Posted (Tina) in All Posts on September-23-2008

Ella was up again all night, each hour.

The retching overnight is disconcerting. I expect to have it occur during the day sometimes and also with feeding. However, I don’t expect her to wake up from sleep by retching. This has been tough on all of us. Last night, Josh woke up around 4am and offered to take over. He took care of her till around 7am, and then I let him go back to sleep for another 1.5 hours until he went to work. Tonight, Josh is working late and he is going to go to our home and have a solid night’s sleep in our bed. We need to check on our cats. The poor felines. Every few days when we make it home to pick up mail and do laundry, the cats are so lonely. Hopefully, it won’t be too much longer before we are home.

On that note, I think there is a slim chance that it will be tomorrow. When the docs rounded this morning, I gave them the overnight report. Her heart rate is not changed – – it is still too high. Weaning the sildenafil has not changed that for Ella. Also, I made sure that they knew about Ella’s oxygenation. Her color did not look as good and her saturations are all over the place. One minute she is sitting at 100, then low 90s and if she gets upset at all, she desaturates within a second or two. She wasn’t doing that on the higher dose of sildenafil. They agreed that it might be the weaning of that medicine that is causing issue with the saturations and the cause for her dusky color since those symptoms are typical for pulmonary hypertension. To confirm the status of her pulmonary hypertension, they ordered an echo.

The echo did not get completed today which is a bummer. The cardiology team was already booked for the day. And they don’t want to make any changes to the sildenafil until they take a look at what is going on with her heart. So today went by without much changes to her medicines….bummer (makes it feel like there was not much progress). Supposedly, we are on the morning schedule for an echocardiogram.

Also, we are scheduled for labs at 8am to see what her electrolytes look like. Fortunately, since they were unable to draw labs last Wed and Thurs, they gave us a break from blood draws. This was a wise move to let Ella have a break and give her veins time to recuperate. I’m hopeful that tomorrow will go better and they can get the labs they need.

Ella took 90ccs of Peptamen Jr and 10ccs of Pedialyte each feed today. It did seem to cause her a bit of grief, so we will likely hold that density of food throughout tomorrow too. I want to push her to get up to the full strength of 100ccs, but am prepared and realize that might take a while.

The swallow study was this afternoon. It wasn’t much of a study – she only took 8 swallows. I offered her the bottle (apple juice mixed with barium). She took to the bottle, took down several swigs, stopped and started retching. She had such a bad spell of retching (sometimes it is just a few retches, but this went on for several minutes). I had to increase her oxygen to 2 liters and wait a long time to calm her down and try again. After that really bad experience, she was not about to take anything by mouth. I tried purees and by that point, she would take her hand and move mine out of the way. She was so upset.

It was a bummer because it doesn’t give them much to analyze. The good news is that out of the 8 swallows that they did view, she did not have aspiration, deep laryngeal penetration, or nasopharyngeal reflux (through the nose sinuses). However, she does have pooling at the base of her esophagus right before the tightened nissen. We think this is why she is retching so much more post-surgery.

The surgery and GI teams state that retching is normal for a redo-nissen. They anticipate that her nissen will naturally loosen in 4-6 weeks post surgery. Well, tomorrow is 3 weeks and it doesn’t seem that loose. She is retching a lot and hard; pretty much like she did before surgery. We’re hoping that her GI doc will make the time to visit us in-patient so we can discuss our concerns.

Once we were done with the swallow study, we met Grandpa and went outside for some fresh air. It is only the second time that Ella has been out of her room and experienced the sunshine.

Please pray for Ella, that the doctors will be given wisdom and discernment to figure out the best set of medicines for her. Pray for her retching and feeding therapy, that it will minimize with each passing day. Also, that she will be in a stable place soon so that we can take her home.

Please pray for us and our sanity. We only have 2.5 weeks until our move date. We have been stuck at the hospital and not able to start packing for our move. It is around the corner and we are just not sure how it will all get done. We praise Him for placing friends in our lives that are willing to help during the move, but are still stressed about how all of it will get done timely.

Finally, please lift up our new nanny, Kelly, in prayer. We are so blessed to have her come into our lives. Pray that the Lord will prepare her to take care of Ella and that she will be ready spiritually and emotionally for this extremely important task. Pray that all of us can bless each other as we live together with Ella and care for her.

One thing is for sure, amongst all the strife in her daily life, my daughter still takes the time to smile at me…and that means so much. That is what really matters and I’m so glad that she takes the time to remind me each day and keep my priorities straight.

Hebrews 10:35-36 (NLT)
So do not throw away this confident trust in the Lord. Remember the great reward it brings you! Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that he has promised.