Poor, Poor Henry

Another short update.

Today, Wednesday, Henry is needing a bit more oxygen again, sadly. As routine a virus as this is, it seems Henry is struggling to get rid of it. It's so frustrating. When the boys were first born and put on ventilators, one of the early goals is to get the oxygen support down to 21%, or "room air". We were very proud and relieved at how quickly both boys got there but it was Henry first. I have felt for a long time that Henry was ahead in the breathing game. He was first to 21%, first to come off the ventilator, first to come off CPAP. So, it seems so strange to me that it's breathing that is keeping him in hospital. We have always been told that their lungs were weak, so I shouldn't feel this way... but I do.

Charlie, on the other hand, is a delight. We have to feed him at 1am and 5am but he sleeps when we leave him to.

(D)

Breathe in the Air

Henry is off the vent again. For now, he is on a nasal cannula to continue to give his lungs some support. However, that they took this step is another great sign that he is getting better.

Meanwhile, Charlie is doing well at home. Feeding well and being a delight.

(D)

Grandad Rob

Aly's dad, Rob, was already a grandfather to twins when Charlie and Henry came along. Laurel and June are the boys' little cousins and they live in Florida with C&H's other cousin on that side, James. Despite this learned expertise, Rob, like the rest of the world, felt unable to help poor Charlie and Henry while they were stuck in hospital and, instead, supported from the sidelines patiently waiting for them to get strong enough to get home, when all the family could really start making tangible contributions and relationships. 

Sadly, Rob's time is running out and, as if this whole story wasn't tragic enough, Rob is going to die before the boys get to know what a fantastic Grandfather they have. 

We wrote earlier about how quickly Henry's illness took over him and there is a parallel in Rob's story. Rob has had heart problems for over 20 years but in the last few months things have moved to a whole new level and now have plummeted to this point, where Rob's medical care is now palliative. Rather than "just" having a device to help his heart, Rob's condition has, this year, started leading to failure of other organs, including his brain. Due to the vascular dementia, Rob now has very few lucid moments. This rapid decline has taken the whole family by surprise and the new reality everyone is living with is that we only have three weeks left with Rob.  Charlie and Henry will never know their granddad. It's heartbreaking to write that but it's true. What they will know is how happy their Granddad was when he found out they were coming and how excited he was to be a Granddad to two babies he watched his daughter and son in law work so hard for.  Charlie and Henry will always know how proud their Granddad was of them. 

Aly's family asked us to post about Rob to let people know his situation.  We had alluded to it but felt the time was right to let people know the gravity of the situation.  We went up to see Aly's family today (Sunday) and Charlie was able to come along. Henry is still in the hospital but is improving and we hope to have him off the vent tomorrow.  

(D&A)

Henry in the Hospital

It's Saturday. I am at the hospital to see Henry. My mum has Charlie and Aly is at her parents' to see her dad.

I wrote about Charlie yesterday so today is a Henry update. The doctor who examined  him is confident that he is getting better and that is a great relief to hear. He is still very sick but this is the first time in days that we have not been told that he is getting worse.

Henry went from nearly leaving the hospital to being on a ventilator in less than a week.
The support needed for his lungs has gone from nothing, to some oxygen through a nasal cannula to the high flow nasal cannula and, eventually, to the nuclear option, the ventilator. 

They stopped his feeds (so he is back on TPN with Omegaven), they moved him to an isolation room (a long way from the door, to extend that metaphor) and he had a terrible time getting the tube down his throat because his airway was swollen from the illness.

But they think he's getting better.

Part of the reason that the doctor feels he is getting better is that the settings on the ventilator that he needed yesterday are looking like they are too much support today. There are also some good signs in the test results.



(D)

Charlie at Home

With all the stress of Henry's health having such a rapid decline, some of you may be worrying that we are not getting to enjoy our darling Charlie being home again. 

I have been trying to work from home because Charlie had some appointments and Aly and I didn't want Henry left alone. Mum is a great help to have but she can't drive in the US and we aren't set up for her to agree / sign on our behalf. So, Aly has been at the hospital, waiting, watching and worrying while I get the significantly less stressful task of helping Mum with Charlie. Thursday was a pediatrician visit (mandatory after leaving hospital) and having an occupational therapist (OT) visit the house. Starting life on ventilators and in a hospital bed most of the time is not ideal for their development. We tried our best but, at home, we are taking all the help we can get to help them develop. So, Thursday was OT and Friday was Physical Therapy (PT). 

Here is Charlie in his workout clothes, waiting to get started. I think he's not so sure about this...

Later, Charlie and I did some "Tummy Time" exercises. It was great but, eventually, Charlie let me know he was done for now;

(D)

Parainfluenza Type 3

They worked out what Henry has. Parainfluenza virus. We have no idea how. Honestly, if I wasn't also Charlie's dad, I would be suspecting the baby that left then came back. Thankfully, Charlie is showing no symptoms. 

There is no treatment for Henry so we have to wait and hope he can fight it off. To make sure that he is getting the best lung support he can get, they have put poor Henry back on a ventilator. 

(D)

Henry is Very Sick, Charlie is Home

Today started with a call from the NICU telling us that Henry needed more oxygen. He has been on an increasing amount of support for over a week now. The diagnosis of pneumonia caused by him aspirating was not sitting well with us this morning and I decided to go in to the hospital and listen to rounds. 

The team were thinking the same. The antibiotics probably should be working by now so maybe it is a virus. Labs were taken and a full viral panel is being done. We are waiting to see what comes back. Tonight, the antibiotics were changed with the assumption that if it is bacteria, it is resistant to what he was on. 

In the meantime, he is critically ill and all we can do is try and support him. It is terrifying. 

Charlie is home. Everything went fine with his tests and he was released. As you can imagine, there was no party or ceremony. I drove him home, dropped him with my mum and headed back to the hospital. 

(D)