We hope everyone reading this had a blessed and Merry CHRISTmas! We stayed local (since that’s all we can do now with Zion being in the hospital) and we enjoyed Christmas with just our little family (minus Zion… we took him his presents which we helped him open at the hospital).
After posting my last blog update, we had our first week of getting used to life without Celia. I had a really emotional first few days of the week in particular because I was not at the hospital during the day as I had been accustomed to doing for so many months, since you might recall the PICU didn’t allow children. Let’s just say I didn’t enjoy waiting until the evening when George got home from work to go see Zion. And I felt so out of the loop and unable to help or advocate properly for my son being that I wasn’t able to attend rounds and meet with the medical teams during the busy daytimes. I did feel somewhat helpless, which is always hard for me being a Type-A personality. God was really building my faith in Him during that week. And getting back to doing all of the housework myself felt like a HUGE mountain that first week on my own. But God in His faithfulness always removes those mountains and gives me strength for the task ahead when I’m diligent to pray and ask Him for His help.
After Celia left, my parents came the next day for an impromptu visit. It was so nice seeing them and the kids had a great time. This was a special visit because some big things happened while they were here. First, Busia held her grandson for the very first time! It was so touching to finally get to witness it and I snapped a photo we will cherish forever.
Another big event was getting the call a few days later that Zion was finally able to go to the TCC! It was such a joyful afternoon indeed! We thank everyone for praying because God heard and made a way for our son. I was all smiles and truly on “Cloud 9” as we packed Zion and his room up in the PICU and walked him over to the TCC, being greeted by our old friends on that happy little 24-bed floor. Zion did great for the short trip as he decided it was the perfect time to take a little cat nap! As a little side story, there was one room in the TCC in particular that I prayed for God to give my son. It happened to be just a few doors down from the room he was in last time actually. To me, this specific room was the very best location in the entire TCC because of it’s central location and close proximity to the nursing and RT teams. It was sort of my “dream room” for Zion. As we walked into the TCC and turned the corner and I saw the room that they were wheeling Zion into, I had to fight back tears. God gave Zion THAT specific room that I prayed for! My Heavenly Father is so good and so kind to Zion. He is a God that cares about those little things. I felt incredibly loved by God, and even more than that, I felt how deeply He cherished Zion to give him that room. The TCC truly is a special little haven. It’s a floor where the team says, “You kinda run the show down here. So just ask.” That’s my kinda place! Being there is the closest feeling I can get to being “home” with Zion. We can bring our children. It’s a more laid back atmosphere. We have the ability to do more types of activities with Zion. And George and I play a more active role in Zion’s day to day care. It’s a special place and I tearfully told the team how happy we were to be back.
The day my parents left happened to be the day Zion also turned 9 months old. It’s truly amazing how fast time is flying. Thank You Jesus that our precious Zion is almost one year old! That day, the team asked me if I wanted to do my first independent (or “emergent”) trach change. Daddy had already done one a couple months ago, but mommy still had to add this all-important notch to her belt. I was a little hesitant to attempt it on the special day that my son turned 9 months old, but the RT had such a sweet and calm vibe about her, I just felt emboldened to go for it. This is a very important emergency technique that every caregiver of a person with a trach needs to be able to execute in the event of an emergency. What would the emergency be might you ask? The main one that comes to mind is a mucus plug. This is exactly what it sounds like, when a thick plug of mucus literally gets stuck inside the trach cannula. This causes an immediate medical emergency because the patient cannot breathe; therefore, the trach needs to be changed immediately. And the reason for training on how to do it independently is because oftentimes, this emergency will happen when you don’t have a nurse or help around. Zion actually had his first mucus plug not long after this!
The process involves first having your new trach out of the box, with the ties already put on, and lubricant already on the cannula. You also have two small syringes nearby – one empty one which is used to remove the water from the cuff in the old trach before removing it, and another syringe with the proper amount of water used to fill the cuff after placing the new trach. (Many patients on a ventilator need a cuffed trach, which is a trach with a water or air-filled balloon at the end of the cannula which provides a seal around the trach to prevent air leaks. I walked through and visualized all the steps a few times with the RT until I felt confident that I could do them all quickly on Zion. I placed the new trach sitting in the box on the pillow right next to his head, we loosened his trach ties, and then it was show time… 1…2…3…. (holding my breath)…
First I used the empty syringe to remove the water from the cuff in Zion’s trach. Next I quickly pulled the trach out of Zion’s neck/stoma (with the vent still attached to it). Then I reached over and put the new trach into his stoma (while pulling the obturator out). Next, while using my left hand to hold the new trach in the stoma, I then used my right hand to disconnect the vent circuit from the old trach I just removed and then immediately plugged it onto the new trach that I had just put in and was holding with my left hand. (At this point I could breathe, because I knew my son could now breathe). All of that I would say took about 10 seconds. I took a deep breath because that was the hardest part. Next I used the water-filled syringe to add 2.7 mL of water to Zion’s cuff. And finally I used a sealing type of motion to just roll my hands around and toward the back of Zion’s next to pull his trach ties closed. DONE! Phew! In all honesty though, this truly doesn’t compare to what would happen in the event of a real emergency, because in that event, I would first have to pull out my emergency bag, take the new trach out of the box, add lube to it, and have my cuff syringes ready before beginning the steps above. So it’s humbling to know that the real thing will take longer and will certainly be more challenging indeed. I’m just grateful it went well! I’ve attached a video that Cincinnati Children’s did to show what an emergent trach change looks like on a real child if anyone is curious. Thankfully Zion was calm and wasn’t kicking around like this feisty toddler did!
The first couple days in the TCC, Zion took a precarious turn. He was restless and agitated and just seemed downright uncomfortable according to all his bedside nurses. He was unable to sleep well, had a higher than normal heart rate, but wasn’t spiking any fevers. We were all bewildered because without the fever, he likely wasn’t getting sick. But what was causing this? Off to doing our detective work we all went. It’s fun to get to be a part of the brainstorming process with the medical team to figure out what’s going on. After a couple days with no end in sight, the team was willing to make some tweaks to Zion’s vent settings per my request. One of the things we changed was his breathing rate (we lowered it from 30 to 26). And these changes seemed to make all the difference! I was incredibly relieved to see that it was a relatively easy fix of a ventilator setting as opposed to a virus or some sort of illness that would set us back weeks to months. As I’ve said before, I have learned that in so many instances, a trach baby’s agitation is caused simply by improper ventilator settings. But this fact is often overlooked…
Once we got past that rough couple of days, things have been going very well! Zion’s oxygen requirements have been able to be weaned down from an FiO2 of 45-60% that he was on in the PICU, to only 21-27% now in the TCC (remember 21% is room air!) This is amazing progress to finally get him back to this point again since getting sick with Rhinovirus a couple months ago. It’s been an absolute joy to get to pack up my kids, pack a lunch, and head to the hospital every morning to visit Zion during the days and have us all together again in one room. They had missed not seeing their brother for that 2-month period, and the smiles on Zion’s face when hearing his (very loud) brother and sister in his room said it all. It has its challenges trying to wrangle a 2 and a 4-year old while simultaneously holding Zion in his bed, but I’m learning to handle it all with God’s grace. I’ve learned to bring lots of activities for my two kiddos!
Otherwise, the main things we are working on are: getting fully trained to care for Zion at home, informing the nursing agencies to begin recruiting for home nurses, optimizing Zion’s feeds (I’m transitioning him back to bolus feeding from the continuous feeding that the PICU put him on), and meeting with some specialists about a couple health issues Zion has in order to be prepared about what to look for and expect in the future after Zion comes home (in particular Hepatic docs to discuss Zion’s enlarged liver which is likely caused by his heart defects). George and I are hoping that we can accomplish all of our training in the next 4 weeks. So, January is likely to be a very busy time for our family with lots of sacrifice, but it must be done in order to get the nursing agencies to begin recruiting nurses for us so we can get our Zion home soon.
In closing, we wanted to share that Christmas was a very special time, but also a humbling time for our family. In the days leading up to Christmas, we spent a large portion of our time at the hospital. Now that he was in the TCC, Zion could have all four of us in the room with him for the first time in many months. The smiles on his face were amazing. He was truly the happiest I think I have ever seen him. He was smiling these new, cheeky, big boy smiles that I had never seen before! My heart was so full and warm to be in that hospital room with all of us together, playing Christmas music, opening presents, and just enjoying each other’s company. The desire to have Zion home to give him this sort of love and attention all day, every day is growing inside me like a fire. I so want him to have that gift soon, because he has fought so hard and been through more than most adult human beings have in their entire lives.
Now onto the humbling part of this Christmas. I’ll have you all know that I was SO excited to take a photo of Zion in a “big brother” onesie and post it online for the world to see. Yes, you read right! George and I were expecting a little surprise sometime in June. After we learned of my pregnancy this fall and the initial shock wore off, we both truly were excited to simply trust God at His word and see how He was going to show up for our family in this next season. We were just in awe that the Lord would give us another child so quickly during such a busy time as this. We are learning that God does His greatest works in the face of seeming impossibilities. If anything, we were more uncertain about how others might respond or be concerned for us. But this Christmas season, God decided that our little one would go straight from the womb to His arms. So on December 27th, I miscarried our little baby at home, whom we have fittingly named Noel. Please know that we don’t share this for pity. And we also don’t believe there should be shame and secrecy in miscarriage. We share this to honor the sixth little soul that God has gifted to us in our 5 1/2 year marriage. Each soul was given to us on purpose, as a gift and a reward (Psalm 127:3). Noel is worthy to be known and worthy to be named, and so we’ve done both. Please know that we have total peace in this because we believe that we will see Noel and the others again! Oh what a day that will be to meet the children we never knew! God really has given us both a special grace to handle miscarriage – each one has actually gotten easier for me (emotionally). So we rejoice in knowing that Noel is with his/her Savior and has been joined to our other two angel babies, Enoch (7/1/2014) and Hosannah (“Palm Sunday”, 3/25/2018). God’s ways are good. God’s ways are awesome. God’s ways are truly so much higher than our ways. We simply cannot comprehend them with our minds. Just knowing those truths bring so much peace. And if the Lord says that children are a reward, I’d like to think that we are storing up treasures in Heaven.
So yes, we can and will worship the Lord, our sovereign Creator, even in loss. As the scripture says,
The Lord gives, and the Lord takes away. Blessed be the name of the Lord.Job 1:21
- THANK YOU to those who have blessed our family during this Christmas season. We thank our church community group who blessed our children with Christmas presents and mom and dad with always useful grocery gift cards! And we thank all the family and friends who also sent gifts for our children, gifts and gift cards for George and I, and beautiful handmade blankets for Zion.
- We thank God that Zion hasn’t been sick again since leaving the PICU and that God has spared our family so far in that we have all remained healthy this winter season.
- Zion’s most recent heart ECHO showed actual improvement in his heart function. That is the glory of God!
- Thank you to those who served our fellow Trisomy family the Sullivans here in Kentucky this Christmas season. They reported that despite their daughter passing away, this has been their best Christmas ever. They feel so loved by Jesus.
- We are so grateful to the kindness Cincinnati Children’s Hospital extended towards the siblings of their patients hospitalized over the Christmas season. They hosted a Jingle Bell Junction which was a surprise impromptu shopping experience for the parents to bless all their children with FREE Christmas presents of their choice. The presents were even wrapped right there before leaving the event. I was fighting back tears the entire time because of how deeply I felt God’s love in that room. It was a very special event and we thank Cincinnati Children’s Hospital for making it possible.
- We thank the Lord for moving our son back to the TCC so we can begin the home-going process and, in the meantime, can all enjoy our time together in the hospital again as a family of five. The special room that Zion has was icing on the cake!
- I have officially begun homeschooling our 4 year old! I thank God that He encouraged me to just begin, despite all of my inadequacies. My daughter is elated to say the least!
- Please pray that Zion and our family would continue to stay healthy and virus-free, for Zion’s sake.
- As we transition Zion back to bolus feeding, please pray that his tummy will handle the change with feeding. And please begin praying that Zion will handle the addition of enteral foods (given through his g tube). I desire to add in actual foods to supplement his formula now that Zion is older and hopefully ready for more.
- We have exciting news about the nursing agency that we likely will be working with. We heard that they recently have approved for Cincinnati area home nurses to come down to work in NKY thanks to a recent expansion in their licensing. This could finally open up more home nurse prospects for us! We are hoping that this timing will work out well for Zion coming home soon. Please pray that God would send us kind and loving home nurses (both daytime and nighttime) who will be a good fit for our family.
- Please pray for God to open up windows of time that work well for George to get his hospital training done while not interfering with his work schedule and for me to find blocks of time to receive some training without having the children with me. Pray that the trainers will have ample availability to accommodate my husband’s work schedule. And pray for perseverance during this upcoming busy time for our family.
- I ask for prayer that God would help me to be focused and organized with homeschooling our daughter and that He would show me how to be flexible with it as far as fitting it into our busy day of also traveling to the hospital with the kids on most week days. Prayers that I would be less regimented, and more laid back during this time period.