First, a general recap of the main points:
- Keegan has been doing well overall. His labs are starting to stabilize. Inflammation markers are almost normal, which was earlier than the team anticipated, but his liver function is not, which is taking longer than we anticipated. His blood counts are all holding steady due to the boost from steroids. Today was declared a "lab holiday" for Keegan, but he will have a very big draw tomorrow. After daily labs for so long, even one day has me on edge. Keegan's liver is "down" even more today, which means it is enlarged to the point that it can be felt by pressing on his tummy. We are hoping it is due to fluid retention and nothing more sinister at this point, which brings me to our next point.
- We are trying to aggressively treat Keegan's fluid retention/weight gain over the next few days for several reasons. His belly is very distended; he has been very "positive" (more intake than urine output) the last few days, and his blood pressure is way too high. He is now on three different diuretics, in addition to increasing his blood pressure medication. The goal is to get him to lose about .4kgs per day (0.8lbs). I don't think we will get there tomorrow. This is all assuming that what we are seeing truly is fluid retention. We are also walking a fine line with these diuretics and his kidney. Drying it out too much could be dangerous, but we will return to daily labs tomorrow, along with watching his weight, appearance, fluid balance, and blood pressure.
- Keegan's GI system is giving us all the shock of our lives. He has continued to have soft stools daily since Wednesday. Simply amazing. He has been successfully eating small meals of baby food and dry carbs each day and has tolerated three bolus feeds of 2 oz per day of a new tube-feeding formula. This has allowed us to stop his TPN for the last two days!! So far, so good. Even better? As part of our fluid-retention-plan-of-attack, we are holding ALL fluids overnight, so Keegan is only attached to his heart rate/saturation monitors tonight!
- While we have been ecstatic to see some huge progress on the GI side, it seems to unfortunately be coming at a pretty good price. It hurts to see his belly this big. You can see every vein in his abdomen clearly against the skin, and at times, it is so tight it seems you could bounce a coin off of it. Sometimes he can't even sit up straight because it makes him uncomfortable. Keegan doesn't speak much and rarely can communicate with us what exactly hurts when he is in pain. Not now. He is moaning and groaning, grabbing his belly and saying "it hurts, it hurts" many times a day. Although the "quality" of his stool is improving, there seems to be way too much of it and too difficult for him to pass (I know that's a bit graphic, sorry). We have been putting him on the potty several times a day to help encourage him to pass it, but he has such a difficult time and is so stressed about it, that I worry we will end up making him fear the potty completely. Again because of Keegan's communication limitations, we don't know if this is all just due to to his GI system learning to work properly or a true problem. Our GI doctor heard our concerns on Friday and shares them with us. He wanted to stay the course unless Keegan became inconsolable or constipated (ha!) over the weekend to get a bit more data, as it were, before going forward with any more testing.
- Keegan is now down to the same amount of steroids he was on during the "mini-pulse" in June, which is still a very large dose. We haven't seen a fever out of him yet, but his heart rate has gone back up into what used to be "fever warning range" a few times. We will just have to wait it out a bit longer.
- Not sure why yet, but Keegan seems to be utterly exhausted. He wants to sleep a lot, doesn't want to walk, wants to be carried, etc. We've been limiting him to one afternoon nap, and he is still going to bed about on time.
- The steroids have made him miserable. There are a lot of crying, plentiful screaming, and abundant meltdowns coming from room 819. He, himself, is miserable, and he is plain miserable to be around. I hate steroids.
Second, some of the bigger events of the last few days:
- Thursday, Keegan had to have his first IV iron infusion. The level of iron in his blood stream has been virtually zero since about April. Now that he is more stable, hematology said it was time to proceed. IV iron carries a very, very big reaction risk. So much so that a doctor has to physically be present in Keegan's room for the first 30 minutes, and a nurse has to take his vital signs every 30 minutes for the entire 4-5 hour infusion. Keegan tolerated it very well overall. We will see how well it worked with labs tomorrow. More than likely, this will become a fairly regular treatment for him.
- Friday, Keegan's evening just before bed was quite eventful. He was overdue for his monthly inhaled antibiotic used to prevent a certain type of opportunistic pneumonia. At home, this is given in the Center for Cancer and Blood Disorders in a filtered, negative pressure chamber to keep it out of the general air circulation. It's a bit different here, so we attempted to outfit his room with a HEPA filter and administer it on the floor. Keegan wasn't too happy about that idea and let everyone within ear shot on the surrounding floors know about it. Around the same time, he received a new IV blood pressure medication. Between the two (probably the BP med), Keegan had a mild allergic reaction. He broke out in some hives, started retching and throwing up, and was complaining about his tongue. IV benadryl seemed to nip it in the bud before it got bad. Needless to say, we learned quickly about a new drug allergy!
Lastly, the magic word ... "discharge":
- Tuesday, the plan was to leave the hospital but stay in Boston for a few weeks. By Thursday, we were reevaluating that idea for the just flying home next week. GI was a main reason to stay here outpatient, but so far that is going well. The other reason to stay was to make sure a team of doctors are in place at home to take over Keegan's care.
- If Keegan doesn't throw us any more curveballs, we may be able to stay inpatient through next week and fly home next weekend some time!!
- I don't have energy to go into the care coordination issues at home right now. Another post for another time.
A tuckered out Keegan.
The iron infusion on the right.
TPN under the amber bag on the left.
In hindsight, writing smaller updates more frequently would have been a better idea! Oh well. Hope I didn't leave anyone or anything out. Thank you once again for each and every prayer and well wish. I simply cannot put into words how much each prayer means for my precious Bug. Keep them coming!