Smiling!!

Chloe is starting to feel like herself more and more. She’s smiled and had a little giggle today too!

Day 3.

Chloe is out of PICU yesterday late in the afternoon much to my dismay. I think they are pushing her too fast. Though I keep saying it the cardiac team they keep pushing. In saying that she is doing well and experiencing all the same things most kiddies do. She has had high blood pressure but they have taken the  medications away for that. She was a bit more settled overnight but still struggling with the ‘Glenn headache’ due to her circulation change. She’s still got the pump for pain but it’s not continuous, only to be used when necessary.

She was guzzling her limited amounts of milk yesterday. .. as she is on fluid restriction but they are slowly increasing that. She did refuse her bottle this morning so she was feed via her ng. Hopefully that will come out today along with her drain. Which will make her more comfortable.

They are still helping her a bit with 0.5l of oxygen. Overall she is doing very well but it is hard to see her upset and in pain. Though here is a pic of a more happy moment this moment.

Our week so far.

It’s been an eventful few days. I’m either getting desensitised to the whole process or its better this time around than last time.

So I thought I would explain a bit of what Chloe had been through. On Monday when I arrived we managed to get through the blood tests and all was normal. Which was excellent news. The only problem was that she continued to ‘spell’ whenever they tried to make the cannula bleed. I mentioned these spells earlier. I said they weren’t common for her type of heart defect so once again she continues to cause trouble.

The ‘spells’ are very scary. The longest one happened on the ward and lasted 10 minutes. That’s 10 minutes of me holding Chloe with her legs tucked up and the nurse standing behind me holding an oxygen mask to her face while another nurse attempts to put some fluids in her cannula and get some morphine ready in case she doesn’t respond. That’s 10 minutes of an almost purple Chloe. .. and I’m not exaggerating. She was completely  unresponsive during that time. It was a long ten minutes to say the very least.       
The reason these spells happen is because the artery basically closes in on itself and spasms and this causes the blood to flow the wrong direction.
Thankfully, her surgery should have fixed this problem and she will no longer ‘spell’.

At about 5:00 yesterday afternoon they extubated her. This was about only 4 hours after surgery. This is important for her to get used to the new circulation she now has. Unlike last surgery where they kept her sedated and asleep for 48 hours they like to wake babies up after the Glenn in order for all the circulation to start working properly. The downside to this is that she will be feeling the headaches and pain and discomfort from everything until they can tweak all the medicines to make her comfortable.  Unfortunately they can’t give her too much as that will make her too relaxed and then she will need intubation to assist with breathing. So overnight she was very unhappy and unsettled. But is slowly getting more settled and alert.

Anyway, as I write this the lovely nurse who is with her today is removing some lines and the pacing wires. After that we will give her a little sponge bath and clean her up a bit, wrap her and I will get a cuddle!!

The surgery has been successful and her cardiac doctors are very happy with her. I’m kinda hoping she will have one more night in picu as she’s been so unhappy and I don’t feel ready for her move to close obs up on the ward.

No surprises. ..

Just a short update. .. Chloe is out of surgery after a long 5 hours. There were no surprises and everything went smoothly. Haven’t seen her yet and will try for a proper update later.

Mike and Chloe this morning before surgery.

Ecg

Chloe is trying to eat her dummy while getting an ecg.

Nothing is ever smooth. ..

Today was preadmission day for Chloe and the blood tests for the Endocrine doctors.

The reason for the preadmission was that is incredibly hard to draw blood from Chloe so the doctors thought they would put in the cannula. So that was big trouble! The anesthetist came and struggled for half an hour to no avail. So a short trip to threatre under a general anesthetic to insert the cannula was in order. Not something that we planned. Poor Chloe had been poked and prodded.

Finally the cannula had been inserted and the tests were able to be started. They are testing her cortisol release and adrenal glands to ensure it is all normal before starting surgery.

I was lucky enough to arrive in time this morning for doctor’s rounds and also it’s Chloe’s cardiologist’s week on. .. so I got to mention again the scary episodes that she’s been doing. When she has one of these episodes she cries and is inconsolable. Then she turns blue, her eyes roll back and she becomes unresponsive.  It’s extremely scary and they have gone from being infrequent to happening several times a day. The cardiologist says it sounds like a TET episode.   Not something that is common for HRHS kids and is more likely for kiddies who have tetralogy of fallot (another congenital heart defect).  Anyway, she’s had a couple of long ones today since coming to hospital and the doctor saw it happen. Which in a sense was good.

So we have moved from a ward room to the close observation unit. Not a very smooth morning really but she is more settled now and hopefully there won’t be any more episodes today. 

Recent pic!

Chloe is practicing sitting up. .. in a laundry basket as suggested by the Physio!!

This is a long one…

So if you read my last post you know that last Wednesday Chloe went for a diagnostic catheter procedure. This is a common procedure for kiddies like her with congenital heart defects. It’s a thorough method of measuring the pressures in her lungs, arteries and heart in order to see if she is ‘primed’ for upcoming surgery.

Last week I turned up at the day procedure unit at 11:00, with a tired and very grumpy Miss Chloe. Overnight she was quite unwell, to the point where at midnight Mike and I were changing the cot sheets and giving her a bath. Poor thing. My gut feeling was that it was related to the return of symptoms that might indicate she suffers with cows milk protein intolerance (CMPI). I won’t go into the gory details but it was pretty gross! We didn’t get a lot of sleep, but luckily in one sense, she was off her food so the fasting prior to the procedure wasn’t that hard! She pretty much slept the whole time while I waited with her.

They took her in at 1pm, after much discussion to see if her overnight illness was a virus or the tummy upset due to CMPI. The cardiologist and anaesthetist felt it would be fine to go ahead with the procedure. At about 3pm Dr Ward, her cardiologist, came in to see me in the parent lounge (when I say ‘lounge’ I use the term loosely…it’s hard chairs and some instant coffee!) to let me know that the procedure went well and everything looked perfect to go ahead with the Glenn procedure in the next few weeks. He informed me that she would be out of recovery in 30 minutes. Two hours later, and many conversations with the anaesthetist and we were still waiting.

While coming out of the anaesthetic, Chloe had one of her screaming fits and desaturated to about 30, and went very blue. She wasn’t stable breathing on her own so the team were assisting her. While the anaesthetist was informing me that she was now stable, she desaturated again and was put on oxygen to help with nasal prongs. It was then they decided that she would need monitoring overnight in PICU.

PICU has an odd sense of security about it. In a lot of ways I prefer it to the ward. There is one nurse per child, and they are monitored 24/7.

Anyway, we decided to also try a new formula that would help with the intolerance, but it’s renowned for babies refusing it due to the taste. After fasting for so long, and refusing feeds, Chloe drank 180mls in the PICU that night, from the nurse not me! Though that feeding didn’t continue.

The following day we went up to the ward for monitoring overnight. Feeds continued to be a problem and I was concerned she was getting dehydrated. I felt very frustrated that no one would help with the feeding problems, and though I kept asking for the dietician and paediatrician to visit, I didn’t get far. Though the dietician did turn up the following day only to inform me that she didn’t have time! Oh how I wish I had Chloe’s regular dietician at the hospital.

The monitoring revealed that her heart rate is good, though does get very high when she gets upset, and her oxygen sats are usually between 70 and 80, which is why she is tinged a little ‘smurfy’ (blue) these days. When she’s upset, they go quite low, so getting to her to console her is quite important now.

On Friday, I decided I needed a coffee so told the nurse I would pop downstairs for five minutes, hoping I wouldn’t miss rounds! Which of course I did! The cardiologists decided that they would discuss Chloe’s surgery at their meeting at 12:00, and if I waited at the hospital instead of going home they would come up and speak with me about their decision. So although I was desperate to go home, I decided we would wait around.

Lucky I did! A few hours later, an endocrinologist came up to speak with me. He got a history and said he would go discuss with his colleagues. An hour later, the lead endocrinologist visited to discuss Chloe’s syndrome. Apparently, after much nagging from me to the cardiologists, as well as a phonecall from Chloe’s metabolic doctor to the cardio team, they decided it would be wise to test Chloe’s response to stress prior to the surgery. I was very happy that I waited. Also, because at the same time, the surgical team came up to let me know they would do surgery in one week!

After that, I packed up, attempted to give Chloe a feed and high tailed it out of the hospital! Even though we would get stuck in peak hour traffic, I decided peak hour traffic was more fun than the hospital room! And Chloe loves the car, it was a good decision because she slept the whole way home!

So…the big surgery is planned for the 28 May…a week from today. It’s a relief to know it’s coming, but also quite nerve wracking and I’m full of anxiety about it. The surgeon sent us home to have a week for Chloe to get back her strength from the catheter upset, in order to be ready for the surgery. This procedure is quite different from her first one. They actually operate on her heart, which means she will be on bypass I believe. It will be long and there are many risks. I believe she’s a fighter and can handle whatever gets thrown at her! I’ve heard stories where some kiddies only spend five days in hospital after this procedure so I’m praying that there will be no complications and she will heal quickly.

On the feeding issue, I have sort of taken matters into my own hands. I sent Mike out to purchase a particular formula which I am weaning her onto gradually… so we are hoping this might help settle her tummy and maybe help her enjoy feeding a bit more! The battle with solids continues but I will persevere!

So the countdown is on. Please pray that Chloe will be really healthy over the next week. Mike has ‘man cold’ and we all know how debilitating that is…(haha)… and the last thing we need is for her to catch it, or me!

Chloe is never easy!!

Yesterday Chloe went in for an ‘easy’ diagnostic catheter procedure. The catheter itself was great. No complications. .. but Chloe never makes things easy for us or her doctors. She was having a lot of trouble coming out of the anesthetic. .. she screamed and desaturated as low as 30 and 40. She wasn’t breathing well on her own so they have her some help initially with the breathing tube in and then with nasal prongs. Needless to say it was a long wait from when her cardiologist said she was good and in recovery and wouldn’t be long. Two hours later we were still waiting.
Anyway… she had spent the last 24 hours in picu… a little impromptu visit. .. she started breathing on her own during the night.
Doctors still have some concerns and we are back to having feeding issues again.

More update later.