Posted (Tina) in All Posts on January-6-2008

Today was a tough day, for Ella and her parents.

We called in to check on her this morning, only to find out that she was having another rough morning since 4am. They switched the continuous feeds to 30 ccs/hour on Friday night and since then, she has not responded well (continuous feeds go from midnight till 8am). Nurse Janet stated that she seemed uncomfortable, was retching and gagging (basically doing everything except throwing up because she can’t since her nissen surgery).

When she coughs and retches hard, it is like dry heaving which cannot be comfortable, so it makes her upset. When she gets real upset, she can’t catch her breath and that scares her, so then it becomes a vicious cycle.

Thank God that Nurse Janet has her tonight again. We have requested that they consider lowering the food volume back to 25 ccs/hour, to see if that makes any difference. We’re not sure if that will happen or not.

Maybe her tummy is just getting too full and is not ready to handle the additional volume. If that is contributing to her discomfort, I can’t imagine a worse feeling without a way to get rid of it. Plus, she has been having intermittent fevers and an elevated heart rate. Today it was 180 at rest and up to 220 at times. Later this evening, her stools were loose.

All of this has made her extremely irritable and fussy throughout the day. She is trying to let us know that she is not feeling well and is having some discomfort, but no one can figure out what that is exactly.

Aside from the change in food, they changed her evening dose of lasix to be administered via her g-tube on Friday too. Her elevated heart rate and lower saturations have been indicative of respiratory stress in the past. So, this has also been considered as a possibility.

It is weird – – she will be content while you are holding her and out of no where, she will start crying really hard. You will switch positions or try something else and she is fine for a few minutes, and then she will get unhappy fast. So, it almost seems like whatever is happening, the pain comes on suddenly.

Today, they tried giving Tylenol a couple of times to see if that would ease discomfort. Also, they tried increasing her oxygen to 1 liter – – that did not seem to make a difference. The nurse tried venting her g-tube more often (before as well as during the feedings), thinking that might ease her if she is having tummy discomfort. But she reported that it would work well for one feeding but then didn’t seem to make a difference when she tried it later in the day. They looked at her gums again to see if she is teething as well as her ears for a possible ear infection. They just are not sure what to make of all of it.

They took a chest x-ray in the early afternoon. The good news is that Dr Saxonhouse reported that it looks better than her last chest x-ray on 12/31/07. So maybe she is not having respiratory distress and that she is tolerating the lasix being delivered via her g-tube. Her urine output was excellent yesterday and is in line with what it was when she was only on straight diuretics via IV. This is a promising sign. Please pray that she can continue to tolerate the lasix via the g-tube without any compromise to her lungs. If she can tolerate it, we would like to have more of her diuretics administered via the g-tube as the week continues, so we can remove the central line.

Ella is due to have labs in the morning. They will check all her electrolytes and it will let them know if they need to adjust anything else for her, including her diuretics. As a side note, Ella weighed in at 10 bs, 8 ounces last night, which is good weight gain for her and a good sign since her urine output is high (not likely due to fluid retention).

Finally, she is scheduled to have an EEG. Please pray that she will tolerate the test. We are looking for the results to give us a better idea of how her brain pathways are working. The idea was to have the test completed early in the morning, so the results will be available by the time we have the meeting with all the doctors at 3pm. Remember that she has already had an MRI, but they want the EEG to balance out the test and give them more information, so they can give us an accurate diagnosis. Because they can come to the bedside to administer the EEG, we were hoping that Ella would be assigned to a nurse that is familiar with her. We expressed our concerns and so it looks like Nurse Marla might have her, which would be great.

In between her fussy spells, Ella was still being herself, as seen above. I think the smiles were good medicine for us, as we are feeling raw emotionally. It was as if the Lord delivered them at just the right time, to let us know that He is still in control and that Ella will be okay, no matter what the circumstances look like from the outside.

Please pray specifically for these things:

  • they will figure out the source of Ella’s recent discomfort
  • she can continue to show signs of tolerating her diuretics via her g-tube instead of IV
  • that the central line does not cause any infection
  • that her IVC although partially collapsed will not incur any further damage
  • that the meeting tomorrow at 3pm will go well and that the Lord will give us wisdom and discernment for the best next steps for Ella’s care
  • that He will strengthen and renew us – – we have felt weary the past few days

Thank you for joining us on the journey. We appreciate each one of you that has lifted us up to the Father.

Steven and Terri Trainer on January 6th, 2008 at 9:20 pm #

The three of you are in my prayers and will be continually tomorrow as Ella goes through the EEG and you meet with the Drs. Trusting God to guide you and give you peace. Much love – T

Laura Marold on January 6th, 2008 at 9:51 pm #

Thinking of you on a rainy southern California night and wishing things were going more smoothly for you. Hopefully, this is the final bump in the road before she goes home (I’m hoping and praying). Her weight is a big plus. Is that why they are pushing the feedings? Sending you love tonight, Laura M.

The Lee Family on January 6th, 2008 at 11:18 pm #

My Ellie wanted to make sure that I checked on baby Ella before I went to bed, I am so glad I did. We pray that God will guide you and the medical team to meet all of Ella’s needs. She is such a precious bundle!

The Lee Family

Kristen on January 6th, 2008 at 11:37 pm #

Love the specific prayer requests. That helps us pray for you! Praying for a solid night’s rest for all of you too.

Laura Sizelove on January 7th, 2008 at 1:14 am #

We’re praying for little Ella’s health to improve and for strength and rest for Mom & Dad too.

laura blackwell on January 7th, 2008 at 2:11 am #

Thanks for the itemized prayer list. It helps. We will pray during mtg. and ask my dad to do the same.

The Brittain Family on January 7th, 2008 at 5:32 am #

praying for the specifics! Go with God today. May He go before you always. Ella is in His arms and we trust Him with you.

Lesli Richards on January 7th, 2008 at 5:34 am #

Praying, especially for 3pm. Love, The Richards

The Lizotte Family on January 7th, 2008 at 6:31 am #

Big hugs for you two and Ella. Always thinking of you and praying for her to recovery.
God Speed today!

Joel Snyder on January 7th, 2008 at 7:19 am #

Ella, I am praying that you will have a better day today and that your test is O.K. Also that you accept your medicine through your G-Tube and that your Mom and Dad get a little relief and wisdom concerning your care. I will catch up on you later. Love, Grandpa!!!!!!!!!!!!!!!!!

Katy on January 7th, 2008 at 7:19 am #

I will be thinking of you guys at 3pm today and praying. Ella is such a doll and I hope you can solve the issue of her discomfort quickly.

Williamsburg on January 7th, 2008 at 8:31 am #

Dearest Josh and Tina – we are holding you and Ella close in love and prayer, aching with you for the obstacles and unknowns while also trusting our Dad to be working everything in this situation for your good and for His good purposes. Not sure how much it helps, but I can’t imagine anyone who would not be fatigued and grieving in your shoes, and I know Jesus has compassion for you in the midst of it. Remember how dearly you and Ella are loved and thanks again for allowing us to share your journey in all its many facets. XOXOXO

Felix on January 7th, 2008 at 8:40 am #

Josh & Tina, thanks for the update. You guys are in our prayers. We pray that Ella’s condition gets better. 10lbs 8 oz…way to go! Keep it up Ella!

Joan and Steve Odell on January 7th, 2008 at 8:57 am #

Dear Hearts – Praying the Lord quiets your fears and touches you with His precious protective hands. Also that Ella is healed and her issues delivered from her. Please know how close you are in thought and prayer – Lord Bless – hugs — Steve and Joan

Matt, Abby, Austin & Caed on January 7th, 2008 at 9:06 am #

Abby and I were in the NICU all day yesterday until about 11:30pm. We thought you both were coming back after shift change and you looked really busy so we didn’t say bye when we left for supper. We both sat and talked with Ella’s Nurse and Caed’s Nurse for a long time before we left. I want you to know that 5 minutes hardly went by yesterday when I wasn’t praying for Ella and for both of you. Abby and I wanted to pray with you last night (we didn’t realize you were leaving at shift change…sorry about that) but even though we didn’t get a chance to pray together we both have been praying for the three of you and have no plans to slow down. I spoke to my Mom and Abby spoke to her Mom last night and they’re going to pray for y’all and get their Church families praying too. We know there are times when you’re broken about this. Times when you and Tina don’t know how much more you can take, that you’re out of resources, time, strength, everything. The great thing is that you don’t have to depend on your own strength to get you through this and God knows exactly what you and Tina are feeling. His Child suffered for us so we could have a chance to choose Him. He actually did all that knowing that some of those that he bled for would reject Him…there is no match for Love like that. That Love paid a debt we couldn’t pay and built a bridge over a chasm that was un-crossable any other way to give the undeserving a chance. That’s the God we serve, that’s the Christ who sacrificed Himself for us, that’s who our Adopted Father is and that’s who is holding Ella, Tina and you in His arms right now. Uncomparable, All-Mightly, matchless Love. It will never cease to amaze me. We’ll keep praying. Please let us know if we can do anything and we’ll see you soon.

Chambers Family on January 7th, 2008 at 11:58 am #

Praying for all of the above and more. I hope that Dr. Kays can figure out what part of little Ella is not happy!

Stacey Haygood on January 7th, 2008 at 12:19 pm #

YOu are in my thoughts and prayers beautiful girl. XOXOXO

Jim and Char Jordan on January 7th, 2008 at 2:48 pm #

We understand the weary part and feel for you and Josh. We always feel for Ella and know that this is so very difficult. We are praying for more decernment for the doctors and especially Dr. Kays. I am sure he is flumoxed too. We love you and are proud of your valiant efforts. Stay the course. God will provide. LOL Aunt Char and Jim

Sheila Par's aunt on January 7th, 2008 at 5:03 pm #

We are praying for you. Trust in the Lord and He will supply all your needs.

Chambers Family on January 7th, 2008 at 7:27 pm #

Just checking in to see how your appointment went… You have been in our thoughts and prayers all day!

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