April 22, 2024

Highlights of today include resuming feeds, Fern time, and tummy time “fun”. 

First off, David’s feeds. He still has small flecks of blood in his stool, and for now we’re just going to accept it and resume his feeds. After consulting the GI doctors, they do not think he has a dairy allergy. They said if an allergy exists, it would have shown up when he was 6-8 weeks old. Considering we’ve made it quite far without symptoms, they are under the belief that he has some sort of irritation in his intestinal lining that the blood is coming from. Due to him being on aspirin and lovenox to thin his blood, it could be contributing to it continuing. So, this afternoon, they resumed some unfortified feeds for him so he can get more than just IV nutrition. We’ll start slow again and see how it goes. 

Due to the bleeding, one of the cardiologists was wondering if we could perhaps stop the lovenox. David has been on lovenox since birth due to clots he’s had form in different arteries and veins – some from cath procedures, and others from IV lines (his art line). Before stopping it, David got some ultrasounds today to check on the known clots to see if the lovenox has done it’s job or not yet. It turns out the clot in his left arm has been resolved! The one in his right leg is still there, and occlusive, but collaterals have formed so blood has found new ways to travel. I inquired about the clots in his left leg, and apparently those were resolved on the last ultrasound. Since the ones in his right leg will likely never resolve at this point and everything else has been resolved, it will be a larger discussion with the team to see if he should continue on his lovenox at the dosage he’s receiving. I learned there are two different dosings for it – therapeutic and prophylactic. Currently David is getting the therapeutic dosing which is used to treat clots. The prophylactic dosing is a lower value and used to prevent  clots. 

 Sometime this week David should be having a CT scan to look at his pulmonary veins more closely. There have been some mixed feelings about this scan. Some folks want to hold off unless he starts showing symptoms, and others want to have the information right now. I’d rather have the information since it may determine which direction his next steps may go. There was some talk about trying to couple the CT scan with the full brain MRI he still needs so that it is just one trip off the unit for imaging. However, then it was remembered the reason for postponing the MRI was due to his slow process of coming off the withdrawal medications and not wanting to take a step back on those, so the MRI part will likely not be happening this week. The MRI will need sedation, but since the CT is fairly short, they are hoping to get through that with just some PRNs (one time dose of the medications).

As for David’s helmet consult – they apparently can’t fit him in until May 1st. His provider tried to get him in this week by asking “what if David goes home before then?” but it didn’t work too much. I think it got him on a cancellation list, but no guarantee of getting it down sooner than May 1st. I know his nurse said that they like to start the helmet in the ICU and not the floor, so that’s probably where the concern is coming from because it seems plausible that David will be ready to move off the unit before then.   

Before OT today, Fern came in for a visit, and hung out with David down on his mat. His cables and lines were a little twisted up, so he had trouble moving into many positions, but I think he enjoyed petting Fern again – it was just a lot of work to sit up (especially with not a lot of wiggle room). I know we love when she comes in for a visit. Fern also let us know that in the afternoon, Nutrisource (one of the sponsors for the BARK Buddies program) was going to be on site with all the facility dogs.

After hanging with Fern for a few minutes, OT and music therapy came. After clearing it with his team, it sounds like David can start doing therapies and not worry about his sternal precautions since his bone should be closed by now and the skin should be ok too. He just has the oddest precautions since the bone and skin were closed at completely different times. David was able to do tummy time on his boppy pillow. He actually seemed to enjoy that – if someone helps him hold his head. He does not like it when his head get’s too heavy and the tubes push into his face. His OT showed us how to get him into position on the boppy with all his lines  and she said later this week we’ll have to practice. They also tried tummy time over a big ball – David was not a fan. They then tried sitting him on the ball and bouncing, which he found tolerable but not great. After all the OT fun, he got some cuddles with the volunteer. We thought for sure David would fall asleep, but he stayed awake and read some books. Respiratory came in and gave him nebs which then angered David. These darn nebs also seems to make him upset but he needs those treatments.  

We checked out the Nutrisource festivities this afternoon and got to meet all 3 of the facility dogs – Fern, Inka, and Jersey. We usually see Fern at the moment, since she works unit 3 – CVICU, but we’ve been Inka before since she works units 4-6 and once we leave unit 3 we go to unit 6. However, this was the first time we met Jersey. Jersey and Fern are actually sisters (they have the same dad), and Fern bee-lined it to Jersey when she saw her and was so excited! Jersey works at the Masonic Institute for the Developing Brain (MIDB) which is a separate facility. David was supposed to have an appointment there back in March, but alas, we had to cancel it. I’m sure once we are discharged, he’ll need that appointment again, so maybe David can meet Jersey then! After the party ended, Fern and her mom brought 2 extra balloons up to David’s room for Eli and Anna. They loved them! They also got some tattoos of each pup and color sheets of them too. Today they colored their Fern sheet, and Eli put on his Jersey tattoo (we couldn’t figure out the first one for Anna, so her’s is now a window cling on David’s door – oops). 

Some comic relief for your day with conversations with Eli and Anna and the nurses. 

Nurse: how old are you? 
Eli: Four. In October for my birthday, I’m going to be 6! 

Jessica (to Anna): what’s your name?
Anna: 2
Jessica: How old are you?
Anna: Anna

Now the same conversation with the nurse present one minute later, during which Anna gets too shy and usually won’t speak. 
Jessica: What’s your name?
Anna: Taylor Swift
Nurse: Wow! You’re Taylor Swift?! Do you sing any songs?
Jessica: Do you? “It’s me…”
Anna: Hi! Mommy’s the problem!