Shabby Blogs

Sunday, July 26, 2015

Follow-Up appointment!

This past Tuesday Jack had a followup with his cardiologist in town. It all went well, he was so cooperative (which surprised me after all he's been through), he had a great Echo and a beautiful X-ray. Dr. Weineke asked me if I had been watching his oxygen saturations at home and I told him that I had not. I explained that I needed a break from watching them. He told me to take a good break for the rest of the week but to start watching them again this coming week. Boo. Honestly his oxygen saturation is the most depressing thing for me right now. Its hard to look back at pictures and see how pink he was at 92. Now he has cyanotic episodes that are really hard to watch. Then his night saturations are REALLY terrifying! 50s and 60s are not good for anyone! I'm hoping and praying that his saturations are settling out and will stay in the 70s at night.

Otherwise Jack has been doing good since we've been home. He takes all his medication really well and hasn't been fighting the oxygen placement at night! I've noticed he is trying to say more even though I'm probably the only one who knows what he's saying. Tonight he didn't want the rest of his dinner so he said "Hudsie eat" and Hudson happily accepted it with a "tank too." It was cute! Jack had also been talking in his sleep. The other morning I got up and heard him say daddy over the monitor. I ran back to his room and he was sound asleep. Multiple nights he has said "Hudsie" and laughed but the other night he said "Bye Hudsie" and cried. It broke my heart because when I touched him I realized he was asleep. I'm sure those weeks were hard on both of them.

Our plans for now are too watch his saturations until his follow up week after. MUSC called and they are deciding which clinic to place him in, so I will let you know more on that later. We are going to SLOWLY resume therapy because I don't want to push him too quickly! I want him to be happy and to heal!!

Sunday, July 19, 2015

Home sweet home!

We finally made it home on Thursday! There was a lot of debate about Jack being on oxygen and after lots of consideration it was decided for Jack to sleep on oxygen. I honestly was confused about the debate because I thought Jack slept better on the oxygen and his saturations weren't teriffingly low as they were without. Without he dipped into the 50s. That's scary! I called Jacks home cardiologist because as we all know, some docs are easier to talk to than others. He is so wonderful and discussed the advantages and disadvantages of the oxygen.  I was all for it once he explained it! The oxygen is essentially therapy for Jack's lungs because it relaxes the pulmonary vessels to allow more blood in to be oxygenated. Then your vessels begin to have "memory" and stay relaxed. It doesn't always work but we need it to so Jack can be accepting to the new plumbing of the Fontan. Since we arrived home Jackson and I have been determining the safest way to do the night oxygen since there are cords in the bed and the best ways to keep it in his nose. We tried not to use tape since his skin is so sensitive, but ultimately had to use tape, and found some tape that doesn't seem to breakdown his skin so much. We've slept a lot and all of us are almost settled in again and not so exhausted!
Tonight Jackson and I were watching Jack play and apparently thinking the same thing. Jackson looked at me and said,  "Doesn't it seem surreal that just two weeks ago we almost lost him and now he's sitting here playing and everything is ok. It feels like that was forever ago!" It is weird how quickly things went for horrible to good. I think we both have compartmentalized it in our heads and that is amazing to me. It's a God thing and we both said when it went down, either way God's got this! We prayed for him to take care of our boy but give us more time and he did. I don't want either of us to go back to those emotions again and I hope that we won't have to. For now we've decided no worries and we have to live in the moment and love our kids like crazy! What else can we do- God's got this!
Thank all of you for all your prayers. We know there were so many coming in and He was listening. Jack is so lucky to have so many amazing people in his life with so much love to share with him!
Next followup is Tuesday here in Columbia and the following will be in Charleston. He will be watched closely for a while, and that makes me feel good! He's is great hands!

Some photos since leaving the hospital! He is sure happy being home!!!

Monday, July 13, 2015


Jack has started doing much better since my last post. His stats have risen slightly and he hasn't needed oxygen the past two nights. We feel sure he had a little bug or infection he was fighting. His stats now are lower than before we had his procedure and lower than I had hoped they would be. They will hopefully get a little higher as his body continues to adjust. We've talked to the docs about some short term plans and long term ones including transplant. We've learned that having the third surgery and being done is a big misconception so it's nice to think there is a secondary plan if that's the path God has planned for Jack. Taking it one day at a time for now because I could go mad worrying about the future which I have no control of!
Since he's been feeling and looking so good the plan is to go home tomorrow as long as he doesn't start any funny business! Pulmonology is going to come and talk about the possibility of a CPAP machine or a tonsillectomy, which I am in no rush to do.
Here's some pictures of him playing today. He's looking so much better!

Saturday, July 11, 2015

Slowing it down

Poor Jack. Today was much the same as yesterday. He's very pale and puny. I'm working on my communication with the docs because I'm trying to tell them Jack is sick and they keep explaining how the fenestration works. Two days ago Jack was happy and pink and he had two chest tube.  His stats were in the 80s even through the night. Yesterday without chest tubes and today he's got lower stats, ran fevers, hasn't played or talked much. Something's brewing but I don't know what. I hope last nights rosephin helped but I also hope it didn't mask it. His X-ray today showed pulmonary edema in his right lung. Today they also decided to drop a dose of lasix. I think we need to slow the train and give Jack some healing time! It was just over a week we were told we may lose him. Tomorrow the plan is for a full blood work panel and X-ray. I'm sure he will be on oxygen by morning because he's been destating at night and they will likely be adding the lasix dose back. Jack is slow and steady and he needs that for his healing. Hopefully tomorrow I can fight for him so he can get the time his sweet self needs!

Friday, July 10, 2015

Feverish day

Jack had another rough day today. It was so sad since yesterday he felt so good! Jackson and I have been keeping a hotel room for a few additional nights to try and catch up on all the sleep we missed last week. Last night was my night to sleep there and he called me early to let me know Jack's oxygen stats were low. I hurriedly got ready and he called again to let me know they thought his pulse ox band wasn't reading well and he looked good again. When I arrived I kissed his head and though he was feeling warm. His stats were lower than they had been and so I asked for a temp. It was slightly elevated but he had just gotten a dose of Tylenol.  During rounds they let us know his X-ray looked awesome and that it was time to pull the chest tubes because they had essentially worked their way out. They also wanted to stop Tylenol to see his actual temperature.  Some heavy drugs were given so he wouldn't remember the tube pull and they came out great!
A short time later his lunch arrived.  He quickly lost it and had an oxygen drop. Following his oxygen went from the 60s to the 90s and everywhere in between. His toes and fingers were extremely blue and his face was ashen. Jackson and I were extremely worried along with all the nurses and physicians assistant. By the time the docs got to his room most of his color had returned and his stats were good. There are lots of new nurses on the floor and most don't know Jack's baseline but thankfully there was one nurse that knew him well! She told the docs that he had not been himself all day and that he is usually waving and blowing kisses to everyone. He hadn't said a word all day! After about an hour of me expressing my concerns to everyone they agreed something else non-cardiac was going on. Blood work showed elevated white blood cell count which would explain his fever and how terrible he's been feeling, but what it is is unclear. They are checking for blood infections, urine and viral swabs. One of his ears looks irritated so I'm hoping it just an ear infection and he's been through so much it's hard on him. I will know more tomorrow.
Poor Jack. I just feel so bad for him right now. Hoping he can start feeling better tomorrow.

Thursday, July 9, 2015

Family, sunshine and lots of play

Jack had another restful night considering all the equipment still attached to him! This mornings X-ray showed edema so the docs added a third oral diuretic to the mix in an attempt to avoid going back to the IV ones. That was his only change for the day and we were so happy with that since we have had such a rollercoaster week prior!
After rounds we went to meet his cousins in the beautiful Children's atrium! All five went from station to station, playing with Jack like nothing was going on with him. I love the innocence they have and I'm sure it was good for Jack to have a little normal in his life! After lunch our sweet friends stopped by and I'm sure we are scaring them to death since their daughter Abigail will have her Fontan in the spring (don't worry Stephanie, Jack re-writes the rules)! Then we went outside!!! I think the sunshine and fresh air was so good for the three of us! There are beautiful gardens around MUSC and I have a trail I love to walk when we get these wonderful 30 minute freedoms. After a short playtime in the atrium, Jack decided he was ready to "eeeeeat." Before bed he Facetimed with his brother and they pretty much said "nite nite" but it was cute seeing their little faces on the screen.
It was healing to see him so happy today! We've got his chest drainage and a few other concerns but I'm amazed that he has not suffered any developmental regression after all of this! He's been walking, talking, coloring and drawing his "curcles" (circles) just like he was before! That is so amazing to me. God is Good!

(My pictures are out of order and I apologize if they are too large. The website I blog on isn't a fan of my iPhone !)

Wednesday, July 8, 2015

Peds Cardiac Step Down Unit

Jack had a good day today. This morning in rounds the docs asked if we would be comfortable moving to the step down unit. He was stable and they needed the bed space for some sick children (prayers for all those babies and children). They knew he was ready but wanted to make sure we were on the same page after all he's been through. I had a lot of reservations but realized that it wouldnt matter if it were today, tomorrow or next week I probably wouldn't be 100% ready anytime in the near future. We agreed to move as long as they watched for a bit as they were weaning the last IV medications. Everything went well so we headed up to 8D. In his new room he can have more visitors and he loved seeing his brother. As soon as they saw one another they kissed and hugged, shared toys and snacks, and played. They had missed one another.
Today an ultrasonic saline mist therapy was started on the burns on his skin and they will know in a few days if it is helping. It amazes me the things that help us heal! This evening Jack's pain got ahead of his medications but I think we have it back under control. I cannot imagine how uncomfortable it is to have a tube going between your ribs on both sides!
We had a special visitor this morning in the PCICU. Rebecca and her beautiful children came to deliver the baskets they put together for the newborn babies with special hearts, in honor of her angel Annabelle. It is such a nice thing to receive and helps the new moms "dress" their babies the only way you can when you can't hold your baby! She's also so supportive to CHD moms and she and her husband have been to Jackson and I.
Our plan for now is to hang around here and watch these chest tubes. We are so nervous to even think about leaving MUSC, or Charleston. I'm sure we will get there but we are taking it one day at a time!

Resting in his new room!

Tuesday, July 7, 2015

Restful night and day

Jack had a wonderful night and day. He is not consider critical so his shift nurse will now have 2 patients instead of just him.  He has gone from 4 liters of oxygen on Sunday to none today! They are weaning all his IV medications and working toward oral medication. Today his platelets were up, from his transfusion yesterday, so they will look at them again Tuesday morning to make sure they are holding steady. His liver is still healing but is almost normal levels. Chest tube drainage is minimal but he started eating today and will probably have an increase overnight. Overall he is doing really well, is weak and sleepy, but loving snuggle time! So am I because it is healing my heart too!

There is talk of sending him to 8D, MUSC's cardiology step down unit Tuesday. Jackson and I are very nervous about the move because it was only days ago we were told he may not even make it. We will probably ask for one more night to ease some of our fears. Over the last few days he has had a lot of medication weaned. This concerns us because many of these medications can only be administered in the PCICU. His chest tube drainage has more than cut in half everyday. This is partially because he has not eaten and because he has been responding well to a medication they weaned today. He just was pulled from oxygen and began eating solids. Considering all these variables,  we would like to stay one more day to watch him. It's easier to go up than down and the life saving tools are in arms reach in the PCICU.  I hate sounding so negative but I want to be realistic!

Jack is looking great overall! He has some medicine burns on his forearm from Wednesday where they pumped in the life saving medications. They are internal but seem to be working outward. The wound care specialists will begin an ultrasonic therapy on those burns tomorrow to begin their healing. The hope is that his skin will not start to break which would put him at an infection risk.

Thank you for your continued prayers for him! We have been so overcome by the outpouring of love! We appreciate all the prayers and reassurance!

Monday, July 6, 2015

Half smile

I cannot believe what has happened since Wednesday and the unbelievable turn around he's had. Im sure he's gotten a boost from the platelets but I will take it!! He's still healing but it fills my heart to see his half smile! He's a fighter and a blessing. Thank you for your continued prayers!

Friday night



Successful PICC placement

THANK YOU for all the prayers, thoughts, and love for Jack. I am amazed and emotional over what a resilient boy he is and how many lives he has touched in 4 years! We appreciate the support everyone has given us!
As I'm sure you can imagine, this morning was filled with nerves for Jackson and I. We spoke with the cardiologists and anesthesiologists, asked them lots of questions and voiced our concerns. They shared our concerns and explained their plan to get through the procedure as quickly and easily as possible. He had several risks, mostly his episodes in the past days but also the fact that he has had several PICC lines can make placement more difficult.  He had to receive donor platelets before hand because he had bottomed out and they were not coming up.
The procedure only took one hour! They had told us two but I think that was so I wouldn't have a panic attack if they went over the normal amount of time. The were able to only use a mild amount of sedation so he could breathe on his own the entire time. He has fewer medicine lines now and it sounds like he will have even less by day's end.
I never took any pictures of him Wednesday, Thursday or Friday because I never want to think of him like that again! I can say that he has made a huge turn. He's warm and pink and I want him to stay that way! In the days ahead they will keep weaning medications and oxygen, watching his platelets and liver, and monitoring his chest tube drainage. He's had significant output. He drained a liter the moment they placed the chest tube. His five day total is 3.02 liters or 12.75 cups. He's on a medication to help dry the effusions but he is reaching the time limit he can be on it. Also he has not eaten (he's back on the fat free/low fat diet) and when he does it will his output increase some. We got lots of hurdles to overcome but he has made a dramatic turn. Thank you for praying for this sweet boys recovery!

Sunday, July 5, 2015

Pray for Jack

We've been on a rough ride lately. I've always felt so fortunate that Jack's surgeries have gone so well, having some minor complication, but Jack always battled on! In April we began to notice changes in Jack. His breathing was noisy. We took him to the doctors and were reassured when his lung sounded clear, stats were good and heart function was great. Seasonal allergies were the logical culprit. The weeks kept going and the noisy breathing continued past allergy season. Again more reassurance from doctors but with a plan. Four days of nebulizer treatments and if he wasn't better we would get a pulmonology referral. Days later Jack earned that referral. June 18 Jack had a cardiologist visit. He looked and sounded good, oxygen saturation was 92% as always. The following Monday I began to see marked changes in Jack's breathing and the way he was feeling. I called pulmonology to see if we could get in sooner on a cancellation And he was able to go in on Wednesday. In the office his oxygen saturation was only 86%. Thursday evening he began labored breathing and I knew we had something much bigger going on than noisy airway and a wet cough. I loaded him up and drove to MUSC. The ER was thourough and cardiology saw edema around his lungs on X-ray. He was admitted for further testing on Friday.  Friday's X-ray and Echo showed large effusions on both sides of his lungs and the echo showed the culprit!
Jacks last open heart surgery was the Fontan. It takes the main vein from the leg and connects it to the pulmonary artery completing the bypass of the right side of his heart. Jack had a fenestrated Fontan where the surgeon left a "pop off valve" into the right heart to relieve pressure. Jack should always have passive blood flow through his body. Some Down's syndrome individuals (and many other single ventricle people) have higher blood/lung pressures which works against the Fontan flow causing a dangerous back up. The fenestration "pop off valve" allows that pressure to release and some blood to mix. Now that Ive explained this I can explain what's happened to sweet Jack.
Jack echo showed his fenestration had closed by his body "healing" it. We scheduled a heart cath for July 1 to reopen his fenestration and reduce the high pressures, so his chest could heal and stop creating the effusions. During the heart cath Jack had a dangerous build up of pressure and his heart sent un-oxygenated blood to all his organs. His blood pressure and oxygen dropped damagingly low. Thankfully a quick working team stopped him from getting to the point of needing compressions, got him to a stable point, placed chest tubes to relieve his fluid, and reopened and placed a stint in a new and larger fenestration. During the episode Jack's liver and kidneys were "bruised" the liver taking the biggest hit. His pulmonary bed in his lungs were shocked from the high pressure and large amounts of fluid around the lungs. His blood pressure was supported by maximum doses of three medications and was still bordering a dangerous low. His blood profusion to his hands, legs and feet was poor leaving them extremely cold. He was filled with fluid and running a fever that was not responding to Tylenol. The only good thing was his heart function.
Thursday the doctors began a method of weaning him off the blood pressure medications and ventilator. All was well until 7:30pm when Jack had a second episode like he did in the cath. It was a very traumatic experience for Jackson and I to witness and it seemed no one could answer our questions. The only thing we heard was he needed off the ventilator.
He had a third "mini" episode through the night. The staff shift changes occurred and a new cardiologist came on for the weekend- Dr. Zyblewski. In all our time here we have never had the privilege of her working with Jack. The team came to discuss Jack and she asked Jackson and I what we understood about the events and Jack's anatomy. She got paper and a pen and drew Jack's heart and explained the Fontan as I did above and then told us what has been happening. Jack has Fontan failure. That hurt. He has to have the fenestration or it causes the dangerous back ups and it could still happen with the fenestration as it did. She said if I had not brought Jack to MUSC the day I did he would likely not have made it the following day. She said many kids with Fontan failure will not make it to adulthood and most have liver issues because the liver is the first organ to hurt. Finally she explained that we had to get Jack off the ventilator. While the vent kept him alive it also worked against the Fontan increasing his blood/lung pressures putting him in a worse situation.  He had a 50/50 chance that he would be able to come off the vent.
Honestly the team didn't expect he would be able to not be supported by the ventilator considering the reaction he had the day before. We composed ourselves and called the family to come be with us and see him. Dr. Zyblewski is incredibly smart, methodical and conservative. She told the team her plan and things she wanted to change and the order she wanted to do it all. Medications changed and then it was time to start weaning. The combinations she had created Jack responded to well. His blood pressure began to increase, his oxygen saturation increased and his fever broke. His hands warmed and by the evening his legs were warm again. It had taken all day but he had come a long way and was stable. Since the same team was going to be on in the morning and he was so stable she wanted to wait to pull him from the ventilator. Jackson and I finally had the ability to eat and went to the cafeteria with Hudson. When we arrived on the floor a team was surrounding Jack and he was fighting. He had woken up after lingering anesthesia wore off but Dr. Zyblewski said he woke appropriately. She again came up with her plan to go ahead and pull the vent since he ws ready.
After the pull he was agitated but was improving. Saturday she gave him tons of diuretics to pull fluid off of him from his cath trama. She added medications to try to dry up some of his chest drainage. Saturday he weaned off all blood pressure medications, nitric oxide and oxygen support. He had a restful day and night and today is looking much better than two days ago.
There are still concerns about his health. His liver is healing but slowly. His platelets are low and he may need donor platelets later today. Jack will be in the hospital for an extended period so he is going to get a PICC line tomorrow. We are EXTREMELY nervous about another round of sedation but it has to be done.
Please pray for a safe sedation and continued recovery.