Worse Before Better

Poor K Man had a rough afternoon and evening. He was starting to have to work harder during oral feedings, so they put an NG tube in and gave us that same 15 minute window to try by mouth we experienced when he was first born. The idea is to not make him work too hard to breathe while feeding. Since the NG tube was dropped, he hasn’t taken more than 20 ml by mouth.

He got more and more uncomfortable as we approached evening. He seemed to get overstimulated and agitated very frequently. He had a few strong crying spells that resulted in desaturation and upping his oxygen intake.

Our nurse, who we love, made it clear he needed a silent room to rest tonight and strongly urged I take a Ronald McDonald sleeping room down the hall from the PICU. It is the hardest thing in the world, not being in the room with my baby, but I know it is best for him, as even my coughing may have bugged him throughout the night.

The plan before I went to sleep last night, after yet another fitful episode from him, was to try to reduce his agitation and stress in every way possible. They kept his brace off his feet to give him a break (the least of our medical worries right now – let the boy be as comfortable as he can be!) – they planned to feed solely through the NG tube and up it to his normal 90 ml every three hours.  The nurse also gave him Tylenol to hopefully just help him feel a bit better.

I just woke up to pump and visit him and found the nurse in his room. The little stinker had managed to use his foot to pull at the tubing attached to his IV and rip it out a ways. Nurse tried to put it back in but hit a hard spot and opted to just pull it out. This whole scene, of course, agitated him. The doctor happened to see him in full upset mode and decided, for the first time since we’ve been here, to not only up the amount of oxygen but to increase the pressure of the oxygen as well. It seemed to help him calm and rest more easily.

Doctor also said the IV can stay out for now. The only medication he was on was pepsin, which helps keep young kids from forming ulcers. She thinks he will be fine without. He was also still on a small amount of fluids, but now that he will be getting his normal feeds, as long as he tolerates them, he won’t need the fluids. So at least he is catching a break and won’t need to reinsert an IV at this time (though he may need one at some point again).

I left him resting well in the care of the amazing nurse. I feel so lucky we have had her for the past two nights and am nervous who our nurse will be tomorrow night….

It was the hardest thing I have experienced yet, walking in on a major crying episode while nurse was managing him and settling him, and not being able to do anything about it. I desperately wanted to rip him from her arms and just squeeze him and calm him and make it all better, but I know she needed to handle the situation from a medical standpoint and get him back to a relaxed and stable state. It literally made me sick to have to ignore my motherly instincts. Just like it makes me sick to not be in his room with him. It is so hard to do what it best for him when it hurts my heart so, so much.

The nurse assured me a couple times last night we are nowhere near any point where we need to tell dad “get home now”; however, Arif and I talked last night and he is going to see about making it home tomorrow night rather than Thursday night. We need him. I need him.

This is all so draining, emotionally and physically. And the hardest pill to swallow?  This is still some of the easiest stuff, medically, we will have to handle with him. That is so hard to think about, so I’m trying not to.

It all really hit me, sunk in, yesterday, even before the downward turn: my baby is in the hospital. The adrenaline wore off, and I was walking back to the PICU from the cafeteria.  The pediatric intensive care unit. How overwhelming!  How different from any sort of life I ever imagined as a mother!

I would change many things about this journey if I could – but only if I could still have my sweet, feisty, smart little dude. As much as he causes problems doing it, I am glad he’s still got the fight in him. I’m glad he pulls the oxygen out of his nose every time he gets his hands free – I’m even glad he yanked at his IV. It shows he’s got spunk and strength and fight, which are all the things I hope for him as we move forward in this incredibly scary, unfun medical world.

Eating!

Kiran was stable enough to start taking feeds last night, starting around 10 pm. I am amazed he did as well as he did yesterday, because he went just over 12 hours without eating!

He has taken three bottles and done pretty well. We started slowly and have been increasing the amount with each bottle. He should be able to take his normal full amount with his next feeding. 

He rested comfortably through the night and is looking pretty good this morning. He is still breathing at a fairly high rate, so not sure they will lower the oxygen just yet. 

His daddy is missing us, and we are missing him. I let the doctor know, in no uncertain terms, that if Kiran’s condition starts worsening at all, we want to know ASAP so we can get daddy home. For the time being, it seems it’s safe to let daddy get his work done in DC. 

The nursing staff has been truly exceptional and, as many of you know, that makes all the difference during a hospital stay. 

Keep the prayers and thoughts coming; we so appreciate the encouragement!

Rhinovirus

Kiran’s tests came back. Essentially, he has the common cold, but because of his underlying medical issues, he is having some extra trouble with it. 

We are currently waiting to be taken to the PICU. It is my understanding we will be there for a couple days. This way, he can continue getting the oxygen support he needs so he doesn’t have to work as hard – and we can monitor everything else as well. 

Headed to Hospital

We are currently heading to the ER by car from our pediatrician’s office. Kiran had a high respiration rate episode during home health nurse’s visit this morning. He has continued to have high respiration rate, so we are going in for testing. My parents are with me. 

Of course. Arif leaves town, and Kiran bring the dramatic flair.

Will try to keep blog updated as we know more. Prayers and good thoughts always appreciated. 

Finding joy in the new normal

I still remember how suddenly – and violently – the tears fell as soon as I heard the words: “your baby has a heart defect.”

I was 22 weeks into what had been a normal, healthy pregnancy. I was at the appointment alone, because I didn’t think we were getting any results that day. 

We were moving halfway across the country in just two weeks. 

After a day of painful grieving, I was able to do what I do best when facing pain: focus on the logistics. I learned what I needed to about this foreign diagnosis – tetralogy of fallot – and I did the work to transfer care from Washington to Iowa. 

It is amazing how quickly difficult news becomes your new normal.  It is amazing how quickly you learn the language of heart defects. It is amazing how you become used to the idea of living in the hospital…

It is amazing how normal it becomes to face the reality that you could lose your child. 

I realize it can happen to anyone – the loss of a child – but I would imagine most new moms don’t look at their healthy babies and think about such things. 

It is what my husband and I talked about, just after midnight, in the first moments of 2016. How this would be the year of at least one open heart surgery for our little man. How difficult it would be, to hand him over to the surgical team, to say goodbye not knowing if it might be the last time. 

I can’t imagine what that will look like. But then, I couldn’t imagine what any of this would look like until we faced it. 

I know people get nervous when I say things like this. It makes them uncomfortable – even my husband and I take turns doing it to one another – coming forth with the pat optimistic responses. 

I know he’s strong. I know he has an amazing will to live and a fighting spirit. I know we have a great medical team and a surgeon we trust – well – with our son’s life. 

But that doesn’t change our reality. Open heart surgery is a big deal, and he has a pretty complicated case of a pretty complicated defect. 

This life has no guarantees. 

It is all the more reason to do what I set out to do: Find and focus on the joy. That is my one goal for 2016. It encompasses everything I hope to accomplish. 

My joy this morning?  Laying in bed, cat and dog next to me, my beautiful son laying on my chest. He is currently practicing head control, which means he is head banging me. He throws in a few punches to the neck every so often. And then he snuggles in and falls asleep. 

He is my greatest joy, and I am lucky to have him for as many moments as I get him.