Day 17 and counting.

17 days ago we waited patiently for Chloe to come out of surgery. And I recently posted about the difficult recovery. 

We’ve encountered a few complications. Back in to theatre for a left drain placement. Back to PICU for tachycardia and desats and the leaky drain. We had to start replacing albumin and keep an eye on her blood work.  Daily finger prick blood tests and regular chest X-rays. Heavy doses of antibiotics were given last week due to signs of an infection and high fevers.  Both Chloe’s lungs collapsed a bit and she developed a very wet cough. 

A few ups and downs on the ward with tummy issues and pain. Plus Chloe developed chylothorax. This is related to the thoracic duct and the leaking of proteins and fluids. This is managed through diet and specialised formula. A very low fat diet, Chloe is allowed a maximum of 10g fat a day. This is a challenge with her limited range of foods. 

I often get asked how much longer will you stay? This is a super difficult question! We are making gains. She’s off the morphine. She has one left drain and the others have been removed. Her dressings came off yesterday. We took the nasal prongs off which was giving her a bit of extra oxygen. 

She still has an Ng tube in for feeds and the left drain. We lost the line for cannula and Iv fluids and will find out later today if it needs to go back in. 

At the moment Chloe’s sats are high 80s on room air. To say I’m somewhat disappointed in this number is an understatement. I know it’s better than what it was but I guess both Mike and I had high hopes for sats in the 90s. I’m told that this is likely due to a few pesky collaterals interfering with the circulation. I’m confused why these weren’t addressed during surgery as I know they were discussed. But that’s a conversation for another day. The doctors tell me that if they didn’t know about them they would question her lower sats too. 

Each day now is just a new day to amuse a more happy and active Chloe.  She is keen to play horses. And drive around on the car. Pain and discomfort is reducing so she’s able to sit up more and she’s more talkative. She loves to play with the OT and we sometimes have the starlight people visit. Christmas was a great day where she really turned a corner to more improvements. 

It is the best feeling to see these smiles again. And hear her giggles and voice. Each day is another step closer to home but when is an unknown! This all depends on a variety of factors mainly related to the fluid she has been draining from her left pleural cavity. Still it is a relief to see progress and know that she is getting a bit better each day. 

One week down

I certainly thought, and it was obviously a naive thought, that one week post surgery Chloe would be feeling much better. Truth is that fontan recovery for us seems to be a much harder road. 

I sure do miss my smiley girl. We’ve had a few moments of her laugh and smile, especially while playing horses. And she’s since caught on that there are some presents hidden away that contain new little toys. And points to where they are so she can unwrap another. I’m running out actually! 

Today is one week since her surgery. It’s been a rough week. She needed to go back in to theatre and get a drain placed.  Her left lung was filling with fluid. She has pleural effusions on the both sides, this is quite common post fontan. It’s basically the body not understanding how things have changed. And if you don’t breathe up and use your lungs properly they react with fluid build up. 

Chloe is hooked up. She has three drains which stay connected all the time. She’s on oxygen and has a nasogastric tube. Plus her cannula which is keeping a background of morphine. This usually stays for the time she has drains in. It’s a very tough balancing act of pain relief and not too much sedation. She’s also got Iv fluids running. Not to mention ecg leads monitoring her heart rate and her pulse ox. It is very challenging to pick her up and move her to say the least. 

Daily routines include walks. Sitting up. Doing obs for nurses and me thinking about when I can get food and coffee! 

I hate moving her and making her walk or sit up. It’s very painful and she doesn’t understand why she has to move. Moving is vital for her lung function and getting that fluid to move. 

Yesterday we had a big desat. This means her oxygen levels dropped and more assistance was needed in the room. I helped stand Chloe up and put her arms on my shoulders while I kneeled on the floor. This was trying to get her lungs to open and breathe. We patted her on the back. She needed to cough to move the plug. She was distraught. I refuse to let her see my emotional pain in these moments and tell myself over and over that I need to be strong for her. But it’s so difficult seeing her in so much pain. 

Since is started this post a few days ago and never finished it things have changed. We added another cannula for heavy duty antibiotics since Chloe spiked a high fever. She was utterly miserable. Her left pleural drain was positive for chylothorax. I won’t go into the details but this is managed through an extremely low fat diet. She can have basically only 10g of fat a day. This is difficult to manage with Chloe so she will also be given a formula in her Ng tube. 

Since the start of these new regimes she has perked up a little. Less wet sounding coughs. Less fever and walking further. So hopefully we are heading in the right direction. 

She’s loving music therapy and playing with the OT. She plays with her horses in bed and even had a visit with the therapy dog today. 

Time slows down

I’m sitting at the public garden with an awesome view of the city drinking tea … bushells tea (yuck!) from a styrofoam cup (those who know me well would realise how gross I think that is!)

I’m catching my breath. Getting fresh air … yesterday was a long day inside the four walls of the ‘gig gig house’ as Chloe calls the hospital.

She went in for her Fontan on Monday.  Today is Friday.

It was quick on Monday. The anesthetist and I took her in to the waiting area at 830am. Chloe cuddled on my lap with her head  on my shoulder while the anesthetist sang her Twinkle Twinkle holding the mask over her face.  It was very calming and I might admit to shedding a few tears since she couldn’t see my face ! 

I gently cradled her 15kg self and lifted her onto the bed and kissed her. And walked back out to find Mike.

I tell myself I’m strong and resilient and that I know God is in control. Yet it will be several hours and days until I know I’ll be able to cuddle her like that again.

At 145pm I get the phonecall from the surgeon that she’s out and getting settled in PICU but that all went well. Mike and I had busied ourselves by eating breakfast and sorting our accommodation. …and watching Netflix in the waiting lounge.

We both know what we will see when we walk in to see her since we’ve walked this road before.And once again I only notice my little munchkin lying there and although my brain registers the tubes and wires it somehow kicks in a self preservation type mechanism where I just overlook them.

We settle out chairs beside her bed and watch her sleep. 

From this point you lose all track of time. You know the world continues to turn outside but for us it goes into a kind of slow motion.  Almost stopping while we hold her hands and wipe her hair from her face . And so this long process of healing begins. 

In what can only be described as modern day miracles…the surgeons have changed her circulation to increase her oxygenation and blood flow. Where she was sitting in the 70s for o2 saturation before. ..she now is in the 90s! Her fingers and toes are not blue! 

The waiting, although agonising is the easy part. ..the recovery sucks! In the hours following they just extubate and get her breathing up, this is vital for her new circulation. And it’s a rough road. 

24 hours later ,  no sleep,  and we’re up on the ward and out of PICU. And the hard yards begin. Fluid build up and draining is a real issue for Fontan recovery and Chloe is no different. She must get moving to help her chest/lungs and heart work properly. Unfortunately there wasn’t enough room to get a third drain in on her left side during surgery so today she has to go back under to have one placed. A substantial amount of fluid has built up on her left side and she’s actually draining quite a bit. 

So today is a super crappy day!  Chloe is none the wiser as she’s woken quite happy and was excited to see Daddy. I had bought some presents to cheer her up over the stay and she’s unwrapped one this morning. ..with one hand!  She’s pretending the arm with the cannula doesn’t exist and hides it under the blankets!

Looks like we’ll be in hospital for some time managing the drains and healing. thankfully we have many friends who are praying and supporting us. xoxo