Posted (Tina) in All Posts on August-28-2008

Although Ella woke up a few times, we did get sleep last night. Thank God for the air mattresses – – that made all the difference.

I’m so glad we caught a little shut eye. I think it helped considering we had a rough morning. Ella was really congested and we could just tell that she was not getting better. The PO Lasix (oral form) did not make a difference and we were ready to let them know that we were not interested in testing it any more at this stage.

The pulmonary team has been treating her fluid issue from a chronic, long term management perspective. This is really important, however with surgery looming in the coming days as well as a holiday weekend where medical professionals are limited, we want to switch to acute mode. We know Ella needs to get more dry and we want to start to see her condition improve. I don’t think that is too much to ask considering that we have been here since last Saturday and her condition has not changed much.

The pulmonary doctors have admitted that the combination of diuretics that might work right now to manage her fluid might change after surgery because they think that the hiatal hernia is a major contributor to her overall issues. The doctor came in to do rounds this morning and discussed wanting to continue the PO Lasix, maybe just increasing the dosage. Since we have so much experience with PO Lasix not working, we tried to explain that we were not comfortable with that course of treatment. We want to use something that we know works – – and right now – – that is IV Lasix.

The pulmonologist is not convinced that IV Lasix works and tried to sell us on PO Lasix. When he was not able to convince us, it became very apparent that he was frustrated. Unfortunately, he started to show attitude, not something you expect from a professional. I don’t think he is used to a collaborative method where parents are so involved in the decision-making process. I don’t think he wants to have to sell his ideas and the reason why he wants to take a certain course of action. Or if he does, he is not used to parents that are armed with information and challenge him to further explain when things don’t seem to line up.

Here’s the hard part: this is a great doctor and I want to rely on his expertise. He has vast medical knowledge. We have extensive knowledge when it comes to our daughter and what works for her. A great doctor is able to take both perspectives and come up with a good plan of action, so all parties feel good about the next moves. It seems like we were able to do that over the past few days, but then, Josh and I were not being very aggressive. We were trying to give him the freedom to treat as he saw fit. We became more aggressive today when we have been here since last Saturday and she is not showing signs of marked improvement.

It was hard for me. I was offended by his attitude and how he patronized us. In the end, it doesn’t matter. But I’m certainly not looking to make enemies at the hospital either. I don’t like the tension. This happens every once in a while with doctors and nurses. They don’t appreciate that we are so involved and are armed with knowledge. We question and ask and need to be convinced that a course of treatment is the best for Ella. If it doesn’t make sense, we want a better understanding. This adds more work to their job of practicing medicine.

So once the meeting was complete, we convinced him that we want another IV in Ella, so she could get IV Lasix. If we are going to stick with Lasix and try it, we want to give her IV Lasix so it will be more fast acting. And trust me, that was a hard decision. Most of you know what a tough stick Ella can be and how getting an IV can be really exhausting and take several attempts.

Our nurse helped us find a good stick. Her name was Stephanie from the flight team. She tried once in Ella’s hand which was unsuccessful. So she moved to her left foot which is already bruised from other attempts as well as the last two IV sites. But Stephanie was able to get an IV – – Praise God. She is now on our preferred list.

The labs came back from when they did the IV. Her BUN was 18, so basically the same this whole week (it has fluctuated between 16-19 since a week ago when we went to the pulmonology clinic appointment).

While Ella’s IV was being placed, Josh went to meet a good friend who was in the lobby to visit us at the hospital. We’ve missed him so much. Although Josh sees him on a semi-regular basis, I had not seen him in well over a year. It was so nice to reconnect, get a strong hug and feel the love from a brother in Christ. It was neat for him to meet Ella in person since he and his entire family have prayed so much for her over the past months.

So, after lots of arguing with doctors, they gave her a dose of IV Lasix (twice as strong as the dose over this past weekend; 2mg, per kilo). Her first dose was at 11am and she had a diaper of 215. The second dose was at 6pm and her diapers right after totaled 115. She is due for another dose at 2am. So, her urine output has been good so far, but the other test comes in the morning. Does her BUN show that she is getting drier? And does she have any weight loss? She has not had any significant weight loss this entire hospital stay.

Also, the doctor ordered a Nephrology consult to get their opinion on the Lasix. According to the nephrologist, he did not think Lasix will work at all. Because it is another loop diuretic and she is already on the highest dose of Bumex (which is 40x stronger than Lasix), there is no indication that Lasix should make any difference, whether delivered PO or IV. And although Bumex works, we can’t give more because Ella is already at the limit for her weight and any more of the same drug could be toxic.

If we go to tomorrow morning and IV Lasix does not work either, then we will have to reconvene and figure out another way to get her to dry out. We wanted to try the IV Lasix because it has always worked before in the past. The only other option will be to use a completely different type of diuretic. The bummer is that other types of diuretics tend to have higher risk of side effects. We were trying to avoid trying anything new in Ella’s system since 1) it will be the weekend and harder to adjust with the weekend staff and 2) may not work at all and 3) might cause issues. But if things don’t show improvement in the morning, we may not have a choice.

The nephrologist also recommended getting a renal ultrasound to check Ella’s kidneys. They did this once in the NICU, but her kidneys have not been checked recently. With all the massive amounts of diuretics in her system, we want to make sure that we are keeping on top of her kidney status. We went down at 3:15pm and Ella loved getting out of her room and checking things out around the hospital. We’re hoping to hear the status of the renal ultrasound tomorrow.

One of Ella’s CDH friends named Cayden has reherniated and is having diaphragm repair surgery tomorrow. As you know, this is a major surgery. Please lift him up in prayer that the surgery will be successful and he will have a short recovery. Also, there are a few other CDH babies that are on ECMO right now fighting for their little lives. Please pray for these babies and their parents, that God will give them strength to sustain.

Please pray for Ella to have a restful night and for us to have a clear answer on her latest diuretic challenge. We would love for the IV Lasix to make a difference. But if it does not make a difference, that the Lord will provide wisdom on the next best steps for our baby girl. And for me and Josh, that He will continue to provide us with a peace that only He can provide.

Galatians 5:22-23
But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.