It has been a long journey. We are still here in the hospital. Feeding and weaning her off from the 2 sedation meds is the main reason why we are here still…the intensive unit, i mean. On the other hand, we have been enjoying her being awake lately. We have been enjoying her expessions and her wiggling. We have been enjoying kissing her all the time. She has gotten more adorable.

WITHDRAWAL. This has been her main issue as they wean her on the last two sedation meds, Methadone and Valium. She has such HiGH doses enough to make me knocked on the ground if I had that. She had to be put on that coz she was on an et tube before and to prevent any pulmonary htn crisis. They tried weaning her drastically, and she did not good. Now they are weaning her off slowly, like 1mg per day and one medicine per day. At times they feel she withdraws, they let her rest for a day. So it  is slower. Now, she is halfway already of the original dose. With the rate of weaning, it may take 2 weeks more before she will be totally off from the meds.

FEEDING. She is on a g-tube continous feeding. Feeding her soley by mouth is not an option for it will use up most of her energy. Eating by mouth will be too much work for her, so the g-tube will be to supplement her feeding. She is currently on 24kcal at 25cc per hour. The target goal is 30kcal. She has not surpassed 24kcal coz unfortunately, something always  comes up at time she’s on that count. There was a time she had a fever and she was throwing up that’s why they had to go back to 20kcal to make sure she is comfortable. We are glad that she has been fed with milk. Her bones are growing and she is starting to get some fat. However, her curve body makes her belly look so swollen as it is pushed more to her right.

PULMONARY HYPERTENSION (pulm htn). They are confident enough that this has been controlled well by her meds. And it was mainly a ventilation problem that made her lungs clamp before. The ventilator is now helping her well. She has been having good oxygen sats and tidal volume. Now they have weaned her off from Bosentan, and will start to wean her off Sildenafil. These are her meds for pulmonary hypertension. We are going with a home vent becoz with her left pulmonary hypoplasia, she will need help in breathing. Her vent settings is 30% oxygen and 7 peep. So, i am hopeful that she can be at times be in room air.

VENTRICULAR SEPTAL DEFECT (VSD). Or in simple terms “hole in the heart” ..in between the ventricles. She was born with this and it has helped her before with her pulm htn. But now her pulm htn is controlled, the vsd causes over circulation. They have to wean her off her pulm htn meds to prevent such. Now, the vsd may be closed through surgery or on it’s own. 

As per last care conference with her doctors, the vsd may be closed first to make sure she is stable enough to undergo the spine surgery. They have not made it a pre-requisite but being a nurse, on surgical area, I know surgeries will need a cardio clearance almost all the time.

Unfortunately, according to the Cardiac surgeon who spoke to us recently as her case was presented to the cardiac surgery group,  Dana is NOT a candidate for VSD closure surgery. Her sternum is rotated due to her spine and her heart is displaced to the right. With the position of the heart and sternum, it is very difficult for them to operate on her. (Sigh!)

CONGENITAL SCOLIOSIS. She is almost 90deg curved when she was born. Now her scoliosis is progressing. Her MRI (and CT SCAN) shows left congenital bar. Her scoliosis is due to fusion of the vertebra which is uncommon and complicated. Her right vertebra has grown normally and separates while her left has remained solid. So as she grows, she is getting more curved to the right. What their surgical plan is to open her, and “cut spaces” on that left part and insert something to preveng it from fusing back. That was just an overview..details has not been discussed yet. Her age is a big issue as well as the most stable age for spine surgery is 3 years old.

It is all overwhelming. (Sigh!)

But will the spine team operate on her with an unclosed vsd? We don’t know yet. Dana’s vsd can be mananged medically but when surgery is included in the plan, it becomes a different ballgame.

We do have an upcoming care conference with them to find the answers to our question.

WHERE ARE WE NOW? It is emotionally battering. We are enjoying the present. She is more beautiful each day. We take each day as it is. Tomorrow is always scary, well to me at least. If we have to wait for 3 years, how will the progressing spine affect her. Will it make her suffer? If she undergoes surgery at this age, what will her chances of survival be? Or will she be able to heal well. Too many uncertainties.

No words can describe what we feel. All we want is to her not to suffer. All we want is for her to heal. Seeing her with a trach and g-tube is painful enough. If she wasn’t as bubbly as she have become now, i don’t know how i will be. Looking at her and seeing her smile or just even move makes us hopeful. 

We can only hold on to God to keep our hearts stronger. We pray that her VSD closes and her spine grows normally that the curvature does not progress.  We pray for her comfort. God has shown us miracles and we continue to believe that He will help Dana. We beg you all to help us pray. 

Each day we are with her, we enjoy. We enjoy her little expressions, her smile and her wiggling. I am scared and terrified with the uncertainty of tomorrow. We pray for strength for Niel and me. We don’t know what tomorrow is but we exactly know what we want it to be. We want Dana healed and enjoy her growing years. 

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