So we just got back from another tiring night in the hospital. It all started Monday when I checked Alexa's O2 Sats and they were pretty low for being on oxygen. They wouldn't rise even though I kept upping the O2 so I started getting really nervous. I called the cards earlier in the day and waited then when this happened called again. They called back and that is when they suggested taking in her to the hospital to be checked out. They let the ER know we were coming. I was crying because I had not even yet unpacked my cath bag and we were already going back. Thoughts of having to rush her into emergency surgery kept flying through my head. I knew it was coming but I wasn't ready, literally I wasn't ready in any way. So we called my mom to come be with our kiddies and off we went.
When we got the hospital, they were already waiting for us so they took her right back. They hooked her up to the hospital O2 and watched. She seemed to be hanging in the low 70's on their monitors. At home she was in the mid 60's. She would sometimes dip into the 60's with them too. She was pretty calm at first until they decided they should place an IV line just in case since they had to draw some blood for checking. They had to poke her twice because they couldn't get the vein. She cried so much and kept yelling ‘mama mama!’ it was pretty heart breaking. After that they did an x-ray on her chest, which of course she didn't like being forcibly held down for. Daddy helped with that duty because I didn't want to be the bad guy again.
After we returned to the ER we learned we had a room ready and that we would be admitted for observation over night. We were in the general/cardiac pediatric ward not the PICU this time on the 4th floor. We had never stayed anywhere else in the hospital beside the NICU and the PICU so this was new for us. Cardiologist mentioned that the cath lab doc had already been in contact with her surgeon and talk of even doing the surgery here locally was mentioned. They said that depending on how she did and info they gathered would determine our course of action. So we started to get settled into our new room. Alexa was hyper and happy. She kept dancing on the bed and wanting to jump up and down. She had all the nurses melting in love for her. After a few hours she finally settled down and fell asleep shortly before midnight if you could believe!
Right about the time, just I was starting to finally get comfortable and an attending peds physician and resident walk in to check Alexa out. They mention how big and cute she looks. Good size for surviving on a BT Shunt this long. They ask me what O2 they have her on and I say 1/2 liter, she follows the long cord to the pump and says something completely shocking to me "It's not on!" I said “What?!” completely in shock. “They said it was on, they hooked her up to it when we got here” I added. And she says, “Well maybe they just weaned her off slowly.” And I said, “'No I have not seen them mess with it at all since we got here." At that point the nurse walks in and the doctor asks "Is this baby on any O's" And the nurse says "Yes, 1/2 a liter and of course she is also shocked to find out she had not been on an O2 since we got there from the ER which by this point was at least 4 hours ago. In the ER I knew and could clearly see the O2 pump was on. Here is was on the other side of the bed in the back so once I saw them hook her I assumed they turned it on like they said. So at that point they said,”Well let's not mess with it if she has been doing fine.” So they left her on room air and again watched. She was okay meaning mostly in the 70's occasionally dipping into high 60's when she moved around a lot. So needless to say I was flabbergasted but in a good way, mostly. I was happy to see her be on room air with decent sats and wondering how this could have happened. But like I said, mostly it was good news that I could fall asleep to. After Alexa fell asleep her sats climbed into the mid 70's and pretty much stayed there all night. I was very relieved to say the least.
In the morning, she had to get a quick echo to make sure her BT Shunt was still okay. This was another source of frustration and tears for her but thankfully they were done soon. The same tech that did this echo did the full one on her on Friday and she said she saw no changes and that her shunt although narrow was wide open. So we headed back to our room to wait for cardiology to make their decision. I pretty much knew we would be going home but wondered what other news they had about the surgery.
About an hour or so later her cardiologist showed up and mentioned Alexa was doing good and that pretty much it was just time, time to move forward with surgery within the next couple of weeks. He explained that the extra little VSD's they found in the cath added a new level of complexity to the surgery. As if it was already not complicated enough, he mentioned that the VSD's are mostly in the muscular part of the heart and that during surgery they are very hard almost impossible to see because the heart if flat and not extended with blood. He mentioned that trying to find the hole's within the muscle fibers was like trying to know which to slabs of concrete in Haiti that were stuck together were a) meant to be that way b) like that because of the earthquake and really if you lifted one slab it would lead you down a path to other side. I love that he uses illustrations as this makes things clear in my mind. He said that fixing those holes during surgery was of upmost importance because if not Alexa would be very sick after surgery, her right ventricle would change from a pressure bearing ventricle since right now it is thickened because it has to pump to two cardiac outputs to a volume loaded ventricle meaning some of the blood in her left ventricle would decided to go through the holes and into her right ventricle putting more stress on it and not really oxygenating or helping in anyway. He said that they had talked about possibly using another catheter during her surgery but before they actually put her on bypass to enter with some small like little umbrellas that would place two disks at each end of the hole and filled with something. He said that the pressures of the heart would force the little disks into the holes and that after that cell would form around them further cementing them into the VSD's. He said he was a little worried about her being away from this hospital again as they are a little more familiar with complex cases and would really love her to be close by to be monitored. So he again mentioned that they had brought the thought to her surgeon of possibly doing surgery here, which I never thought was possible. I would be very happy if her surgeon could be here but I said I don't want him to do the surgery and have to run back out of town and not be be able to be involved in her follow up care. Dr. Papez agreed that if the surgeon did not agree to perform the surgery here this would more than likely be the reason why, since he has other surgeries and patients at his new hospital. So the plan is still on to speak with Dr. T on Friday, I can hardly wait, I'm just nervous about it.
So thankfully, we were getting discharged. She had done well on room air. They said everything was fine, her lungs were clear, her echo good. Pretty much they said that she has enough high normal oxygen levels in her lungs just not enough 'cars' to go pick up the oxygen to deliver it to her body. To remedy this she needs the surgery. Bottom line again, shunt doesn't fit, she got it in weighing 8 pounds and now she is nearly 25 pounds, three times larger! But I am thankful it has lasted this long, one cardi we met in the ER said he couldn't believe she was still unrepaired and that he had never met a baby that the shunt had lasted this long in. Docs mentioned using O2 at home as needed. And we were out of there soon after.
As we were driving her home her surgeon, Dr. T called me. If felt so great that he took the time to call and speak with me about her. He asked me about her sats about what happened and what I had noticed. I love that he always takes "our" meaning as her parents input just as important as what the doctors have to say. We chatted some but agreed to speak lots on Friday. He did give me a great suggestion though and mentioned possibly getting a new home pulse ox monitor. He said that sometimes they are not calibrated right. He said just tell them what happened and that we would like a new one. I very much disliked the one we were given anyway, because it was obnoxiously loud, couldn't control volume, kept losing the parameters, etc. etc. So today I called and I already got a new one that I like much better! Alexa has been on no 02 as of yet. She is hooked up right now and sating in the mid to high 70's on room air! I told her cardiologist I was just so frightened we would not even make it to speak with the surgeon on Friday, they said they got nervous too but after everything see she can manage a few more weeks well, he said she is not growing any more at rapid rate so things should not change so quickly it is just a steady decline.
So happy to be back home, Alexa and I were so tired so we went to bed about 8 p.m. so that is why I am wide awake at 1 a.m. but will now be headed back to bed to get some extra zzz's and dreaming of happy endings.