We knew these couple of weeks wouldn't be easy. We knew Max would be having surgery for a couple of weeks before and we had prepared for that to be a big deal and we knew Addie would have surgery not too long after so we anticipated a climatic end to February. We did not, however, anticipate quite the level of drama that we have encountered. My Facebook updates were getting quite lengthy so I thought I'd do better now just updating properly on my blog...
Max had no issues with his surgery at all and we had been really prepared for him to. We had the whole Max is sensitive and anything can send him into trouble talk with the doctors so we very nervously sent him off to surgery 8 days ago. And we held our breath and prayed very hard and he did really well. And we kept holding our breath and praying fervently as he started Hemo 2 days later and again he did really well so by the weekend we started to relax. Max was off his pain meds and feeling better and had not had any problems with Hemo yet. The relaxing from knowing Max was doing well was dampered by the dread of taking Addie in to surgery on Monday. I felt really sad about it all Sunday because she was SO happy this weekend and it's just no fun to take a child who is feeling great in to inevitably feel worse even when you know it's the best for the long run. I wasn't hugely nervous so much as just dreading the whole post op pain part.
So Monday came and Addie had Hemo in the morning and then surgery. She came out of the OR pretty quickly and we got to go back to recovery to see her. If you get admitted straight to an ICU (NICU or PICU) you don't go to recovery but since Addie was planned to go to a normal pediatric room she went to recovery. We've only been to recovery a couple of times but it is NOT a fun place. Lots of kids coming out of surgeries- tears, nervous parents, no fun. Anyway when we got there Addie was uncomfortable and fussing and her blood pressures were high. Long story short 4 hours later and many many pain meds and blood pressure meds later Addie was smiling and playing and yet still extremely hypertensive. It's just easier to just talk about the systolic number, the first number. Addie's should be between about 95-115 and generally runs about 105-125 so a little high but ok. The doctors wouldn't consider it grounds for needing to come in until it was consistently above 135. A BP above 150 is way too high and above 170 is acutely dangerous because little hearts cannot sustain such high pressures. I remember when I was pregnant with twins, I had to get blood pressures checks daily because my pressures were creeping up into the 140s. So the fact that Addie's BP ran in the 170-180s for 16 hours straight is very scary. They tried every machine and every cuff hoping like crazy it was some sort of error.
We tried to avoid a drip for a long time because she didn't have IV access because it is really hard to get an IV on Addie. We tried every single blood pressure medicine, either orally or through her Hemo catheter and nothing seemed to work. Finally at 2am it was clear she had to get a drip so we then spent 2 hours getting an IV in which was a very traumatic experience for both Addie and I! They ended up having to get a scalp IV in and had to shave part of her hair. And it has taken Addie a really long time to grow her sweet little blonde fuzz so I was very sad about that. But finally after about 7 sticks and over a couple of hours, Addie started on her drip. I was so stressed by this point because nothing had worked yet and I knew we needed to get her BP down soon or her heart was going to run into trouble. I prayed very hard at 4am and asked all of you to pray and thankfully the drip worked! She required very high doses but her pressures finally came down!!
Now her pressures are being managed by the drip so she is not in any danger from such high BPs but we can't seem to get her off the drip. The intention of a drip (which administers medicine constantly around the clock) is to stabilize her and then hopefully wean off and onto oral meds. We hoped maybe having Hemo would help but it has not really yet. So please keep praying for Addie. She cannot leave the ICU until she is stable off her drip for a while. We still don't fully understand why it happened other than it seems to be a rare but possible effect from anaethesia. Why is hasn't worn off yet we're not sure. Addie often seems to run into these confusing medical dilemmas where I really feel like I need House to come and figure it all out...
But the culprit seemingly was anaethesia. Which means you can only imagine our excitement at finding out today that Max would be going back under anaesthesia tomorrow! I mean, really?! Have we not had enough anaethesia fun for one week!!! So Max is not getting surgery, he is going under general to have another MRI done. It's like my twins are competing to see which one can get more medical attention! Ultimately it is just the reality of having twins with chronic health conditions- definitely not for the faint of heart!
So Max's MRI... Max had an MRI about 6 or 7 weeks ago so you may be wondering why we're doing another one. Well, as I've mentioned before Max's MRI showed significant brain 'damage' or abnormality. However, we haven't been able to get a diagnosis as to why. There were a lot of possibilities posed and at our meeting a few weeks ago, the doctors wanted to talk to us about their concern that Max's condition may be 'neurodegenerative' meaning he may actually keep getting worse neurologically, which could actually make it life threatening. It could also not get worse but be stagnant and he will never develop past where he is now. It could not be either of those two options and Max could get better but the doctors were definitely concerned that he was showing signs of a progressive condition. We have sent bloodwork away to a genetics lab but do not have results yet so in the meantime we're trying to look for objective ways of seeing whether Max is getting better, worse or the same.
It is a really hard issue for me as his mom because I think it's really important that I believe in Max and look for his acheivements and celebrating his improvements. So no doubt Al and I and our parents look at Max through a lens of wanting to see improvement. Max's doctors have a different, arguably more objective lens, but they also don't see him very often so the fact that they saw him on a good day in December and then a bad day in January seemed to really concern them that he was declining. And while we could just agree to disagree, Al and I feel it is important that we do try and understand if Max does have a progressive condition. We don't want to live with that fear in the back of our minds if there really is no evidence for it. And if it is the case, I suppose we should 'prepare ourselves' for that, although I'm not sure there's really such a thing. Also, we can't move forward with transplant until we do know whether his condition is progressive or not. So we do want to know. We had Max's PT from the NICU evaluate him today and she did not think he was worse. She also did not think he was better. His OT from home does think he is better, if you look at small specific accomplishments.
So in the end, since the MRI started all this, the doctors think the best thing would be to get another MRI 6 weeks later and look directly at the brain and not at our interpretations of his behaviour. We should be able to basically line up the images and at least see if there has been any significant changes. Please join us in praying that there will be no evidence of deterioration in Max's brain. He has been really really happy and cheerful and social and moving the past few days after his surgery so we are hopeful that some of the 'getting worse' that people were worried about was a reaction to pain and discomfort he had been in from his hernia and reflux. Since having his surgery, we have felt like we got our old Mr Happy Max back and that has thrilled us. We expect we will see abnormalities on his MRI still and we know from his pronounced developmental delays that there are some problems there. But we are praying expectantly that there is no evidence of brain deterioration. And we are continuing to pray for wisdom for doctors and answers from blood work so that we can arrive at some sort of diagnosis and some idea of what the future may have in store for Max. This set of issues we're facing with Max has been much harder on us than the kidney stuff so we'd also love prayer for Al and I and our families as we deal with another MRI results session and more talking with neurologists...
Of course after Addie's drama, we'd also love prayer that Max handles the anaethesia well!
So that's our thunderstorm of drama at the moment. We are all tired and have been worried and very much ready to get these babies back home and get things back to normal soon. We appreciate the prayers and support and visitors while we've been surviving these current trials. We continue to see God answer prayers in His time and according to His will. Healing may not always be as fast or complete but God is there working miracles in his sweet babies Max and Addison and we are so grateful that His hand is upon them.