Day 176: Pulmonary Floor .. (very late post)

   

      I posted this on facebook on the 27th of September but haven’t blogged. Let me bring you back to that day again.

Day 176: We are now in the PULMONARY floor. We are finally out of ICU which have been our home for 6 months.
  

 We are very grateful to all the medical team who took care of her, people who worked with us to help her get better. We thank everyone who prayed for her healing and kept her in their thoughts. God bless you all.         We continue to pray for her healing. We pray for a very good night for her on this new place. I am grateful for my husband for being a good father and a partner…for making sure that she is fine while i’m miles away..especially today. 
      NWe have a great and good God.

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Day 167: Seven Good Days

12041891_10153679529951967_1770452555_n     Seven days to observe her then we go to the pulmonary pediatric floor. That means that if she does not desat or her oxygen sats does not drop below 85% for unexplained reasons, or if she desats and goes quickly back up, then it’s considered a good day for her. So we start counting!

When babies cry, poop, cough they all desat. It’s not like Dana is not allowed to do that. But the medical team in ICU wants to observe her for good 7 days that if she desats, she will be able to go back up. This means also when she hold her breath to cry or poop (or pas gas), she is able to relax after and breathe well again. This is because when she desats and it takes longer for her to recover, her heart rate drops and that’s where we get scared.

She desats mostly due to position of her trach. When she moves, it hits the tracheal wall and then she begins to be uncomfortable coz she can’t breath. We just position her again, she does well when her head is hyperextended (not to much that she gags on her saliva).

When her trach is positioned well, she is just happy. Dana has been a miracle all this time. She has been one strong baby. Now, she is hitting milestones little by little. But with the little that she can do, she gives me and her dad more than 100% happiness.

IMG_5182  Dana has severe congenital scoliosis that affected her lungs. As she grows, her curvature may progress (or may not) and she may need a vent to help her with breathing. Can the scoliosis be corrected? Yes. And she is seen by the best spine doctors in Scottish Rite Hospital here in Dallas but with her being so small, she has to grow to be able to fit the smallest instruments for the surgery. So the plan is to let her grow first.

And while she grows, we are enjoying her milestones. She is getting there slowly and discovering herself. She has already two cute teeth and another tooth is coming out. She has become a drool machine. She is now able to raise her arms and legs. She is now able to reach and hit her mobile toys. Even with her trach, she manages to giggle while playing. Those chubby cheeks of her are so adorable.

IMG_5130She is slowly achieving her milestones and we will be there to celebrate it. I never knew that a simple kicking of mobile toys or a big smile from her would be giving an unexplainable joy. So this is how a mom feels and loves… that a simple feat from your child seems to makes the whole world seem to be a happy place. It makes me forget how bad my day have been or whatever stress I was feeling. I thank God for this opportunity. I thank God for our baby.

IMG_5181So here we are praying that she is able to have a good 7 days with the Trilogy Vent. We pray thay she continues to tolerate it and that if by any chance that she desats, we pray that she is able to breathe well again and get her oxygen sats back up again. We continue to pray that she is comfortable. We pray that we will finally be transferred to the floor and then to Our Children in Baylor (rehab) where we will be trained to take care of her having her vent.

And I will beg everyone who reads this blog to please include her in your thoughts and prayers that she makes it. Include her please in your thoughts that she will have good 7 days starting today. If she doesn’t, we believe she can do it again. God has a purpose for everything. He has a purpose for making is stay long in this hospital and we are grateful for that (as baby Dana now is in a much better state). And no matter how she dictates her course, me and her dad will continue to be with her in this journey with all our heart. We have a good and great God.

Day 118: TRiloGY

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 Finally, Dana has been transitioned to a home vent called Trilogy. She was previously tried on the other called LTV but she unfortunately didn’t do well with it. This Trilogy, they say, is more suited for her because it gives her breaths the moments she breathes.  

       We are going home with it. And it is so compact that you can place it inside a backpack whenever we will go outside. I pray that she does well with this one. Her pressure support has been raised up and she seems to be breathing and working hard but hopefully, she settles down. If she finds it hard, then we are going to go back on the ICU vent again and try her back on the Trilogy for 2-3 hours again until she gets used to it. But, if she does fine, we are just going to get a good setting where her blood gases will be normal/fine and where she doesn’t retract much when she breathes. 

       Staying in the hospital, unfortunately, makes it hard for her sometimes to go with the plan. Like for example, last week when she had an infection on her trach. It was so bad that they had to eliminate all factors that will cause fever and discomfort. She wsbstarted with antibiotics but she still runs fever on it. They had to take-out the PICC line which ended up her being stuck all the time. Initial blood cultre was postive but peripheral was negative, so it may be just colonized. When the blood cultures came out negative, they had to put a new PICC line. But her veins were so bad that the team couldn’t see a good vein for that and the attempted central line on the groin was unsuccessful as well. They had to go to radiology to place a PICC but she still has to have a temporary access. They has an IO placed on my baby. I came rushing to the hospital and found it on her. They were also getting an EEG on her to make sure that she did not have seizures. 

   

  I am so glad that week is over and with the lines she had, she was able to get her antibiotics. Eventually her fever subsided and she felt better. They took the IO access the moment radiology placed PICC on her. 

But that week, we had to go up on a lot of things just to rule out factors that contributes to her agitation and restlessness. They had to go up on her methadone and valium and her vent settings (pressure support, PEEP, oxygen). They had to go down on her calories to 20kcal and the rate. But like I said, now we are going back to where we where before she had fever.

        So, we pray she will do well on this home vent. It will help her breathe well while we go home and wait until she is ready for her spine surgery. She will go home for a while and be a baby. That will be really something I will look forward and hoping for. Prayers move mountains.

       

  

   We are really thankful for the team who are taking care of her, finding ways to get her what she needs. They were calling us 3am last week and I know everyone was on their toes to get her an IV access. They just don’t know how grateful we are for them not giving up on finding solutions to very difficult situations. Our prayers are continously answered as we see them.

     So we are still here though, and it will be Dana who’s going to determine and tell us when she is ready. She is a fighter, but we just don’t want her to struggle. We get to be asked every about her and we believe that she is getting better. We are making baby steps in this hospital but that works for her fragile body. 

      We continue to pray for her healing and we continue to ask for prayers. We are thankful to all who have helped us go through this far. It’s not easy, but we are thankful that we get a lot of support. In this hospital, the nurses, doctors, palliative nurses, social worker and chaplain make sure that we, as parents, are able to take care of ourselves and are able to think what we need for her at home. There are days that are rough, and it may come again but we know that things will be better. 

      So for now, let me go back to where Dana is at right now. We pray she does well on this home vent. We claim it in God’s name.