The next few weeks were pretty much a waiting game. Everybody kept telling us that "it is up to Joe" on how quick things happen in terms of recovery and so on. I cannot remember much about Joe being in intensive care after his operation to the point that he left intensive care... I just remember feeling a sense of normality-sitting by his bed everyday, for 15 hours or more a day.
For this reason.. I can only really outline what happened.........
Thursday 2nd April
Thankfully, Joe did not have another cardiac arrest.
Joe had a stable night, even though everyone was expecting another arrest. The doctors and consultants, including Joes surgeon said that they were pleased that there were no negative events over night.
Joe had to be given another drug to help him cope with the fact that that he had an empty stomach.
We spoke to Joes surgeon in the afternoon. He said that he was pleased with Joes progress
Friday 3rd April
We were told that they wanted to try and close Joes chest, but leave the breast bone open.
Joes eyes were moving, and he was trying to swallow, so they had to put him on ROC again (a drug that kept him alseep and paralised).
Another heart scan was completed, and everyone seemed pleased with the progress, although we were told that his right ventricle was weaker than required. This was apparently an issue since the operation and we were told that this would be monitored.
Joes chest was closed at about 11am, and they confirmed that the flow of blood to his lungs had increased slightly, and that the breatsbone remained splinted.
The plastics team had looked his his ankle as one of the cannulas had disintegrated into his vein. We were told that this needed to be monitored to prevent longer term damage.
We were also told that they were starting Joe on Expressed Breast Milk (EBM) intravenously, along with fluids.
Saturday 4th April.
Joe had a good night.. he had his adrenaline reduced significantly. And there was plently of urine. The surgical team advised that happy with Joes progress, but we had a huge reality check when we were advised that it was 50/50 that Joe would make it. His Kidney and liver functions were improving, although his kidney function was plateauing due to drugs being given.
The pastics surgeons told us that they think Joes ankle will be OK, but would continue to monitor it.
Joes started to move his eyes and mouth, however, no one had told me that they had taken him off the ROC again, so when I bent over to kiss him, and he opened his eyes, I nearly screamed, as I was not expecting him to do it.
Sunday 5th April
Joes Frusemide (drug to stop fluid building up) was stopped overnight with no decrease in urine. Joe was wide awake in terms of moving his eyes and mouth, and there was also a small amount of toe wigling.
However, the side of his head was swollen... we were told that this was due to lack of movement
We helped to wash and moisturise Joe. We then walked into town as needed to go to mothercare... phil bought Joe a cow and another lucky hat.. when we got back, they had removed Joes abdominal drain. Joe was sleepy again due to sedative,so we spent the afternoon watching him drift in and out of sleep.
Joes ventricles started to be paced externally by the pace maker...I remember being really concerned. We spoke to the doctor, who done an ECG straight away for us, and explained that everything was OK.
Monday 6th April
There were no changes overnight. His Surgeon explained that they would remove the splint from his chest and close the skin, but would not close the sternum. The Plastic surgery team (4 of them) came to look at Joes foot.. again, they said that it looked OK, but would continue to monitor.
The surgical team advised the nurse looking after Joe that if they did not do the work on joes chest straight away, then it would not be done until the day after... this was started at 10.30 so we went back upstairs to our room. We were told that this would take an hour.. finally at 12.30 the nurse called to say that we could see joe. The surgical team had already left when we got there. The nurse said that the stent had been removed and the chest re-stitched.
I changed Joes nappy for the first time since he was taken ill . I remember feeling really scared because of all the lines that were going into Joe. I was worried that I would pull something out. The nurse kept re-assuring me saying that this would not happen.. Finally, Joe started to feel like my baby again.
Both me and Phil started to get frustrated, because the communication between the medical team and us had decreased, so we did not really know if things were going well. In the evening, Phil managed to find out that they they were happy with Joes fluid balance (although it was climbing a little) and EBM was increased to 4ml an hour.
Tuesday 7th April.
Joe had a small "event" in the middle of the night. The doctor had tried to take a line out of Joe, but Joe got upset about this. His heart rate spiked (over 230 beats per minute), but again, we were told not to worry as they knew what had caused this. This is called Supra Ventricular Tachycardia (SVT).
Finally, Joes chest was closed. I remember feeling like a huge weight had been lifted off of us.
Wednesday 8th April
Joes Pace maker was turned off.
Thursday 9th April
Joe had the ventilator tube changed to be a "short tube". This was the start of Joe breathing on his own.
Friday 10th April
Joe was OK overnight. His short tube was removed at 6.30am , but Joe was not coping very well with breathing in his own, so it was put back in, despite 30% oxygen blown into his face... the doctor assured us not to worry and to give him more time.
Saturday 11th April
Joe's short tube was taken out again and he was put into an oxygen box at 9am.... Joe was then given no additional oxygen from 14.00. For the first time since the 28th March, we were able to dress Joe and we were also able to hold him again.
Sunday 12th april
Phil woke up really early (about 4am from what I remember) and went down to see Joe. Joes arterial line had been removed. This meant that Joe could be moved out of intensive care and up to the high depency ward as soon as there was a bed available.
At 11am, Joe was moved to the high depency section of ward 11.
Monday 13th April
Joes feed was increased to 18ml hour
Tuesday 14th april
Phil had to go back to work, so he went in for the morning. The nurse had removed Joes heated matress, and I remember being very concerned about how cold Joes hands were. Joes milnirone (a drug to support Joes heart) was reduced, and his feed went up to 20ml an hour. Joe also had to have a 24 hour ECG to make sure that everything was OK before they could remove his pacing wires.
Wednesday 15th april
Joes milnirone was stopped.
He also had his pacing wires removed. A scan had to be done to check that no trauma had occured when the wires were removed. Everything came back fine. Joe also had his line removed from his neck
We got to hold Joe again, and for the first time, Joes sats monitor switched off while we held him.
Thursday 16th april
Joes bolus feeds started. I tried to breast feed, but struggled, so we bottle fed Joe.
Friday 17th April
Joe had another SVT (heart rate too high) during the night, but this time, no one was sure what caused this, so we were told that this would be monitored.
Joe was now being bottle fed by day (40 ml every 3 hours... increasing to 60 ml every 3 hours)
Saturday 18th April
Joe now weighed 3.44kg.. which everyone was pleased about as he had put on weight.
Sunday 19th - Thursday 23rd april.
The next few days were quite frustrating. We had to wait for a bladder scan to be done before they took out Joes Catheter. This was the only thing that was stoping us from going home, so was a waiting game for them to take out the catheter and confirm that everything was ok.. I started to really struggle, and started to feel really low. Luckily, Joe shared a room with another baby called Charlie, and if it wasn't for Charlies Mum, I would have been climbing the walls.
On the Wednesday night, me and Claire sat and watched the apprentice. The babies were alseep, so did not have to worry about them. I started to feel normal again that night. Phil had been to Uni, so me and Claire had been on our own most of the day. I have a lot to thank her for, as she kept me sane while Phil was at work and Uni.
Finally, we were told that Joe could go home, and we could go at about midday on the Thursday. However, we were slightly delayed as when I fed Joe at 12pm, he vomitted, and I noticed that there was blood in it. Because of this, the nurse said that she wanted us to stay until his next feed at 3pm, to see what happens and to make sure that there was no more vomit with blood. I could have screamed because I just wanted to get Joe home.
Thankfully, everything was OK after Joes 3pm feed, so we were given the green light to go home. I said my goodbye to Claire... knowing that I would really miss her, and we left the hospital.
The day that Phil and I had been together for 9 years.....Finally it was our turn to go home!!
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