Jack’s Big Break

Among the list of medical issues that Jack has, one is scoliosis. Unfortunately, this is an issue that regularly follows CDH and Jack is no exception. We knew of his curve at an early age due to all the x-rays he was given. But, there were many other medical issues that needed to be addressed first. Tracheal reconstruction, bowel resection and coarctation – not to mention the repair of the hernia itself. It took a while to get to the non-life threatening repairs. One of the most recent being his hip surgery and subsequent spica cast. But before we went to see his doctor for his hip, we had to see his doctor about his spine. This is when we heard that Jack’s curve was severe enough for a Mehta cast. This is a cast similar to his hip cast in that it is a plaster cast used to immobilize him as he heals and grows. There would be no cutting involved in the surgery, but they would have to put Jack to sleep and straighten his back before casting him. He would then get a new cast every couple of months as he grows.  But since the hip surgery was more pressing, that would happen first.

Following his hip cast, Jack was given the physical ability to learn to walk – which he did in record time considering his set-backs. Since this past summer, he has been walking as his primary method of mobility and is slowing defining muscles which he had never properly used before.

We all went back to the orthopedic surgeon’s office this past Friday to discuss the next steps in Jack’s great body make-over. More x-rays were taken and we sat in the waiting room and the exam room waiting to see the doctor and trying to keep Jack’s mind off the fact that we were back at the hospital.  And I do have to say that the first appointment of the day is by far the best. There really was little waiting.

The doctor came in and only took a quick look at Jack. He seemed to already know what he was going to say. Jack’s top curve had not changed overall from the x-rays taken nearly a year devious. This was good. The bottom curve, however had IMPROVED by nearly 10 degrees. Evidently, the use of his back muscles to walk had strengthened enough to straighten his back a little. Not only will Jack not get his cast, the doctor wants to give it another 6 months. If the curve continues to improve, he won’t be getting a brace either!

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Jack is on the CCHMC Blog!

Check out my first post on the Cincinnati Children’s Hospital Blog! It’s about Jack overcoming CDH and how we are becoming a “normal” family. Enjoy!

http://cincinnatichildrensblog.org/rare-and-complex-conditions/when-life-gave-us-lemons/#more

Event Changes – Third Annual CDH Awareness Blood Drive

Many of you may be wondering why there hasn’t been any information circulating about the Third Annual CDH Awareness Blood Drive. After all, the Holy Trinity Festival is on August 1-3, 2014. Well, unfortunately Hoxworth Blood Centers has changed their criteria for blood drives scheduled on the weekends and the CDH Awareness Blood Drive no longer meets their criteria for units collected. I do want to add that though I am saddened with their decisions, I will continue to donate blood and encourage you all who are willing and capable to do the same. What this means, however is that Matt, Jack and I will be at the Holy Trinity Festival for pure recreation. We wouldn’t miss it and are looking forward to seeing your smiling faces there.

I apologize for the late notice, I was trying to negotiate with my donor coordinator to no avail. Team Jack will take a break this summer to regroup and find other ways to raise awareness for this deadly defect while helping to give back to our community in medical need.

I am thinking a re-do of sorts on Matt and Kaytee’s wedding. Complete with a reggae band and cook out… or another beer Olympics; all to raise money for the Cincinnati Children’s Hospital Medical Center.

Thoughts, Suggestions, Volunteers?

Cast Free Is The Way To Be

We are finishing up our fourth day of being cast free and I have to say I love it. Jack is so happy to be free from that cast and he is showing it in his attitude. He is so much fun to be around and its a lot of entertaining to see him discover the mobile world again.

The actual un-casting process was a horrible experience for him. The saw was loud and had to come up to his shoulders to remove the bar around his chest under his arm pits. He was absolutely petrified and screamed during the whole process; bursting capillaries in his eyelids and cheeks as he struggled. Once the cast was fully removed, we were able to give him a quick cleaning before a couple x-rays. The x-rays showed that his hip is still in the socket and all is good.

Next we picked up his brace from Hanger Orthopedic. Jack isn’t a fan, but it will help him adjust to life on the go without straining a recovery hip. He will wear the brace for 23 hours a day for 3 months.

All in all, Jack is bouncing back quickly. He is already doing an army crawl while wearing the brace, and he allowed us to bear weight on his legs tonight for a short time. He’ll be up and moving in no time.

And there is a bonus; since Jack was so used to the cast, he is a little insecure without that plaster armour, so Matt and I are really getting in some little boy cuddle time. We are enjoying it to the fullest since we know it won’t last too long.

IMG_20140223_225145

Jack giving his ‘stink face’ as we waited in the office before the de-casting. This is the last time you will see this cast…well, the last time you will see it on Jack’s body.

 

 

 

 

ABM_1393213942 This screen was brought up on while we were waiting for get the cast off. It is a list of all the images that have been taken of Jack at Children’s. The red arrow is a list of the actual images. The blue arrow is of how many images were taken at the time.

 

 

 

ABM_1393214035This is on the same screen as the imaging list. Notice how small the scroll bar is on the left side. I wish I could have had a nickel for all the images that Children’s has for Jack. I would take a small hiatus from work!

 

 

 

ABM_1392916846 After the cast removal, the cast was just tossed into a trash can in the room. It really did look like we threw Jack away.

 

 

 

 

IMG_20140223_224527Jack quickly began to relax once we got home. After a good nap, he immediately went to his play room which had been neglected during the cast period. What a ham bone.

 

 

 

 

IMG_20140223_225015We took serious advantage of our spring-like weather on Saturday. Jack was finally able to ride on this tricycle that he got for Christmas. We took a walk down to UDF, loaded up on chocolate malts (and Funyons for Jack) and headed back home so we could show him off to the neighbors.

“You Should Be With Him If He Passes”

I started writing this post almost a year ago on
the one-year anniversary of Jack coming off
ECMO. It was painful to write so I don’t expect
it to be pleasant to read. It’s probably not one
to attempt while at work.

November 22, 2011 will be a day that Matt and I will never forget. It was the day we were told to say goodbye to our dying son.

Two days previous, I was sitting at Jack’s bedside; the last bed in a ‘room’ which resembled army barracks after a midnight surprise attack. Two long rows of isolettes positioned side-by-side, holding babies who were at any stage between healing and dying. I was still on maternity leave from work and spending my entire days next to Jack. Between Jack’s impromptu naps, we would talk, read books and smile at each other. And I would pray for good updates as I waited for daily rounds.

Dr. Lim and Dr. Frisher approached the bed space with their team of fellows, specialists, nurses and residents.They started talking about Jack’s progress; he was improving every day and was healing well after his CDH repair surgery. Besides the fact that his ECMO circuit had a number of replacement membranes, his biometrics showed that he was ready to come off ECMO and breathe only with the assistance of a ventilator.

After rounds were competed the doctors moved on to the next bedside and left Dr. Lim and Dr. Frisher to further explain their plan. They planned to take Jack off the ECMO circuit and allow his lungs to exchange gasses on their own. A review of the benefits and risks were presented and releases for medical treatment were signed. I was so excited for the progress of my baby’s health and quickly called Matt and then the rest of the family. I was bursting at the idea of Jack getting well and someday breaking out of his medical prison.

There wasn’t much for us to do in the way of preparation apart from finding emotional readiness. This was the next step in Jack’s journey and it was a do-or-die step.This was the only next step.

The morning of the procedure came early. Surgery on these fragile kiddos take place in the NICU right there in the bed space and all visitors are asked to leave the pod so the area can be sterilized. Matt and I would have to make our way into the pod to say our ‘good mornings’ and give our kisses before they could start to ready the area for the 7am start time. We were told that Jack would be mostly sedated with Midazolam (versed) by the time we arrived in the morning. This, however was not the case. He was wiley and kicking off nurses. At first, I was concerned but Dr. Lim assured me that this attitude and strength would come in handy when it was time to heal. Matt and I gave Jack our kisses, told him we would be back in when he woke up and finished some last-minute details with the doctors. Then we were banished to the waiting room.

The waiting room was half filled with our family and supporters who would spend the next two hours distracting us; and doing a great job at it too. Occasionally a nurse would come out and give us a report that Jack is doing great and they should be completed soon. Finally, after 2 hours, the APN came into the waiting room and told us that the procedure was a success and Jack was off ECMO. They were closing him up and will need a couple of minutes to finish up and move the circuit out of the bed space.

I couldn’t believe it. I knew that the intended result of the procedure was to take Jack off ECMO, but was completely amazed that it had finally happened. Looking at that massive machine for 15 days was so de-humanizing and intimidating. And now it was gone.

For the next hour, we sat in the waiting room with anxiety. Evidently, moving the circuit was a little more involved than I thought. But we were soon granted entry back into the pod and were able to see Jack.

When we approached the bedside, I was overjoyed and destroyed. There was no goliath of machines looming over my baby’s body. The space was clean and free from obstacles. But Jack didn’t look like the baby I kissed that morning. He was skinny after the circuit took with it all his extra fluid. It exposed his real weight which was far from ideal at only a little over 5 pounds but with 20 inches of length. With the loss of body mass, the surgical silo holding his intestines outside his abdomen looked large and obtrusive. And his skin had a yellow color; not a glow and not jaundice, but a look of sickness. Something I can’t quite explain. But the monitors next to his bed said they were breathing for him and he was exchanging his own gases. The procedure was a success. I cried on Matt’s shoulder.

After a long visit with the new Jack and a complete breakdown of events from the nurses and doctors, Matt and I headed out. Matt had to go in to work and I was in much need of a shower. I planned to return after my shower and wait for Matt to complete his partial work day.

Weeks of NICU visits at this point had trained me to look the length of the pod to Jack’s bed space before I entered. I wanted that little bit of warning incase something was happening. When I arrived back at the NICU, this was no exception and I scanned to the end of the pod. I could see a collection of doctors and nurses, all still in their green surgery scrubs, standing around the head of Jack’s bed. Dr. Lim stood under the monitors, staring up in contemplation. When I approached the bedside, Dr. Lim had explained to me that after only a couple of hours after the procedure, Jack started to hold his breath and was having trouble exchanging his gases. He was fighting the ventilator though he was still under the control of Midazolam. The carbon dioxide was collecting in his blood and causing it to become acidic. The CO2 results of his blood gasses continued to climb. If he continued this path, even for only a couple more hours, his organs would start to fail, one by one until he died.

I begged that he do anything in his power to stop this and quickly left the NICU to pick Matt up from work.

On our return, the nurses and doctors were where I had left them and there was a little more panic in their faces as we approached the bed space. Dr. Lim told us that Jack’s CO2 was so high, it was no longer being measured by a numerical value. Just a ‘more than’ on a monitor. He asked us to sit down so we could talk. He said that Jack only has about 30 minutes left. They are doing all they can but haven’t found what changes need to be made to lower his CO2. They will continue to work until they find a solution or the end and suggested that we should go sit with Jack. I felt like I lost all control. I couldn’t breathe and double over in my seat, hysterical. Someone handed me a trash can and I started to heave with my head half in my basket, crying inaudible words. This is when we met Barb.

Barb had signed up to be Jack’s primary day nurse and started on the day that he was coming off ECMO. She walked up to me with a box of tissues and assisted me in moving the chair over to Jack’s side so I could hold his hand. She told me to tell him that I loved him and that I should be with him if he passes. Matt came to stand beside me and we held Jack’s tiny hand. I told Barb that Jack knows that I love him and I won’t say goodbye to a baby who has to be okay.

The monitors started to beep louder and more consistent. His heart rate was dropping and his respirations were down to about 6-10 a minute. The monitors were broadcasting that my baby was dying. I said a small prayer as doubt and fear crept into my head but kept ahold of his little hand and told him that he would be fine. He could beat this.

I assume in a move of desperation, Dr. Lim demanded that the RT change the setting on his ventilator. It was a lower setting which would control his breaths a little less and could possible stop the little breathing that Jack was doing, but it was the only thing that hadn’t been tried. The settings were changed and the doctors and nurses stood still, watching the monitors and waiting. After only minutes, the monitors started to slow the alarms. Jack’s heart rate began to rise and he started breathing a little more frequently. His little fingers and toes started to twitch a little. There was such a feeling a slight relief that you could feel the air getting cooler and lighter.

Over the course of the next hour, Jack’s CO2 had dropped to a level which was measurable. Though this was still a critical point, he was moving in the right direction.

Matt and I stayed with Jack until late that evening when the nurses finally kicked us out to return home for some sleep. Jack’s CO2 continued to dropped throughout the night and into the morning. And you know me, I called several times in the middle of the night because I knew that they would be taking hourly blood gas checks until it reached safe levels. Dr. Lim even answered my calls a couple of times that night to give me the results himself. What a dedicated life saver!

Jump forward to present day. Jack is approaching two years old and is on his way to a healthy and ‘normal’ life (what is normal, really?). Though his attitude and feistiness probably saved his life that day, we still defies the slightest assistance after surgeries. He still holds his breath and desaturates. But who am I to coach him on his use of stubborn behavior?

Thank You For Your Prayers

So, we are home now and getting back into the grove of daily life. Jack is doing well and has shown no signs of a cold or otherwise. We all think it was just the little left over funk hanging out in his lungs. I’m sure the lung lavage really helped out too.

Thank you for all your prayers and well-wishes. As you all know, they will never go unused in a place like Children’s Hospital. Regardless of the circumstance.

Jack has already been rescheduled for his second attempt of hip surgery. November 26 is the big day. If you would like to join Matt and I for a yummy Thanksgiving dinner in the cafeteria, that’s where we’ll be. It’s either then, or February of 2014.

So, now we wait again. We are using this time to further our attempts to make Jack the fattest baby possible. The thicker (healthy) the baby, the better the results (recovery). We are also working on walking and vocabulary comprehension. If he is able to tell me where it hurts after this surgery, even in the most primitive sense, I will feel accomplished.

Jack's ice cream obsession