You are currently browsing the tag archive for the ‘Vanderbilt Children’s Hospital’ tag.
I cannot believe that it’s been two days since our last visit to the oncology clinic and I have yet to write anything about it. Time to resolve that….
It was a little bit stressful getting everyone out of the house, but I wanted to have us all go and spend the time together. We took Josiah up to the cardiology floor first so they could do an echocardiogram. They’ve been doing them periodically throughout his treatment to make sure that his heart isn’t showing any damage from the strain of the tumor, the chemotherapy or the radiation. The tech was so friendly and interactive with Josiah, which is always nice. Everything looked good in the EKG, thankfully.
Then, we headed up to the oncology floor. It was so neat and wonderful to have all of the staff commenting on how big and strong Josiah looks… and how big the other kids were getting. The nurse took Josiah’s vitals. He’s up to 33 pounds – we have now surpassed his pre-diagnosis weight! Josiah also is now 37 1/4 inches tall, a full half-inch taller than he was in July.
The oncologist gave us the “schedule” for Josiah’s follow-up care. In general, Josiah will be getting a CT scan every 3 months or so, meeting with the oncologist the week after each scan and blood work every 6 months or so for the next two years.
They went ahead and did his blood work this week, which he was NOT happy about. I know he’s gotten used to not being messed with, but the doctor wanted to go ahead with it since Josiah still has his port in. Yes, they will be scheduling for his port to be removed within the next month!
This, of course, is so welcome and feels wonderful to know that he is done with treatments. It brings up some nervousness in regards to his upcoming scans because they will have to use a normal IV for his sedation. Not sure how that will go. The nurse did tell me that we could put the same numbing cream on his veins, so hopefully that will help.
Before the doctor left, we asked what his official word was on Josiah’s status. He said that there is no active cancer and is in remission. PRAISE GOD!! We are so thankful and humbled by Jesus’ healing of our little boy. It still feels a little unreal and I think that Tony and I are still a bit nervous about what lies ahead. We’re trying to rest in the peace of God and the truth of where we are right now.
It also makes my heart ache knowing that there are so many other children (and adults) that are in the midst of a longer, more intense battle. I heard this week that September is Childhood Cancer Awareness month. Our family is now “aware” of this sad fact year round. Thank God that He is our Protector, Provider and our Peace.
Please continue to pray for our transition into normal life, as well as those families who are in the heat of the battle – for rest, peace, understanding and healing.
Life has been really crazy and overwhelming the last couple of weeks. Hence the delay in writing.
Today was Josiah’s follow-up appointment with the surgeon. We started off going to get x-rays of his chest/lungs. Then, we went upstairs to meet with Dr. Lovvorn. We chatted a little about his vacation in Ocean City, NJ. It turns out that his in-laws are from Haddonfield, NJ – the same town my mom grew up in. ”It’s a small world, after all.”
So, the x-rays show that nothing has changed in Josiah’s lungs, which is great! He still has the air-filled cyst (pneumatocele). It had filled back up with air right after the surgery, but it hasn’t changed since then. The surgeon is a bit irritated with it, but isn’t worried at this point because it isn’t causing any problems for Josiah. Ideally (and what we’re praying for), the pneumatocele will eventually just go away. The possible risks would be if the pneumatocele got infected or burst somehow. We are believing that there will be no problems.
Regarding the tumors, there is still no sign of any growth. The surgeon is very pleased with how good Josiah looks and how active he is. It seems, as far as he is concerned, Josiah is free and clear. Praise God! We have still not had a meeting with the oncologist, but the surgeon said that he would expect that they will move into a monitoring mode. He mentioned that just by watching Josiah, you can tell that he’s doing and feeling better.
I could write a lot more, but it’s getting late. Please be praying for us. We are so thankful for the things that God has done, how He has carried us through and how He has healed Josiah. It is proving to be a hard and challenging transition back into “real” life. Yet again, God is helping me navigate through it all, but it’s not a quick road. I guess it’s sort of like the last part of a marathon. You don’t feel like you can keep going; but if you want to finish the race, you have to push through even when your body is screaming at you the whole time. The joy of the Lord has to be our strength… and I’m so thankful that He holds us in His strong arms.
I can’t believe that I didn’t write yesterday… and yet, I can totally believe that. Things are always a bit crazy in a hospital, but thankfully, our craziness came from a 3-year old’s wants/desires – not medical issues.
I had Luca and Anastasia in the morning, which was nice. We didn’t have a lot of time to spend together, but it was good to have a little bit. I dropped them off at a friend’s around 10 and headed up to relieve Tony at the hospital so he could go to work. Such a wonderful husband & father – willing to be at the hospital and still working to provide for our family.
Tony met with the surgeon briefly in the morning. The doctor said that they heard a bit of raspiness in Josiah’s chest. So, they wanted to give him some physical therapy to get him to blow & cough. Obviously, it’s not a good thing if the fluid and gunk from surgery settles in Josiah’s lung.
Once I got to the room, one of the Child Life Specialists came by with some “toys” (a.k.a. therapy tools). Josiah got a bottle of bubbles, a party blower and some contraption that looks like a coke bottle with string that shoots up in the air when you blow into it. He LOVES the blower and string bottle! He’s picking them up to blow them totally on his own. That’s the kind of physical therapy you like to have.
Josiah and I had the whole day to ourselves. It was nice to have that one on one time with him, even though it may spoil him a bit for when we get home & my responsibilities are tripled. We had fun watching movies, reading books, playing games and playing with some of his toys.
I got really tired in the afternoon, but Josiah didn’t seem to be interested in a nap. A couple of people started praying that he would rest… and, boy, did he rest! It wasn’t until 2:30 or so, but he slept for about 3 hours! I was able to sleep about an hour before my body said no more. My body was done mostly because of the position I was in. These twin beds are not made for two people! However, I was SO thankful for the nap I had. The nurses were great about leaving us alone to sleep, which was a blessing too.
While Josiah slept, I did some reading and found Isaiah 45:3. ”I will give you the treasure of darkness, riches stored in secret places, so that you may know that I am the Lord, the God of Israel, who summons you by name.” There are so many people that I know of who are facing “dark” times – whether it’s illness, job situations, relationships or whatever. This verse was amazing to me how God refers to darkness as a “treasure”! The hard things (darkness) are a gift to us with the purpose of showing His love for us. He has stored riches for us (in character, revelation, etc.) in these hard times and we can find those riches when we seek Him with our whole heart. Wow!
When Josiah woke up, we got some dinner. He actually ate pretty good all day. Then, we had some visitors, a little ice cream treat and more movie time before going to bed around midnight. That’s what a late 3 hour nap will get you. We slept pretty good last night. He only woke up once, I think. So, we had about 6 hours of sleep before he was up and ready to watch more movies.
The surgical team came by early this morning. After checking his chest tube, one of the team members said that there still needed to be more drainage before they would let Josiah go home. So, we will be here through today at least.
We got through breakfast and he ate very good, even though he’s being a bit high maintenance today… and changing his mind a bit more than I would like for him to. We played CandyLand again & blew some bubbles. He actually blew some bubbles on his own, which was a big accomplishment in general.
Around 10:00, the surgeon came in to check on Josiah. He seemed pleased with the drainage and said that they would be starting a water seal on the chest tube. Basically, it’s the next step to getting the tube out. They’ll do another x-ray around the time that they take the tube out. So, it seems we’ll be able to go home Thursday… even though it may be later in the day. Then, he referenced the pathology results not realizing that he spoke with them after he talked with Tony yesterday. I know how that feels. Anyway, all five nodules came back as scar tissue & skeletal muscle… NO VIABLE TUMOR CELLS!!! Praise God!!! I am beyond thrilled to hear how God has worked on healing our little warrior.
The surgeon is recommending that we move into a time of observation for Josiah. That includes a CT scan about every three months with no more therapies at this point. He’s unsure what the oncology team will determine or recommend, though.
What a whirlwind couple of days. I am continually amazed at God’s faithfulness and Jesus’ healing of our little boy. We are so thankful to Him and all of you for lifting us up in prayer so faithfully. I feel somewhat speechless right now. Thank You, Heavenly Father, for loving Josiah more than we do & for taking such good care of him. Thank You for healing him and making him a sign and a wonder to all who see him. Everyone that comes by talks about how good Josiah looks and how well he’s doing. Praise You, Lord!
What a day! We were up before the sun today getting things ready for Josiah’s surgery & stay at the hospital – showered, dressed, snacks prepped for him, breakfast prepped for us and supplies gathered for the day. The sunrise was beautiful. Not quiet enough to make me want to get up that early every day, but it was a good reminder that God’s mercies are new every morning. I need His mercy every day, that’s for sure!
Our wait at the hospital went very quickly and smoothly. No insurance issues, no melt downs from lack of food (from Josiah or me & Tony) and no weird wait times. We had an amazing nurse, Carol, to take us back to pre-op and Josiah warmed up to her very quickly. It probably helped that she let him push the buttons on the scale. 
We met with the surgeon and he went over his plans for the procedure. He said that his main objective was to get some of the nodules out and then, since he would already be in there, to deflate the air pocket. We chatted for a few minutes. Then, we answered some of the same questions over and over to the many nurses, doctors, residents, etc. that came over.
They took Josiah back in a Little Tykes car a little after 7:30 a.m. Tony & I went out to the waiting room to eat breakfast… and wait… and believe. Our friend, Becki came up to sit with us while we waited. It was such a blessing to have someone there with us. We were able to visit for a couple of hours before we got word that Josiah was doing well. Then, about 30 minutes later, the surgeon came out to get us because they were done!
He said that they didn’t even start the surgery until a little after 9, due to all of the prep work they have with anesthesia, IVs, etc. So, his surgery took about an hour and a half. The whole surgery was able to be done laproscopically – Praise God! No large incision! They removed a total of 5 nodules from Josiah’s right lung (1 from top lobe, 2 from middle lobe and 2 from bottom lobe). Then, he decided to test his plan for deflating the air cyst on a smaller cyst to make sure that it worked. It did. He moved on to the large cyst, but he couldn’t get to it due to lung tissue that was tightly wrapped around it. Instead, he took a needle and ended up drawing out about 2 ounces of oxygen out of the cyst. It then became pliable enough that he was able to use the previous procedure to further deflate it and close it off. The surgeon was very pleased with how it went. They did an initial test on a frozen cross-section of the largest mass that they took out and it came back with no viable cancer cells! Praise God! So, if five out of five nodules come back with no viable cells, then they will consider all of the nodules to be dead. Josiah would move into a 3 month monitoring process at that point. This is what we’re praying for!
At one point in our conversation, the surgeon told us he had said a prayer before starting the surgery because he knows he’s not the one to cure Josiah. What a blessing to hear that our son was being taken care of by someone who understands his human limitations and, apparently, God’s unlimited ability. That was wonderful.
We didn’t have to wait much to go back with Josiah in recovery. He had another great nurse, Sara, which was nice because we spent about 6-7 hours with her today. Yes, we had to wait a long time to get a room, but it doesn’t seem that it was that long. Anyway, at one point, Tony went down to get our Chick-fil-A delivery (Thanks Jeff & Nina!). While he was gone, Josiah’s eyes popped open and tried to focus on what was going on. I talked with him a little bit to see how he was doing. One of the first things that he asked was for me to pray for God. So, I did. I prayed for God to help him feel better and take care of him. He had a drink of water and we started a movie. When he started getting irritated again, I asked him what I could do and he asked to pray again. I asked him if I should pray for him to not hurt and he said he wanted me to pray for God. So, this time, I prayed that God would comfort Josiah and give him peace. As I was praying, Josiah closed his eyes and rested. It was so amazing to see his understanding in the midst of trauma… and it was such a gift from God to me because I had just told Tony how much I desire for Josiah’s heart to stay tender to the things of God. Wow! In the midst of his pain, Josiah reached out to our heavenly Father. Thank you, Lord! He ended up asking Tony or I a few more times to “pray for God”… and we happily obliged.
We moved up to our room around 5:00. Tony had gone home to get Luca and Anastasia. So, they made their way back up to the hospital with dinner in tow. We had a little dinner, watched a little Cars and enjoyed being together. After I brought Luca & Anastasia back home for bed, my good friend Dana came by for a visit. It was wonderful to have time with her since she moved away almost two years ago. So, all in all, it was a GOOD day.
I do have a few prayer requests. The anesthesiologist noticed some “secretions” in Josiah’s lungs during the surgery. He said that it’s probably because Josiah is fighting some cold virus. We obviously are praying that he won’t get sick, AT ALL – especially with any respiratory illness.
They took an x-ray of Josiah’s lung after the surgery. It showed that the large air cyst had filled back up with some air. The surgeon said that he wasn’t really worried about it, but it just adds to the mystery of the whole thing. Please pray that the work they did with it won’t add any complications to Josiah’s recovery, now that it has filled up again.
Also, please be praying for protection from infection. Josiah has a chest tube coming out of his right side for drainage purposes. That always increases risk for infection. And then, of course, please pray for peace, rest and comfort for Josiah and our family.
We are all resting in our Father’s hands.
Today has been a full day. We got up early to take Josiah in for his PET scan. It was in the main hospital, but thankfully they had a room with some kid movies in it for us to hang out in. We had to wait about an hour for the radioactive glucose to go through Josiah’s system to be detected during the scan. One of our favorite anesthesiologists was there this morning, which was nice to have the familiar face. Josiah definitely had a bit of a hard time grasping the different location & the fact that they were having to put his tuby in. It must be hard to understand when he’s been out of that mode for a couple of weeks and then to get thrown back into it.
When they took Josiah in for the scan, they told us that they would be sending him over to the Children’s Hospital to recover. That made me nervous because sometimes he wakes up pretty quickly from his sedation and isn’t always very happy, as some of you have heard about. So, we had to get the car from the Main Hospital valet so Tony could drop me off at Children’s on his way to get to work. Then, I went into Radiology recovery… which it turns out is not where they were sending him. So, I had to go from the first to the third floor where the surgery recovery is. They sent him there because of the anesthesia. The lady in the main lobby couldn’t find Josiah’s name on her charts, so it took about ten minutes to figure out where my child was. All the while, I was thinking that he was going to be screaming his head off somewhere in the caverns of recovery. Apparently not, though, because once we got it all squared away, I had to wait about 30 minutes before they called for me. I could hear him calling for me when I got close to him, but he actually did really good waking up. The first thing he told me was that he wanted to go home. Then, in the process of getting him checked out and leaving the hospital, he ate two bananas.
We had a hard afternoon when I tried to get the children down for naps. Josiah did not want to lay down and threw one of the biggest fits I’ve seen from him. Anastasia felt the same way, it seems. So, I finally got Josiah to lay down quietly and had to take Anastasia downstairs so she wouldn’t wake up the boys. She finally went to sleep when Josiah woke up. That has to be one of the most hard challenges of a mom because it equals no quiet down time during the day.
In the meantime, I was also getting messages from the surgeon’s office and from Tony about the plans for Monday. In the surgeon’s mind, he would be doing surgery no matter what the scan results showed. However, Tony & I really wanted to hear the report before they did any surgery on Josiah. They said that the surgeon would go over it with us on Monday morning before surgery, but that they probably wouldn’t hear anything today.
A little before 5:00, they did call us with a preliminary report that the tumors are still in his lungs. They didn’t say whether or not it showed that they were viable or scar tissue. Tony & I discussed the option of postponing the surgery, but it didn’t seem to have many guaranteed benefits. So, here we go.
Monday morning, we have to be at the hospital at 6 a.m. for a 7:30 surgery time. I know some of this will be a little repetitive, but I want to make sure I get it all down. The surgeon will make a small incision on Josiah’s right side (the only side without a scar at this point) and use some type of scope/tool to shrink the air cyst and to remove some of the tumor masses that are close to the edge of Josiah’s lungs. We are praying that the surgeon won’t find anything when he gets in there or that what he does find will be simple to deal with… and NO complications (need for larger incision, bleeding, lung collapse, etc.).
Please pray for peace over our family. Anastasia is having a hard week of teething and separation anxiety. Luca is feeling shuffled around and needs some Mommy & Papi time. Josiah isn’t too thrilled about doing more hospital stuff, even though it’s hard for him to verbalize all of that… it’s showing in his actions. Tony & I are feeling the weight of caring for each child, taking care of work & child care details, fighting off allergy/cold symptoms and trying to move forward with faith that God is truly in control and we can trust Him with our lives & the lives of our children.
I did have a wonderful evening out with friends at SATCO, one of my favorite Nashville hang-outs. I’m up way too late, but I wanted to get this all out while I had a quiet house. On that note, please be praying for rest for all of us as well.
“Trust in the Lord with ALL your heart, and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.” Proverbs 3:5-6
I look forward to the day when I can write on here about the funny thing Luca said or the sweet face that Anastasia made or the fun that Josiah is having… and nothing about cancer or tumors or tests. Of course, today is not the day.
I got a call this morning from the oncologist with the next step in their plan for Josiah. He commented on how yesterday was a busy day for them with all of the conference calls and meetings they were having to determine what course of action to take. At this point, they have determined that they don’t want to give him more chemo if it isn’t necessary (which I TOTALLY agree with). So, they have scheduled to do a PET Scan of Josiah’s lungs on the morning of August 7th. From what I have heard, a PET Scan will show what tissues are active/breathing/processing sugars. In essence, it will tell them if any of the tissue mass is still viable and alive. If anything shows up, they can then do a biopsy of those tumors and get an official pathology report which would help them treat it more specifically.
Needless to say, I like the idea of this plan. We are so thankful that the doctors seem to be taking their time and are really being careful with what steps they take. It also shows that they aren’t overly concerned with Josiah’s state of being. (The surgeon yesterday kept commenting on how good Josiah looked.) In the meantime, we are also looking into some natural/holistic therapies to help Josiah’s body work the way God intended. Please pray for continued clarity, wisdom and understanding for us and the doctors.
Thankfully, in the midst of the hospital things, Luca still comes up with some humdingers, Anastasia snuggles & growls like a little kitten and Josiah has moments of pure silliness and laughter. Those are the moments that I relish in… even if it means that they aren’t sleeping at nap time. ;-)
I know that my life is not nearly as challenging and filled with loss as Job’s, but there is a verse there that is a good reminder for me right now. ”To God belong wisdom and power; counsel and understanding are his.” (Job 12:13)
That actually captures what I rested in a lot today, knowing that God’s timing is perfect and that Josiah is, ultimately, in His hands. The best hands to be in.
Down to the nitty-gritty of our meeting with the surgeon. Josiah went into his arms in the hallway without hesitation, which was an amazing heart-warming thing to watch. That shows some of the surgeon’s demeanor.
The surgeon has discussed Josiah’s case with our regular oncologist, a mentor at St. Jude’s and a few others. They still are not 100% sure what to do, as of this morning. There are a number of the lesions that are along the edges of Josiah’s lungs. They would be fairly simple to “pluck out”. However, since some of the lesions are toward the center of Josiah’s lungs, there’s risk of bleeding and causing him to be a “pulmonary cripple”. I’m guessing there’s many risks & levels of issues that are related to that. It seems that they’ve come to the conclusion that it would be best to do another round of more intense chemotherapy. The hope is that this chemo would ultimately kill/dissolve away what is left of the tumors in his lungs. I’m not sure if they are expecting it to affect the air pocket cysts. We are supposed to get a call from the surgeon or the oncologist by Friday to hear what their final suggestion will be.
Throughout our conversation, the surgeon kept referring to the timing of everything: the timing of surgery, the timing of chemo, the timing of the Make a Wish trip that postponed the previous surgery. We are thankful that he isn’t hurrying into surgery just to make a buck. We are also thankful to have some time to see what God may have for Josiah in this next stage… which takes me back to the verse in Job.
God has the wisdom, power, counsel and understanding that Tony & I need for taking Josiah through this next battle. God knows the outcome… and now Tony & I are seeking what the strategy for this battle is. Please pray for us as we determine how to walk Josiah through it.
Are you seeing a pattern in my irritation with our week? The majority of this entry is exactly like the Caring Bridge one, but there are a few other things that I wanted to share. I am SO thankful for a God who takes care of little details, even when it seems like no one else does. I am SO thankful for Luca & Anastasia and the flexible children that God created them to be and the compassion that Luca has for Josiah. I am SO thankful for our group of friends here in Nashville who rally around us in the midst of insanity to give us the support we need in very tangible ways. I am SO thankful for a warrior husband who leads us through these insane times with mostly love & dignity. (We both lose it a few times because we’re only human. HA!) I am SO thankful for family, even though they’re too far away, that agrees with us in prayer and is here when they can be. And, I am SO thankful that we get a vacation in 9 days! Yay for Make a Wish!!
Now for more details & explanation of all that we learned today…
The whole reason why this was such a quickly planned surgery is because of a few factors, of course. The CT scan on Tuesday showed that the air-filled cyst had expanded some. Josiah’s surgeon had already mentioned the possibility to us of needing to drain the cyst a couple of months ago. Well, when the oncologists saw that it had gotten bigger, they brought it up to the surgeon asking what to do about it. The surgeon discussed the case with his mentors/colleagues that he trained under at St. Jude. None of them have seen this happen in a Wilms’ tumor case and only a few times in pnuemonia-type situations. Since there’s a chance that it could start leaking air, get an infection or pop and Josiah hadn’t had chemo in a few weeks, they felt like they might as well do the surgery this week as a proactive treatment.
We got to the hospital at 6 a.m. and found out about 6:30 that our primary insurance was no longer in the system. So, we had to wait about an hour to get that situated. We got back to the pre-op room around 8 (when the surgery was supposed to start). The surgeon came in about 8:45 and talked with us about what his plans were & why. He told us that we could opt out of surgery today since there was no emergency with the situation and that we had time to talk because he had to go take someone’s appendix out.
Tony & I talked over the next hour about the pros & cons of doing the surgery now or later. We weren’t thrilled about the last-minute nature of it, but we felt that since we were there & it seemed like a wise move that we would go ahead with it today.
When the surgeon came back in, we started talking with him some more about the whole situation. To his credit, he definitely took time talking with us today and went in depth with our questions. He actually pulled up the scans & x-rays of Josiah’s lungs for us to see what he was talking about. Those were mind-blowing. The air cyst (pnuema-something) is about the size of a softball in Josiah’s right lung. On the scan, it looks like a big black hole that covers almost a third of his lung. Crazy to see! The surgeon showed us how the cyst is adjacent to one of Josiah’s air valves, which probably explains why it is filling with air. The majority of the other “tumors” have turned into these air cysts, but they are all small and/or shrinking. There is one lesion that still has tissue involved with it even though they are unsure of whether it’s fully dead or still has some live cells.
Including all of that, brings up the possibility of them having to go in later in the summer to “pluck” out the other cysts/lesions. So, for the larger air cyst, the surgeon’s goal would be to insert a catheter in to allow the air to escape. Ideally, the cyst would collapse on itself & seal off any further air from leaking. There is the chance, though, that because it’s adjacent to the air valve there could arise other issues & they would need to do something more invasive while on the operating table.
That brought up the plans for next week – childcare, the send-off party and, of course, the trip to Orlando. So, I asked him how he saw this surgery affecting those things (length of hospital stay, etc.). He was surprised to hear that we had this trip planned and you could tell that it sort of threw him for a loop with what to do. I could tell because his sentences jumped around like mine do these days when I have a lot going on in my head. As we talked through it, and he confirmed with the oncologists, he determined that there wasn’t any increased risk of something happening with Josiah on the trip involving his lungs (no more risk than there is now). If we did the surgery and postponed the trip, there are too many variables that can come up to guarantee when a trip would work out. So, he said to go enjoy the trip & we would talk about when & what to do with Josiah’s lungs when we get back. He gave us the hospital in Orlando that he recommended if something should happen and gave us his number & email as well.
Since they had put off Josiah’s chemo treatment yesterday because of the surgery, the oncologist had the surgeon send us up to the clinic. That way Josiah’s still on track with his chemo at this point. So, we went up there around 11 or so and hung out for a couple of hours while all of the charts got sent around and pharmacy got the chemo put together.
When I left the hospital, we had been there for eight hours. It didn’t feel like we accomplished very much in that large amount of time, but I guess it was all in a day’s work.
I’m taking the delay in surgery as time from God for the surgeon to gain wisdom & knowledge on the best way to proceed – whether to treat the air cyst soon or wait & take care of it when they take care of other nodules in the lungs so it is just one surgery instead of two. We are also praying, obviously, for added protection over Josiah as we’re on the plane & in Florida.
I think that about covers it all… or at least the majority of what I know. Now I’m going to enjoy a quiet house with a movie and some sweet treats.
What a whirlwind day. I have come to the conclusion that all surgeons and doctors should at some point be on the receiving end of their planning & scheduling. Not that I wish illness on any of them, but there doesn’t seem to be much care & empathy about all the variables that we are dealing with. Of course, I’m not fully sure of what variables they’re dealing with. But, it seems like they could at least call for a short phone conversation.
Not surprisingly, we have STILL not talked with the surgeon to find out what/how exactly they are going to drain the air pocket. We do know that they are planning on doing surgery at 8 a.m. and that they have given Josiah an hour time slot. So, thankfully it won’t be a long surgery.
The surgeon’s secretary also mentioned that Josiah may be able to leave the hospital post-op… or they may want to keep him for 23 hour observation. (Not sure why 23 and not 24 – ha!) So, we’re in the process of planning for an overnight hospital stay… and praying that we’ll be home tomorrow afternoon.
Speaking of going home, I’ll go back to our day today. We all went to IHOP for a yummy brunch together. It was a bit stressful because the kids were hungry and energetic & I was tired and stressed out. Once the food got there, it turned out to be very pleasant…. and the yummy strawberry crepe didn’t hurt.
We got to the hospital about noon. We met a mom and her son who was diagnosed with leukemia in December. It’s always so nice to talk with some of the other families.
When Tony took Josiah back to get his “tuby”, he said that Josiah just cried a little when the accessed his port, which is a great change. Usually, he screams & yells a bit too.
We spoke with both oncologists and got their input. They didn’t have a lot of details since they aren’t the surgeon. We did find out that the surgeon had spoken with his colleagues at St. Jude about this air pocket issue since he has never really dealt with something like that before. The consensus was to go ahead & drain it out. It is a good time to move forward with it because Josiah hasn’t had chemo in three weeks. So, his blood counts are in a good place. Once they drain the air out, they’re hoping that it will scar over & begin to “dissolve” as the dead cells get carried out of the lungs.
I think that’s it for now… I’ll try to get a bit more written later tonight.
Recent Comments