I think Craig and I have both aged 10 years in the last two days. Last night was one of my worst nights in hospital, almost completely sleepless and full of stress and anxiety. Before I go on though, I want to thank all of you out there who have been praying for us and sending healing thoughts. We could not get through this without such support, many thanks for all the loving and kind words. I want to let everyone know straightaway that Gavin appears to be doing much better, we still don’t know what is at the root of his high blood pressure, but the doctors feel this will abate with time.
We as a family are breathing a huge collective sigh of relief as yet again the bullet whistles past and the Gavinator soldiers on. Last night we were told that his ECHO showed good heart function and a pretty normal amount of fluid around the heart, but there was some talk of a repeat ECG at some point to try to pinpoint why his heart-rate remained so high.
After cosying up together in bed, reading stories and telling stories for awhile, he was finally sleepy enough to go to bed, and went to sleep on a dose of hydralazine which was meant to bring his blood pressure down. Upon checking vitals though, the nurse found that his blood pressure continued to stay up, heart-rate high and oxygen sat. levels low. The answer to the oxygen is clearly to get some oxygen into him, but it can be hard to convince a two-year old to put on the nasal prongs or a mask, especially when very sleepy. Given time, I might have been able to convince him to do it, but the nurse was trying to get it on him pretty quickly and he became extremely upset about it. One of the only other options then is called “blow-by” in which the oxygen tube is set up near the face to blow oxygen in the vicinity of the nose and mouth. Obviously, this method is not an exact science and if the person rolls over is not effective at all. I remembered that long ago after surgery, the respiratory therapist came and recommended a “hood,” a plastic box which fits over the head. Gavin slept very peacefully with this on for about a week after his surgery when he was desperately low on oxygen.
At one point last night the respiratory therapist came to have a look at Gavin and brought a box to try, as soon as it was in place his levels returned to full saturation and his heart-rate began to lower. I was quietly elated, but then a short time later he woke up and realized his head was in a box and that was the end of that. Back to blow-by. He was very restless, because the nurse had to keep checking vitals frequently. His blood pressure would not come down and so it was decided to dose him with nifedipine, another drug for hypertension that is given orally. He was quite distraught after this and curled up on my chest to go to sleep.
He received a couple more doses of hydralazine throughout the night, but his blood pressure still remained high. I didn’t close my eyes to go to sleep until about 3:00 am. I fell asleep almost immediately, but the nurse was in and out of the room so frequently, I could barely sleep. Finally, at 5:00 am, the fellow on that night came and woke me up to ask if they could do a repeat ECG as they were concerned about the reading they were getting on the monitor. Unfortunately, the heart monitors are notoriously sensitive and often give inaccurate readings, which an ECG could clarify. There was some concern that his heart was behaving erratically. However, this machine had been notifying us of this all night, so I thought it a bit much that they came to do something about it at 5:00 am. I asked the fellow if we could wait until cardio came in in the morning and he said yes so I stagggered back to sleep.
Craig came in early and sent me back to the condo to sleep. I was in a complete haze, so anxious and concerned as I thought that neurosurgery were on their way to see him. I had been told by a nurse that this was most likely going to happen, but it appears she was misinformed, because much later in the day when I asked our staff doctor Talie about it, she had no idea what I was talking about and assured me it was not necessary to involve them as the chances that this problem involves his shunt are slim. I wish I’d been told that earlier in the day.
I left and slept solidly until eleven before returning to hospital for lunchtime. Craig had spent the morning quietly playing with Gavin and doing drawings and such. Although he looks unwell, he is acting relatively normal and certainly perked up more after Craig finally convinced him to wear the oxygen prongs. He managed to do this by sporting a set himself for about an hour. The things Daddy will do for his Bean. We all know Daddy is a star. We’ve managed to keep the prongs on now, as he senses somewhat that he needs them.
We had quite a few more medical visitors today. CCRT returned to see us, and nephrology (kidneys) became involved to try to get to the root of this hypertension issue. A few suggestions were made, but nobody seemed terribly alarmed about his condition. The general consensus is that it is a transient thing and will most likely resolve over the next little while. Another facet of the problem arose in that it was observed in one of his chest x-rays that his central line has moved, inwards, closer to his heart, and perhaps was contributing to the problem.
Someone from IGT came up to see Craig and Gavin to try to manually move the line. Apparently, Gavin was completely at ease with him, because his name was Craig, he was Australian, and he looked a bit like our Craig. So this Daddy-doppelganger calmly moved the central line a bit while chatting away to Bean, and responded to Daddy’s Cheers, mate with a very Aussie No dramas.
We are slowly looking at the problem from all angles, and Gavin is on very strong antibiotics to combat any viral infection that may be brewing. He went from being on hardly any medication to receiving ten medications around the clock. It makes a lot of work for the nurses. We were happy today to have our favourite nurse Jen with us for today. Her sweet and cheerful personality helps on these days of crisis.
Beanie went down for his nap quietly, and I was sitting with him when Bubby showed up with Replacement Monkey. We’d ordered one from the company but it had still not arrived and we’ve been very sad without him. Bubby spotted Replacement Monkey in a shop and pounced on him, put him through the wash to make him look a bit less brand, spanking new, and brought him down. We put Monkey on the pillow next to Gavin, which unfortunately spelled the end of nap-time, because he opened his eyes and went wild. Monkey, monkey, monkey! We immediately began playing all sorts of games with Monkey and Bubby had Gavin in giggle fits.
The rest of the afternoon was pretty quiet, blood pressure readings are still high, but it appears that the high heart-rate is due, in part, to the medication he is on for hypertension. Later in the afternoon, cardiology came with the ECG machine, and a very pretty doctor who looked about 20, (when did I get so old?) but couldn’t possibly be, charmed Gavin into putting on the 12 leads necessary. I’d told her ahead of time that if you just take the time to explain something to him, he’ll be happy to give it a shot. I noticed that she arrived with two other fellows, one whom I cordially dislike, when I asked him why he was there, he told me to help “hold him down.” Um. Yes. Please leave. I sweetly informed him that his “help” was not necessary and asked them to step out. Gavin held perfectly still for the ECG and got a great read. The cardio doctor was pleased with the result and immediately told us that it looks quite normal, but she’d get back to us later with the full report. We were later told that everything looks fine. Craig took some photos of Gavin with all of his leads on, but I couldn’t bear to post them here as they are very heart-breaking. It is hard to see just how sick and emaciated he looks now.
It has been an eventful day. We still don’t know what is causing the hypertension. Although it is very anxiety-inducing to be in the midst of all these tests, at least we are covering all the bases, and have a staff doctor who hauls every department in the hospital upstairs if she has to, whether they like it or not. I don’t know what tomorrow will bring, I hope his blood pressure comes down. I hope no infection makes itself known. I hope he doesn’t spike any more fevers. I hope he feels well enough to play as he did today. I wish I could think for just a moment that we are out of danger.
Hope has rebounded though. I know there will be more hard days in the next couple of weeks. It is now just a matter of watching and waiting.