Weekend update

We are nearing the end of the month, and owe you all an update.

Part of the reason for the delay has been frustration, bordering on anger. As we mentioned last time, the plan was for the cardiology team to reassess Henry on the 31st, and decide whether he has gained enough strength for an early Glenn, needs to be listed for a heart transplant, or they need more time. Well, we found out on the 19th that Henry's surgeon was leaving the country for two weeks, to perform charitable surgeries in India. As we talked with other cardiologists and nurses over that weekend, it became apparent this meant we would need to wait another week before any decisions could be made.

On top of being told the best case now had Henry intubated through Easter before a decision was made, Paige and I have not really been able to get comfortable. A day after Henry went on the ventilator we moved rooms to be closer to the cardiologist desk. Henry had spiked a fever - which came back down in 15 minutes - and his heartrate jumped to over 200 bpm. At the time, the nurses felt he needed closer attention, so we moved down from the PICU room we had been in for well over a month. Last Thursday, we moved again to a smaller room, only to be moved again overnight into a double room. Though we are glad this means Henry doesn't need as much attention, and we are rooming with some familiar faces, the space is cramped. We've had to ask for more chairs every morning we show up (as they seem to disappear in the night). The room does have a window, but it is frosted over and faces a courtyard that doesn't get any sunlight. 

On Friday, Henry had more blood work showing no change in his BNP level (a blood marker that can be an indicator of heart failure). The level is much lower than his highest peak, so we are grateful for that. His echo also showed slight improvement in areas of his heart as well(function, not as large, less leakage). By Saturday, our frustration was beginning to show, including a flash of "angry" Paige. The attending doctor made some comment about all the baby stuff on the floor and "how it must feel like home". Paige quickly turned to her and said, "I wouldn't know since we have never been home." (First time I made a doctor go quiet J) Hopefully, this has helped the doctors realize that all we want is for Henry to get strong enough so we can go home.

As for Henry, he is doing really well! He is tolerating his feeds and is growing - a lot! As of today, he is up to 4.735 kg (10 lb 6 oz)! His last echocardiogram on Friday also showed some slight improvement in his heart: the function looked slightly better, as did the leakage in the tricuspid valve. So far, the ventilator seems to be doing what we wanted it to do. Henry is wakeful at times, just not quite as much as before he was intubated. He is on quite a bit of drugs, including opiates and anti-anxiety meds. As parents, we are concerned by the amount of narcotics Henry is needing to keep him from getting too restless on the ventilator, but we have been assured that (so far) he on relatively low doses of his fentanyl and methadone. We did have a doctor a week ago who basically "prescribed" for Henry to be held each day. I think this has helped him keep calm during the days when Paige, mself or Nana are there to hold him. It's not very common for kids on ventilators to be held, and it takes at least two nurses to move Henry to our lap - and we had better stay put for over an hour.

We do now know the cardiology team will discuss Henry again on Tuesday, to take a more in depth look at how he is doing. Since Henry hasn't shown a decline, the doctors aren't going to make a big decision on Henry, as they did two weeks ago. Most likely, with his surgeon out of the country, they will look to see which path Henry is starting to veer towards - transplant or Glenn. It will be another week before we know for sure, but hopefully we can get an idea of which way we are headed. In the meantime, we are hoping that Henry continues to put on weight, grow, tolerate his feeds. No official word on when the doctors will do another echo, but most likely it will be on Friday.

We appreciate everyone's support, thoughts and prayers. These past couple of weeks have been incredibly hard and stressful on Jason and myself, and we are hoping this will have been what Henry needs.

The Sleepover

It has certainly been a long couple of days. I returned to Topeka to work in the office Monday and Tuesday, and was already planning on returning to Kansas City Tuesday night. My mom had gone to the hospital to sit with Henry both days, and Tuesday afternoon she texted me to call her. Henry's hemoglobin level was low so the doctors ordered a blood transfusion. With normal, healthy kids' hearts, doctors will typically allow a low level of hemoglobin, but for babies with hypoplastic left heart syndrome, the doctors prefer to not let that level drop too low, hence the blood transfusion.

The nurse was also concerned by his breathing, which started getting more rapid and labored on Sunday, so ENT came by to look at his throat. Henry had been pretty raspy (and snoring!) since his cath lab, but ENT said they saw no issues, and confirmed that there are no signs of vocal cord damage! A plus for Henry!

Jason and I got off work Tuesday and I came home to finish packing and we called up to the hospital to check in our little man. We got updates on his ENT and some other lab work done. All was well so Jason and I headed to dinner, and I left to come back up to KC from there.

I showed up to the hospital as the doctors were doing the evening rounds and was greeted with, "Oh good, you are here so we can give you an update" - not exactly what you want to hear. Henry had a bloody stool, so the doctors ordered an abdominal X-ray. They found a concerning spot, so the doctors decided to stop his feeds. Then Henry had another bloody stool. The doctor came in and ordered blood work but the nurse was unable to draw blood from Henry's PICC line, so we had to wait for some declotting medicine to unblock the line and draw the blood. While waiting for that, I went back to the Ronald McDonald House to wash my face and grab a pillow and blanket. I got back to the hospital, and they also did a prick on his foot to do a blood culture (typically done when it is thought there may be NEC and/or pneumatosis). Jason decided to head on up.

For the first time since his surgery, we decided to sleep in the room with Henry. We were able to get a little bit of sleep alright during the night, despite us getting a noisy teenager roommate at 2:00 am. (We'd have more sympathy for the kid, but he whined more than Henry.) At 6:30 am, Henry had another X-ray. The spot the doctor and radiologist had thought might be pneumatosis looked better, but was still showing up.

Jason and I slept on and off until noon. We left for lunch and I took a nap at the Ronald McDonald House while Jason went back to the hospital. While we were gone, they did more blood work on Henry. His BNP level was significantly higher than Sunday, indicating excess work by his heart. The doctors increased his milrinone and ordered an echo, which confirmed a decline in function from his last echo on Sunday.

Throughout all of this, Henry has been a real trooper! I am sure it has helped him that Jason and I took turns holding him all day. He is currently on antibiotics and is receiving TPN (basically glorified sugar water with calories and nutrients) as well as some lipids, so he hopefully won't loose a lot of weight since he will most likely be on bowel rest (no food through the stomach) for about a week.

Some insight we did receive today, is that the doctors like the babies to be at least 5 kg, as well as at least four months old, for the Glenn surgery. Henry weighed in at a whopping 3.925 kg Tuesday morning, before all of this went down. We hope Henry continues to put on weight so he can be big enough for his second surgery once he turns four months old.

I think right now all I really want is for our son to come home. We have a lot of milestones to hit and bridges to cross before we get there. We know this will likely not be the last setback, but hopefully Henry can continue to come through these trials stronger than before.

Thank you for all of your continued thoughts and prayers.

Another week

I woke up this morning realizing we haven't updated the blog in a week. So here is an update!

Last weekend, Henry lost a little weight, but never went below the magical 3.5 kilograms that he had hit a few times but could never seem to stay above. There was some discussion on if the milrinone  needed a carrier (IV fluid) and finally it was decided that yes, he did, to help prevent his PICC line being clogged up. Well Monday I showed up and the staff was treating his PICC line for a blood clot. Thankfully he only needed one dosage of an anti-clotting agent.

One of Henry's fabulous nurses organized his stuff for us! We had been just throwing stuff under his crib and by the window. Apparently we could have been using the empty closet. She used the many containers we have accumulated and labeled them for us. I had some small tears, as it made it feel more like we were home.

On Tuesday Henry received his two month vaccinations. The poor little guy received three shots. He had two nurses that day, so they did two shots at once then did the third quickly after. Not a happy camper after that, but who would be? He had a lovely neon orange and pink band aids put on his thighs. 

Wednesday was a little test for Jason and myself. I came back Tuesday night so that I could drive up to Lawrence the next day for a training conference. My mom went to the hospital and spent the day with Henry. Henry was a little less himself, as his shots had very much whipped him out. He had blood work done and it all came back good!

(Me with Henry after being gone a full day)

Thursday Henry had his weekly echocardiogram. He did very well and slept through most of it, so we didn't need to sedate him. The PICU fellow thought the results looked good but wanted a pediatric cardiologist to give their final opinion. The cardiologist thought the echo looked the same, if anything, slightly better.

Finally, some of you may know I was running about a 5K a month prior to Henry entering my world. I stopped last year when I sprained my ankle, and then, well, I was pregnant and having morning sickness and my energy was just zapped. Anyways, there is going to be a 5k in May that the proceeds will benefit chdfamilies, a non for profit organization that helps congenital heart defect families at Children's Mercy Hospital. They provide care packages and also have a summer camp for the heart defect kids. I have created a team for Henry! It is Henry's Heart. The race is in KC, and you can walk, run a 5K, a 10K, and for those who can't join us you can do the race virtually! Here is the link https://www.eventbrite.com/e/run-for-little-hearts-10k5kkids-dash-registration-11699727199?aff=eac2

Thank you all for your thoughts, prayers, love and support! I personally will admit I did not have a good weekend after hearing the news that Henry will need to stay, but I am doing much better and have appreciated everyone's support! (And so does Henry!)