CVICU Day 39

Happy Halloween from Palo Alto. Steele is doing well today. Heart function looks great, feeding schedule going very well. Our medical team is still slowly weeing him off the narcotics with Methadone and Versed. There is new conversation starting with the Heart Failure Team and Cardiology about longer term plans if the new heart does not come in a couple of months. Since his heart function has improved, they will evaluate the second of three open heart surgeries, called the "Glenn". 

My Psychologist recommend that I start writing about the heart transplant and possible Glen and Transplant surgeries to begin the initial thought processing of how the next steps will  move forward instead of a reaction that will set off triggers of fear and anxiety. Yes, I began to receive help from the hospital to deal with my stress and anxiety. I am grateful that these services are available to both myself and Rachel. 

Steele celebrated his first Halloween here. Although, I don't think he was happy about his pumpkin head.

CVICU Day 37

Steele is looking great and our Attending Cardiology Team have said today would be a great day for a new heart. The matching process may take a while however. Steele is 15 pounds! His growth chart is pretty much in a straight vertical line, so they are going to continue with his milk feeding schedule and pull back on the TPN. Since there is the one central line going into his chest, we are doing the "Line Defense! Line Defense!" cheer everyday during rounds.

Ryleigh is adjusting well in her new preschool programs, she loves to visit Steele whenever possible at LPCH, and she is in love with the Ronald McDonald House! There are so many fun and cool things for the kids to do.

You may have seen this on FB already, but here it is again:

Ryleigh is going to be a great role model for Steele

CVICU Day 34

It's been a long journey back home to Portland and back to Palo Alto.

It all started on October 14th with a plane ride back to Portland. Thank you to Tobin Nelson's Family for providing my ticket home. It sure felt great to land in Portland. My good friend and former teaching colleague, Jim Edson, picked me up. I could not have asked for a better reception. Thanks Jim! We arrived at my home and Ryleigh was out the front porch yelling at me "come here! come here!". Yes, the tears again. It was so good to hug my little girl again.

Saa Saa was scheduled to leave early in the morning, so we prepared for her departure and called it a night. I cannot thank the Sanchez family in a lifetimes how much they have supported us during this journey with Steele.

After Saa Saa left in the morning, I left for Seattle for a Spartan Race and a visit with my sister's family in Renton, WA. The mud race went really well and I cannot thank her and Chris for being such wonderful hosts. I really needed a release of stress and temporary leave of absence from the hospital. I love my sister, Katie, Chris and their son Max! Thanks so much Robinson's!!!

Returned back to Portland to begin the shut down of the house and pack up the Versa with Ryleigh. Mounds of lists and tasks that seem never ending. Ryleigh woke up in the morning with a fever and vomiting. Ok, not leaving today or tomorrow, I wanted to sprint down to Palo Alto, but I am not able to do so for the fear of the viruses that will capture both of us and make our arrival to Palo Alto not possible. At RMH & LPCH, you are not allowed to stay or visit the facilities if you have symptoms like coughing, sniffling, running nose, etc...so we decided to stay in Portland until Ryleigh was well and I was not going to get what she had.

After sorting through a mountain of mail and many phone calls to bill collectors, I was ready to begin the process of shutting down our SE Portland home. Everything went paperless, heat, electricity and water are keeping the house alive. Two days later, we were clear and left for highway 101. Yes, a longer trip than I-5, but I highly recommend the extra time for ease and beauty of the West Coast. Ry and I hit Bandon the first night and slept easily after a long day of cleaning and packing.

Bye Bye Portland, Hello Palo Alto!

Once you are on the road, you're having a choice. Go or stop. After 11 hours of travel, we are arrived in Palo Alto. Spent the weekend getting settled into our 125 sq/ft room and giving Ryleigh the RMH orientation. She is so amazing and adaptable to this whole situation. I am awe struck at how well she has handled this whole scenario so far.

Ryleigh is back in pre-school here in Palo Alto for two days this week. We hope to have her back at 5 days next week. Baby Steele is doing awesome, I think he and his medical team have found their common ground. He is listed again as 1A, so now it's the waiting game.

CVICU Day 26

4 Months Old!!

This has been a rough week for Team Steele. On Monday October 12th Steele was showing several symptoms of morphine withdrawal from his morphine weening, namely, a high heart rate, a fever, and agitation. A routine blood sample was taken to make sure Steele didn't have an infection. This is done every time he has a fever. When cultured, the blood sample grew bacteria. Another blood sample was taken the following day on Tuesday October 13th; it did not grow bacteria. So either the blood sample from Monday night was a false positive (poor sterile technique=contamination), or the sample Tuesday night was a false negative.

After careful consideration, the team decided that they were going to treat Steele as if he did indeed have a blood infection and they started a 10-day course of antibiotics and changed his status on the heart transplant list to status 7, which is the lowest status. Their rationale was that if he did have a blood infection, he couldn't accept a donor heart because the surgery would be too risky. Brenden and I were really discouraged with the news because that means 12 more days (10 days of treatment plus two days of proving he is clear of infection) of Steele not being able to accept a donor heart even if a compatible heart became available. Meanwhile, he continues to grow and needs the new heart more every day.

Today, one of the nurses noticed that Steele's peripherally inserted catheter (PIC) was leaking; the bandage covering it was soaking wet. Upon closer examination, the catheter line was broken and leaking all of his heart medication (milrinone) into his bandage. We have no idea how long the catheter line was broken, but the nurses and doctors acknowledged that it could have been the source of contamination in Monday's blood culture. We will never know if Steele had a blood infection or not, but because the team always errs on the side of caution, he must wait 12 days as status 7.

We are very thankful the nurse noticed the wet bandage and found the broken line, if not then Steele could have gone 24 hours without receiving the heart medication he needs and might possibly have had a cardiac arrest. And of course losing the PIC line means needing more access, so we had three different poking attempts tonight (Friday at 5p) to get a new IV. Thankfully, one very gifted nurse, the "vein whisperer," got the IV on the third try. Steele was tough, though, and even gave the vein whisperer a coo and smile after the poking was over.

CVICU Day 21

 

Oregon Represent!

Steele's pain and sedation treatments are being taken away, but it has caused his heart rate to be in the 200-220 range for the last 24 hours. This event is called Tachycardia. Pretty terrifying watching his heart work that hard for hours and hours. There are high risks involved with Tachycardia such as heart failure or a stroke. He is not showing signs of either. Our medical team thinks it was caused from withdrawal from his pain treatment. So, they are going back up on the morphine and ativan until his heart rate comes down to 160-170 range.

We don't know how this will affect his status on the transplant list. Please say a prayer and send positive thoughts his way today.

CVICU Day 18

Saturday's are much easier now in the CVICU

The week went fairly well. The biggest concern was getting his feeding schedule straightened out. Steele was having trouble keeping all the medications (6) down along with the breast milk. Rachel and I talked about his history with reflux and not being able to stomach all the medicines at once. The medications were spread out over the course of a couple of hours and the vomiting problem seems to be gone for the moment.

His arm mobility is much improved, he has a custom splint that he wears for 3 hours and then 3 hours off around the clock. Rachel and I continue to help with his arm therapy and mobility. He moved his arm from the shoulder on his own in the last couple of days and his fingers are moving on their own. Very good signs. Neurology determined in was the positioning of his arm in the Cath Lab that stretched out the nerve which gave him this injury :[. 

He has been running a fever off and on in the last two days which may be associated with him coming off the morphine and his heart rate continues to be high when he gets upset. It takes Steele about 30-60 minutes to bring his heart rate down once he gets revved up! He is finally starting to show his true personality again now that the pain management medications are being weened off. We are still listed as 1A on the transplant list waiting for the big call. 

Enjoy the weekend friends & thank you for your continued support for his Fight For Life.

CVICU Day 15

Steele continues to show signs of improvement with his arm mobility. He started to move his shoulder on his own and we continue to give him the Physical Therapy he needs to recover from the Radial Nerve issue. Steele was given a blood transfusion this afternoon because of low trending in his red blood cell count and oxygen saturation levels. We are still listed and actively looking for an organ donor. Palo Alto is starting to feel a little more normal outside of the construction crew that is working on driving me nuts at 1am every morning. I think its time to purchase the ear plugs.....ughh.

All in all life is straightening out its twisted back down here. We are becoming more familiar with our CVICU Team and our nearby surroundings. We miss our dear daughter Ryleigh, but are able to Skype with her nearly every night. If you have not heard, Rachel's mother, Sarah, has been watching Ryleigh everyday since my journey down to Stanford. A huge thanks to Sarah for taking on such a monumental task! If you have been following the news, you know about the terrible storm that impacted almost the entire state of South Carolina. Sarah is from Columbia, SC. We hope that all your loved one's are safe and sound. Please be thinking of her family and all the families who live in South Carolina trying to put their lives back together after such a terrible string of disasters.

CVICU Day 13

It was a birthday weekend to remember! San Francisco is quite a town. Went to the Hardly Strictly Blue Grass Festival in Golden Gate park & visited the Mission District for some modern cuisine.

Steele's arm is still not fully mobilized. He is moving it around from the elbow down, but his wrist is still flexed in a pretty tight fist. The neurology team visited him again this morning and think it his Radial Nerve was either compressed or stretched in the Cath Lab when his central line was placed. Often patients are put into awkward body positions, so they can see exactly where the line is going. Its not certain whether or not the nerve was injured during this procedure, but it is certain that he lost the mobility after the Cath Lab. The good news is it will most likely not be permanent damage.

Pediatric Physical Therapy came by and gave us a tutorial on how to help him get the daily mobility he needs to recover. So it's a time and therapy piece. The team also thinks the Central Line is okay for now, it is not causing nerve inflammation or damage. Thank goodness!!

The last piece of the puzzle is for our insurance to approve the transplant surgery and some lab work for his blood type. He should be good to go in a day or two.

A new chapter for Steele is coming....

CVICU Day 11

Hi Friends. Steele was approved for the heart transplant list yesterday morning around 10am. Best birthday present ever! One note about "The List" is this, patients can be moved up and down a 4 level scale depending on an algorithm that all the medical team buys into. I have not figured it out yet, but he is listed at a 1A, which is the highest and most critical need for the organ.

We talked last week about his lines that were placed into his chest. Here's a current pic (taken on 10.2.74)

You notice the area around his left shoulder has inflammation and a line coming out of the skin. This is called the central catheter and it allows direct access to the veins that carry blood to Steele's heart. The placement of this line has caused the Bracial Plexus nerve or some combination of the nerves to make is arm lay limply at his side with a clinched wrist. 

Here's a visual:

Our medical staff has done ultrasound to determine if the following were going to interrupt his overall mobility and may prevent his status as a 1A. The team could not find anything abnormal, but Steele is still not giving his left arm the usual movement as he likes. He is wants to throw his right arm over to sleep on his side, but since the placement of the central line, he does not use his left arm to throw him the opposite direction.

So, now there is a discussion happening about moving the central line out all together. Very frustrating due to the focus on getting "access" to his heart and central arteries for measurements and meds. Time will tell.

I want to personally thank all of you and continue to thank all of you for the Steele Fight for Life Campaign!

We had a huge day today over 7K raised for our family!!! Truly thanks. Please continue to spread the word:

If you have 5 minutes, you can always help us in the following ways:

1) Share our link (https://www.giveforward.com/fundraiser/sr5b/steele-s-fight-for-life) on your Facebook Timeline.

2) Email our link (https://www.giveforward.com/fundraiser/sr5b/steele-s-fight-for-life) to 5-10 of your closest friends and relatives.

3) Send lots of positive thoughts to Steele Thwing's community.

Thanks again for your support!

Sincerely,

Brenden

CVICU Day 9

I arrived early at this hospital this morning to make sure that I did not miss rounds. Steele was extubated around 10:30 pm. When the team came by, I immediately addressed the issue about the change in plan from his PICC line to a central line in his upper chest. We had a lengthy discussion of how placement procedures are done in cath lab and how it was better to have better "access" to his heart through the clavicle region of his chest. Using a PICC line near the femoral artery is only short term due to the location and presence of it getting infected since its near his crotch. Ok that makes sense, but why were we not informed by phone? "We did not think it was a medical emergency and it looked good to go ahead and place the central line." I explained that in the past, we were always updated to changes in a medical procedure, and I would appreciate the heads-up from now on."Yes, we understand it was not thoughtful of us to get consent, but this was necessary to move forward". The difference between a PICC line and a "Central Line" is the distance that the tube travels to the heart. Central lines are much closer to the heart and are placed in left subclavian vein (which travels to the heart). Direct access with less travel time and much longer lasting for what they need to do with the tubes. There are two lines that form this central line and end at different points. This is used for medications that don't mix well and could possibly crystallize or clog the tube. It was good to get that discussion off my chest and have our first coming together moment as a new parent with concerns about his care. I realize that they are doing their very best to keep Steele's heath, body, and mind in a good spot. I'm just so tired of the constant rhetoric with "we need access to this..."

Anyway, it felt like we were starting from ground zero finally. So begins the recovery and trajectory of Steele's name on the "list". He was resting well and all the Doc's that I spoke with said "he looks good clinically..."

Happy for now, who knows what tomorrow will bring.