Overwhelmed is an understatement, but because I don’t have a word to explain what we’re feeling, I’m going to go with it. We’re overwhelmed by the stress we’ve been going through, but also overwhelmed by the love and support we’ve received from our friends and family. I just want to start this post by thanking everyone who has donated, shared, started fundraisers or even just reached out to say they were here for us and offer a prayer! When the skies seem dark, it’s those special people that can light up the sky like twinkling stars!
Now, on to our sweet little warrior! Brenden is doing pretty great. I mean, he’s got a long way to go to be like other “normal” kids (but normal is boring, anyway, right?)…but he’s been improving in basically all areas…
- New findings since my last post: Brenden doesn’t really blink (he 1/2 blinks mostly and once in awhile does a full blink) so he requires artificial tear eye drops, he has his days and nights mixed up (I definitely remember Juliana going through that too), and his circumcision has healed well! We have been slowly reintroducing breast milk to his diet (he has been on Monogen- a special fat free formula since he was cured from the dreaded C-word-leaky-lymphatic-system)…he’s at 50/50 breast milk to formula currently.
- He’s getting PT and SLT in the NICU. It’s not something that they necessarily see happen a lot…those therapists are usually more concerned with the PICU kids. However, we fought for it, because I know the earlier you start, the better! The difference since starting therapies has been extreme. Brenden can move/stretch out his arms and legs with more strength than before…and his mouth/facial muscles have gotten MUCH stronger. He can hold on to a pacifier now without us having to hold it for him (until he falls asleep or gets tired). His mouth used to hang open and now he can hold it closed. The therapists think there’s a good chance he can learn (in the future) to eat for pleasure (although his gtube may always be utilized to ensure nutrition).
- His tracheostomy and gastrostomy have healed well and quickly. We are learning how to do all types of trach care and practicing on both Brenden and a simulator (HAL) to help us prepare for going home. On 6/27/18, we (Mike & I) completed our first successful trach change! He is currently on the same vent settings (cpap with pressure support) as he was before the surgeries but he seems much more comfortable. Historically, cpap is not successful for kids like Brenden, but it seems to work well for him.
- We toured rehab facilities and decided he will go to Blythedale. Honestly, I did not decide this…but we are being strongly encouraged to bring him there for a few weeks. Blythedale is a great rehab and I don’t have anything negative to say about the place besides the facts that it’s very far and the ratio is 5 babies to 1 nurse. I just wanted to bring him home (where the ratio shows he’d get more attention). We were told we had that option to bring him home. However, we had a “family meeting” with hospital staff on Friday and they feel since Brenden has not been stable for a very long time, he would benefit from an in between place for a few weeks. If there was an emergency, there are doctors and nurses there. Lots of babies go home from the NICU and then are forced to return and those that go to rehab, usually don’t. They praised us for how far we have come in learning to care for his special needs, but pretty much said they’re not comfortable with his stability yet. While I understand their points, it kind of felt like my chest was turned inside out. I just want to bring my son home. He isn’t like other kids and a few weeks isn’t going to change that. He’s going to get nursing at home…and I feel the only way for us to learn how to really care for him is to REALLY care for him! But their argument is that while we have been training, we’re not nurses and what if a nurse doesn’t show up, etc. We can train more at the rehab. My argument is that we’re going to have the same issues when we leave Blythedale because Brenden will still be Brenden and it’s better for us to learn now while I am on summer break…and this way both Mike and I can consider going back to work in the fall. Just going to the hospital and home each day is exhausting and has turned our lives upside down, besides the financial portion. Now we’ll have to go even further than E. 68th St & York, but to Valhalla, NY. It will take 1 1/2 to 2 hours each way. We can’t take public transportation so that means when Juliana has swimming class or anything, we both can’t go to Brenden that day & we can’t stagger visits as we have been. Juliana can come, but as much as they say it’s “more or a home environment than a NICU”…it’s not home. Plus, I’m sure being in a hospital with a 2 1/2 year old will be tons of fun. I mean, you’re not fooling anyone with your bushes cut like elephants, giraffes and dolphins…I know what you guys are! lol
But I guess I don’t really have a choice now. It’s not about me. It’s not about Juliana, although it hurts me that her needs are also pushed to the side. These people got us to this point with Brenden and Mike says that if they are concerned and think he needs more time, and that this would be in “Brenden’s best interest”…then maybe we should just listen… 🤷🏻♀️😓 I know he’s right. It’s just hard. Plus, the only other MTM mom in the 5 boroughs put 2 of her son’s into Blythedale…so they have a level of familiarity with MTM (although it was 8 & 10 years ago). - In the meantime, however, there are no available beds at Blythedale! Lol So Brenden was put into a step down type NICU room yesterday, which is good news. It will be at least a week or two more to set up receiving the equipment/supplies, setting up home nursing, figuring out which doctors we go to once he’s discharged, etc. We are also actively apartment hunting (we think we found one!) and hope to be moved within 2 weeks, too. So within a few weeks, if there isn’t an opening at Blythdale…we’ll have to reconsider what the hospital said about him needing more time. In my mind, if Blythdale doesn’t take him in 2-3 weeks he isn’t going…but we’ll see.
Stay tuned!
jesmogrego 