Hellobee

We left off with D getting discharged, the day before his 5 month birthday! My mantra is that the next time he is allowed to stay overnight in a hospital is when his wife is having a baby.

Brotherly choke-hold…

Mr. Tiger and I were over the moon, and K was very happy to have him home again too, although we did have to have some more discussions about “don’t touch D’s wires!” especially since now there were more of them. I was especially happy about not hiking to the hospital every day (at one point K told me that my job was going to the hospital to visit D – it sure felt that way!) and being able to check on him at night, seeing the boys play together… it was awesome! Thankfully I was able to prolong going back to work for three more months, and when I did go back I transitioned to part time (2 days a week).

We quickly got D on the “take a nap every 90 minutes” schedule that we used when K was little. I had always nursed K to sleep but that of course wasn’t an option for D. We developed the routine of swaddle + paci + rocking, and then careful transfer to a vibrating bouncer. This obviously was not ideal with a 2.5 year old running around, so after a month or so we abandoned it and did nap training to get him in the crib. Thankfully he always slept well in the crib at night, probably because he was getting feeding tube feedings and was never hungry! We used Mrs. Blue’s “crib nest” technique for months before he was rolling out of it consistently and we flattened his mattress back out.

There was definitely a learning curve with D’s broviac line. Although the nurses at the hospital had trained me how to take care of it, our insurance company would often send slightly different supplies, and in much lower quantities! It took some time for us to get everything in a rhythm, and I eventually sat down and typed up an hourly schedule. When D first came home, he got formula for 20 hours a day, an oral rehydration solution (ORS, like pedialyte with no sugar) for 2 hours, an IV for 18 hours, medications three times a day, and had tasks on a daily/weekly/monthly basis for the broviac and g tube.

I also reorganized D’s room to accommodate all of his new medical supplies, scattered supplies for catastrophic events about the house, and made emergency kits for each diaper bag. You can see some IV clamps (which look like scissors) hanging on his mobile in the above picture… if at any time his broviac broke, he could completely bleed out if we were unable to clamp the line! The nurses made me paranoid and I had those clamps EVERYWHERE.

Much like the first time D was home, we had a lot of doctor’s appointments! He had graduated off of the eye problems and the breathing/heartrate problems thankfully, but we still had to see his regular pediatrician, neurologist, the surgeons, and the GI doctors (who would cover his feeding tube and short gut management). Part of D’s discharge plans from the GI unit at the hospital included promises to come visit the clinic every Wednesday for the first few months. Clinic visits always took up an entire afternoon!

Zipped up in his carseat “pod” and hitching a ride on the Moby to a doctor’s appointment

We would come an hour before the appointment so D could get blood drawn, and then often wait for a long time to see the team (Dr. T, a nutritionist, and an NP). Each week they would weigh him and measure him, and use the new data to calculate new doses for his formula, IV fluids, and medications.  D was a good little patient, and after his crash where he got dehydrated in the NICU, hasn’t lost weight since! Over the course of a few months he was weaned off the IV and just onto formula and ORS. This meant that his digestive system could process all the nutrients he needed to survive – a big victory over his short gut syndrome! To be sure he was ok without the IV, his care team left the broviac in place for about 2 months while it was being unused before D was cleared to have the surgery to remove it.

On top of all the other appointments, we were finally able to get D evaluated for our state’s early intervention program, to help us get started on eating by mouth and catching up on developmental milestones. Stay tuned, that’s next!