Still suspended and having issues....

Evynn remains suspended. After another echo, there is concern about the spot where the IVC (vein) from new heart connects to old. It is tight and she needs a CT scan because she will most likely need a stent put in to widen it.  But they couldn't do CT today because she was too unstable to not be suspended. She has also been having massive blood pressure swings from hypotension of to hypertension of 181/110. They have tested her iV lines to see if they are the issue. Could have been medication delivery issue, but all line, pumps, syringes are good. No one really understands what is causing the fluctuations. It's going to be a long night.

Chest closed but suspended.... (picture warning)

Evynn was able to have her chest closed this morning.  She tolerated it well but later in the evening her blood pressure started dropping too much and they needed to "suspend" her chest.  They literally pull up on her chest by attaching thread to her ribs and that hang from above.  Since then her blood pressure has been stable.  They also found clots in her right groan from a femoral line.  Her pain management medication continues to be increased as she is becoming tolerant to the effect.  Evynn doesn't do recovery the easy way.

Retractor out.

Over the past few days Evynn has been weaned off most the blood pressure support meds. She continues on the durectic sand was able to get enough fluid off that yesterday they were able to get the retractor out of her chest. Now she is only partially open.  Her surgeon thinks they will try tomorrow for a full closure. If her blood pressure tolerates a full closure then she will be able to be extubated and we could hold her! They have increase her comfort management as yesterday she was quite aware of all the discomfort. Today she was finally able to sleep restfully. She continues to improve one day at a time.

Bumpy road

Evynn has had a bumpy few days. Chest is still open with retractor. Still on ventilator. Still on ini-tropes and vasopressin, which had been weaned but needed it back after her blood pressure dropped. It has been a tricky push/pull trying to reduce the fluid in her tissue without drying her inside out so much that her pressure suffers. They say her main issue is being vasoplegic (weak/large veins). Yesterday morning she was in a better position and they were going to trying close her chest today but now they are thinking they won't be able to close for at least 5 more days.  She is completely off the muscle relaxer and has been complaining of pain. Her morphine has been increase and they have added other meds to help make her feel comfortable. She has been awake a lot and mouthing the words. Even mouthed 'I can't talk' when we were asking her where she felt pain. Hoping with the increase in comfort meds she will get the proper rest she needs. Over being a 'failing FONTAN' going in, they are happy with where she is now.  It's going to be a long slow road for her.

Stable

Evynn had a quite night. They attempted to wean the vasopressin (vein & artery constriction med) more but with the intoduction of lasix (durectic) her blood pressure dropped a bit too much. The plan for today is to continue with the iV lasix and wean slowly the support meds. They will do a transesphogile echo (scope to picture heart) to get better images of her heart function because the regular echo is unable to get proper images due to her chest being open. She is moving in the right direction, she is just going to take her time recovering.

Baby steps

We haven't been allowed in her room most of the day because there was a procedure with another child. (Rooms turn into O.R.s if they need)
We just got to see her again. They have removed the pacer, weaned one of the meds and her urine out put has increased. Her blood pressure is remaining stable. All good news!

Rough Night

After having a stable day on what we were told was the maximum dose of the heart support medications, Evynn had a scary night.  Her blood pressure & heart rate were dropping and increasing the medication and pushing fluid was not helping.  Surgeons had to open her chest even wider to relieve any pressure on the heart and they put her on the external pacer to increase her heart rate which in turn increases her blood pressure.  She has now stabilized on twice the medication, wider chest and pacer.  She needs to remain stable all day before they will attempt to wean any thing.  If there is any decline, she will require ECMO, which at this point could greatly reduces her chance of success.