous inflammation in the brain, but that it had gone down and all should be fine. Other than that, things looked good. Had we waited to take Max in, his brain could've been more affected and hurt.

Upon hearing this news I was overcome with gratitude. Gratitude for the many prayers, fasting, and well wishes offered on our behalf. Gratitude for the strong intuition that prompted me to get him to the hospital when I did. Gratitude for modern medicine and a great medical team. And mostly gratitude for Max's health. Carter and I felt peace about whatever would be---we weren't holding God to some promise of perfect health for Max. We knew that if Max had brain damage we would deal with it, learn from it, and it'd be good for us. Special needs children bring such a precious spirit to our world, and we were ready to accept anything. 25% of baby's with meningitis end up with some sort of long term mental disabilities, and so we were gearing up for that. However, as of now, it looks like that may not be the case for us and we are grateful.

For now, we'll continue with the course of treatment. He will receive four rounds of antibiotics daily until August 25th. In the next couple weeks we will do tests on his kidneys to see if there's some sort of reflux that could cause reoccurring UTI's. I wish we could just get that figured out right now, but it's important for the infection to be mostly cleared before we do anything with the kidneys. So I'll just have to be patient :)

In the mean time, Max and I will be hanging out at the hospital. I nurse him every 1.5-2 hours during the day and every 2.5-3 hours at night. Between nursing, it's nice to have down time. I'm currently on summer break for school, but I've contacted my professors next semester with hopes that I can begin coursework early. That'd give me lots to do :) Luckily there's a fun music and play room so when Jayden and Jackson visit me we have things to do. There are beautiful gardens and museums close by the hospital too. I've been on a couple runs but realized that wasn't a good idea for my newly postpartum body (bummer) but I can walk without trouble. And when I'm really stressed out and want to cry there's a private corner in the hospital with access to eight flights of stairs. I've really loved that place---climbing the stairs has helped me not worry too much (I realize now that that's kind of crazy sounding. But it works so whatever). Plus it's very private and quiet.

We should be moved out of the PICU to the regular Pediatric floor. I'm not sure when that will happen, but I'll be excited to be free of some monitors.

Thank you so much for caring about us! We appreciate all the love and prayers offered on our behalf. I know that God lives and that he hears those prayers---he is so good and has filled us with inexplicable peace. I can't explain it, I don't understand how, but I know we've been watched over and blessed with strength and peace beyond our own. The Savior gets us and has overcome everything and so we know that all will be well.

While Carter stayed with Max I was able to step out to get some chiropractic help with back pain and a tension head ache. I love chiropractic care so much! 

Putting in the PICC line. 

Jackson taking care of his "Baby Max" in the play room. 

The PICC line dressing

That face kills me. 

Starting to get hungry! 

#stairtherapy

Because when you nurse every 2 hours-ish it makes sense to have gallon sized water bottles. I literally go through a little more than a gallon each day. Soooooo thirrrsstyyy all the time. It's ridiculous.