Home Again, Home Again

Today there were tears. Happy tears. Tears of answered prayers. Brock had his first pediatrician visit today since leaving the hospital. We have nothing against the pediatrician we are using for the girls, but wanted someone who came recommended, had some experience with brain injuries and would help us be proactive instead of simply reacting once we see delays. The pediatrician, who we had never met previously, walked into the room and said, “God’s got big plans for your little dude!” He listened to our story, our concerns, and was extremely helpful in giving us tips and resources. It was also brought to our attention that Brock had a severe tongue tie. Not a single speech therapist, lactation consultant, or doctor looked into his mouth the entire time we discussed his feeding issues at the hospital. So incredibly thankful for a doctor who is not willing to let brain damage be the answer to every issue he has. While cutting the tie did not solve every problem, it has helped. We left the appointment with several more people to contact and invite on this journey with us. We go back in two weeks for his two month visit…hard to believe!

There were happy tears Monday when we got the green light to leave the hospital. The ventricles had gotten slightly larger, but they were still not putting pressure on his brain, so neurosurgery will continue to monitor his hydrocephalus by having us come in for an outpatient MRI every two weeks. We’ve been full speed since leaving the hospital. Playing catch up with hugs, kisses, and the not so fun things like dishes and laundry…all while trying to have discussions with insurance, pharmacies, hospital financial groups, etc. Oh, and Brad’s back at this thing called work. It’s everything we were waiting for- “going home”…but it’s plain exhausting! No one is sleeping through the night these days- Brynlee wants to snuggle and doesn’t want to be alone, Brielle is cutting teeth and seems to be confused with the idea that you sleep when it’s dark outside, and Brock is doing the normal eat every 2.5 hour thing. We spent an hour or so rearranging things today so now we have a “sleep” room and a “play” room. Praying it means we all sleep a little better henceforth.

For the most part, things have gone smoothly. A few things have been anything but a smooth transition despite our best attempts to have all our ducks in a row well ahead of time. Our first panic attack happened just hours after leaving the hospital when going through all of Brock’s medication that Brad had picked up the day before at the pharmacy. It didn’t take long to realize we didn’t have all of Brock’s medication for his nightly meds. We tried calling the pharmacy, but no one answered. After a drive to Walgreens, a 20 minute wait in line with 10 other people (most who were sick), we discovered that they didn’t and wouldn’t have the medication because they have to send it out and wait several days for it to come in. They had failed to mention this when Brad picked up “everything” the day before. Tears were shed (not like the happy ones today)- and people behind the counter and in line quickly took pity on our situation. I contacted the hospital, but their pharmacy had closed also. With nowhere else to turn, and without an “if/then” practice situation to fall back on, we called the 10th floor and explained to the charge nurse what had happened, and she started calling also. I drove to the only drug store that CVS had mentioned that compounded medication in town, and explained our situation. Their compounder had already left, but they quickly got her on the phone and assured us I would leave with medication for Brock as long as they had it in stock. While waiting for his medication, I noticed customer after customer walk in and get asked personal questions. Not personal questions about their insurance, but questions about their life- their kids, their dog, their Christmas activities. THIS is the kind of pharmacy that I want to use for the next 18 years if need be. I left with medication in hand, and happy, thankful tears.

We’ve spent hours at this point verifying that each doctor that we have a follow up appointment with is in network, as well as checking pharmacy deductibles and generic/preferred medication options. We’ve researched therapy groups in town, and are waiting to hear back from them. We have an evaluation with ECI coming up, but we’ve been told he will likely not qualify since the evaluation is mostly based on performance (not scans) and since he is eating by mouth and tracking, he is not showing developmental delays. The frustrating thing for me as a parent is that I don’t want to wait for him to “fail” before he gets help. I want to be proactive as possible, and the pediatricians we had at the hospital as well as the neurologists all reiterated that what we can do for him the first few years will make a lifelong difference.

People from church are providing meals Monday, Wednesday, and Friday which has been a huge blessing. On top of everything being delicious, it’s more time to sort through all of this stuff, spend time with each other, and get a routine established. A friend of ours contacted a cleaning company (www.maids.com) when we first got put in the hospital, and they are doing three months of free cleaning for us on top of the first seasonal deep clean. They did the initial clean just before Christmas and came again Tuesday, which was wonderful. They do an amazing job! Not sure what they charge for a cleaning, but we will soon find out because I plan on finding a way to continue their services. My sister is also currently staying with us and helping, which has been a complete life saver. She is babysitter, errand runner, anything we need her to be, and I am so thankful it worked for her to be able to do this. All of our dirty laundry was picked up yesterday by a sweet family from church. She even said she’d wash our underoos. We’ve had people offer to stay at our house to watch kids, to help at night so we can get a better nights rest, and help with yard work. Others have dropped off food, toys, or called to check in. We seriously cannot thank each of you enough. We could not do this without you. I feel like we are barely surviving WITH you and your help. Please don’t stop.

Please continue praying for the therapists and doctors that will join us in Brock’s medical journey. Pray that we stay healthy despite everything going around, our lack of sleep, and our occasional outing in public. Thank you so much for continuing to follow our story. We have certainly not passed all of Brock’s medical hurdles. 

With love,

The Morrows