Month: July 2017

I’m doing an update that’s not a “weekly” update because his 5 week update will be 1 day post op now. Yes, a lot has changed in the last 48 hours. 

Friday afternoon, ENT had to come readjust, re-suture, and re-tape Kaden’s ET tube (his breathing tube) for the 3^rd time in his short life. One of the ENT fellows, Dr. Hill, who had previously done this for Kaden, had one of the head ENT doctors attending with her while she did this procedure. Apparently, that doctor was very unhappy that Kaden still has his ET tube, which is considered a critical airway for him, and lit a fire to get him a more secure airway ASAP. None of this was discussed with me on Friday afternoon/evening, and is wasn’t until I asked the night nurse where his evening does of sirolimus was that I found out they were stopping that medication because they needed to start a steroid so that he could go into surgery early next week. WHAT?!?!?!?!? So, as you can imagine, I pitched a holy fit and had my nurse start paging everyone (ENT, surgery, attending NICU doc, etc.) to try to get to the bottom of it. If you remember, Kaden wasn’t due to go in for surgery again until Aug. 7^th. His main doc and surgeon, Dr. Olatoye, is in South Africa until the 6^th. At this point, everyone is gone for the weekend because it’s Friday night at 9pm. So, I told the NICU doc to give his sirolimus and that no plans for Kaden are to be changed until I get some answers. I was back at the hospital very early Saturday morning so that I wouldn’t miss any doctors, since I knew they would be looking for me to see why I was going against their plans. I started with a visit from Dr. Hill. She explained to me what had happened the previous evening and said they hadn’t talked to me because it was still a discussion and not a plan. Then why the heck were there orders given to stop a drug that is having a very positive impact on Kaden?!?!?! Apparently, this discussion (which was happening over text) between Kaden’s head team members went on well into the night on Friday. She was able to answer all my questions, share with me the reasoning that this is suddenly so urgent, and reassure me that ultimately, the decision to follow their advice and move the surgery date up was ours to make. After visiting with her, I did understand she had some valid points in that Kaden’s airway becomes more and more compromised each day but I was still feeling very uneasy about Kaden going back into the OR without Dr. O. Shortly after visiting with Dr. Hill (ENT), Dr. Lee (surgery) came to visit with me. He is one of Dr. O’s associates of 8 years and explained to me that the surgery team is in full support of the ENT team in getting Kaden to the OR ASAP. I shared with him my anxiety about going into the OR without Dr. O and he assured me that Dr. O trusts him completely and they are very like-minded in care of their patients. He said he thought if Dr. O was there to assess Kaden, he would agree. He answered my medical surgical questions and then I told him I needed to move this to a spiritual level. I told him I know that even though Dr. O isn’t here to assess Kaden’s situation, he would know if it is a good idea to proceed without him because God will tell him. He agreed and told me he would share my concerns with Dr. O and then let me know as soon as he heard back from him. He then shared with me the scripture I shared on FB, Jeramiah 29:11, as he is also a Godly man. When he left, I sat down and looked up this scripture. It gave me a great deal of peace, so I prayed to know if I needed to put my own anxieties about proceeding without Dr. O aside because it is what Kaden would need. Shortly thereafter, Kaden started having a hard time when they would suction his ET tube and I had a very strong impression that his airway was not likely sustainable for another 10 days. He is also getting more strong and wiggly as he’s getting older and has found ways to get his hands free from the swaddles and wraps we use to keep his hands contained. If his hands get free, he could reach up and grab his ET tube which would be the worst-case scenario. At this point, I’m realizing that I really need to start wrapping my head around a Tuesday surgery date. So, I sit down to pray and ponder some more and open my prayer list notes. Yes, I have so much to pray about these days that I have to write it down, but I’ve also seen that when I pray more specifically, I get more detailed guidance. The top 3 on it were for Kaden to have his surgery and recover quickly enough for me to get home before my big kids start back to school, for Kaden’s swelling in his tongue to continue to come down so that he won’t have to have a tracheostomy, and for his doctors and medical teams to know how to best care for him (I promise the list is long and not only about Kaden, but many of YOU!). At this point, I realized all those prayers are being answered, just not necessarily the way I wanted them to be. So, I had my answer and, thankfully, Jason was here so I was able to share the events of the morning, my thoughts and impressions, and hear his. All that was left was to hear back from Dr. Lee that Dr. O was in complete support of the new plan and that Dr. Rosenberg, the ENT that was with Dr. O in Kaden’s initial BIG surgery, would be the surgeon to perform Kaden’s DL&B (Direct Laryngoscopy and Bronchoscopy, basically looking around in his airway to see how well it’s healed) and potentially his tracheostomy should SHE decide it’s necessary after every other option has been exhausted. I am still hoping for a miracle here, but I’m being told and I understand it’s more likely that he will have to have a trache. I had my hopes set on this one more week before surgery for the sirolimus to bring down the swelling in his tongue more, but his doctors all agree that they believe it has done all it is going to do. Let me repeat, I have not lost hope in a miracle here. Dr. Lee did come back in the afternoon to confirm Dr. Rosenberg will be the surgeon and Dr. O gives his blessing for Dr. Lee to take his place and proceed without him. I still don’t like that this is happening without Dr. O, but I do now know this is the best plan for Kaden. Ok, that was a super long explanation of why we are moving his surgery date up but it was a mighty struggle so I wanted to make sure I have it written down. I also want you all to know that I know God hears and answers prayers exactly when we need him to and provides peace and comfort when things feel scary and chaotic. Please, keep the prayers coming! Especially on Tuesday morning, if you think about it, please offer a prayer for Kaden and his surgeons and medical team.

Kaden is 4 weeks old today. It feels like I’ve been here in Houston for an eternity, yet hard to believe this little boy is already 4 weeks old. Kind of feels like I’m stuck in a time-warp. Anyway, we had some good news the end of last week. We found out that Kaden does not have Joslynn’s COLA1 gene mutation (the cause of her brain small vessel disease, epilepsy, hemiplegic cerebral palsy, developmental delay, and autism), nor does he have Judson’s NDI (Nephrogenic Diabetes Insipidus, a kidney disease). This is very exciting as we can now turn our full attention to moving forward on his path to recovery without worry of other medical conditions. We also found out that he will go back into the OR on August 7th. When Dr. O gave me that date last week my heart kind of sunk. August 7th seems so far away, but Dr. O, his surgeon, wanted to really give the sirolimus medication more time to diminish the size of his tongue as much as possible so that we’ll know we gave him the best chance at not having to receive a tracheostomy. His tongue IS diminishing in size, so we’ll just keep hoping and praying it continues to come down over the next week and a half. He will, however, definitely be receiving a G-tube since it will still be a long process to ensure he is able to swallow and use his airways appropriately. After his next round in the OR, he will need about a week to heal, a week to educate me on home care for him and make sure I’m comfortable with it all, and then we may get to come home!! His docs and I set a goal to get me home before the kids go back to school. Please pray for that for us!

Jason thought I should mention some of the many miracles we’ve received through this process. We can look back and know for certain that God’s hand has been in this from the beginning. Due to the concerns I had about Kaden’s potential genetic issues based on the medical challenges his siblings have struggled with, my first OBGYN, Dr. Tse, and I decided we would have the high-risk doctors do more in depth genetic testing than what is typically done and have that team follow me with my pregnancy where genetic issues may be concerned. My initial genetic testing didn’t show any issues, but with the concerns about fragile brain vessels like Joslynn has we determined that my anatomy ultrasound at 20 weeks should be done with the high-risk doctors because their eyes are more highly trained to see any potential issues like that. That is when we found Kaden’s neck mass. Had a regular tech been doing Kaden’s anatomy ultrasound, this could very easily have been missed. The other miracle in working with the high-risk doctors is that Dr. Anderson, who initially found the neck mass, referred us to see the surgeon at Cook Children’s, Dr. Thomas. He was certain he could handle removing what we thought then was a cervical teratoma but encouraged us to come to Houston to consult with the doctor he had trained under, Dr Olatoye. Had we not gone through the chain of events that we did to bring us to Houston, Kaden may very well not have made it after his delivery. If you’ve been keeping up with my blog from the beginning, you’re well aware that there are many many other miracles we’ve experienced through this journey. We continue to see God’s hand in our lives daily and feel the presence of guardian angels.

Kaden is 3 weeks old today and 16 days post-op. I have been in Houston for 46 days. That’s quite a few numbers, but who’s counting?😉 Can you tell I’m anxious to get home? But still no closer to knowing when that could be a possibility. ENT wanted to take him back to the OR tomorrow to look in his throat and see how well he’s healing inside, but it is being put off for at least another week. His surgical team wants to give him more time on the Sirolimus to see how much more swelling we can get to come down, especially in his tongue, because when they do go back into the OR, they will remove his breathing tube to see if he can breathe on his own and if he can’t due to his tongue still being too swollen, they will trache him (perform a tracheostomy). They may still have to even with waiting another week but at least we will have given him a better shot. I have been told to plan on him having a g-button (feeding tube going right into his stomach) regardless of when they go into the OR. And whether or not he can breathe without a trache, he will still need many procedures in his mouth and throat and they want him to have a way to eat throughout those procedures. So for now, we continue to watch and wait, praying the medicine helps but being willing to accept whatever is best for Kaden’s success.

Saturday evening we had a little scare. Kaden’s breathing tube had slipped down too far and was making it so he had a hard time being comfortable and getting good air. So the ENT team and anesthesia team had to come to his room (seriously, like 10 people) to reposition and re-tape it. Since it’s a critical airway, they have to be prepared to do an emergency tracheostomy should they lose his airway during repositioning. Thankfully, they were able to get it all taken care of with no issues and he has been resting comfortably every since. He still hates being turned, repositioned, and having his diaper changed, but other then that, he seems to be tolerating everything he has to deal with quite well.

I am so grateful for the gospel of Jesus Christ that allows me to have the comfort and support of a loving ward family wherever I am. I feel such wonderful support from family and friends at home (Thank you Jeni and Tricia for being my companions last week) and throughout the country but am also receiving such sweet kindness and caring from the local ward I’ve been attending here in Houston. The sweet sisters of this ward check on me consistently, send gifts and care packages, and come to visit Kaden and I. THANK YOU WEST UNIVERSITY WARD RS SISTERS! I feel so sad for the families that have babies here and seem so alone and unsupported. I try to befriend them and offer a smile and encouragement. I have even had the opportunity to share my testimony of the love and care I feel from my Heavenly Father and Savior and the perfect way he has set up his gospel to give me the support I need, right now especially.

The spirit is so strong in Kaden’s room. I know those who enter can feel it. He definitely has a very special purpose in this life and is already fulfilling it on some level. I have lots of special spiritual experiences daily and can see and feel God’s hand. For example, several days ago, there was an area of Kaden’s surgical site that was looking as though it may be getting infected. I know Dr. O is super busy so I don’t request him at Kaden’s bedside very often. He has fellows that check in on Kaden daily. But this particular morning I knew it needed to be Dr. O to look at and assess Kaden. I asked the attending doctor to page him and prayed it would work out for him to get to swing by at some point in the day. Not 20 minutes later, we started rounds (where the NICU doctors and nurses caring for Kaden that day meet and discuss how he’s doing and make any changes to his care they deem necessary) and Dr. O walked up. The attending doctor hadn’t even had a chance to page him and mentioned as such. At that point I said, “well, I prayed him here so he didn’t need to be paged” to which he replied “and now you all know who I work for.” He has helped me have such a deeper understanding of our Savior’s love and ability to always be present in our lives when we need Him. He healed the sick, and Dr. O is serving as His humble instrument to heal my sweet boy. All of Kaden’s doctors, nurses, and care team have been spectacular which shows me HE IS HERE.

In case you’re not on FB and didn’t see this post…I don’t have any cell service in Kaden’s room, which is where I am 90% of the time. FB Messenger works great in here for phone calls and messages. If you text or call and I don’t get right back to you, this is why. Thanks for the continued words of encouragement, all the checking in to see how I’m doing and how Kaden is healing, and, of course, for the continued prayers!

Kaden is looking so much better every day. He is now 9 days post-op. His swelling has continues to decrease daily, so we are able to see more of his true features now. He even opened BOTH eyes yesterday for the first time! It was so special and exciting to be at his bedside and know he could see me and interact with him. He is coming off his IV nutrition today and taking full feeds of my milk through a feeding tube. We have been waiting for this to happen so that he could start Sirolimus, the medication that should start helping to dry up some of the remaining bulging lymphs. We are especially hopeful that it will work well on his tongue so that when he goes back into the OR in a week or so, it won’t impede his ability to breathe on his own. Otherwise, he will likely have to receive a tracheostomy at that time. Most of the time he is resting peacefully, but he has times, and even days, like today, where he just seems to be so uncomfortable and in pain. He has so many tubes and lines going everywhere in his poor little body. Please know the continued prayers being offered in Kaden’s behalf are needed and appreciated as we continue on this journey. The quicker he heals with the least invasive procedures, the quicker we can get home to the rest of our family! 🙂 That being said, we will continue to do whatever is necessary for Kaden’s best healing and outcome.

One of my dearest friends, Krista Naylor, just lost her husband so if you could please keep her and her 2 sweet girls in your prayers, it would be much appreciated. If I wasn’t here with Kaden, I would be on a flight to her. I can’t even imagine the heartbreak they are dealing with right now but am praying they will have angels surround them and lift them through this challenge as I have felt so strongly through Kaden’s journey.

This past weekend was so amazing and horribly heartbreaking as I was able to spend a couple days with my WHOLE family. The kids got to meet Kaden for the first time on Saturday! We really enjoyed our time together and then they left on Sunday and my heart broke as I had to stay behind. Being with my family made me miss being a full time mom to ALL my kids and being home. But then I go back into the hospital and see our sweet Kaden and remember that we are where we need to be, doing what we need to be doing in life right now.

Kaden is still in recovery mode 1 week post-op today. He started having small amounts of my milk through a feeding tube on Friday night and has been tolerating it well. His doctors want to see him eating well before they take his surgery drains out and start him on the medication that will hopefully help shrink more of his lymph fluid buildup.  He also opened one of his eyes a couple of times Friday for a few minutes!! It was so wonderful and exciting! They tried to back off his pain meds a little on Friday but he didn’t tolerate it well and seemed to be in quite a bit of pain so they bumped him back up on Saturday. It’s all about just keeping his breathing tube in place, keeping him suctioned, cleaning his drain sites, and managing his pain/discomfort. We’ll just keep praying he heals well and we will have good outcomes when he goes back into the OR in a week or two to see how things look and what will come next.

Our sweet boy is one week old today. He’s had a pretty rough start to life, but has proven to be a true warrior, fighter, and champion through it all! With everything that he’s been through he has remained strong and stable. He still has quite a bit of swelling from his surgery 2 days ago, but that’s normal and, after tomorrow, it should start decreasing.

So I had 2 exciting things happen for me this evening…I got to change Kaden’s diaper for the first time and I also got to help with his oral care! He’s intubated and has a tube draining his stomach so those combined with a swollen tongue means he needs a little clean up now and then. Anyway, I’m sure that doesn’t sound super exciting, but since I can’t hold Kaden, every way I can care for him is so special and important.

Hope you all had a safe and happy 4th of July!

Today was another big day for Kaden. He went in for his big surgery just before 8AM. It started with ENT doing an exploratory procedure through his airway to see what they were dealing with. Dr. Rosenberg was the surgeon in charge of how the lymphatic issues were affecting his throat/esophagus/tongue. She showed us in pictures where his voice box is and how it’s affected. It’s swollen and doesn’t look pretty, were her words I believe. There was also quite a bit of swollen cysts they were able to remove at the back of the throat. All that to say, she is encouraged and hoping that with the bulk of the mass gone and the opportunity for things to start draining that some of that will take care of itself and if not will be taken care of through medication and/or sclerotherapy. She is an awesome doctor and even teared up as I did while thanking her for helping our sweet Kaden.

Then Dr. Olutoye came to visit and again expressed that it went better than expected, even saying he was done sooner than expected, even though we didn’t see him until just before 7PM. What you should know is these two surgeons that worked on Kaden today never left him, not for 1 second, not to pee or eat or anything. AMAZING! Anyway, Dr. O said his neck skin will be a bit flappy at first but will tighten up over time. He still has some swelling in his face because it wasn’t safe for them to remove anything above his jaw line since there are so many nerves that could be damaged. So, either those areas will begin to drain through the drains they have in place for his healing period or will find their own natural way to drain OR they will start backing up and will hopefully respond to medication and start shrinking or need to be treated by sclerotherapy. His incision is pretty much from ear lobe to ear lobe but tucked back under his chin in that crease where it shouldn’t be super apparent. He was stable the entire day throughout the whole surgery and had very little blood loss but will still need a little blood for a while as he recovers.

For the next 2-3 weeks Kaden will be strictly in recovery mode. They may start the medication in a week or so but it will depend on how he is doing. He should be able to start getting my milk b/c they were able to place a feeding tube down his throat. YAY! He will continue to be sedated and on pain meds but Dr. O did say they will let him wake up enough to open his eyes so we will be anxiously awaiting that milestone.

He is in recovery now and we are waiting for a call to tell us we can go back to his bedside and see him. We have had such peace and calm today. We know angels have been attending us, and we feel the power of the prayers being offered in our behalf. It is kind of crazy to think of the reality and gravity of what we’ve been through and what Kaden was dealing with today and know that I should be scared, anxious, nervous, etc. But we have not been. Jason, my mom and dad, and I have been here all day with such peace and calm assurance that everything is going well and going to be ok. I have been weepy a few times but I feel like it’s a combination of hormones and just feeling the spirit so very strong with me today. No tears of sadness or worry. So, please know as you’ve been offering up prayers today that they are felt and I have no doubt that Kaden had such a successful surgery because of your amazing faith. THANK YOU!!

Kaden Richard Lee was born at 10:01 AM on June 28^th, weighing 10lbs. 8 oz. and 20 inches long.

Sorry it’s taken a few days for me to get around to this. I didn’t anticipate how sore and miserable I would be feeling, on top of everything else going on with nurses doing this or that to take care of me and doctors coming in and out to talk about my care and recovery as well as how Kaden is doing and the hour by hour plans for him. And when I have had a few minutes I’ve barely been able to keep my eyes open from exhaustion. Ok, all that negative garbage out of the way now, I am recovering well and Kaden is stable.

So, we’ll start in the OR…Kaden’s team had planned on having about a 2-hour window to secure an airway for him. It only took a few minutes, which was such an amazing, HUGE blessing! On Monday for my ultrasound, he was measuring 8lbs. 10oz! Whenever he has had measurements done in utero, which was actually pretty rare (they really just were constantly measuring his mass and my fluid levels), he was measuring between 2-4 weeks big, but his due date was never changed. I think I must have actually started this pregnancy in Sept. rather than Oct. And I truly believe he was overdue by a few days, for a few reasons. 1. I WAS HUGE! 2. He always measured big 3. I went into full on labor on June 22^nd which is when they did my second amnio reduction and put me back on mag. Regardless, he is a big boy and this works in his favor for the major surgery he will have on Monday. Yes, Monday July 3^rd is his big day. He will spend around 10 hours in surgery where he will have the majority of his lymphatic mass removed. They are guesstimating he actually weighs around 7.5-8 lbs. which means the rest of his 10.8 lb. weight is his mass. So, he has between 2-3 lbs just hanging out on his chest. This makes things tricky since babies are already quite fragile. He can’t handle that weight on his chest, so they are moving him from side to side to keep the weight off his little body as much as possible. He is receiving all of his nutrition through IV until his surgery and being kept sedated so that his airway remains secure. I have not held him, which is the hardest part, and have no idea when I will be able to. For now, I go sit by his bed and hold his hand and kiss his sweet head and tell him how very much I love him. He has had 2 beautiful blessings. He was given his name and a blessing sharing his special mission in this life yesterday by Bishop Fenn and Jason. Then this morning he received a blessing of healing from Jason and my dad for all that he is dealing with and all he will be going through. It was very comforting to hear of our Heavenly Father’s love and protection over him. I’m sure there is more information I could pass along but it will have to wait until I have recovered a bit more and have some good rest. I will post pics tomorrow and will send an update for sure on Monday after he is out of surgery and we know how it went. I’m grateful for the many wonderful family and friends that continue to pray for Kaden. Love and hugs to you and yours!